I just don't know...

It's really hard to talk about sometimes. I wonder if there isn't more I should be doing? I have finally had to admit (to myself) that G is not going to be ready for mainstream school next fall. Not only is he super small, he just doesn't understand things other kids do. I am so tired of fighting teachers and doctors who's response is mostly "he'll be fine". You really cannot expect my child to wash his hands and get in a line without a reminder. He can't color or write his name. He doesn't even want to try because his little flexible hands can't maneuver pens and such. Then there is the whole can't smell issue...how do we cope with this? How do we teach him that other people can smell things and he never will? How do we teach other people that he has no idea what a flower smells like, or home made cookies? How did he bond to us as an infant without smelling? Did it happen later? Was he 1 or 2? Did he fall and hit his head to cause this? Was he born that way? It's really hard not to just cry for him. How can I fix this? I am trying so hard to be strong and fix everything that comes up to make life normal for him but how can I make this better? Could be worse, it can always be worse. What if there is a fire? He can't smell the smoke. Maybe we should avoid a home with gas in it, he could never spot a gas leak. How as a mom can I make this better?

He got sick over the weekend. Not sick sick just noticed he lost his appetite, well what he has of one. He went almost 24 hours without urinating. After a trip to urgent care and a rash and ER visit later we have nothing. I am hoping it was indeed nothing. Still can't get him to eat much. Do I sit on him just to shove a few bites of turkey in his mouth? I hate when people judge that you are a horrible parent based on what you feed your kid. I find it awesome you can get your kid to eat some tofu and organic juice. Mine won't even drink juice or eat vegetables. Of course now knowing he has anosmia and can't smell anything makes more sense as to why he won't eat things that are pretty normal for even a picky child. But again, how do I fix this? This could be another reason for FTT but why? Why? I just want some answers. I just want a reason. Something to point us in the right direction, a reason that will allow him some extra attention in school. I worry now even more. But I am just happy that he is such an awesome kid. Even when he should be feeling pain and discomfort he will smile and appreciate the music in his heart. I just want to make things easier for him. Just not sure how...

Medical Staff: please don't play telephone, it's a horrible game.

At my wits end with medical people. Please, please listen to the parents. At least acknowledge that we know our children. After all we do live with them. I am so frustrated with no explanations...just do this and call us later. Really? Yeah, ok and I should trust you why?

I don't know what to do but I regret this facility and the decision to come here.

They are so focused on the constipation and not WHAT is making him constipated. I feel like no matter what I say/explain or otherwise they think this is a new problem and ugh, whatever. I thought of writing a letter to them since the person in charge keeps sending messages through other nurses.

Dear ARNP,

We came to your facility looking for answers to a life long problem our child has. Since birth he has been constipated. After 2 years of making appointments, visiting various urgent care clinics multiple, more than 15 different times in less than 2 years asking what is wrong only to get blown off, they did an x-ray in the middle of the night at an ER. At all these doctor visits, pediatric specialists, urgent care doctors and nurses they all felt his stomach and told us there is no way he was constipated. We just worried too much, or thinking about it too much. Well finally we had an x-ray that said we were right ALL along and oh yeah we don't know what to do cause its so bad. So after an ambulance ride to Children's we were given instructions for oral clean out since an enema would rip his intestines apart. After a month or so of this to no avail and he was suffering stomach pain and vomiting we went to the ER again. This time I was blown off stating he is simply 2 and having tantrums. Tantrums from a dead sleep? He does not, or did not ever have tantrums. I know my child. After telling this doctor I don't accept her answer she conceded to do another x-ray to prove that he is all better from the oral clean out. She ate her words and was apologetic when she saw how impacted he was. Thankfully the wonderful Neurodevelopmental staff stepped in and rescued him by having him admitted for a clean-out through the stomach. 24 hours of intense clean out and the x-ray after showed he was finally cleaned. We were instructed to give him Mirilax every day and told from now on he will be fine.

That was 2 years ago. He still is not fine.

Our visit to you was because he isn't getting better and a teacher at his school spoke highly of the department. We were hoping for answers. We were shocked to find out he is still highly impacted. For a child that eats hardly anything, just enough to survive this cannot be good. We totally understand and complied with your instructions. After numourous back and forth calls with your people and a second xray 2 weeks later we are still almost where we were. If you have a plan it would be nice to know that. How long can he go with poop that runs like urine? When I brought up to your people that he is barely eating you say its because hes constipated...but when I say he ate more before we started this treatment I am treated like I don't know my own child. When I say he wont drink something, I am not saying that just to hear myself talk. When I say that its liquid and there is nothing solid left, please hear me. I know my child. And whey your people say that you will be able to "feel his abdomen" to see if he is still constipated I have 20 other people that said that too in his first 2 years of life. Good luck with that. I just want answers or at least someone to throw out some things, do some more tests. This has now gone on for 4 years, it is not a new issue. Please hear me when I tell you this. I haven't gone to medical school but one thing I do know, is that I KNOW MY CHILD.

Listen to parents.

Sincerely,
Me

Summing it up.

I stole this from a post on Facebook and modified it a little bit.

I am the child that looks healthy and fine,I was born with ten fingers and ten toes and a cute button nose! But something is different with me,and nobody really knows what this could be, and it isn't always easy for people to see. I am the child who struggles with words when I talk, who sometimes gets out of breath and in pain when I walk. (and then I begin to cough)

I'm not lazy, I'd do more if I could and I try with all my might to be like everyone else! I am the child who dreads sudden noise,it hurts my ears....making me cry and along come the tears.

I am not having tantrums but my stomach hurts really bad, that makes my family really really sad.

I am the child who tantrums and freaks,over things that seem petty and trite,lost in my own anger and fright. Perhaps there's a reason I'm made this way...some message I'm sent to share...For I am a child who needs to be loved and not misunderstood.I am different...but I just look like you.

+++++++++++++++++++++++++++++++++++++++++++++++++

All children have special needs, some are just different than others.

Labels are for underwear, not for children.

New Doctor, Same Issue

We found a new specialist and of course jumped through all the hoops to get the referral and make a new appointment. Of course weeks in advance we asked for records to be sent to the new facility so that the specialist can take a look and we won't have to repeat 4 years of medical history by memory in 10-20 minutes. Then ironically while we were speaking with the specialist the other hospital called to ask questions on where to send the referred information...really? Ugh! Thankfully they faxed a good portion, just as we were leaving. Not that it helped now but hopefully at his follow up appointment it will.

She took another x-ray of his abdomen to check to see if he had any constipation still. We figured maybe a little but since he takes medicine daily he should be fairly good. Well, I was wrong.



He has 5.5 cm of poo lodged in his rectum. It was all I could do not to cry. She decided that we needed to do an enema ASAP (at home) and gave us more instructions, and medicine lists to give him in the next few weeks so we can follow up with her in a month to see if hes any more "cleaned out".

The enema, milk and molasses. Not just for cookies. It scared me to do this but we did it. Thanks to wonderful daddy support. I could not have done that on my own. I swear this kid will need therapy one day. "When I was 4 I remember my parent's holding me down and shoving something warm and sticky up my bum that smelled like cookies." So wrong. Picking up more meds soon and hopefully he will not turn into a runny mess of poo in the next few weeks, but then again better than a stuffinyourrectum mess of poo that he has been suffering with for well, his whole life. No thanks to the many doctors at VMC that refused to listen to us, and finally one at the ER that did. Anyhow, he was rewarded with some KFC and a cheese stick. We promised to play rock band with him tonight as well. Poor kid, but it could be worse right?

Can't Smell

This week I realized that it is unlikely that my youngest can smell...anything. (Even though we can all certainly smell him!) It dawned on me when I was reading about someone else's child being sensitive to smell and I realized G has never told us anything stinks or smells good. His vision is super strong, he can see things very far away that no one else even notices. Exact opposite of myself and his older brother and sister who can't see far without glasses. His hearing is also super sensitive. He can't stand loud noises and will unplug the vacuum if you pause to move things out of the way. Thankfully he doesn't do this while the vacuum is running...but he will run into the other room. I remember earlier this year we were at the store and they had fresh flowers and I was trying to get him to smell them and when he did he seemed to blow air out not in. He now does that when I ask him to smell other things. I hadn't thought to ask him about smells again until recently.

The other night after I realized this I did various smells on napkins or right from the bottle since he cannot read. Garlic salt, onion powder, vinegar, vanilla, lemon, butternut, cinnamon, nail polish remover, rubbing alcohol. None of them had any impact. He smelled the vinegar twice until his older brother said ewe nasty so then he started saying this as well. He smelled nail polish remover right from the bottle, nose as close as he could get and no reaction. He tried 3 times. Is he just good at ignoring smells or does he just not smell anything? Hes still not great at communicating and as much as I have tried to describe smelling with his nose I don't think he understands. When I would ask him what things smelled like he would say basketball game, doctor appointment and once pop tart. Not cookie, pancake, or medicine like one would expect.

This really has me wondering about the connection to or through hypotonia and his failure to thrive (FTT) issue. If he really and truly has no sense of smell this could be part of the reason he avoids certain foods. I have been trying to search for what things taste like to a person without ability to smell but have only read a few things. One he won't drink anything but milk, or vanilla milk. Juice he has always refused. This could be because without smell the juice may just taste acidic and not sweet like everyone else tastes. This may be the same case for fruits and veggies. It may be the texture bothers him because the taste is off? Not sure but would make a lot of sense...pun intended.

I am going to be trying to get him to smell things for the next couple weeks, although he is already annoyed with me. If he cannot smell I must seem insane to him, always sticking something in his face. Hope I don't give him a complex. I have asked around and other moms have told me their kids don't seem to smell anything either. Then again they probably aren't crazy like me and shoving stuff in their kids faces saying whats this smell like?

I don't think there is anything to be done to fix it if he doesn't smell but it may be a clue to find out what he has or what is wrong with him. He has a few upcoming appointments, ENT (Which works out perfect for questions and testing), genetics (may help them find a diagnosis) and before those appointments we have an appointment with an encopresis clinic specialist. Not sure if that is their forte, wrong end of the body but won't hurt to mention it?

Like always onward and forward to find answers.

Hypotonia Survival Guide

"20 years from now no one will ask how old your kids were when they walked, talked or reached any other milestone"

Disclaimer: this may be helpful to many parents dealing with hypotonia. There is a lot of info out there but this sums it up very well. We have many of these tests/proceedure/seen the specialists. Please feel free to ask any questions.
_________________________________________________________

Hypotonia Survival Guide

What is Hypotonia?

Hypotonia, or reduced muscle tone (the amount of tension or resistance to movement in a muscle), can be picked up by pediatricians in infancy or early childhood. It is not the same as muscle weakness but it can co-exist with muscle weakness. Hypotonia may be caused by trauma, environmental factors, or by genetic, muscle, or central nervous system disorders. Sometimes it may not be possible to find the cause of the hypotonia. In babies, hypotonia may present with head lag after 6 months old. Also, the baby may feel like she will slip through your hands when holding her under her arms, rather than supporting her own weight with her shoulders. While most children tend to flex their elbows and knees when resting, hypotonic children tend to hang their arms and legs by their sides. They also may have substantial weakness and little or no head control as an infant, giving them a “floppy” appearance. Symptoms may include problems or delays with mobility and posture, breathing and speech difficulties, lethargy, ligament and joint laxity, and poor reflexes. Hypotonia itself does not affect intellect. However, depending on the underlying condition, some children may take longer to develop social, language, and reasoning skills. (http://www.ninds.nih.gov/health_and_medical/disorders/hypotonia.htm)

To explain the difference between muscle tone and muscle strength, please refer to the following article: http://pages.ivillage.com/msweiner/hypotonia/id9.html

Hypotonia is just a symptom and can be caused by many different conditions.

Therapy
Few underlying conditions that cause hypotonia can be medically treated. Regardless of why a child has hypotonia, the main treatment is symptomatic and supportive therapy. Physical therapy can improve gross motor control and overall body strength. Occupational therapy focuses on fine motor tasks and self help skills. Speech-language therapy can help breathing, speech, and swallowing difficulties. Therapy for infants and young children may also include sensory stimulation programs. (http://www.ninds.nih.gov/health_and_medical/disorders/hypotonia.htm)

In the US, Early Intervention (EI) or Early Childhood Intervention (ECI) is available to children from birth to age three who are delayed in one or more areas of development. For children three and older, services are available through your local school district.
Specialists

Pediatrician
Always start with your pediatrician if you have concerns that your child may have hypotonia. He or she will most likely refer you to one or more of the following specialists.

Developmental Pediatrician
A pediatrician with specialized training in children’s social, emotional, and intellectual development as well as health and physical growth. He or she may conduct a developmental assessment which will determine any delays your child has and to what extent the delay is present.

Neurologist
A neurologist is a board-certified medical doctor or osteopath who has trained in the diagnosis and treatment of nervous system disorders, including diseases of the brain, spinal cord, nerves, and muscles. Neurologists perform neurological examinations of the nerves of the head and neck; muscle strength and movement; balance, ambulation, and reflexes; and sensation, memory, speech, language, and other cognitive abilities. They also may suggest diagnostic tests such as the following: CAT (computed axial tomography) scan, MRI/MRA (magnetic resonance imaging/magnetic resonance angiography), lumbar puncture (spinal tap), EEG (electroencephalography), and EMG/NCV (electromyography/nerve conduction velocity). (http://www.neurologychannel.com/aneurologist.shtml) If you are concerned that your child’s hypotonia may be caused by a muscular disorder, find a neurologist who is a neuromuscular specialist.

Geneticist
A geneticist specializes in genetic disorders. They will get a detailed history of your family’s background and your spouse’s family background. They will look at your child’s features and order blood tests to look at the 46 chromosomes and possibly at specific genes on those chromosomes.

Occupational Therapist (OT)
A professional who has specialized training in helping an individual develop mental or physical skills that aid in daily living activities, with careful attention to enhancing fine motor skills (hand and finger skills, eye-hand coordination and sensory integration). In a developmental assessment, the occupational therapist would assess the child’s fine motor skills, coordination, and age-appropriate self-help skills (eating with utensils, dressing, etc.). She would also look at how the child responds to and uses what he sees, hears, feels, tastes and smells. (http://www.zerotothree.org/glossary.html)

Physical Therapist (PT)
A professional trained in assessing and providing therapy to treat developmental delays, disease and injury using methods such as exercise, heat, light and massage. In a developmental assessment, the physical therapist would assess the ability and quality of the child’s use of her legs, arms, and complete body by encouraging the display of specific gross motor tasks as well as observing the child in play. (http://www.zerotothree.org/glossary.html)

Speech/Language Pathologist (ST or SLP)
A professional who is trained in assessing and treating problems in communication including: articulation (pronunciation of sounds), receptive language (understanding and processing what is communicated by others), expressive language (the ability to communicate to others), fluency (including stuttering), and voice problems (including pitch and intonation.) Some speech and language pathologists are also trained to work with oral/motor problems, such as swallowing, and other feeding difficulties. (http://www.zerotothree.org/glossary.html)

Sensory Integration Therapist
The therapist’s general goals are: (1) to provide the child with sensory information which helps organize the central nervous system, (2) to assist the child in inhibiting and/or modulating sensory information, and (3) to assist the child in processing a more organized response to sensory stimuli. (http://www.autism.org/si.html)

Nutritionist
A nutritionist looks at your child’s diet for caloric content and overall balance of nutrition. If your child has been diagnosed as “failure to thrive”, a nutritionist can offer some tips on adding calories to your child’s diet.

ENT
The Ear, Nose, and Throat doctor will be recommended if your child is having hearing issues, chronic ear infections, or frequent tonsillitis.

Audiologist
A professional trained in assessing a child’s hearing. In a developmental assessment of an infant or young child, an audiologist would look for signs of whether or not there are any hearing impairments or loss, usually by placing earphones on a child through which sounds are transmitted at various frequencies. Audiologists often work closely with speech and language specialists to address problems in communication. (http://www.zerotothree.org/glossary.html)

Ophthalmologist
An ophthalmologist specializes in vision-related conditions. An eye exam may include dilation. Depending on the issue, glasses, patching, or surgery may be recommended.

Gastroenterologist
A gastroenterologist specializes in gastric disorders. Reflux is common in children with hypotonia and can be treated with medication. If the swallow reflex is absent or if a lack of weight gain is serious, a g-tube or ng-tube may be recommended.

Endocrinologist
An endocrinologist specializes in hormone-related conditions and diseases.

Orthopedist
An orthopedist is a doctor who treats diseases, malformations, and injuries of the bones. Many hypotonic children have flat, pronating feet and may require orthotics to help them walk or improve their gait. Some orthopedists do not “believe” in orthotics, making a trip to an orthotist necessary.

Orthotist
A professional who makes supportive braces and prosthetics. Many hypotonic children benefit from leg braces called AFOs (ankle-foot orthosis) or shoe inserts called SMOs (supra-malleor orthosis) and various braces in between. An orthotist can help assess the need for braces and will manufacture custom braces for your child.

Blood Tests
Information from MedTech1.com

CBC
The complete blood count determines the number of red blood cells, white blood cells, and platelets in the blood. In addition, it calculates the total amount of hemoglobin, which is a protein that helps the red blood cells distribute oxygen throughout the body; and hematocrit, which is the fraction of the blood that contains red blood cells (different from the red blood cell count). A CBC also contains information calculated from the blood measurements, including the average red blood cell size (MCV), the hemoglobin amount per red blood cell (MCH) and the hemoglobin concentration per red blood cell (MCHC). The CBC is a standard screening test doctors use to diagnose a variety of diseases and conditions. It provides doctors with a lot of information about the blood, the level of hydration in the body, and the production and life span of blood cells. In addition, it is a useful diagnostic for detecting infection, allergies, and blood disorders. (http://www.medtech1.com/research_center/diag20.cfm/53)

Metabolic panel
This test measures levels of: sodium, potassium, bicarbonate (CO2), chloride, creatnine, glucose, blood urea nitrogen (BUN). When only the first four of those nutrients are measured, the test is called an electrolyte panel. Creatnine, potassium and BUN levels are all indicators of kidney function. Glucose is measured to diagnose diabetes. Abnormal sodium levels can indicate dehydration, heart failure or kidney disease, among other disorders. (http://www.medtech1.com/research_center/diag20.cfm?diag_id=190)

CPK
This test looks at a product from the breakdown of muscle and can rule out muscular dystrophy (MD). With MD, the number would be in the thousands or tens of thousands, so anything that is normal or even under 1,000 rules out MD. Slightly elevated can be a testing error or increases the possibility of a neuromuscular problem. Normal is normal, but it does not rule anything out except MD. This test is also sometimes called CK.

TSH
Thyroid stimulating hormone (TSH) is made by the pituitary gland. It tells the thyroid gland to start producing the thyroid hormones T3 and T4, which regulate metabolism. If TSH levels are irregular, it could signify a problem in the pituitary gland that makes it, or in the thyroid that processes it. Usually the thyroid is the problematic gland. Decreased activity of the thyroid gland is called hypothyroidism. Symptoms include fatigue, weakness, weight gain and slow heart rate. Hyperthyroidism is an increase in activity of the thyroid gland. Symptoms include weight loss, rapid heartbeat, insomnia, shortness of breath and anxiety. A high TSH signifies hypothyroidism. This is because the thyroid gland does process the TSH, so the pituitary senses a need for it, and keeps sending more. If the thyroid gland is overactive (hyperthyroidism), then it will use too much TSH, and levels in the blood will be low. (http://www.medtech1.com/research_center/diag20.cfm/199) Thyroid problems are one of few medically treatable causes of hypotonia, so every child with hypotonia should have a thyroid test.

Lactate and pyruvate
The ratio of lactate and pyruvate can indicate a possible mitochondrial disorder and a normal ratio rules this out. This test is hard to do correctly and has a lot of false positives.

Blood sugar
This test looks for diabetes.

Chromosome analysis
Chromosome analysis can be performed on blood, solid tissue, bone marrow, amniotic fluid cells, and chorionic villi. The following sections describe the samples needed for specific types of chromosome studies.
Prenatal Chromosome Analysis (amniotic fluid, chorionic villus sampling)
Fluorescence In Situ Hybridization [FISH] (trisomy detection and sex determination, oncology, amniotic fluid, newborn screening, telomere alteration)
Cytogenetic Analysis of Leukemia (bone marrow, unstimulated leukemic blood)
Peripheral Blood Analysis (routine and high resolution)
Solid Tissue Analysis (skin biopsy, products of conception, abortus tissue)
Special Stains

The above links have very detailed information about each type of chromosome test. (http://ggc.org/Diagnostics/Cytogenetics/cytogenetics.htm)
Further Tests

MRI
Magnetic resonance imaging (MRI), a painless testing procedure, takes pictures of the body, much like regular X-ray, but using a strong magnetic field instead of radiation. MRI provides detailed pictures of brain, nerve tissues, cartilage and ligaments from multiple planes without obstruction by overlying bone. Nearly 90 percent of all MRI scans are for cranial or spine disorders. However, doctors also use MRI to determine injuries to complex joints like the shoulder and the knee. Most doctors prefer the MRI for detecting brain disorders. MRI is useful in brain and neurological disorders because it can clearly show types of nerve tissue. It provides clear pictures of the brainstem and posterior brain, which are difficult to view on CT scan. Doctors also use it to diagnose demyelinating disorders (disorders such as multiple sclerosis that cause destruction of the myelin sheath of the nerve). MRI is sometimes used to avoid the dangers of angiography or of repeated exposure to radiation. The MRI scanner sends the signals to a computer, which manages the information and creates a 3-D image of the scanned tissue. The image then prints on photographic film or videotape. MRI scans can penetrate bone and provide clear, detailed picture of tissues and muscles. In preparation for the MRI, the patient lies on a narrow table that slides inside a large tunnel-like tube. The scanner then surrounds the patient with a magnetic field. A radiologist, who specializes in MRIs, examines the film or computer for abnormalities. People who are claustrophobic, agitated, or disturbed by the loud noise may be given an antianxiety medication before the examination. Infants and young children are typically sedated for the test. Sometimes hospitals use open MRI machines that are less noisy and not as confining as the closed models but have other limitations and are typically not appropriate for a brain scan. The MRI technique operates on the principle that the most abundant atom in the body is hydrogen, which is present in every water molecule. When placed in a powerful magnetic field, such as that of an MRI machine, the nuclei of these hydrogen atoms line up in one direction, just as compass needles point to the poles of the earth's magnetic field. When energy from radio waves is directed into the field of the body part that is being examined, the nuclei are temporarily moved out of alignment. When the radio waves stop, the nuclei return to their alignment, giving off their own energy in the process. The machine's computers record the duration and intensity of these signal changes and convert the data into information that produces an image showing the internal structure of the examined part. An MRI costs about $1,000 or more per examination, and the machines themselves are prohibitively expensive for small hospitals or rural areas. (http://www.medtech1.com/research_center/diag20.cfm/49)

EEG
Electroencephalogram (EEG), or a brain wave test, is a measure of the brain's electrical activity. It is used to help diagnose seizure disorders, confusion, head injuries, tumors, degenerative diseases, and other conditions that affect the brain. In a comatose patient, An EEG technician performs an EEG test. Sixteen to 25 flat metal disks (electrodes) are placed on the scalp as the patient reclines. Wires connect the electrodes to an amplifier and a recording machine. During the test, the recording machine converts the electrical signals into a series of wavy lines, which are then drawn onto moving graph paper. A doctor then interprets the results of the test to find any medical abnormalities. (http://www.medtech1.com/research_center/diag20.cfm/62) Some hypotonic children also have seizures and an EEG would be performed to confirm or rule out seizure activity. While having electrodes placed on the scalp may annoy a baby or child, the test is otherwise painless.

EMG
An electromyogram (EMG) tests electrical responses of muscle at rest and during contraction and is used in the diagnosis of muscle and nerve disorders. (http://www.medtech1.com/research_center/diag20.cfm/55)

Muscle biopsy
A brief surgical procedure to remove a pencil eraser sized piece of muscle, usually from the thigh, to then examine under the microscope. They study the structure of the muscle and look for changes and abnormalities in the muscle tissue. A muscle biopsy is the only way to fully diagnose neuromuscular disorders.

Other tests may include hearing tests such as the ABR, tympanogram, and/or sound booth or vision exams.
Diagnoses (http://freespace.virgin.net/bch.hypotonia/)

Neuromuscular disorders

These are disorders which affect the muscle itself. Diagnosis is made through a muscle biopsy which shows abnormalities in the muscle fibre. A few neuromuscular disorders have a genetic test that can rule the disorder in or out, but the muscle biopsy is the route for diagnosis for most. Neuromuscular disorders vary in their pattern of inheritance and severity. The muscular dystrophy organization, http://mdausa.org covers a long list of neuromuscular disorders including congenital myopathies.

Chromosomal disorders
Some disorders involve the duplication or omission of one of the 46 chromosomes. However, there are many involving abnormalities in the chromosomes such as micro-deletions which are not usually detected in a routine chromosome test—a specific test is needed. Examples include:

· Prader-Willi Syndrome—(chromosome 15 involved) Under 6 months, hypotonia, sleepiness and feeding difficulties. Then, hypotonia becomes less, feeding difficulties stop and hyperphagia (over eating) begins, usually between the ages of 2 and 4. http://www.pwsa-uk.demon.co.uk (US: http://www.pwsausa.org)

· Williams Syndrome: a sporadic congenital syndrome due to a microdeletion of chromosome 7 (7q11, 23) at the elastin gene focus. There is a typical facies and global developmental delay. http://www.williams-syndrome.org.uk (US: http://www.williams-syndrome.org/)

Metabolic diseases
There are some 1,300 identified inheritable genetic disorders in which errors of metabolism occur involving a block where a catalyst or enzyme is absent or malfunctioning. This defect results in the build up of chemicals on one side of the metabolic blockage and a deficiency of vital chemicals on the other. This causes an overdosage of one or more, often toxic, chemicals and the shortage of others which are essential to normal body functioning. http://www.climb.org.uk

Mitochondrial cytopathies
Mitochondrial cytopathies are a group of disorders caused by abnormal function of the mitochondria. Mitochondria are the powerhouses of the cell and convert food into energy. Any failure of this process causes a lack of energy in the cells and this will severely impair the working of organs such as the brain, heart or muscle. http://www.climb.org.uk and http://www.umdf.org/

Connective tissue disorders
Connective tissue disorders, such as Ehlers-Danlos Syndrome, consist of several types of genetic connective tissue disorders. In general, these are due to a collagen (a naturally occurring protein) abnormality. Common characteristics include abnormalities of the skin, ligaments and in some instances internal organs. Problems include fragile and/or stretchy skin, bruising, scarring, poor wound healing and loose joints which are prone to dislocation and subluxation. http://www.ehlers-danlos.org http://www.ednf.org . Hypermobility syndrome involving loose joints is also a connective tissue disorder. http://www.hypermobility.org.

Cerebral hypotonia, brain-based hypotonia
Cerebral hypotonia, brain-based hypotonia—the hypotonia may be the result of damage to the brain (trauma, lack of oxygen, development in utero) which may or may not be visible on a brain scan. It is not clear how this is diagnosed when there is no visible damage on a scan. However, if the child is diagnosed hypotonic cerebral palsy, then see http://www.scope.org.uk.

Benign Congenital Hypotonia
It is not clear if this is a separate condition or whether it is simply a term used when a child has gone through all tests and all tests have proved negative. Generally, for true “BCH” diagnosis, the delays are mainly motor-based (this can include oral-motor muscles affecting speech). Certainly, there are children who appear to “grow out of” the hypotonia—although they may never become great athletes. But there are also children diagnosed initially with BCH who turn out to have more specific conditions—such as those listed above—diagnosed later on.

Related conditions:

Dyspraxia
Also known as clumsy child syndrome: perceptuo-motor dysfunction: minimal brain dysfunction: motor learning difficulty. Children with dyspraxia have problems with motor planning. Some children with dyspraxia have low tone, some children with low tone are dyspraxic. http://www.dyspraxiafoundation.org.uk

Sensory integration dysfunction
Many children with low tone have sensory issues. This means a problem with the body’s reactions to different sensory experiences. So a child with SID might over-react or under-react to stimulation—may crave swinging or going on roundabouts—or may avoid it. May freak at loud noises or may thrive on noisy places. May benefit from deep pressure such as being wrapped in a blanket. May react extremely to the same situation on different days, in different ways. Read The Out of Sync Child to learn more.

Developmental delays, learning difficulties
Developmental delays, learning difficulties can go hand in hand with the hypotonia (though remember that children can have delays and learning difficulties without having hypotonia). They may arise from a specific condition of which the hypotonia is one symptom. Or the hypotonia can lead to the difficulties—this is clearly the case with motor delays. Even with a diagnosis, the degree of difficulty can vary from person to person. It is hard to make a prognosis early on as to the kind of difficulties a child with hypotonia will face in the future, though predictions may become easier as the child matures and difficulties either resolve or become more obvious.

Prognosis
So your child has hypotonia. What you probably most want to know is “What does the future hold for my child? Will he or she ever catch up? What challenges will my child face?” Having a firm, medical diagnosis may help bring insight to many of these questions. Unfortunately, there are not a lot of answers out there for those children without a diagnosis, and even with a diagnosis, prognosis may vary greatly from child to child.

All parents of hypotonic children wish for a crystal ball into which they can look and see their child’s future. What the parents tend to learn is to take life one day at a time and to celebrate progress, no matter how big or how small. They also learn to look at their child’s development in relation to itself, rather than the norms. A hypotonic child who walks by age two may be doing fabulously based on his own timeline. Most hypotonic children will “get there” with therapy and time. By age five, they may not be the fastest child on the playground, but many will be there with their peers and will be holding their own. Some children are more severely affected, requiring walkers and wheelchairs and other adaptive and assistive equipment. The goal is to help your child to become as able and independent as he can possibly become.

Grieving and Other Feelings
A process that parents of a hypotonic child must go through is one of grieving. All parents who are expecting a child either from birth or adoption dream of the “perfect” baby and envision themselves as the “perfect” parents. When first told that their baby has problems, all parents experience a myriad of feelings. Many are shocked, although some feel validated if they have been noticing their child missing milestones. All are, to one degree or another, terrified. The parent’s expectations of what it would be like to have a baby are suddenly shattered. At some point, self blame enters the picture. Did I keep her in the stroller too much? Should I have nursed rather than bottle fed? Was is the half a glass of wine I had at my brother’s wedding? WHAT DID I DO WRONG??? The answer to this question is nothing. None of us did anything to cause our child’s hypotonia.

From there, a process of grieving begins. Feelings of sadness, anger, depression and anxiety often overwhelm parents for a time. During this time, parents often feel very upset to see their child next to typically developing babies of the same age. The grief is palpable and it is necessary in order to say goodbye to the “perfect” baby that every parent dreams of and to come to love and accept the beautiful and wonderful but hypotonic baby that the parent has. For some this process runs its course in a reasonable period of time. For some, the grief is overwhelming and can lead to depression and anxiety that can affect how the parent functions day to day. Any parent who feels that they are overwhelmed by depression or anxiety should seek medication and/or counseling. Your family doctor is a good place to start.

Another challenge that parents face is figuring out where they and their special needs child fit in. The world of typical children can be a difficult place for a hypotonic child and it is tempting to isolate one’s child. It’s hard going to a playgroup of toddlers when your child’s latest milestone is getting from the floor into a sitting position and the other children are running across the room. It is difficult to go to the mall and have a well meaning stranger ask how old your child is and react in shock when you say “eighteen months.” Friends and family, especially at first, may make unhelpful comments such as “all children develop at their own pace” and “well, maybe if you just played with him more, he’d start to sit up better!” The sad reality is that the world at large does not understand what it’s like to have a hypotonic child and the parent of a hypotonic child is usually too emotionally exhausted to teach everyone she meets how to respond appropriately.

However, it does neither you nor your child any good to hide from the world. It may be challenging, but it is important to find friends with whom you feel comfortable, even if their children are typical and developmentally leaving your child in the dust. Friends who can listen empathically and celebrate your child’s victories, no matter how small, should be cherished! Some EI programs offer playgroups where you may have a chance to meet parents of children similar to your own. And it’s important to get out and take your child to the mall and the zoo and anywhere else you would typically go. It takes time to develop a tough skin, but at some point parents of hypotonic children learn to turn a deaf ear to the well meaning but stupid comments of strangers.

Been-There/Done-That Advice From Parents

“The best thing I heard from Mattie’s PT was this (and I must force myself to repeat it to myself during those frustrating times)… He is on no-one’s schedule but his own. He will do things when he is ready and to put labels on him is unfair to him, it sets a different standard for him than he may need, it lowers the bar so to speak. Just one day at a time.” ~Jeanne Ambrose, mom to Mattie, 15 months, hypotonia in trunk muscles, dev delays

“It is possible to have a dx....we do only after 8 months after we first went to a neuro. But it is uncommon...and we are lucky to not have to search anymore.

I hope this is helpful and gives you hope.

When Georgia was first dx with hypotonia, before we had ANY tests done....her first neuro said that Georgia would grow out of her hypotonia eventually and long term would be ‘fine’. Although I do NOT have a crystal ball...everything is looking that way and we are OVERJOYED at that.

My husband and I made the decision that we wanted to explore all the possible reasons WHY Georgia has hypotonia. We wanted to believe that the neuro was right - she would be ‘fine’...but we wanted the assurance of all the tests to prove that.

For the past 8 months Georgia has had the tests that were relevant to her situation. Georgia’s main symptoms are that she has mild to moderate hypotonia and a delay in speech. She is 2 now. AT MY REQUEST, Georgia has had several bloodwork, urine analysis, and an MRI. We were told that we would find nothing..that all tests would come back normal. All the tests came back normal except the MRI.

So the MRI gave us a real diagnosis. The MRI showed that Georgia’s area in her brain, the cerebellum, (means: we move) controls movement, muscle tone, coordination, and some aspects of speech) has a small part on the left side that did not develop fully. Which explains EVERYTHING that Georgia has issues with.

Is this dx scarier or more serious than ‘hypotonia’ that we first received?? Initially...because it SOUNDS scarier...yes. But now, 2 months after we have received the dx?? NO, not anymore. We have talked with multiple specialists. And they all give the same prognosis as when we first had the hypotonia dx. ‘She will grow out of it eventually....she needs loads of therapy...she should be fine...never will be a star athlete’...although Georgia’s brain abnormalities won’t change..her therapy will help her permanently compensate for that.

Now we are at the same place we were when we first heard the hypotonia word. We are stronger with the information we have from the tests, BUT I am ragged and recouping from the stress and agony that the tests have put me through!!!

Our dx is broad....migrational abnormalities...but Georgia is still the same as she was before all this. We are still giving her physical therapy and speech therapy etc...BUT we have peace of mind that she does not have anything progressive. I am the one who needs to find peace and acceptance in that..and STOP comparing her to other 2 year olds.” ~Alexis & Georgia 2 (migrational abnormalities & speech delay)

“I’ll share the best advice given to me by our PT, Kathleen Tyson at All Children’s Specialty Care Center in Tampa. She gave me this advice during our very first session, when Ellie was only 6 months old and I was full of questions and desperately wanting those ‘crystal ball’ answers. This is what Miss Kathleen told me, ‘Does ANYBODY ask us as adults when we walked and talked?’

And no, no one has ever asked me or my brother that. For the record I talked abnormally early (11 months for words; 12 months for sentences), and my brother didn’t walk until almost 18 months. Now, he's the big high muckety-muckety computer guru and I am the broke a** jobless one!

So, that is the advice I’d give all newbies — sit back, relax and enjoy this ride as much as possible, because 20 years from now no one will ask how old your kids were when they walked, talked or reached any other milestone we see as life altering and earth shattering right now. I just try to think of it as Ellie being a baby longer.” ~Amy and Ellie — 8 months old in a 14 month old body
Resources

Medical links: http://pages.ivillage.com/msweiner/hypotonia/id3.html

Love this! but a thought...

I read this article by Stefanie Wilder Taylor regarding her daughter. Its a great article, but my thoughts are what if this was a boy instead of a girl? I don't think parents would be as apt to let their young 3 year old wear a tutu or some sparkly Sketchers. Not saying this is right or wrong but it is something to think about.

http://blogs.babble.com/babble-voices/stefanie-wilder-tayler-baby-on-bored-electric-boogaloo/2011/09/19/my-shopping-spree-with-chaz-bono/

Research Study

When we discovered Graydon had a flat head, misshaped in a big way we started seeing specialists. I know I have mentioned it before but he was fitted for a helmet when he was 6 months old. He was to wear it for 4-6 months 23 hours a day. At our initial visit at Seattle Children's Hospital when our baby was just 3 months old the ARNP we saw said he had plagiocephaly and brachiocephaly. She initially thought he had torticollis and referred us to physical therapy for him immediately. It turns out that he did not have tort but had overall hypotonia. After the ARNP wrote the referral she asked if we would like to be part of a research study for children and infants with plagio and brachio. We agreed and signed up. We figured if nothing else they may figure out what is wrong with him and possibly give us more resources. He went to several visits over 3 years and had one MRI relating to the study. (He had another MRI later for medical reasons.) They would send us updates and so on but never really heard the results. I belong to a group on Facebook that is for people with hypotonia. It is a great support group. Many people from all over the globe sharing stories and advice. I wish I knew about this years ago instead of just a couple months. There is a mother there that was denied helmet therapy for her child and while I was looking for links for her to campaign to her insurance company to show its medically needed and not cosmetic I found a link from an article detailing the research study Graydon was in. He was one of the 472 babies in the study, obviously not part of the control group. I know initially we were told he was the first child with plagio that had a successful non sedated MRI. Thankfully it was clear and showed nothing wrong. All of his Bayley tests showed significant global delays. 6-12 months behind "normal" children. It was the urging of Dr. Brent Collett that made me push to have Graydon retested for speech delays, after the initial one showed he didn't need speech therapy. A copy of that Bayley test from a high ranking professional at an acclaimed children's hospital held merit when I waved it in front of the people who said my child didn't NEED speech therapy. They suddenly agreed he did. Anyhow...this is the link.

I am so glad to share and hopefully some good came from the study and it gives other parents more of an edge to fight for their children when professionals refuse to listen.

Another link to a similar story.

hostgator

I R Suck. Update and Update.

Seriously the blog thing has not been happening like I would like. I have lots to say but really not sat down to write it out. Here is the mini update for the year.
Finished college in June just 2 days before my youngest turned 4. (Where did that time go?) I got a degree and 2 certificates. Of course I didn't have to worry about finding a job, because I always had one. One I might add that I am very grateful for. Everyone gets along, usually. They understand needs to leave for medical appointments for my child with hypotonia and other medical issues, specialists and ongoing speech therapy. But it is good to be done. I *thought* I would have a ton more time for stuff like blogging, and ebay...HAH! Yeah no...not sure how I coped before with homework and everything school, work and family.

Moving on...G turned 4. He is doing pretty well progressing with his delays. Still not on the level of other kids his age but not too noticeable to others that meet him. Potty training is the big frustration now. He can pee every time, usually. But pooh is another story. He freaks out, tells me he doesn't know how, runs, hides...UGH! It is hard to tell whether he is internally damaged (Thanks to the wonderful doctors that wouldn't listen) or just fearful, or maybe a little of both. We hope that he makes progress before next fall when he is supposed to start kindergarten.

KC did another summer at theater camp (maybe that is where my time went?). She LOVED it. She even had a lead role with a singing solo. I certainly would love to get her some lessons and maybe get her involved in more theater stuff. It costs money which is scarce these days thank to a certain person that refuses to help with things that...well never mind. Tay spent the summer at my parents working as a laborer. He also helped other family members out and earned some cash. It was good for him. He turns 18 in a few weeks. CRAZY. I am so not old enough for him to be my kid. He has a lot to do this year. He needs to pick a college, we need to do some senior pictures. He has some super hard classes, calculus...physics. ACK! KC is taking algebra in 6th grade...I am not smart enough to help with homework anymore.

I also came to a realization that maybe I knew but never really sat down to ponder. My oldest will be graduating from high school on June 13. The day before his baby brother turns 5, yes FIVE! This means one graduates and another begins. HOLY F()
Speaking of the above mentioned grandmother, we also lost her this year as she left to join my grandfather. She had a broken heard for the last 4-5 yrs. My mother, bless her heart, took care of her until the day she died. Spending nights with her at home and even in the hospital till she took her final breath. There is another story to this I will tell later.

The rest of the year will be busy too. My son turns 18, my daughter will be 12 in a couple months, then Christmas....oh my.

But for now I am going to sign off. More to come!

Many changes, but everything is the same...

I was reading my blogs from last year. Wow has it been that long since MJ died?

Graydon had the procedure and we are maintaining his constipation problem with medication. So far hes not gotten as bad as he was the first 2 years of his life. Hes not potty trained yet. Everyone told us to hold off. He has had many more tests, an MRI, blood work and even had a genetic specialist. Think Dr. House but for genetics. No answers still. Some "maybe its this or that" but since there is nothing definitive I am not even going to google the maybes. I will just become more neurotic than I already am. And let me tell you, no one in my house wants that!

I still worry about this little man every day. He started daycare this year because we had no other options. The first week he got sick, and hes been sick with ear infections 7 times since. He still has fluid in his ears that cause him pain at least every other day. Well enough pain that he cries and complains. It is really his only complaint he ever has. Good news is we have a great doctor and hospital that agree he needs tubes. Bad news is that they are booked till July so we are having to wait it out till then. He may need some other things done but they will check then. Crossing fingers it all goes ok.

The daycare he is going to was mostly wonderful for my daughter. Its not been so good for Graydon. He keeps getting in trouble, he mimicks the bad kids. He doesn't have tantrums but gets excited very easily. I think the teachers dislike him because they don't understand him. Maybe its because I got another teacher in trouble a couple years ago for doing something bad to my daughters class? I don't know. The teachers have been pushing for us to move him from the first 2 weeks. Instead of making an effort to acquaint G to a daycare setting they expect him to conform to rules hes never had. Like sitting quietly in a circle without moving. The other children, well a couple of them, are unruly and bullying. They even had a state worker come in and asses it. The teachers tried to tell me that its Graydon. The state worker who I requested to speak with said that its too chaotic for Graydon and he doesn't get the attention that he needs. Talking to her made me feel much better. I know my kid is a wonderful caring child. He randomly hugs kids he meets. He hugged 4 today at Target. I wish the rest of the world was just as friendly. He brings smiles to everyone he meets. Well except the 2 teachers at the daycare too busy to notice him standing in a toilet.

The other good news is that he passed his latest speech assessments. He only has a mild delay according to 2 independent tests done just a few weeks apart. He still needs help though. Its obvious hes a little behind but they said its not an extreme concern. Well maybe for the ones doing the testing. I do worry about what will happen when he goes to kindergarten.

Eating issues...always a struggle. He still has a lot of things he won't eat. We focus on what he does it and keep those handy. Still no real fruits or veggies. Gerber meat sticks are great, they make one with carrots. I really need to learn to cook. Or be more creative at it. Maybe I can start hiding veggies better. So far he finds them or just refuses things I have hidden veggies in. It's like he knows. So confusing. Hes above zero percentile at least and maybe up to 8%. This is wonderful as long as he keeps going. I heard a pod cast on The Parent Experiment the other day. They talked about coconut oil being a miracle food. I plan to get some and give it to Graydon. Maybe even the milk. Can't hurt right? Dad may think I am nuts but I am willing to try it. Will report back later!

Special Needs?

I really really loathe this term. Special needs is the same as saying somehow your kid has defects. I do not think my kid is defective, anymore than my other kids have defects. Their defects happen to be different...like they are defective at cleaning their rooms when I ask them. All kids have a special need, the special need to be loved. So if one child has special needs does that mean my other kids needs are not so special? So my kid doesn't eat right, gain weight and gets constipated without medicine daily. He wears plastic braces on his ankles to help strengthen his legs. He can't jump up and down, strangers can't understand anything he says. But this is just him. Hes not bound to a wheel chair or have tubes running in and out. I know there are kids out there with needs far more specialized than my own child. This I guess is why I hate the term. I know people with kids with debilitating diseases that will not be getting better. People that have to take kids to the hospital weekly for more than just ear infections. I just don't feel normal functioning kids are any more special than normal kids without behavior, speech and learning delays. Maybe it makes them unique from their peers but my gifted, learning excelled child is just as special as my delayed speech, milestone and learning child. Her needs are just as special as his. Just sayin...

Failing...

Well not in my class, yet. I just might if I can't finish my work though. Graydon had never been to preschool, daycare or anything like it until February this year. I figured he would do well playing with his "fwends" and he did at first. But I think hes lost, too many kids. Even though its just 4-5 hours spent there. He started acting out and throwing things, or at least them mentioned it. I blew it off because hes not normally like that. I figured he was copying other kids. Graydon is very much into copying others. He is behind on his development in speech and motor skills but they have always said his cognitive level is on time. He thinks, figures things out, just cant communicate it with people who are not used to how he speaks.

So now hes is throwing things, just at daycare, on a consistent basis. Not sure what to do because hes not at all like this at home or anywhere else we go for that matter. He usually is trying to hug and kiss the girls he meets at appointments or in random public settings. Its so frustrating because the daycare had stripped him of his comfort items. The wouldnt allow him his blakey and binkie. Though I brought them daily in his bag. They finally relented on the blankey but only for nap time. What do I do? I have never had a problem with this. I would really love the feedback from others if possible. I plan to talk to his speech therapist today and her supervisor to see what they think. Help! I feel like I am failing as a mom.

Graydon at 2 yrs 4 mos Drumming

Look out Metallica, Lars might need to be replaced!

I noticed I hadn't posted any of G's vids on here, or at least I cannot find them.

There are more on youtube.
http://www.youtube.com/user/leesuhjo
and
http://www.youtube.com/user/ProdDeity

My son is full of shit...

Literally. Xray proves it. Again. *sigh*

Now we have seen a specialist in neurodevelopment, another nutritionist and a feeding specialist. Really how many nutritionists can give us advice. We know. But he will only eat what he wants.

He's been waking up screaming. Hes been having screaming fits occasionally during the day. Another call to the doctor who seemed concerned but couldn't fit him in. So we see another available doctor. Diagnosis...Doctor: your son is having night terrors and throwing tantrums. Me: Really? No not him. Hes in pain, trust me I am his mom. I know his pain cry, his mad cry, his scared cry. Doctor: No really its normal for kids to have night terrors at (barely) 2 years old. And maybe he has some small bug that is making him fussy. WTFE... Leave frustrated.

Happens again. During the day. Not sleeping. Wide awake. I even record it with the camera. Screams for an hour. Home alone with him. I put him in the car, screaming all the way 3 miles to urgent care. (No way will I get a hold of the regular clinic at 4pm on a Friday) Nice Nurse we saw before: Did they test him for Crohons? Me: Nope they blew that off before I finished my sentence. Her: really? Me: Yep. Last told hes having night terrors. Her: NO way. Kids that age don't normally have night terrors without some kind of trauma. You should take him to Children's. I will write up that he needs a full work up on Crohons and stomach issues.

One hour later at Children's ER. He's stopped screaming, thankfully but yet I wonder if they will believe me. He has a slight fever. They take us back. Nurse comes in asks basic run down...the doctor came in. I proceeded to tell her about the last visit and how upset I am that I was just told it was night terrors. She let me finish then said...well I am going to have to agree with that doctor. Me: what? Doctor: well it is normal. Crohons would be more far fetched. Me: Um, I hate to disagree but well I do. Hes not having night anything. Hes not having tantrums. Doctor: Well he is 2 now, tantrums are normal. Me: not for him, hes a mild, mellow child. He does NOT have tantrums. Nurse came in to take us to xray. Doctor: we'll talk more when hes back from xray.

Waiting, waited, waits...finally doctor comes back in. Sits down quietly and... Doctor: Well I am not sure what his xray looked like 2 months ago when he was here but hes still very constipated and has large amounts of stool in his intestines. Xray shows "Large Intestine Fecal Burden" Me: speechless. Doctor: it does take time for it to all come out. He is probably having pain. Me: Yeah I KNEW it wasnt night terrors. Doctor: well we could do something they call poop dynomite but we don't recommend it. You should keep things going as you are and it will clear up eventually, like in a year. Me: so what he is pooping now is poop from 6 months ago. Doctor: well yeah it would seem that way. Me: what else can we give him for pain. Doctor: well nothing, you can add maalox 1 tsp five times a day. Me: 5 times a day? Doctor: Yes. Other than that you just wait. Have a nice weekend.

Now...I was so shocked that he was STILL that constipated I couldn't even pull my thoughts together after sitting in the room alone with him for 3 hours. I leave, kind of in shock but thankfully my friends and Brandon (who was at work) helped me cope with the questions in my head.

Our struggle now is the pain he goes through AND his decreasing desire to eat much of anything. Even the things he previously loved. His lack of appetite scares us. How long can he waste away? He may weight 21 lbs now but at least 3 lbs is probably poop.

I had a call from the hospital asking how hes doing. Of course I said um the same still constipated. I did ask about doing frequent xrays to check on progress. She agreed. I asked what else can be done and she explained a procedure. They put a fluid, same fluid that they use for colonoscopy's directly into his stomach. This gets things soft and moving. I need to discuss this with his doctor. Just not sure if I can get through and actually see her. Also plan to bring this up with the neurodevelopmental specialist. This is why.

Obviously hes failing to thrive. Hes not absorbing nutrition. Hes barely eating. This is probably because his stomach/intestines are full of crap. Possibly pushing on his stomach. Think pregnancy. When you're pregnant the baby pushes on your stomach, and everything else. This could be happening to him? This could be causing a lack of appetite. He doesn't want to eat because hes associating it with pain later. Until this is fixed we cannot find out what caused it to become so bad.

I guess we need answers. And a parent knows their kid. Why won't people believe us?

Be careful what you wish for....

Two years ago when my third child was born I remember thinking how fast they grow up. I barely remember time passing by so fast as the older kids have grown. We both told Graydon not to grow up too fast. I remember telling Brandon how I wish Graydon would stay little longer than his siblings. Well fast forward, maybe I shouldn't have made that wish. Now he is two and has fallen off the growth charts because of his failure to thrive. I feel some guilt having made that wish after he was born.

Today we had his appointment with the Neuroscience person. I am so tired of repeating the story each time. I am seriously thinking of writing a summary to hand to each new person we go to. I always feel I am forgetting to mention something. It seemed much of the same thing, same questions his doctor, physical therapists, speech evaluators, the neurologist, nutritionists and all the other specialists ask. Yes we know hes delayed...is it a big deal? What else should we expect in the future? What has caused this? This has been ongoing since the day he was born and he could not suck the nipple on his bottle. So everything today was the same...until the end. She stated that his head circumference has fallen off the chart. This is something that has always been normal size as the rest of him is smaller. She wants to follow up with his neurolgist and find out what blood work has already been done. Then order some more. He needs a hearing test, I know this is not at all the issue. He can hear the smallest noise across the house. He needs to see another neutritionist. Sure, if it can get him to eat fruit and drink juice great. Doubt you can force a 2 year old to consume anything they don't want too. So all we came away with is there is something wrong, yes we know that, and we need more follow up and more people to see...yay for us.

On the plus side we are getting great news from our new PT. She thinks hes doing very well on catching up and would like to focus more on speech. This was very nice to know. All the hard work has paid off. I feel bad we will be leaving his current PT soon but I think this change will be good for his development.

More to come...

A bit more revealed

Nothing too major. Got Graydon's referral, now we just need an appointment. Did find out why he was rushed to Childrens hospital...his white count was up and there was something else noted that could have meant his colin was dying due to lack of oxygen. I guess they had ruled it out once they examined him at CH. They may have done another blood test before I got there. So anyway, we are on the right track to getting him normal.

Hes been a very happy guy this week. He's definately feeling better. Hes laughing like he used too and chasing sister.

In other news the quarters is almost done and so far so good. 10 credits down and 80 more too go!

My mom has been very sick. She says she getting better but she doesnt sound better. I guess they did xrays on her yesterday. My grandmother broke her hip 3 weeks ago. Shes also not doing well, it seems she may have given up out of being old and lacking the effort to try to walk again.

An update on G

I mentioned in a previous post about his diet and the problems. Well I don't remember how much I mentioned. He has been constipated most of his life. We first noticed a problem within a few weeks. They told us it was normal with the iron in formula. Told to give him more water. We took him in at about 4 months to discuss the issues. We were told to introduce cereal, oatmeal and fruits to try and give him variety to his diet. This didn't help as he would gag on the food.

Over the last year and a half we have brought him in for the constipation a half dozen times to have a discussion. We always had to see other doctors on call. They would say give him beans, prunes, juice and other things. Sadly the child is picky and likes what he likes. What he doesn't ends up on the floor.

In the last month things have gotten worse. He started getting a bad rash from constant "skid marks". I took him in to a doctor on call to get an opinion. She told me to use vasoline for his bum and to get his diet changed (again with the diet). If that meant holding him down to force a syringe of prune juice down his throat several times a day that is what we should do. We did try this a few times. It was bad enough we had to hold him down to clean his sore bum and the juice only seemed to choke him and make the rash worse. The next week he started random vomiting. He threw up once a day 5 days out of the week for a week. That Saturday I took him to the urgent care clinic where I finally saw someone that agreed there is more to his issue than constipation. She suggested a special pediatric GI specialist and mentioned it could even be Crohns Disease. I called his doctor that monday and she prescribed mirilax by phone. Said to give him a half cap a day and to come in a week and a half later. We did this. He still hadn't gone in 5 days when he kept having cramping that would double him over in pain and scream blood curdling screams.

He woke up screaming this morning early in pain. After not being able to calm him down we decided to take him to the ER for suggestions. This always happy baby has never screamed like this before. Once we got to the ER he had calmed a bit but continued to freak out once an hour. They took blood started an IV and sent him for xrays. We spent 2 and a half hours waiting for the results. The ER doctor came in to tell us he never seen a child as backed up as our little G. He said he wanted to have someone at Childrens take a look and he was making some calls. He said he wasn't sure what to do for him. A few minutes later he came told us that he arranged an ambulance to take him to CHS. We were utterly shocked and scared. Daddy went with him while I picked up bro and sissy to take them with us.

When we got there they hooked him up, took vitals and looked at his xrays and blood tests. They came and had us repeat his life story of hypotonia and suggested this was more than just a kid with constipation. The doctor at CHS said his xray was the most "impressive" (odd word choice) of a constipated child he'd ever seen. He was so backed up that an enima was dangerous. It would likely do more damage than good because his intestines are so stretched out. It will essentually be like giving birth once this stuff comes out. He is underweight as it is. They said the other alernative is a tube by mouth to get it soft from the other end. They want to wait a few days first and have us up the dose of the mirilax. We were told by both ER's that this is way overdue and he should have been on the laxitive from the beginning. They also suggested another underlying issue that hasn't been discovered. Something that is causing everything since birth. This is something Brandon and I have thought all along. Of course we are just parents with no medical degrees so what to we know?? But it is finally good news to have someone agree with us and point us in a direction. He will be referred to a special nuro department at CHS that will help find what the problem is. SO they can help prevent things in the future from becoming so bad before we get help with it. So now we are home and hes taking extra doses and hopefully it will all come out in the end...pun intended. Then we can get his intestines and digestive system working the way its supposed too. For now that is the story. Hopefully we will get some good news soon.

More to come...

The story of Graydon...

I posted a couple times about our little G and his medical issues. I know there are many other children out there with far worse things wrong with them. We are lucky to have a mostly healthy tot.

Anyhow hes always had minor issues. When he was first born he didn't want to suck. We ended up staying an extra day in the hospital to make sure he had learned to suck the bottle. He did catch on but it wasn't usual. Especially since my daughter was born with hickeys on her arms she gave herself in the womb. This was just the beginning of his problems. At 2 months old I noticed his head was flat. I brought it up at his 2 mos appointment and it was agreed to follow up...it didn't get better and he was put in a helmet for plagiocephaly at 6 mos old. He started physical therapy at 4 months. He had issues at 6 mos gagging on baby food and swallowing solids. An upper GI showed no issue. They attributed it to his low muscle tone or hypotonia and delayed milestones. He was also a late crawler not crawling till he was a year old. He didn't pull himself up till 16 mos and didn't walk till 18 mos after being fitted for orthotics for his ankles that he currently wears. His ankle bone moves to the back of his foot and these are supposed to correct it in time. He is now getting around pretty well walking and almost running. He still doesn't say a lot of words and depsite a previous post is now going to have to start speech therapy. Otherwise hes a perfect, mellow little guy who has rarely been fussy his whole life. He may have phsyical delays but mentally hes as sharp and normal as anyone. He can also play the drums like a pro! I mean real drums too.

It took some time to realize that his issues have to all be related. Now we are on a quest to find out the cause. This will be noted in another update.

Little drummer boy

good news! yay!

So Graydon had his regular PT appointment yesterday. Last time they decided since hes behind in all aspects of his development that he should see a speech therapist, even though hes still just a little guy and still learning to say things. We figured he would be behind in that as well. Since my older kids are 9 and 15 and I am older and lacking the memory skills I once had, I don't remember what they were saying at this age. Well the good news is, hes perfecty normal and does NOT need speech therapy. We are so happy...! Hes doing well, and she was very impressed that he can say YES with no problem with the SSSSSSSS part. Woo hoo! Now that hes a walking machine, he will catch up in no time, or so they project. Its so great to finally know hes not totally behind...now we just need to fatten him up and get him stronger!