Another Newbie....working Backwards...hypotonia?

[noodles mommy]

Hello all, my name is Kelly and I have 2 kids. Kylie (noodle) will be 3 in sept and I also have a one month old, Dylan. Kylie has been our mystery diagnosis child. She has hypotonia and we have not been able to find the reason. She is still not walking nor even close to it. Normal MRI, slightly abnormal muscle biopsy, positive for antibody production found in lupus but has not been thought to have it, blah blah blah...

ANYWAYS, she also has severe reflux, and has been suffering from horrid nutrition and weight gain. So we did a endo biopsy last week and it came back positive for celiac disease. Now we are going backwards and doing the bloodtest. I assume if the biopsy is pos then we are on a definite trip to a gluten-free diet? Does anyone know if a pos biopsy can mean anything else besides celiac disease?The GI mentioned Crohns but said she felt she was to young for that.

Any other kids out there with hypotonia-success on the diet?

Also, any reccommendations of an infant formula for my son. He has horrible gas and poopy issues and since celiac disease is genetic quite possible he is on the same track as my noodle....looking forward to meeting you all and learning as much as I can!! THANKS!

[Nic]

HI, you just described my two son's, both with seperate symptoms, only one is a positive for Celiac. My 5 year old was diagnosed a year ago with Celiac. He is not the one with Hypotonia. But he did have trouble with Formulas as an infant, whether it be Celiac related or not, so the doctors put him on Nutramigen. My 4 year old has hypotonia and was gross motor developmentally delayed. We were never given a positive cause for this either. They suspected thyroid disease, Williams Syndrome, genetic disorders, blah, blah, blah. No one knows is what it comes down to and what I have been told is in most cases like this, they never find out. They do suspect however it may have been the Meningitis he had at 5 wks old. Regardless, I had his blood tested for Celiac and it was negative. So far no syptoms for it either and I do not know ith hypotonia is a symtom or not.

I am not sure what state you are in but I live in Jersey. We have a state run program called "Early Intervention". When my son was 10 months old, he was not able to bare any weight on his legs at all. They were skinny and underdeveloped. To move around he dragged himself around on his elbows. A Neurologist suggested we call Early Intervention and they came to my home and evaluated him. In order to get services he needed to be 33% deficient in one area, or 25% in two areas. He did qualify for services and within 2 weeks was pulling himself into a crawl position and by 14 months, he walked. They claimed that his muscles kind of needed to be told what to do. I then found out, just by chance of over hearing it, that my school district offers services for pre schoolers who are delayed in any area. So I again had him evaluated and once he turned 3 he entered the public school district. He receives physical therapy, occupational therapy, and speech therapy (his mouth muscles are also weak) through the school. It is wonderful. I don't know how much help you are getting for the hypotonia but if it is not alot, do some research to find out about what programs are offered in your area. Sorry to ramble, just thought this might be some help.

Nicole

[hstevens]

I can relate. My daugher had gross motor delays and low-tone which had GREATLY improved since being diagnosed and gluten-free (she will be 3 next month and was diagnosed in March 06). She has had OT ( I am actually a PT , though work mostly with the elderly) for a few months. I STRONGLY reccomend getting early intervention services (In the state of NH it is free to those who qualify 0-3 yrs old). In addition to that we did a parent-tot gymnastics class all winter which really helped her too.

Other things...Her hair never really grew, until going gluten-free. I can feel the new stuff growing in which is soft and shiny, where the old "gluten" hair was like straw. I just noticed that I am cutting her fingernails as the same rate as her older brother - it used to be that I would cut his 3 or 4 times before hers grew to a point where they needed it.

In reading and learning about celiac diseas I see "weakness" mentioned, but not really indepth. It makes total sense to me that she was malnourished, and that now that her system is repairing and she is actually absorbing what she eats, she can bulid things like muscle, hair and nails!

[wonkabar]

Early Intervention services are available in all 50 states. This is a federally mandated program for children ages 0-3 who present with developmental delays. Each county provides services to the children who qualify for Early Intervention services with a 33% delay in one developmental area or 25% delay in at least two developmental areas. Talk to your pediatrician or your local Board or Education to get contact information for EI services in your area. Typically, the therapists come to your house and work with your child there. EI services can be free, however, there is a sliding scale for "fees" depending on your annual household income.

However, if your daughter is going to be 3 in September and is not receiving any services through EI, contact your school district Special Services Dept./Child Study Team to begin the evaluation process for the Preschool Handicapped Program. You need to submit a request in writing for a full Child Study Team Evaluation for your daughter. I would submit this letter now, if you already haven't done so, as they have 20 days from rect. of the letter to have an Evaluation Planning Meeting (as a "team" you all decide if your child should in fact be evaluated). The district has 90 days from the date of that meeting to perform the evaluations and have an Eligibility Meeting (the results of the evaluations and eligibility status are discussed). If necessary, an Initial IEP-Individualized Education Plan-Meeting (If eligible for services, you discuss a "plan" that meets your child's developmental needs). Children may also be found eligible to receive additional services in OT, PT and Speech/Language. The preschool program is available to children ages 3-5.

I am not only a special education teacher but also a mom of a 32 week preemie. Zachary had gross motor delays, has a mild language delay and some mild sensory issues. He received EI services for 10 months and then began the preshool program in April. EI was an excellent service as is the preschool class. He's doing great!! I hope I didn't inundate you with info that you already have. But based on my background and as a parent, I'm a huge advocate for special services b/c so many parents are left in the dark about what's available to them and their children. It's great to hear other parents who've tapped into the resources that they're kids need, and most importantly, are entitled to. Lots of luck and feel free to contact me if you'd like!

--Kristy

[noodles mommy]

Thanks for the info!! Kylie has been getting early intervention since she was 10 months along with speech, PT and OT since she was one and a half. She has made inchstone progress in PT and better progress in the others...We have her special Ed evals for pre school this Tuesday. She will continue all her current therapy because she was accepted into long term care 4 months ago so she now gets respite and will soon have hab hours!! We did her blood work on Friday so we should have results for celiac from that on Wed....I will keep you posted!! URGGHHHH I hate waiting!!

[wonkabar]

Thanks for the info!! Kylie has been getting early intervention since she was 10 months along with speech, PT and OT since she was one and a half. She has made inchstone progress in PT and better progress in the others...We have her special Ed evals for pre school this Tuesday.

Hi Kelly! Awesome!! I'm sorry I flooded you with info you already had; I'm still amazed by how many parents I worked with who already had kids in the system who still didn't know everything their kids were entitled to. Kudos to you for getting your daughter services so early!! Early Intervention is a wonderful service and, I believe, key to a child's development if they're delayed. It's great to hear that Kylie has made progress in PT and OT and is wrapping up her other evals. Zachary started summer-program today; he just left on the bus! He also receives speech and OT. Although Zachary has common preemie delays that he should work through in the next couple of years, it still stinks to see your kid struggle. BUT it's the absolute best feeling when you see them make progress!!

Zachary has been on a gluten-free diet since March. He feels so much better!! He's far less irritable, less tantrums, not as easily frustrated and has a different sense of calmness...well, as much calmness that a 3 year old can have! The gluten-free diet is a huge undertaking, but worth it's weight in gold! It gets easier as you go and simply becomes second nature. Keep me posted!

--Kristy

[DanAbimytwomiracles]

Thanks for the info!! Kylie has been getting early intervention since she was 10 months along with speech, PT and OT since she was one and a half. She has made inchstone progress in PT and better progress in the others...We have her special Ed evals for pre school this Tuesday. She will continue all her current therapy because she was accepted into long term care 4 months ago so she now gets respite and will soon have hab hours!! We did her blood work on Friday so we should have results for celiac from that on Wed....I will keep you posted!! URGGHHHH I hate waiting!!

Just keep in mind that blood tests are not totally accurate for celiac, and often miss many diagnoses. Only intestinal biopsies and an elimination/challenge diet are effective ways to diagnose celiac. My 4 year old daughter's bloodwork was all negative yet after going gluten-free 5 months ago she's gained weight and has increased both her muscle mass and fat layer - well, she HAS some muscle and fat now - I'm not sure increased is the right word LOL. She has had low muscle tone since she was born, but through EI and private therapy she's made some rgeat progress.

It makes sense that if your body isn't absorbing nutrients properly, it wouldn't be able to build muscle mass and other key body tissues like it should. I would absolutely try a gluten-free diet asap.

[Nic]

I never knew unitl now that hypotonia and developmental delays could be related to Celiac. What makes me nervous is that my son with hypotonia tested negative for Celiac but he is only 4 and I know the blood work isn't always accurate. But I wonder if he would be getting better through the physical therapy if he were Celiac and untreated. He has made great progress. The only problems we still see is some weakness in the trunk, neck, and mouth. I also feel he does not move the same way as other 4 year olds. For example, he still has the toddler run, belly first. I am wondering if I should persue this or am I just having him go through more testing for nothing. He has been through so much already.

[chrissy]

Just keep in mind that blood tests are not totally accurate for celiac, and often miss many diagnoses. Only intestinal biopsies and an elimination/challenge diet are effective ways to diagnose celiac.

sorry to disagree, but intestinal biopsies are not always accurate, either. one of my girls had a negative biopsy, another had an iffy biopsy, and the third one didn't even have a biopsy.

[2kids4me]

There is another thread under :Related disorders and research about hyptonia. I will copy my replies to that post here too in hope they help you.

My daughter has celiac diagnosed in 2003 (she is 13 now). She was born floppy and hypotonic at 36 weeks, had physio from baby hood on ( and also OT, speech and daily living skills).... at 1 year old her legs folded like jello under her, she stood at 2 and she didnt walk on her own til she was almost 4. She used a walker for 6 months prior to walking alone. After genetic testing for all things that can cause hypotonia, MRI, CT scan, EMG, EEG, muscle biopsy, blood and urine workup ..... she was diagnosed with central hypotonia - fancy way of saying they ruled out everything else - so it originates in the brain. She also has hyperextensible joints and poor balance. She had difficult birth so some damage coud have occurred then. She used ot scoot around on her bum and I often thought I should stick a rag under her butt and she could clean the floor!

One thing that my daughter LOVED was a physio game for her arms - in the tub or outside - we started with small plastic pop bottles and graduated to 2 litre size after a while. She would fill them with water and then dump them on my head, or her own. Lifting the weight of the full bottle up above like that built her strength and we had lots of fun. I would wear my bathing suit in the tub.

It is likely a separate issue from the celiac, but I bet you will see an improvement on the gluten-free diet. Withour proper absorbtion of nutrients the muscls cannot function well, plus if the child is tired, they wont feel like doing motor exercises. Although my daughter will always be hypotonic, her energy level went way up after we started gluten-free and her core strength improved simply because she was using the muscles more / better.

I saw improvement in her running gait as well - it smoothed out noticably, she also climbed up hills better. I think she just felt so darn good that she wanted to use all those muscles - which strengthend them.

** amusing comment from the doctor that did muscle biopsy (D was 2 and 1/2yrs old): She may be a little sore when she walks...I replied: wow, she can walk? then I paused and said - we are having this done because she can't walk...

The muscle biopsy came back with some changes possibly indicating Spinal Muscular Atrophy.. it took 6 months to get the DNA results that ruled it out but for those 6 months we thought she had degenerative neuromuscular condition. Been a roller coaster.

The tests did rule out a lot of conditions that cause hypotonia. She also has Hypothyroidism (diagnosed at age 4), they felt it contributed to her fatigue and low tone but since she had normal Thyroid levels at birth and at age 2 , that the hypothyroidism was separate from the hypotonia. She was born floppy. She also has Aspergers and celiac.

The walking was joyous - because she had walker for so long she liked to carry things in her hand (markers, pencil case) when she walked along using the wall for support. ..then one day in November - she let go of the wall!!!!!!! She grinning from ear to ear and kind of squealed in delight at herself. She carried a pencil or marker around in one hand for about a month after she learned to walk .

Before that - picture me outside showing her how to put one foot in front of the other and to alternate her steps... I had to physically hold her leg and tell her to shift weight to the other leg so I could put the next foot forward. Same thing with stairs, we put in a second handrail lower than the one that was there so she had something her height to help her, I went up and down the stairs by her side - again showing her how to alternate feet - that came later becasue she is weak on her left side - she had a preference to use her right foot to lead the gait. Ball therapy helped her with core strength too.

[aprilh]

Hello all, my name is Kelly and I have 2 kids. Kylie (noodle) will be 3 in sept and I also have a one month old, Dylan. Kylie has been our mystery diagnosis child. She has hypotonia and we have not been able to find the reason. She is still not walking nor even close to it. Normal MRI, slightly abnormal muscle biopsy, positive for antibody production found in lupus but has not been thought to have it, blah blah blah...

ANYWAYS, she also has severe reflux, and has been suffering from horrid nutrition and weight gain. So we did a endo biopsy last week and it came back positive for celiac disease. Now we are going backwards and doing the bloodtest. I assume if the biopsy is pos then we are on a definite trip to a gluten-free diet? Does anyone know if a pos biopsy can mean anything else besides celiac disease?The GI mentioned Crohns but said she felt she was to young for that.

Any other kids out there with hypotonia-success on the diet?

Also, any reccommendations of an infant formula for my son. He has horrible gas and poopy issues and since celiac disease is genetic quite possible he is on the same track as my noodle....looking forward to meeting you all and learning as much as I can!! THANKS!

Try Goats Milk. The brand I used (recommended by my natureopathic doctor) is Meyenburg powdered. I can post the recipe if you like. Have to add other ingredients to make baby formula. Both my kids could not have dairy or soy. This still provides the protein.

Also, since the endo tested positive I would get her wheat/gluten free asap and see how she responds. You may notice a HUGE improvement. I haven't heard of hypotonia though.

[noodles mommy]

Well blood came back positive today! We are officially gluten free today! Wish us luck!!

[moreElle]

do chicken stars count?? lol, jk.....

[hstevens]

Good luck!

We "graduate" from OT next week... She was here today and we were remarking on how much Greta has gained in the past 5 months: how she moves. how she looks. Let us know in a few months... I'll be interested to hear how things are for you!

[plantime]

This is an interesting thread to read. I just did a report in biology on hypotonia and its link to Prader-Willi syndrome. It is interesting that it could very well be linked to celiac!

[Nic]

Hi, my son was actually tested for Pradar-Willie, not my Celiac but my son with hypotonia and developmental delays. He tested negative thank goodness, with pradar-willie they are over weight due to their brains not telling them they are full, they also have learning disabilities. We are now leaning more toward Celiac as well due to the hypotonia and his mild constipation.

Nicole

[2kids4me]

Our daughter was tested for Prader Willi as well. I have seen threads here discussing weight loss and others presuming the person had bulemia or anorexia. My daughter was bloated and overweight, one dcotor called her fat and told me she should exercise. Yup, exercise is real fun when you are tired and have headache and a stomache ache! She slimmed down within 6 months of going gluten-free - and her tone improved as I stated before. The bloating gave her the appearance of being fat - but after going gluten-free all her pants became too loose at the belly.

I hope that the gluten-free diet make sa difference - it's wortha celebration if you see improvement!

[2kids4me]

Hi, my son was actually tested for Pradar-Willie, not my Celiac but my son with hypotonia and developmental delays. He tested negative thank goodness, with pradar-willie they are over weight due to their brains not telling them they are full, they also have learning disabilities. We are now leaning more toward Celiac as well due to the hypotonia and his mild constipation.

With hypotonia and constipation, they should also check the thyroid. They likely have for your child but in case others are reading this - hypothyroidism can cause constipation, dry skin, fatigue and hypotonia. short stature...

[Nic]

With hypotonia and constipation, they should also check the thyroid. They likely have for your child but in case others are reading this - hypothyroidism can cause constipation, dry skin, fatigue and hypotonia. short stature...

Hi, do you know if kids can test false negative with hypothyroidism? He has been tested for this as well as diabetes but from the very beginning with him, everyone said "hypothyroidism". As an infant his front fontanel (spelled wrong I'm sure, soft spot on head) would not close. At 1 year old I could fit the width of my index, middle, and ring fingers in the top of his head. By 2 it finally closed. Large soft spot that won't close is also a symptom. Also, he is 4 years old and weighs 52 pounds but eats next to nothing. He is on the taller side though, 43 inches (he was born 10.8 lbs. and 22 and a half inches long so it leaves to reason he will be on the bigger side).

Nicole