Celiac+hypotonia?

[moreElle]

hey everyone...

i am the respite provider for an amazing little girl named kylie. she will be 3 in sept and we have been searching for a diagnosis for her hypotonia (low muscle tone) for almost two years. she had an endo recently and came back with a positive biopsy for celiac...we are now waiting for the bloodwork to come back, but since the biopsy already came back positive i think the dr's are pretty confident that she has celiac.

so my question is does anyone know of anyone else with with hypotonia and celiac? we are hoping that the hypotonia has been caused from being malnourished, but i would love to hear how others responded to the gluten free diet and how it affected their muscle tone. any info would be helpful, we're all still learing (its been less than a week) but im very grateful to finally have some kind of diagnosis for her!

thanks in advance!

[2kids4me]

my daughter has celiac diagnosed in 2003 (she is 13 now). She was born floppy and hypotonic, had physio from baby hood on..she didnt walk on her own til she was almost 4. She used a walker for 6 months prior to that. 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. 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...

A site about hypotonia with links is:

Open Original Shared Link

Or use Benign Congenital Hypotonia as your search words, you may find useful info for your situation

[moreElle]

thanks for the info!!

thats great that your daughter was able to start walking, im sure it must have been like watching a dream come true....something we're still waiting for with kylie!

she had a muscle biopsy in march, which came back pretty much normal. there was a slight inflammation in PART of the muscle, but nothing that really meant anything. basically all of her tests have come back normal or inconclusive until now.

im glad to hear the glutten free diet helped, im really looking forward to see what happens with kylie.

so your daughter never got any other diagnosis besides central hypotonia? how is she affected today? does she still have any limitations??

**thats funny about the dr....sometimes you wonder how they got through all that school without picking up some common sense!!

[2kids4me]

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.

Today - a slight difference in strength between her two sides, she can balance on her right foot better than her left. She rides a three wheel bike, can run and skip rope (another big moment when she did that!!)

It seemed to take forever for her to advance with motor skills and just about the time I'd think - this is as far as she can progress - she would surprise me and make leaps forward in terms of progress - almost like it took a long time to build the new roadmaps her brain - but once we built the road, she turned it into an expressway!!

[Fiddle-Faddle]

My oldest son was induced 3 weeks early because of failure to thrive in the uterus--he was only 4 1/2 pounds at 37 weeks gestation. He also had cardiac issues. He had what I believe was mild hypotonia. We were able to get OT for him starting when he was 3 untilhe was 6, which made a huge difference. He did ballet and tap (really!) for a year when he was 3, and when he was 4, he did gymnastics once a week. He started Tae Kwon Do when he was 6, and one of the instructors worked one-on-one with him for a year and a half, until he was able to pass his first belt test (shich usually takes 6 weeks).

He now has a (junior) black belt in Tae Kwon Do. It's been marvelous for him.

I also reccomend Suzuki violin lessons--this is fantastic for fine motor skills, eye-hand coordination, listening skills, math skills, spatial skills, language skills, readinig--you name it, it helps!

Oh--how WONDERFUL that you are searching on your own for help for this child. You must be a wonderful care provider, and it moves me to tears that you would do this.

[moreElle]

thats sweet, thank you!

i have been caring for kylie for so long (since she was 8 months at the daycare i worked at) that i cant imagine not wanting to know everything i can about whats going on with her. she is honestly such an incredible little girl and i feel so unbelievably lucky to have her in my life, as well as her AWESOME mom who does an amazing job with her all in stride. i truly am the lucky one!!

it is great to hear everyone else's stories...although i know not everyone is the same, it makes me optimistic to hear how others similar to her have reacted from the diet and how they have grown. *hopefully* we will see some big improvements, as i hate to see her struggle so hard to do the littlest things!

thanks for all your kind words and input, it is greatly appreciated!