Need help- growth issues

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My son, is 10 years old. He weighs 60 pounds. He has been termed "growth delay" and "failure to thrive". He is delayed in height and weight as well as bone age.

It breaks my heart to see him in comparison to his peers as he is beginning to be self-conscious about how small he is.

He was a large baby (almost 9 pounds) and into his second year he started going down percentiles. Initially we were told not to worry that he was probably following my height. (I'm 5'1" and dad is 6'.)

He is followed by an Endocrinologist who has done numerous labs looking for the normal cause of malabsorbtion problems. None were found. Endo has done reading but he is not familiar with Mito.

He has had the growth hormone stimulation test and was under till the last blood draw was done and it was normal.

He was started on CoQ and Carnitor by Dr. Cohen back in January of 2002. We saw Dr. Cohen with 4 of our kids.

Within the first year after starting supplements he exhibited "catch up" growth that Endo said he would have expected to see if was on growth hormone.

Fast forward to now and he hasn't gained since his last Endo visit in October. He has lost and regained what he has lost.

The end of December he started having episodes of stomach pains. (Pain always started in the early morning hours and would last for almost a full day and disappear.) We had an episode two weeks ago where he woke in the middle of the night with stomach pains and vomited and this lasted for a day. I initially questioned virus but not thinking it was as the rest of the family didn't get it. (These pains seemed to happen about every week or two.) Numerous labs and stool cultures were done as was a barium swallow with small bowel follow through. Tests were normal.

Neuro feels it would be reasonable to consider what he is experiencing a migraine variant/abdominal migraine. He suggested B2 or periactin. We recently started the B2 at 100mg daily and will increase it.

We supplement him with a can of pediasure to boost his nutritional intake although he does pretty well with eating.

He also exhibits mild heat/exercise intolerance. He has hypotonia. He has mild lordosis and scoliosis. He sees a Pulmo for mild asthma type symptoms. He has occasional complaints of leg pains. He receives speech therapy (speech is fast and sometimes jumbled together and volume is low)....thought is co-ordinating his breathing and speech) OT and PT evals showed delays but not significant enough at this time for therapy.

Thought is maternal inherited Mito. Suggestion is possible MELAS based on labs and other family symptoms. Frozen muscle biopsy on his brother showed increased mitochondria on SDH and NADH stains which Cohen termed "blue ragged fibers" and said they are "red ragged fibers". Cohen felt biopsy was suggestive but not definitive enough because mitochondria appeared normal under electron microscopy and because we didn't have a finding on the complexes. Still waiting for mtDNA.

Any experience or suggestions anyone has would be greatly appreciated. Any web sites would also be appreciated.

Anyone with a knowledgeable Endocrinologist that I could refer my doc to would also be appreciated.

Thanks so much for your help.

Hugs,

Marie