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My 6 year old sons undiagnosed condition causing muscle cramps in his calves

I'm going to start off by saying thank you for reading, hopefully I can find some answers.
I'll try to be as specific as possible starting from the beginning of all the issue.
My son is 6 years old. A very happy 6 year old, loves going out play, incredibly friendly and a joy to be around and on most days seems like a normal child. However, since he was about 1 and half years and been walking properly, started to suffer with his calves cramping up and leaving his feet in what I describe as a ballets toe. His foot points out and just won't release. When it happens, the time it lasts varies the longest being 7 days of him being unable to walk. He has had test after test with no conclusion. These include, MRI on his spine, feet and brain. Hes had a muscle and skin biopsy to no avail, a lumber puncture and seen countless specialists from around the country. He's had countless blood tests which all come back fine and it's getting to the point where me and his mother don't know what to do as we have to keep pulling him out of school until episodes pass.

Now just to give more detail from as far as I can remember every time he has a major issue he seems to have some sort of viral infection or fever that seems to kick it off. However, he's always complaining that his legs are hurting even when he can walk which leads me to believe he's accommodating the pain which could be affecting his walking.

Growing up from a young age he has suffered numerous problems which have been investigated starting from when he was a baby which involve an enlarged liver. The doctors carried out tests and couldn't find anything wrong and it just appeared to go back normal by itself.
He also suffered from major constipation, which was that bad that we had to hold his legs open while he scream his poor lungs off pushing a poo out. Which I'll add came out like a python, they were huge as in length as if he was emptying his whole bowel. We were told to give him Movicol, which is a laxative and to vary the dose on how his body adapts to it, so if it's too hard give him a bigger dose throughout the day or too soft decrease the dose.
This seemed to clear up eventually.
Then from the age of 1 and a half, while walking him around the zoo he was complaining his legs were sore then all of a sudden he couldn't walk because his calves had siezed up. Since then like I've said has had loads of tests but no diagnosis.
He's been to see a foot specialist because his arches seem to want to collapse so he's been given shoe insoles. Just recently he's been give a splint to try and stretch his calves when he's walking but that is still an on going thing.
Just recently he's had a problem with his breathing. He suffered with some major coughing fits and really load snoring. They hospital carried out a sleep study and a bronchoscopy which found a chest infection which seemed to clear after a course of antibiotics.
His consultants have started calling him the special one because they don't know what's wrong with him
This is everything I can remember for now. If anyone has any idea please point me in the right direction.
Thank you
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144586 tn?1284666164
There is another possibillity. I would suggest a consult with a pediatric hapatologist. Disruption of vitamin D3 metabolism is common in patients with liver or bilary disease. This results in low serum levels of ionized calcium, which result in the cramps. One test for low levels of ionized calcium is to occlude the bracheal artery in an arm for two minutes. This is commonly done by taking blood pressure, and then pumping the cuff up 50-80 mm hg above the upper reading and holding this for two minutes. In cases of low ionized calcium the hand will turn into a bird-like claw. The short period of ischemia will do no harm.  There are illustrations of this on google images as well as a complete description of the test.
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144586 tn?1284666164
Ask your doctor to rule out insulinoma, caused by a small tumor on the pancreas. These are usually benign. These tumors cause spikes in insulin production, which diminish potassium and cause severe cramping. When the tuimor is not active the labs would be normal.
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144586 tn?1284666164
Generally, these symptoms are caused by one of four deficiencies (1) calcium (2) potasium (3) D3 levels (4) magnesium. The tests will be normal exeptt while is is experiencing the cramps. Try (1) a bananna a day, broken in two six hours apart (2) a D3 supplement (1000 IU) (3) calcium supplement of two glasses of milk a day (4) a magnesium supplement. There are no contraindications to this protocol.
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Avatar universal
Just to add because I don't know how to edit, he is also on diazepam when his calves start to hurt. He's on 12.5 ml a day when needed
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