hiya all i new to the group and like all have a boy a 3 year with autism and a little girl whom is 16mths with an inhereted gentic condition both of them have so much love to give along with tautrums etc i in the middle of having my son statemented and still awaiting to find out what going on with my daughter i mum to four wonderful kids whom with everyday light up my life and its good to share and chat to other parent who are going though the same and toknow the there is always a place to come and chat

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Kelly - posted on 11/13/2008

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hiya thanks again for your help i joined the yahoo group i,am sure they will be able to help but i feel getting advice from people who deal with the problems every day not like the doctors who spend around half hour with them and every child is diffrent but thankyou and good luck with your boys feel free to add me to your circule and keep in touch with me has i would love to share any progress with frenids who understand

[deleted account]

For us, the regression in my younger son was dramatic. He had what could have been a seizure and went completely limp. When he was diagnosed the dev ped told me that he thought he might have a metabolic disorder. We had carnitine panels done as well as blood and urine organic acids. Those were abnormal, but it took a few years to get anyone to pay attention to them. A few years later we had a skin biopsy done that provided more info. There is a list of test to consider on UMDF. I would also joint the yahoo group. The people there are much smarter than me!

Kelly - posted on 11/13/2008

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hiya thanks for the information could you tell me how to ask the doctor for testing has would love to know what is happening with her i only want what best but i know that what every mum and dad wants for there kids

[deleted account]

The reason I ask is that my boys both have a presumed mitochondrial disorder. We are still trying to get a diagnosis. UMDF.org is a wonderful place to look. It presented in my children with low carnitine, low muscle tone, autism, poor growth and g.i. issues. Once we started the GFCF diet we had unbelieveable improvement. Then when we started treating the low carnitine, we again had a big jump in skills. I don't know if your daughter's condition could be related to your son's autism, but it might not hurt to look into it. There is also a great yahoo group called meta-mito-autism It is for people whose kids have autism and either a diagnosed or suspected mito disorder.

Julie

Kelly - posted on 11/13/2008

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hiya julie my son has autism and my daughter whom is 16months old i was told it was an inherited genetic condition that they can,t test for until she is older she has dystonic postering of her arms and she just starting to sit and take solids i notice there was something wrong at around 3mths old and she under went alot of test which is showing up nothing i been told she could be 3 to 5 years before we know whats affecting her



regards

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