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I am a single mom who adopted 4 children considered different. Jonathan is 19 with autism/down syndrome, Charissa is 12 and major mood swings with food!, Chanysse is 8 with achondroplasia/arnold chiari/spina bifida and Jezeriah 3.5 year old with autism/down syndrome. I have had to give up my career as a special Ed teacher because my son Jonathan's ongoing health issues. Jonathan has polyuria and severe swelling of the kidneys. This has come to light more recently! Before I was told that my son had urological issues. He had 3 operations related to this including a spinal surgery for a so called thickened filum supposedly related to spina bifida! BUT still the swelling kidneys persisted since birth! I now believe that Jonathan actually may have had polyuria since birth due to toxins in his body! I believe Jonathan has been severely dehydrated for many years because of his severe polyuria! Despite all this, Jonathan has learned to read and write and is the most gifted artist! With the SCD diet Jonathan is now learning and developing like never before! He has recently been given a special grant which will allow Jonathan to further develop his communication with the unse of a communication system! Jonathan actually types out what he wants to say and is beginning to do this with much more interest! With the support of the grant we can deveop this further! Jonathan reads well over 5000 words and now he can begin to use these words to express so many things to others! BUT Jonathan needsanswers to find and support why he has polyuria!

I am in seach of others that may also feel that their child could in fact have excessive urination problems too! As adults if someone pees more that 2.5 litres a day it is considered excessive. Jonathan pees between 3.5 and 5 litres a day! I don't know anyone who has every done a 24 hour urine collection with autism! Jonathan is the first and only one i ever heard of doing this! I would like to know if many of our kids with autism actually have this problem! I would like so much to work woith others that do a study on this! I know of another boy with down syndrome/autism who is 30 years old and on dialysis! Jonathan deserves a fighting chance! I need to work with others to change this possibility and find ways to support Jonathan back to health! JUST maybe kids with autism/down syndrome develop intellectual problems because no one has ever looked at this aspect before! Severe dehydration can cause severe intellectually handicaps if not found hearly in a childs life! So please help us network to find answers and maybe support many others to a much better undertanding into the medical issues of kids with this dual diagnosis!

Today I refused another surgery for Jonathan! Instead I asked for a bladder scanner at home! I use a scanner to know how much residual is left in the bladder. This helps Jonathan understand the amount he must empty with the help of a urinal to measure! Now Jonathan can empty the amounts we ask on demand very well! We go next week to the hospital to see if this support has made a difference for his kidneys! We are praying for kidney swelling less that grade 3! If this way of working with his excessive peeing works it may become a new way to support this type of problem. Jonathan has no problems emptying as long as he knows what amount we want him to empty! The scanner and urinal makes this effectively visual and that means Jonathan can succed in emptying all he needs! Right now Jonathan must do this hourly or he gets too filled with urine! Generally he empties about 300ml's hourly. We are asking for answers and ways to stop this excessive urination problem. If there is anyone out there that can give us ideas as to how Jonathan can be supported to heal we would be forever grateful!

Thanks so much!
Love Pamela and Jonathan!