Issue with down syndrone child

[Herbjr]

My son Michael is now 13 years old and had Downs. He has always been very high functioning, very active in church, school. His speech while slurred was pretty good. He could work his dvd player, make a bowl of cereal, work the computer, and loves to sing gospel songs. He never met a stranger, we would have to sometimes hold him back because he wanted to hug everybody. This past September we bought a new house and he started attending a new school. In December his moods started changing, he was not sleeping and was scared of everything. He would not eat and started talking to people that were not there. It seemed as if he was regressing. He was talking less and could not write as well as he used to. He seemed to forget how to wipe after using the bathroom. We took him to a doctor who prescribed respiridol and he had a very bad distonic reaction to it. We took him to another doctor and she put him on celexa and other meds that I can't spell or pronounce. he seemed to have a reaction to everything he took. Things came to a head this past Sunday when he started flailing about uncontrollable. We rushed him to the hospital emergency room and during 5 days they ran every test they could come up with. All tests were negative, eeg's, mri's,, sleep study's, we were told that there was nothing medically wrong. He still has the symptoms of being scared, talking to people who are not there, not sleeping, and decreased eating. I just want my little boy back the way he was, but we are being told now that these are things that happen in children with downs. At this point we don't know how to help him. They have now put him on drugs to improve his mood and clonidine to help him sleep. Has anyone seen this before, how can I help my son. I don't except that he will be this way from now on.

[kanded]

Hi: I'm coming in a little late to this conversation, but assuming you may receive this, I would like to just make a comment. My son also has Down's Syndrome. I've researched exhaustively what happens as they mature. It seems they experience a type of dementia, similiar to Alzheimers. This can cause them to forget what they have already learned, and make them resort to other behaviors that they may not previously have done. It is described as a regression. This does not usually occur until they are an adult. I sincerely hope that it is not this that your son is suffering from. The best answer I have come up with is early intervention, diet and exercise. Some people with a child with DS will give them high concentrations of certain vitamins. While many of these methods have not been fully tested, on the other hand some of them are harmless. A person has to use their good judgement and common sense when going to these websites. But I have found personally that my son does seem to do better on high doses of Gingko Biloba. There is a whole regimen I do with my son, but each person has to customize it for their own child. Diet is a super important factor, because kids with DS are already lacking in certain areas, and fatty processed foods make these worse.  Exercise helps to stimulate brain growth and is a natural mood enhancer.
I have not accepted that I should sit back and not worry, or do nothing to make his DS better because I have seen results with my own eyes. It does take a certain amount of time and dedication on the part of the parents. But I know if I help him now, it may give him a boost for the rest of his life.

[Dr. Kokil Mathur]

Hi!
I am sorry to hear about your son’s problems. Since all medical causes are ruled out, his problem could have a psychological edge. The change in school and home could have triggered the psychological trauma.
He may be facing ridicule, abuse, taunts in school. This can naturally initiate anger and frustration. Also sleep apnea is a common problem in these children, and its quite possible that your son is not getting enough sleep in the right combination of deep sleep/and less deep one. This can also make him irritable. In teenagers, sexual awareness too builds up a lot of tension. I suggest you consult the school counselor and try and find out exactly what is happening in school. Also get a complete psychoanalysis to see if he has anger/depression due to some identifiable cause, and his IQ level tested to see if he can really cope up with his peers, needs special attention in normal school or needs to go to specialized schools. Please consult your doctor regarding this. Take care!

The medical advice given should not be considered a substitute for medical care provided by a doctor who can examine you. The advice may not be completely correct for you as the doctor cannot examine you and does not know your complete medical history. Hence this reply to your post should only be considered as a guiding line and you must consult your doctor at the earliest for your medical problem.