what is going on with my cousin's son?

[bremen]

my new cousin in law's baby, B, is 2.5 and jsut learned to walk. He is deifinitely developmentally delayed, but i need help figuring out what else is wrong. Before you get all logical on me, we are in germany, and early intervention does not exist. things like speech or occupational therapy are much harder to come by. so, some things about B: Physically: 1. he learned to walk just in the last few months, but he still walks funny, his legs too far apart, and prefers crawling 2. when you hold him, and set him on the ground, his legs buckle underneath him 3. he feels like low muscle tone in his arms or legs 4. his fine motor skills are not very developed. he is just starting to grab spoons, and hold his own bottle. 5. he seems pretty typical in size and weight for his age developmentally: 1. his family does speak 3 languages, english, german, and chinese, and B barely speaks a word. he seems to follow chinese best, but it is hard to tell. he shakes his head no, and repeats a "nuh" sound, but that is all i heard spending a day with him. mama says he doesn't talk any more at home. 2. all the family members think he either has a hearing problem, or autism, or both. he doesn't really react to his name, and doesn't respond much to noises. 3. he can follow a point, and points independantly. 4. he is only just starting to take an interest in feeding himself, can self-feed by hand, but not with a spoon 5. he can pour water from cups, take things in and out of containers, push a car, but can not make a block stack 6. he is very loving, likes hugs, makes eye contact (sometimes) 7. he seems spaced out sometimes, like he is in his own world. 8. he is not even beginning to take an interest in body functions. not even to complain of a wet diaper i know many of these things point to autism, but that is not where my gut goes. there seems to be a lot going on developmentally. i am not looking for armchair diagnosis, but for more specific suggestions on how to help him what kinds of tests? or therapies? or questions to ask? doctors have all said he is "fine" that there is "nothing wrong, he just develops at his own pace" if we were talking about an 18 month old, i would believe it, but this boy is turning 3 in november. something else is going on here. thanks for any replies

[askew]

I would look at Genetics. Maybe get a chromosome study. A lot of chromosome disorders, or syndromes, come with a variety of developmental delays. The thing that made me go right there is the low tone. Low tone is often seen in genetic errors. 

[jennabean]

I would 2nd the idea of a genetic work up.  My son has 22q11.2 deletion and many of the things you describe sound similar to him...he'll be 3 in a few weeks. The delays you describe for your cousin-in-law's child should be sending up red-flags... we were looking for answers for Al before his 1st birthday.  I cannot believe they've just chalked his delays up to just normal differences in kids :(  A few people thought autism about my son as well, but I knew that wasn't it... I knew it was something else.

The microarray test my son had done is pricey, like $3000 if insurance hadn't covered it so I have no idea what their situation is like fiscally... are they concerned as well or do they think everything is fine?  It might be tricky broaching the topic if they're not on the same page as you.  Best of luck :)

[FischK]

I have no answers, except that I know people in Germany who have no problem getting help for their children with developmental delays, so I question that there is no such thing as early intervention. From what I understand, the starting point in getting help is to go through the pediatrician who can establish connections with professionals evaluating delays.

A quick websearch turned up this:

http://www.fruehfoerderstellen.de/index.php?id=106

The website also has other information and links that should make it easier to find help.

Good luck.

[bremen]

please forgive my lack of detail here, because, as i said, we live in germany, mom is chinese, and we were speaking in english when we talked about B. A lot of accuracy gets lost throug that many translations.

B has been to peds many times. He had physical therapy when he was a baby. He couldn't sit up until 10 months.

they recently did a "brain scan" (not sure if ct or mri) and  said he is normal.

they tried to send him to pre-school, and the one for typical kids would not accept him. they tried to send him to one for kids with disabilities, and the doctor there said that he was normal, and not accepted to that one either.

i am meeting B and his mom later in the week. i will mention hearing tests and genetic tests

the biggest hinderance is getting started. his regular pediatrician says he  is fine. he is slow, but developing at his own pace. nothing to worry about. it is very hard to get services unless your regular ped is on board.

mom's english is much stronger than her german (german is her 4th language), and it is hard for her to navigate the german bureaucracy. Dad is very german, and thinks if all the professionals say there is nothing wrong with B, then they must be right. I am trying to help B's mom find the right help for her son.

[melissa17s]

Find a different ped.   Search out one specializing in disability, and be insistant.  Ask for referrals to specialists like physical therapy, occupational therapy, and speech therapy, etc, and make sure they are aware that preschool would not accept him.  MRI and CT are good for finding tumors, lesions and unusual brain formation, but not if the brain is working properly.  If his scan was ct, it is fast, but mri take time and require child to be very still.