frustrated mom of 5

[williamdyke]

I am so glad I found this website. I have searched the web for a support group but since there is no real diagnosis I don't know where to turn. Looks like you are all in the same boat!!! I have 5 children- 2 girls and 3 boys. Although my girls are relatively normal (no major delays, medical problems, etc.) all three of my boys have "issues". We first became aware of a problem when my middle son (age 2 1/2), who has a twin sister,couldn't sit unsupported at 12 months. He wasn't speaking and although he was social he seemed to be in a world of his own much of the time. He has autistic characteristics, obsessions, toe walking, etc but I've been told he is not autistic. We have had him in speech therapy, physical therapy and now feeding therapy due to the recent diagnosis of dysphagia. His other diagnosis' include: global developmental delay, hypotonia,and ataxia. My oldest son who is 5 has also been in speech therapy for the last 2 years due to an articulation disorder. He also has fine motor delays and behavioral problems. My youngest son who is 1 was just diagnosed with a substantial speech and language delay (performing at a 5 month old level) as well as personal social delay. My middle son has been to see a pediatric neurologist who was pretty sure my son had Fragile X (due to strong family history including mental retardation). As of yet, all the genetic testing that has been done has been normal. Although my 2 1/2 year old son has come a long way in the past year or so, we still know there is a problem....we just don't know what. We know that whatever is going on is familial and my other 2 boys and possibly the girls will have to deal with these issues their whole lives.

[Tracey G]

Hi,
Your message caught my eye as I am also mum of 5 (sort of)! Had 3 of my own (sadly 2nd son didn't survive birth) & have 2 stepsons. Eldest stepson is 28 yrs old. My eldest son (21yrs) had problems from birth. This year a geneticist has confirmed what I've always wondered, that my 14yr old daughter also has problems. My sons symptoms sound similar. He was a floppy baby, suffered infections, if he got ill his temperature was garunteed to sky rocket. Both my children saw speech therapists. My son walked on his toes for such a long time (still is seen doing it now sometimes). I asked if he was autistic when he was about 2yrs & have asked again this year but they dont seem to want to answer. He has obsessions, mild to moderate learning difficulties (inparticular numerals) he struggles with money & time still. He has had bone problems & now cracks like an old man, it causes pain but he copes. He has problems socializing & rarely makes eye contact. (Good thing, he does have friends). He has over sensative hearing (but has suffered glue ear & had grommets when younger). He had a squint repaired. He has short term memory problems. My daughter has undeveloped bones in her hands, struggles with maths, has had nystigmus, diagnosed with hypertonia, she is overweight (despite a healthy diet) although son is as skinny as a rake! He had feeding problems, (kinda still does). Could go on but I won't. If you would like to 'chat' more, please email me. TTwidle@aol.com I understand your concerns for the future. Maybe we can help each other. x

[Tracey G]

Hello,
As your son has similar symtoms as mine, I thought you may be interested in what has been discovered about my son. I must say don't get too excited yet, however, they have found a small deletion on Stephen's chromosome 4q. Has your son had specialised miroarray (CGH) analysis done? This is how they found Stephen's. Although they recommend being cautious, they say it's exciting news! It could be the reason for all his problems! They want to carry out further tests but I will let you know the results if you like.