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Neurology (Expert Forum)
Please help me understand...
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury
Please help me understand...
by For My Son, Jun 10, 2003 12:00AM
I dn't even kow where 2 strt. My son is 9 mnths old. While I ws prgnnt I hd severe pains at times & addrssd tht w/my OB but ws always tld everything ws ok. The OB even suggested tht Jackson ws going 2 b at lst 8 lbs. Needless to say whn I ws n labor, his heartrate drpped n the lw 70's numerous times. Thy kpt bcking off the potossin & mving me arnd on my side 2 try and brng his heart rate bck up. They preped me 4 a C sctn, but I delivered vaginal. Jackson only wghed 5 lbs. 3 oz. whn he ws brn & he wsn't breathing. Thy discovered tht my placenta hd tore & tht the umbilcial cord hd problems. Jackson wsn't able 2 cntrl his blood sugars & his bld ws very thick, he ws luthardigic. Thy drained his blood & replaced it w/saline. His platelet count drpped 2 a dangerous lw but he finally ws able 2 rebuild tht. Since he was released frm the hospital we have overcome many challenges. He hd difficulty eating whch we hve overcome & we r fnlly eating baby food. He is behind at lst 2 mnths on his development, he is currently in physical theropy whch is doing wonders. He hd a 2 mnth prd where he only gained a lb. & grw 1/2 an inch. He is growing a lttle mre nw, he weighs 15 lbs. He hs bn diagnoised w/nystagmus. I notice tht he hs a lzy eye. Thy hve dne a MRI whch determined tht his brain does hve a 2 mnth delay n developing & his cellbellar tonsils r displaced 2 mm. Thy r n the process of doing genetic testing to see if thy cn mtch him 2 a sydrome. Jackson hs bn congested snce Xmas and n the lst 2 mnths he hs hd 4 ear infections. Whn I srch the internet I fnd nthing 2 assist
Doctor's Answer
by CCF-Neuro-M.D.-JT, Jun 13, 2003 12:00AM
Your son's case is quite complicated starting with his delivery. There are a number of possible reasons why he is delayed: the difficult labor and delivery, the rough time he went through immediately after birth, metabolic or genetic causes, etc... Unfortunately, there's nothing in the post that really stands out for one specific cause for his symptoms/delay (meaning there;s certain things that point to one particular disease or another, but aren't mentioned in your post - for instance down's syndrome children have particular facial features that make them easily recognizable). Glad that he is making great strides in PT. As for the workup thus far, it's very difficult to read an infant;s brain MRI and should be done so by a pediatric neuroradiologist. If you've not already done so, consider a major academic pediatric hospital where they have specialists and state of the art equipment. His continual improvement is encouraging and it sounds like you're doing the best that you can for him. Good luck to you and your son.
I justed wanted to let you know that you are not alone. I too have a child with delays. My daughter was born with low muscle tone. She is 15months. She has a droopy eye lid she had sugery on at the clinic at 8 months old. at that time she had a normal MRI. In addition she had 2 EEGs that were normal. She had some genitic testing done that also came back normal. She goes to pt/ot once a week. She can sit on her own, but doesnt walk or crawl and only makes aww sounds. I have tried to post questions on this board, but it is always full. That is great that your son is progressing in theopy. It is so hard sometimes to see friends children walking and crawling and my daughter has to stuggle to stay sitting up. I know it could be alot worse and I know I am blessed to have her. I am thankful for the advanced in medicine today that these kids have a fighting chance. I pray that your son keeps getting better. good luck