Children with pda,hie,seizures,visual problems n fedding problems help n advice?

my son was born on the 21st nov 2008 three mnth early,whilst he was in hospital he suffered 3 bleeds to his brains n suffered seizures n died 4 times whilst on scbu.since coming home we found out he has pda a heart defect,hie which is cerebral plasy n brain damage n he has problems seeing he has to have light therapy n sensory therapy once a week. but he has seen his dr once in a yr n hes not convinced its cp although our son is 1 next week n cant walk,talk,sit up or crawl hes also cannot eat proply n has to have extra fats in his food called callagen but that isnt helping hes 1 n the size of a newborn n is still in newborn clothes, he has seizures n arches n stiffens up at least three times week they used to be worse but calmed down a bit. he has also started drooping his tounge out n his eye is lazy n he only uses the right side of his body, he having speech therapy a dietition n visual teacher n physio hes got n ot as well, n his gp n pedatrition everyone apart from the pdeatrtion has sen the arching n seziures n stiffening but because he hasnt seen it wont give us medication our son also does not sleep n anything u do doesnt work is anyone experiencing this n knows wot it is or has a child with the same thing that has had a disgnosisChildren with pda,hie,seizures,visual problems n fedding problems help n advice?
I think that the diagnosis of CP is probably correct. He may have other issues as well resulting in his failure to thrive, but all CP is, is an insult to the motor areas of the brain, resulting in a wide variety of symptoms, that can affect just part of the body (the left side, in your son's case) and cause many of the difficulties you describe. Seizures are not uncommon with kids with CP. Neither is difficulty swallowing or feeding. Eye issues are common, too, as are growth issues.





Your child will need lots and lots of therapy and stimulation in order to make his way in the world. He will also need a lot of love. It can't be easy for you, but with lots and lots of attention, your son can do much more than the ';experts'; ever predict for him. I hope you are getting all of the help from the doctors and support personnel that you can, and you might also want to keep a video camera handy to record the baby when he has a seizure--those DO need medication, and you need to stay on the doctors until you get satisfaction in that area.





Best wishes. You are in a challenging situation, it will not be easy, but if you persist you can do what is needed for your child. You might also want to join a support group for parents of children with CP, there are some online and you can get lots of advice from those who have been there.Children with pda,hie,seizures,visual problems n fedding problems help n advice?
my son was born at 40wks and we went home with no problems but days later he had fevers and stooling etc, well, we later found out he had a kidney problem the feeding issues, he kept having pneumonia, he's milk was getting to his lungs and he wasn't growing so he had a g-tube inserted and had 24hr feeds, non stop, he had all the therapies you mentioned with seizures and eye problems, with cataracts. We spent months in the hospital, days at home, wks in the hospital and so on and genetics did all the test they could but no diagnosis at the end. He had so many issues, no cp though and was not growing as he ought to, and no diagnosis, we just managed each symtop as it came, he couldn't sit or walk or roll. He passed in april, drs said natural cause, all his organs just got tied. I tried to reach another mom who lost a son to something similar and has another dealing with the same thing to no avail. I was trying to see if she took any medication I took while pregnant cos one of them has been linked to tardive dyscanisia but she never replied. Just be strong for your son and family, while we pray they find out whats wrong and treat it. Goodluck