Fed Up with Doctors
Pauleen
angel52294@aol.com 

Developmentally delayed, & static encepholpathy.  He is not a FAS baby... 

Has been receiving help and therapy for his developmental delays already?

Do you have a good physical therapist? YES 

Occupational therapist? YES 

How often does he wear his AFO's? ONLY WHEN WEIGHT BEARING 

Does he weight-bear on his legs without them? YES 

Does he play on the floor on his belly? YES 

Is he able to lift his head very well, push up on his arms? YES BUT DOES NOT DO THIS A LOT 

Does he attempt to crawl or move himself in any way? BOUNCES HIS BUM SCHOOCHES ON HIS BACK PULLS UP TO STAND CRUISES A LITTLE BUT UNSTABLE 

Can he sit unsupported? YES AS OF 18 MONTHS 

Is his muscle tone tight or floppy? HYPERTONIA

Concerning Goober's birth, do you know what his apgar scores were? No, I had a c-section & they never told us, we could not see, & we do not remember him crying right away, it was a short time after he was born before we recall him crying 

Did he have any problems during the first 24 hours of his life that required the administration of oxygen or any other medications? No, not that we are aware of. 

When were you able to take him home and when were you discharged from the hospital? 4 Days both of us

Did he suck and swallow shortly after birth? He would not suckle the breast he took time with his bottle too. Did he sleep a lot? Yes, he did we had to wake him to feed him every 3 hours. 

Was there any indication that he was anything other than a healthy baby during the first days of his life? His neck was floppy more so than a normal baby. He would always slump to the side when put in a sitting position. 

When did you or your/his physician first notice that he was not developing at the appropriate rate? When he did not develop the milestones holding head up he was & still is a kicking baby he was just floppy as a baby? 

They said he has to grow some to give a better Dx ... All we were told was developmentally delayed, & static encephalopathy they do not know how or when it happened when I said CP to the doctor he said it is basically the same thing when I look up static encephalopathy I get a lot of fetal alcohol syndrome & I did not drink or use drugs at anytime pregnant or not. He has a lot of the symptoms of a baby with CP. He also has trouble eating according to the evaluation it said he demonstrated linear anterior posterior movement of tongue minimal literal of tongue to form a button to swallow demonstrates decreased strength throughout mouth/jaw demonstrates animal chew to bite off a cracker sucks on crackers, fruitloops to soften them then swallows food he demonstrates tactile defensiveness with chunky food such as spaghetti O's tolerates juice but does not tolerate noodles he demonstrates immature pincer to pick up small pieces of food.... He has had the following tests b! lood work cpk, aldolse, t42, tsh, chromosomes, prader-willi study,.......eeg video eeg, mri all where normal.

 WE HAVE A 21 MONTH OLD son WHO WENT THROUGH TESTING, HE IS NOT WALKING OR CRAWLING, THEY WERE 90% SURE HE HAD CP. WE ALREADY HAD the following tests: MRI, EEG, BLOOD WORK, WE SAW A DEVELOPMENTAL PEDIATRICIAN, A NEUROLOGIST HE HAD A VIDEO EEG ON TUESDAY 11/9/99 HE IS WEARING ORTHOTICS (AFO'S) ON BOTH OF HIS LEGS & FEET THIS IS ALL NEW TO US. We came home from the doctors on 12/15/99 and he gave the dx of static encephalopathy he said it is like CP. But they did not know how why or when it happened he is DEVELOPMENTALLY delayed so this is the dx the doctor used.

 He was delivered by a c-section. I went in on 4/21 & delivered 4/24 the labor was also induced they broke my water a long time before he was born labor was long & difficult his heart rate fell twice the second time it went to 55 the nurse said while in my room this is when they did a c-section at 4 1/2 months pregnant I had a gush of fluid I thought my water broke here I had blood as well as fluid we went to the hospital in fear we were going to lose the baby, but they said all was well with him & my fluid level was OK. He seemed to be a healthy newborn at birth. He did not require anything he stayed in my room.  He would not breasted although I got an infection the next day after delivery but was never told why or what it was or what caused it Feel free to e-mail me anytime sorry this is so long... angel52294@aol.com  Let me know what you think.