Monday, April 10, 2006

Better Living Thru Pharmacology

Achromic asks about Little Man "do (his problems) they mean that he has to be watched if he is awake?" Oh my good gosh freak out yes! I guess I need to be more explanatory about our beloved son's "issues".
We call him alphabet soup boy, he has so many letters. EOBPD, CAPD, ADHD, and so on. Those letters, by the way stand for Early Onset Bi-Polar disorder, Central Auditory Processing Disorder and Attention Deficit-Hyperactivity Disorder. The way these letters impact our lives, follows: EOBPD, the way it is mostly manifest is by irritablity, whether he is manic or depressed. It is part of the sleep issues. Probably, besides his genetic syndrome no one has heard of, causes us the most problems. CAPD: nothing wrong with his ability to hear, but his ability to process what he hears is significantly impacted. Sometimes you feel like you are talking in slow mo trying to get him to "get it". ADHD is probably self explanatory. Unmedicated, he moves constantly and has the attention span of a mosquito. Besides all that, he has a refactory seizure disorder, which means he still seizes daily, inspite of his 4 seizure meds and a
Vagal Nerve Stimulator. He also has Raynauds Syndrome, which cause his blood vessels in his hands and feet to constrict when it is cold outside. And last but certainly not least he is also autistic. He is delayed mentally, (IQ of 51) He is delayed physically, he can walk and run and talk, but all below what he should be able to do.
This is a long winded answer to dear Achromic's question. Yes, he needs to be watched like a hawk, all the time. It is time consuming and energy depleting. Kind of like having a baby in a 8 year old body. He is rather dangerous, and he is also capable of getting in or out of places he shouldn't. Lest you should think it all dreadful, it isn't. For the most part, within the house, while we are up and about, he is pretty good. I can usually get dinner cooked, or something done. (Usually, but not always.) A bad day might mean I had to give him just about all my attention the entire day. He does go to school, and he is in a theraputic afterschool program too, So that means I have plenty of time during the day to get things done that are important to me. And yes my little dumplings, that includes keeping my bloggy friends happy!
I just got a call from the psychiatrist's office and we are going to try going up on one of his meds. Let me tell you, messing with our boy's medications frightens me to death. I feel as though I am walking on the edge of a cliff and anything could blow us off. Since sleep has been an issue since his birth, according to hospital records and his first foster mother, we assume the prenatal heroin exposure also has something to do with it. The cause of the problem means a good deal less than the direct result, which is that his daddy and I can only go a few days without sleep without going completely out of our minds.
This is a fairly depressing post so far, but don’t worry little darlings, I will leave you with cheerful words and the exquisite delight of the 1000 word essay in just a few pixels.
First, the 1000 word essay:
Image hosting by Photobucket
Second: Our Little Man, problem or not, is beloved and cherished by our entire family. My heart has been seared in pain, and my love expanded by my son’s incredible courage and amazing ability to laugh and have fun, even in the tough times. He is a hero, our little guy and there is never a day that I doubt God chose him for our family. Not for him to be blessed, but for us to blessed by our son’s love, given, as he says, “Big Much!”

2 Kids Who Want To Play:

achromic said...

Wow that is amazing. I can't believe they are able to dignose so much! That is at least a good start to figureing out stuff. I am glad that your Dr. was able to make some suggestions.... I know that playing with meds can be all sort of scary but I imagine that with his changing body it has to happen! Thank you so much for answering my question, I hope I didn't seem nosey, I don't intend to be. AND I LOVE THAT PIC!! he looks so happy! Actually .... when I use to work with kids, working with speical needs kids was my favorite thing to do.... I don't tell many people that because they just don't/can't understand. Yes it did take a lot of care... but it was also very rewarding in a way that wasn't the same with other kids.... Ok ok you pulled it out of me I always felt like there was a little bit of magic that they had inside but shhhhhh I don't want people to think I am crazy. :)

ipodmomma said...

what reciprocal blessings you are to each other...

my prayers for you all, for sleep, joy and much love...