This page is all about Phillip. I know you'll enjoy getting to know him! :)
Phillip was born in January 2001 at 38 1/2 weeks, and weighed in at a whopping six pounds! Though tiny, he scored a perfect 10 on his Apgar Test! He was perfect! (At least on the outside.)
His problems actually began in the hospital, but we didn't know they were 'problems' until much later. Phillip didn't want to nurse when he was in the hospital, he would try and get so frustrated that he would just cry and cry. After two months of crying, being hungry all the time, and crying some more I decided to put him on a bottle. WOW! What a difference. Phillip gained seven pounds in a little under two months!
We thought things were ok after that... but then Phillip didn't hit any of his milestones, he couldn't hold his head up properly (even at 6 months), he wasn't rolling over, trying to crawl, or sitting up, he was just perfectly happy being held, loved on, and smiling at everyone.
Then it happened... one Sunday evening after a VERY long trip I brought Phillip in from the car and he was smiling but I couldn't get him to look at me, or to respond to any noises... I had no idea what was wrong so I called his Dr (who is NO LONGER his Dr.) and she said that since he was smiling that he was probably ok and if he did "it" again to take him to the hospital. Well, he went to sleep after that and it did'nt happen again... until a few weeks later.
I was at a friends house when she heard him coughing (we were up talking and it was late) so she went to check on him and then I heard her cry out for me, so I went running and there was Phillip, lying motionless on the bed and he was an awful shade of paste. He had thrown up, and every once in a while he would try to turn his head to throw up, cough and gag but that was it. We grabbed him and my friends daughter up in a flash, ran to the car, rushed him to the ER (which was thankfully just a few minute away) and then got MORE terrified when they took my child from me and ran into the ER with him. By the time I found him there were about 7 Dr's and nurses around him, poking him, putting in an IV and talking in terms that I had NO CLUE what they were saying. I was terrified & alone. Finally as they were talking about drugging him, etc. I leaned over him to protect him and told them not to poke another thing into my child w/out telling me what was going on. They explained to me that Phillip was having a seizure and that they had to give him meds. to get him to quit, and he had to have oxygen, etc to make sure he was safe . . . a seizure... my perfect baby? I was so scared...
After many tests, many doctors, 2 days in the hospital, lots of medication, and being awake for longer than I care to remember being scared out of my mind... Phillip got to go home! He was on so much medication that it seems he slept for the next week. It turns out that he has Cortical Dysplasia (which I will explain on another page) and that it was what caused the seizure (and would eventually cause many, many more).
From the day we were released from the hospital, until almost one year later.... life was VERY busy and TOTALLY SEIZURE FREE! Phillip was on Phenobarbitol and never had a 'break through' seizure or any at all. It was great... except for (what we thought was) the side effects. Phillip grew more and more aggressive, and seemingly more "out of it" as the year passed. We had no idea what was going on, so we called his neurologist and spoke w/ his nurse. I told her that Phillip was being really aggressive and wondered if it could be because of his meds. I am not aware of what she told his Dr. or what he told her, but she called me back and said "Stop giving him the meds." So... being a parent of a FIRST child, never having dealt w/ seizures, medication, etc. before... and being naive enough to believe that Dr's and nurses knew what they were doing... I stopped giving it to him... cold turkey...
And almost exactly ONE year after his first hospital trip: Phillip landed in the hospital with a seizure that almost took his life. He stopped breathing, started turning blue, his heart was racing, and it took 5 shots of valum (sp) to get him to stop... at one point the seizure was so strong that even after all the meds... his eye brows started moving up and down and that was the only thing that moved on his entire body... he was still seizing.... after about 30 minutes! It was the most horrifying night of my life... even more scary than the first night because they couldn't get it to stop! He was given a loading dose of Phenobarb (loading dose = a really large dose of the meds. to get it into his system really quickly) and all those shots of valum and finally stopped seizing and was in the hospital overnight and most of the next day.
When we left the hospital he was so irritated that NOTHING made him happy. He wanted to watch tv but when you turned it on he whined the whole time it was on, he wanted something to drink, but when you gave him a cup he threw it aside, he wanted you to hold him, but you could never hold him "just right". I got to the point that I was wishing we had stayed in the hospital... and he finally went to sleep for the night and was a little better the next day.
Thankfully we have never been through that again... there have been some really scary times... but nothing like those two nights!
For five years- Phillip had complex partial seizures (learn more on another page...) and then "out of the blue" - in early 2007 - he started having tonic clonic seizures (also known as Grand Mal). His entire body stiffens for just a second and then it seems as though he's "almost" normal. Then he throws up or goes to sleep. These are scary just because of the intensity in those few seconds. Lately - his seizures have become scarier - he's having full on shaking, not breathing, turning blue seizures. He's had a few of them now - two of them ending in visits from the Rescue Crew (thanks Guil-Rand Fire Dept!!!) and one landing him in the hospital for a day. He stopped breathing and then was unconcious for longer than I care to remember.
Now - he's seeing a new Neurologist who - I must say is the BEST we've ever seen (Thanks Dr. Gallentine @ Duke!!!). He's on Keppra, now and off of his trileptal -which
So... in the past almost 7 years Phillip has been on four different kinds of seizure meds (which I hear isn't too bad compared to some other people). He is currently on two. :(He has had more seizures than I can count, but has still been luckier that lots of people with epilepsy, because some ppl have MANY MANY seizures a day.) He went through periods that he didn't have any for months, then times when he would have 3 or more a month. It's been a long hard road.. especially for him. He has made many strides, only to have a seizure (or multiple seizures) and backslide.
He has been in Speech and Physical therapy most of the time since he had the first seizure and he had occupational therapy for a while. He has had MRI's, EEG's, 2 eye surgeries for strabismus (lazy eye), worn an eye patch, worn arch inserts because his feet turn down, and Pediatric AFO's. He has been dx'd (diagnosed) with Cortical Dysplasia, Epilepsy, Autism (though debatable from one doctor to another), Mental Retardation, and ADD.
He was in public school from 3 years to 6 1/2 years. He was homeschooled for a while - and this year we are trying to decide WHAT we are going to do with him.
He has had to have blood tests done every couple of months (and sometimes 2 or 3 times a month) to keep up with everything going on in his body. He has been in and out of the hospital, not gotten to do things that he really wanted to because of his seizures (like riding the tea cups at the fair- because small circles induce seizures) or playing with a game boy.
And through it all.... Phillip smiles. He smiles when he sees you for the first time, the second time, and the many times after that. He will LOVE you, whether you love him or not and he will NOT forget you. He doesn't forget a face or a place! He LOVES The Wonder Pets (his current obsession), Dora, Barney & Elmo and he loves to 'read', ride anything that moves (Power Wheels, 4 Wheeler, go-karts, fair rides, whatever), play on the computer, go to the water park, and 'wrestle' with his daddy! He LOVES songs that have hand motions to them. He can say LOTS of words and is FINALLY starting to put a couple of words together - and he's starting to SING!!!! He copies lots of things that he has heard on tv (i.e. 'we did it', 'yum yum yum') which he uses appropriatly (this is called "echolalia") . But still... some talking is better than no talking! SOON - he is getting an augmentative communcation device & we can't wait!!!
Anyway... Phillip now has an Autism Assistance Dog through an AWESOME place called 4 Paws for Ability. You can check them out on the web at www.4pawsforability.org or you can read about them on Phillip's page called "ABOUT 4 PAWS" and "PHILLIPS A.A. DOG" Happy Reading!
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