What can I say about this young man? Christopher was born on June 27, 1988. From the moment they handed him to me I knew something wasn't right! But, how adorable he was. He had the thickest and longest dark brown hair I'd ever seen on a new born. His complexion was an olive tone and not one wrinkle anywhere on his little face. Which had the most perfect eyebrow's, to-boot! He was so beautiful and so little. Six pounds 4 ounces. My daughter was just a little over eleven pounds, so he was tiny in comparison!
Christopher was finally diagnosed at 6 months old. We had tried several times to get the blood work done but the doctors and nurses called him a "hard stick" and couldn't get a vain to hold a needle. At six months old he was hospitalized for 2 weeks with phenomena when we came far to close to losing the little guy! It was during that hospitalization that they were able to get the blood for the chromosome test.
The neurosurgeon told us that if it was good news he'd tell us on the phone otherwise he would call us personally and ask to set up an appointment. He called and we sat up the appointment for the next morning.
From that point on, life with Christopher has been a complete joy, complete heartache and non stop work. He crawled at 18 months and drug his head most of that time. He started walking at two an half.
Christopher has a very small verbal vocabulary, although he talks all the time. He uses sign language, gesturing and pointing as a way of communicating.
He had problems with eating as a baby and toddler, but with a lot of therapy he was finely able to swallow food and drink. He still "leaks" as I call it but the boy can and does eat!!!!!
Christopher is still not potty trained, he wears a pull up all the time and rarely will he go use the toilet. We believe this to be one of several severe behavior disorders he has. In one hand, Christopher is a loving, sweet, funny, warm and engaging young man. On the other he is like a raging storm. He is very aggressive when angry and gets angry for no apparent reason many times a day. He is currently taking Seroquel, Guanfacine and Trileptal for these behaviors. They were were working great until about 7 months ago. Now he is being sent home from school everyday of the week by no later that 10:00 am.
We've done evaluation after evaluation and no one seems to be able to give us answers. He throws food across the house or at people at home and school. He hits, pushes and bites others as well. He is verbally aggressive with lots of gesturing and yelling. The doctors keep telling us that we need to place him in a group home or the state school. Group homes here in Texas won't take a child with such behavior issues and the state school just isn't an option for us!
One thing about Christopher that I do know for sure is that he is one of Gods angels here on earth. He has the most gentle and loving side to him I've ever witnessed in another human being and I feel blessed he's been put in our care.Please feel free to e-mail should you have questions, comments or advise on the behavior issues. I will respond ASAP.Update
I'm glad to say that things with Christopher have improved dramatically. Please don't misunderstand, he still has his moments and they do come every single day with out fail, but his aggressive rages aren't nearly as bad and don't last nearly as long as they had in the past. I contribute this improvement to the increase in dosages of his meds and to the Androgel. Christopher has been on the Androgel for a little over 2 months now, the patch before that...(the patch doesn't stay on), so we switched to the gel. As I had said in the earlier entry, every doctor told us NOT to do hormone therapy, that it would only make him bigger and stronger. This it has done, he is most definitely going through puberty now. Body hair, genital growth and his sweet little voice is changing. But, I do believe that it is a major determining factor in the improvement of his behavior. We forgot to put the gel on him one morning and he turned into an animal! Well, we applied the gel and within fifteen minutes he had calmed down and turned back into my adorable little boy. Amazing, absolutely amazing. The Endocrinologist told me that the hormone therapy was medically sound but that it would not be my "Magic Bullet". We go back to see him on the 7th of July and I can't wait for him to see the improvement. About 2 weeks after he was started on the gel he started seeing a Pediatric Psychiatrist through MHMR. This doctor was comfortable with raising Christopher's dosages to an adult dosage on two of his medication. He also started him on Concert, which is for ADHD. Now Christopher takes 600 mg of Trileptal twice a day, 300 mg. Seroquel 3 times a day, 150 mg Guanfacine 4 times a day and two 56 mg barrels of Concerta every morning. This combo has made living with Christopher less stressful and a hec of a lot more peaceful not to mention FUN! He is able to sit and focus on his school work much longer now and is actually spelling some words now. We also have started having an in home trainer come in once a week. We're blessed that it is Chuck, his educational assistant at school, who is a dream come true for us. Christopher just graduated middle school and will be going into high school in the fall. We were finely able to get the school to agree to let him have his own personal educational assistant and again, it will be Chuck. Christopher and Chuck adore each other and he responds better to Chuck than he has any teacher or EA to date.Also, on the Saturday before Easter, Christopher was coming down a slide at a near by park and broke the growth plate in his right ankle. This required a full length cast for 6 weeks, to keep him off the leg and then a walking cast for another 6 weeks. During the time he was in the full length cast we were having to use Tylenol 3's to "sedate" him, because he was able to get up and walk with that huge thing on his leg! Mind you he wasn't winning any races, but he was putting weight on it and that was an absolute no no.Prior to all the med changes and Androgel, I was picking him up everyday from school before 10:00am. He is now in summer school half a day and then goes to Day-Hab, which he calls "work" and I haven't been called yet to pick him up early! This alone makes my heart soar! He is much better at controlling himself and being able to pull himself together before stirring up to much trouble.I do hope this helps other parents of these very special little men.Update (10-17-04)
A lot of changes have taken place since my last update. Christopher is much better behaved, however, this is not due to any medication or testosterone. We actually had to take him off the Androgel. After some weeks, he became much, much stronger and far more violent than ever before. I would not recommend testosterone therapy!His meds have changed many times over the course of the last year and we are now in the process of weaning him off of some of them, like the Zyprexa. Zyprexa has made Christopher into an eating machine! It increases the appetite ten fold and he has packed on 65 pounds! The weight gain seems to cause him more trouble than anything. He has a hard time getting up and down and stay's "winded" a lot. It's our hope that taking him off the Zyprexa will help him to drop a few pounds.Christopher is doing so much better in school now. He is in his sophomore year at the area high school and I'm not being called anymore to pick him up early. He goes a full day, everyday and then to an afternoon day hab program till 5:00 every weekday. This has proven to be very effective for Christopher, as he is re-learning new behaviors. He is almost completely potty trained. He does still have the occasional poopy pants but that's more a behavior issue than just not being able to hold it. He gets a lazy streak and prefers not to get up from his play, work or whatever he may be doing. It's our hope that this too will change soon, as changing messing pull-ups on an almost 17 year old boy is challenging at best.Christopher is also having to learn to deal with the loss of his Grandmother. She passed away after a short but straining time with lung cancer. She was Christopher's favorite person in the world and he still just doesn't get why he can go see his "Mo" as he calls her. He often uses his "cell" phone to ring her up in heaven. He thinks we should be able to drive there and see her and get cookies. It's heartbreaking but so very sweet to see him "talking" to her on his little cell phone.I guess that's it....for now at least! I'm hoping that my next update will include him being 100% potty trained and completely off the drugs and a charming, funny young man.Story Submitted by: gigi8688@sbcglobal.net
