First off, the technical stuff ;)
Medications currently on (and the combination that has worked miracles for my sweet boy...)
*Amantadine - 100 mg at 8am and 2pm
*Concerta - 36 mg at 8am
*Tegretol - 400 mg at 8am and 8pm
*Seroquel - 50 mg at 8am
*Seroquel - 100 mg at 8pm
*Benadryl - 25 mg at 8pm
Now, I know you are probably falling out of your chair saying holy cow that is a lot of medicine! But you have to understand the battle Eli's little body is dealing with daily to understand the reasons for treating him with the meds he's on.
His diagnosis is officially PDD - NOS (Pervasive Developmental Disorder, Not Otherwise Specified) which just means that he's on the Autism Spectrum. Also, he has ADHD and ODD, Oppositional Defiant Disorder. Kids who are ADHD and ODD cannot take a stimulant, usually... It's just too much for their bodies to handle, and it makes everything worse...the aggression gets worse, the anger...frustration. BUT for Autistic kids, many of them have to have the stimulant to give them the ability to focus, pay attention, learn from their therapy or school, and/or just participate in life. For Eli it makes the difference in him sitting by himself (not on it) or wanting to be around kids and other people (when he's on it). So it's a catch 22...you give him the stimulant and even though he wants to be with other kids, he can't really handle being around them. So that is where the other meds besides the Concerta come in. The Amantadine is an anticonvulsant that actually relaxes the body and the nervous system so it doesn't get so wound up. The Seroquel and Tegretol are mood stabilizers, so that it helps calm the "crazy energy" side effects of the Concerta, and it makes the Concerta actually do some good for him and he gets real benefits from the combination.
Out of approximately 17 different meds...different combinations, different dosages...FINALLY he was in a place that they slowly got him off of what DIDN'T work, and he is on something that does.
Now, I know you are probably falling out of your chair saying holy cow that is a lot of medicine! But you have to understand the battle Eli's little body is dealing with daily to understand the reasons for treating him with the meds he's on.
His diagnosis is officially PDD - NOS (Pervasive Developmental Disorder, Not Otherwise Specified) which just means that he's on the Autism Spectrum. Also, he has ADHD and ODD, Oppositional Defiant Disorder. Kids who are ADHD and ODD cannot take a stimulant, usually... It's just too much for their bodies to handle, and it makes everything worse...the aggression gets worse, the anger...frustration. BUT for Autistic kids, many of them have to have the stimulant to give them the ability to focus, pay attention, learn from their therapy or school, and/or just participate in life. For Eli it makes the difference in him sitting by himself (not on it) or wanting to be around kids and other people (when he's on it). So it's a catch 22...you give him the stimulant and even though he wants to be with other kids, he can't really handle being around them. So that is where the other meds besides the Concerta come in. The Amantadine is an anticonvulsant that actually relaxes the body and the nervous system so it doesn't get so wound up. The Seroquel and Tegretol are mood stabilizers, so that it helps calm the "crazy energy" side effects of the Concerta, and it makes the Concerta actually do some good for him and he gets real benefits from the combination.
Out of approximately 17 different meds...different combinations, different dosages...FINALLY he was in a place that they slowly got him off of what DIDN'T work, and he is on something that does.
He is a completely different child. Today has been WONDERFUL. During the meeting, the report was that he has had many more greens and yellows, and although the reds are there, they aren't for hitting or pushing so much. So YAY! We then left there with the go ahead for the weekend pass, and headed directly for Chili's. He ate a great lunch, then we went to the Austin Children's Museum. It was a great museum, and we had a great time exploring it. I was so proud of him...when a little boy came and took a truck away from Eli, he just said, "Okay, he can have it" and then he found other things!!! I was SO PROUD of him!!! And a grandmother even came up to me and told me how well behaved he was, and how she believes that children don't behave as well as him these days!!!! (That was because at story time, when the guy was done reading books, he offered stickers to all the kids. The oldest boys like TRAMPLED the little kids and were pushing and shoving to be first, and Eli just sat in his chair and said he'd wait until they were all done getting theirs to get his!!!) If that lady only knew what a glorious moment that was for me...I got so choked up I just thanked her like 4 times and that's all I could say. I don't think I'll ever forget how proud of him I was at that moment. It was like "It's gonna be okay. We're gonna be okay. This was worth it...it was what he needed." It was a much needed feeling for me...I KNOW we've done the right thing, but sometimes it doesn't feel that way. And the constant questioning from other people of "How can you leave a 5 year old alone like that" doesn't make me feel fabulous. But it has been what we needed...And today was proof of that.
Now, I will state 100% EMPHATICALLY that we are in no way out of the woods. This will be a constant fight, and the medications will need to be updated as he grows and his body chemistry changes. But for this moment we are surviving...and we are happy...and we are doing everything that we can for our precious little Eli.
So from the museum we went to Target to get him a toothbrush and some soap that won't burn his eyes (he is seriously scared of soap burning his eyes...to the point of crying if he thinks he has to get his face wet in the bath). Then we went to get his hair cut, and he did great! Then we grabbed dinner at Sonic and brought it back to the hotel to eat while we watched Disney channel and some cartoons on Nick. He had the best time getting to take a bath (he only takes showers at Meridell), and we made boats for him to play with out of cups and lids and straws :). Then I scrubbed him till he was pink, scrubbed his feet with some exfoliator stuff, clipped his nails, and conditioned his hair, moisturized him, and now we both feel a million percent better. I am not sure if it's just me, but I'm not sure how well he is washing up, and I know he's not getting his ears and face very well. Do most 5 year olds bathe themselves? I just don't think that a 5 year old could be that thorough... So at least he's clean tonight. Oh...and I scrubbed his teeth for 3 minutes solid!! :)
He is now watching Phinneas and Pherb, and rubbing his eyes looking really tired.
I am thinking we will get up in the morning, get out of here in time for lunch, and then go find a movie either at an IMAX or at a close theater and do that before I take him back to Meridell. He doesn't have to be back until 6:30, but with all the extra plane tickets we've had to buy, plus the fact that we are MOVING in a week and a half (just to base housing at Fort Belvoir in DC), we just need to save all the money we can; and every extra hundred bucks helps.
Alrighty, well I'm gonna wind this post up and leave you with just a couple pictures that I snapped today/tonight. Thank you for reading and for checking in on us...
Now, I will state 100% EMPHATICALLY that we are in no way out of the woods. This will be a constant fight, and the medications will need to be updated as he grows and his body chemistry changes. But for this moment we are surviving...and we are happy...and we are doing everything that we can for our precious little Eli.
So from the museum we went to Target to get him a toothbrush and some soap that won't burn his eyes (he is seriously scared of soap burning his eyes...to the point of crying if he thinks he has to get his face wet in the bath). Then we went to get his hair cut, and he did great! Then we grabbed dinner at Sonic and brought it back to the hotel to eat while we watched Disney channel and some cartoons on Nick. He had the best time getting to take a bath (he only takes showers at Meridell), and we made boats for him to play with out of cups and lids and straws :). Then I scrubbed him till he was pink, scrubbed his feet with some exfoliator stuff, clipped his nails, and conditioned his hair, moisturized him, and now we both feel a million percent better. I am not sure if it's just me, but I'm not sure how well he is washing up, and I know he's not getting his ears and face very well. Do most 5 year olds bathe themselves? I just don't think that a 5 year old could be that thorough... So at least he's clean tonight. Oh...and I scrubbed his teeth for 3 minutes solid!! :)
He is now watching Phinneas and Pherb, and rubbing his eyes looking really tired.
I am thinking we will get up in the morning, get out of here in time for lunch, and then go find a movie either at an IMAX or at a close theater and do that before I take him back to Meridell. He doesn't have to be back until 6:30, but with all the extra plane tickets we've had to buy, plus the fact that we are MOVING in a week and a half (just to base housing at Fort Belvoir in DC), we just need to save all the money we can; and every extra hundred bucks helps.
Alrighty, well I'm gonna wind this post up and leave you with just a couple pictures that I snapped today/tonight. Thank you for reading and for checking in on us...
4 comments:
I don't know about most 5 yr olds, but I have Scott wash himself, including his hair. I do have to pop in every few minutes and say "did you wet your hair? Did you put shampoo in? Did you rinse your hair?" etc... I probably should trust him more to do it himself, but I figure the more I remind him, the faster he will get tired of me asking and make sure he gets it right the first time. I don't know. Maybe I am just wacked.
I am so glad things seem to be working for Eli! That is great news! I'm also glad that you finally got one of those super proud moments to reassure you. We all need reassurance, even when we KNOW we are doing the right thing.
Curious.....why is Eli on Benadryl? Is this an all the time thing?
What a wonderful update! If he is on the spectrum, PDD NOD is a good place to be. That diagnosis and the effective medication combo is a great sign for the future. I am so happy for you guys!
Yea for answers and solutions, even if the solutions are only temporary!! It sounds (and looks) like Eli is doing great, I know you still have a tough road ahead of you, but I hope that this is the worst part of it!!! We will continue to pray for you all, we love you!!!
Hey I am so glad you had such a great time with Eli! It sounds like you may be close to spending more weekends like that with him. As far as the bathing thing...My girls just turned 7, They have been bathing themselves for about 2 years now. (only because if one did not do a good enough job, I knew her twin would rat her out) Just yesterday one twin said her head was itching really bad. I asked her what she thought may be causing the itching...she said it could be because she hasn't used shampoo for a couple of days...YOU THINK!!! I do not let the girls take showers because water is EVERYWHERE when they are finished. I am sure he is getting as clean as HE needs to be. That is a tough call.
Andrea
Post a Comment