Chris had some strange symptoms at school that developed yesterday with fast blinking eyes, extremely frequent vocalizations, staring upwards, etc., that were very concerning to them that he was having bad reactions to his new med Seroquel. We took him to the pediatrician yesterday and he was prescribed Benadryl to counteract any side effects of the med, and then today we took him to the neurologist who advised us to go off the med gradually and gave us a schedule for that.
We have been reading about tardive dyskinesia – a particularly troubling article is http://www.breggin.com/neuroleptics.html. This article involves schizophrenia and not autism, but it was concerning nonetheless. A more middle of the road article is http://www.ninds.nih.gov/health_and_medical/disorders/tardive_doc.htm. I feel we’re going to try Christopher med-free for a while and perhaps try some nutritional avenues to help him as much as possible. We have been wanting to do this for a while, actually, but we were at the same time afraid to take him off his Risperdal (which he is now off of and is taking Seroquel in its place).
unfortunately now in 2020 neither one of these sites will load — will have to find another.
cut & paste (boy on lap)
for right now a copied note of how things are going….
Colleen was sick the other day but doing better and went to school yesterday. Colleen was complaining about her ears last night. If she has further problems today I’ll take her to the dr. tomorrow (today if absolutely necessary but Chris is home today and has to go to the neuro where we’re there for like 3 hours….). Rog is staying home to help watch Ryan and get Colleen after school.
Ryan has a cold right now.
Yesterday actually seemed very hectic…. it just goes on and on. But Chris did okay – we did end up picking him up at school – we took him to the pediatrician who could not find anything physically wrong with him. (Teachers and nurse etc. were saying they were concerned he was so upset and acting strange that he might be having med reactions). He said the very bad danger signs to look for in med emergencies like the Seroquel he’s on, are him bending his neck back and not being able to return it to the upright position, and him sticking his tongue out and not being able to return to his mouth (aren’t those so strange???!!!). Neither of these appeared so he said just give him some Benedryl in addition to the Seroquel, and that is supposed to counteract any side effects that may occur, just until we see the neuro today.
hope to soon have time to ramble, but here’s just a cut and paste….. simply a copied email I just sent out. Prayers appreciated…….
I wanted to send one final update on Chris and then hopefully things will be calm and stable for a while!
(A summary in case I had missed any of you in rushing to get the prayer requests out – Chris had surgery on his ear 3/10 after he’d caused hematoma on it from hitting it so much. He then destroyed the surgery as we could not keep him from hitting it/picking on it and he had another surgery at the hospital on 3/19. He got out of the hospital on 3/26 after being anesthetized again on 3/26 for the pediatric surgeons to make sure ear was healed (this time under 24-hour supervision). It was, so he was sent home.)
Ugh… a very nice hospital with awesome people but I’m tired of being here! But tomorrow I get to go home…
Chris damaged his ear with self-injurious behavior and had surgery on it 3/10. By 3/17 he had damaged it further as we could not control him to keep him from hitting/poking/punching his ear. 3/18 we spend 5 hours in the ER and 3/19 about midnight in the morning we were admitted to the area’s specialty children’s hospital. We have been here ever since (did go home for 20 hours from Sunday night to Monday afternoon).
Chris has adjusted fairly well now to the routine and the sitters and nurses and doctors. We urgently requested med regulation in addition to his ear attention as he was out of control at home, in the ER, and here at the children’s hospital. A large team is in place to help him and I believe they are helping as he is much calmer. He had ear surgery again Friday night. He shall probably be here about 2 weeks or so.
He was hitting everyone in our family on Thursday and it was completely out of control – he had even hit Colleen (9) and Ryan (2). So we had to get him immediately emergency help.
Prayers and thoughts requested as we continue on this path – he is also going to have a tonsillectomy soon and that will be a tough recovery. There is nowhere for him to go, either, to like a “nursing home/recovery” kind of stage so they’ll keep him here as long as possible and then try and have an aide set up for our house.
The Lord is in control… I just have to trust.
I just read a survey on a survey site that was 1001 questions — I WON’T be doing that one but it DOES exist if anyone wants to try it. This on the other hand is a more manageable survey for me! Go to end and I’ll try and cut that other one in.
1. name: dori
2. single or taken: taken
3. sex: Female
4. birthday: 2/22/65
6. siblings: 0
7. hair color: brown
8. eye color: brown
9. shoe size: 8 1/2
10. height: 5-3
r e l a t i o n s h i p s
1. who are your best friends?: Many, but probably Lynn, Nancy
2. do you have a boyfriend/girlfriend?: Hubby
another one that is probably too young for me, but oh well!
Put an X next to the things that are true.
(_) I NEVER HAVE BEEN DRUNK
(x) I NEVER HAVE SMOKED POT
(_) I NEVER HAVE KISSED A MEMBER OF THE OPPOSITE SEX
(x) I NEVER HAVE KISSED A MEMBER OF THE SAME SEX
(x) I NEVER CRASHED A FRIEND’S CAR
(x) I NEVER HAVE BEEN TO JAPAN
(_) I NEVER RODE IN A TAXI
(_) I NEVER HAVE BEEN IN LOVE
(_) I NEVER HAD SEX
(x) I NEVER HAVE HAD SEX IN PUBLIC
(_) I NEVER HAVE BEEN DUMPED
(x) I NEVER SHOPLIFTED
(_) I NEVER HAVE BEEN FIRED
(x) I NEVER HAVE BEEN IN A FIST FIGHT
(x) I NEVER HAD SEX WITH A MEMBER OF THE SAME SEX
(x) I NEVER BEEN ARRESTED
(_) I NEVER MADE OUT WITH A STRANGER
Continue reading “Another survey”
Chris had to have surgery on his ear on Wednesday because he hit it so hard he got cauliflower ear. We have been watching over him at home – he seems better today so he’s relaxing a bit in the shower and I thought I’d take a minute here. Those of you who are inclined, I would appreciate prayers/thoughts for him as his ear heals. He is on some new meds that we believe are helping him now sleep at night – it’s been 5 days now that he has slept well. I hope it also calms him too so that he doesn’t bang his ears or head.
When Chris was in the hospital last summer I found this Bible verse. I have claimed it again as my promise that Chris will be guarded over by the angels. Psalm 34
17 The righteous cry, and the LORD heareth, and delivereth them out of all their troubles.
18 The LORD is nigh unto them that are of a broken heart; and saveth such as be of a contrite spirit.
19 Many are the afflictions of the righteous: but the LORD delivereth him out of them all.
20 He keepeth all his bones: not one of them is broken.
I pray that Chris will be delivered from this ear problem with no damage or further danger. I know the Lord is more than capable.
I know I need to go back to attending church. I want to get back into music ministry but the Lord will have to guide me back into that – I don’t see it being possible right now.
I was in the choir at churches off and on from 1987-1994, then 1999-2000. I greatly enjoyed it, and also did special music solos with guitar, and also sang for the kids in kids church that were preschool age. That was fun (that was in 2001). When Chris got too big to handle and had started all kinds of health problems, I had to quit everything. I miss it all and pray I will be privileged to be able to do it again.
BTW, I was definitely diagnosed with ADHD yesterday at the dr. All the IQ testing is done. I’m fairly high on the scoring with the attention part being lowest, no surprise there.
so I’m done a fun [not little!] survey I found!
I did dailies throughout my whole house and am planning to sort papers/fill out forms needed/file rest of the day. But here I go, fun fun! I’ll do an update post soon.