Living & Loving, Autism & Deafness
Our Journey with our loved ones and our lives
I MUST UPDATE SOON. Prayers for Chris, however, GREATLY appreciated. Things have deteriorated so much we’re considering other placement for him….. sad. SURVEY HERE, mindless but distracting and kinda fun 🙂
another 2020 note to check more about any infections, fevers, possibly linked to Pans/Pandas.
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.
Blessings, dori
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.
Housework calling….
dori
Seems like it. Actually Chris has quieted down so I hope to go to sleep SOON. I was up late last night with him and then overslept this morning and he missed his bus. Ended up taking him to the dr. – another sinus infection. It goes together – the sleeplessness and the sinus infections. We are so weary – we hope this new thing works – giving him antibiotics for 4 weeks instead of 2.
For some reason at night I’ve been reading about anorexia. I think I stumbled across something surfing Live Journal sites (think that’s where it was?) and then just started reading about it. It’s amazing what the mind can do in a person. I never had anorexia or bulimia but did get to the bingeing state. I always would binge before I started diets, ever since I was like 10 years old. I would pick a date to start dieting and right before it I’d eat huge quantities to “get it out of my system.” I have done this to this day.
In ’99 I joined a diet system called “Weigh Down” and I followed through my pregnancy and nursing as well. It really changed my outlook a lot. It is based on just eating when hungry and stopping before full. However, after that I kind of drifted away from it (as the program developed some spiritual inconsistencies and a lot of churches dropped the plan, and I got disappointed in the whole thing and just didn’t do it anymore). I really got slowly but steadily back into the diet and then binge thing. So Jan. 20 I started following the basic hunger/fullness principles again and am down 4 pounds. It is so liberating – I can eat what I want, as long as I’m hungry, and I stop when I feel satisfied (not full!) and wait for hunger to eat again. And it’s funny, after reading these anorexia/bulimia sites, I can see where a plan like this would be a help to those people too after they have maybe talked to someone about their low self esteem issues.
I think I’m actually going to attempt to go to bed… hopefully!
dori
Edit, Feb. 2020. As I am rereading this blog and have my Pans/Pandas suspicions for Ryan, I note this about Chris having this sinus infection, and possibly having Pans (he had a psychiatric breakdown shortly after this). The clues you see years later….
Someday I just want to go slow and ramble for hours on here….
Baby boo is up and keeping me busy, so this will be short. He is doing good — he is talking more since I’ve been home!! He also has not thrown up since I’ve been home (at day care he was throwing up every few days?!!!). We were ready to take him to an allergist to see if he had food allergies, it was happening so much. Now he’s home, boom, disappeared!!!
I have accomplished many household tasks — organized many cabinets and cupboards, rearranged living room, etc. Busy busy! I have SO much more to do. Mountains of clothes to put away in our bedroom – that will be today and tomorrow’s task. Today is a birthday party for DH, the big 4-0!! So we will be at his mom’s – she has nice parties for all of us in her home so that we don’t have to worry about them here (our house is tiny, like a closet, especially with us 5 in here!!)
Well, so I’m the busy SAHM and still hope to go back to college, but don’t know when that will be. I want to go for music therapy. I am hoping to do the prerequisites close by, and then the remainder I shall have to drive about 1 hour away to fulfil. THis will be years away, though, I’m sure!
I am trying to lose weight again — I have been overweight since a child but on and off diets. After RJ was born I haven’t really sustained any effort to lose weight – just now though this Tuesday I have gone back on a plan that I was on in the years before he was born. I’d lost 25 or so pounds then so I hope to have success again! I need to lose about 60 pounds. So far I’ve lost just 3/4 of a pound, but that was in 4 days 🙂
All for now, dori
RJ had speech eval today and they want us to closely watch him and work with him a LOT as he may be a little behind. I was kind of thinking of doing some work at
home but now am reconsidering that. I think my hands might be full…. the kids are my priority!
This is a fearful area for us as Chris lost all his speech at 2 1/2. Ryan will be 2 on 2/22. But they said his play activity was great and that he didn’t seem in the least autistic. I’m just not sure I’m now going to send back him to day care at all right now – may just work with him at home intensely for awhile. The day care was able to take him on an as-needed basis so I could type at home. Well, at least I know that option is available if I need it! Kiddoes – always something.
I have more to update but so busy….
One thing I did want to mention though is my grandma passed away on 12/30. We will sure miss her! She was 92 1/2.
owen is having a bit of a tough time again after doing very well for a week or so. He went to day care with his sister first time last week on Thurs and Fri. This is the first EVER he’s been in day care. he did well! This week he goes back to school (tomorrow) but last night he started staying up late again — 4:30 a.m. this morning (dh stayed up with him – I actually got to sleep 9 hours last night PRAISE God! it is 12:00 now and he’s still up. dh has to get up at 4:30 a.m. and I will be up at 6:30 with my little baby, I’m sure.
I had been thinking all weekend trying to make a decision about my work. I work 22 hours a week now but have the opportunity to work up to 30 if I wish. That would mean having the older kids go to the day care every day after school. After thinking about it all weekend we decided to wait until summer and see how they do, and maybe work a little later then if they seem to be able to handle it.
We just have been so broke for so long that it feels good to be able to pay the bills and having more sounds so good. We also need a new house — 3 kids in this tiny house is tough.
dori, in the close family
