Tag: deafness

autism, autism Ryan, deafness

Ryan autism?

criscollrj

 

2020 – so with Chris first mention of autism from a doctor was around summer/fall of 1994 until January of 1995.  He was 4.  Ryan’s first mention is at barely 3, in 2005.  I suppose with it being 10 years later they could spot it faster.  I also, remember, however, when Ryan was maybe a year younger that his pediatrician said there was NO WAY he had autism.  It’s strange how things work out.  With Chris, the first mention of autism was from my cousin, when she came to visit us from New York.  With Ryan, it was a note on a drs. report.  Never did we actually see ourselves and say, this person may have autism.  I guess parents are the last to know or see it….

On Ryan he has what’s called “a flat moderate sensorineural hearing loss bilaterally.” I got his report today and shared with some of the professionals that need it. I need to fax to more people tomorrow. In addition to following upon the hearing loss the final instruction was “continue with psychological/neurologic workup and monitoring for early identification of possible autism.” That kind of gave me the chills. I don’t know if they think he has autism or if it’s just family history — ugh.

dori

autism, deafness

Ryan

criscollrj

posted from my other group…..

We got important news today. Ryan had an ABR plus another sensitive hearing test under sedation. Surprisingly, to all of us, he does have hearing loss in both ears. She said his hearing loss I believe is about 50 which seems to be described on the internet as Moderate — 40-68 dBHL (decibels hearing level). I am curious what that means he hears – Colleen had the list of what sounds are at what decibels in her science notes a few months ago coincidentally but they’re not in our house now, but at her school in her desk….

We’ll get the report next week and need to follow up immediately with ENT on further guidance. She believed hearing aides will be necessary, along with further therapy aside from the speech therapy he gets – another kind of therapy will be necessary that relates to hearing loss itself. Anyone else going through this? She also said the ENT may be able to help us see what caused it. I was concerned it was his ear tubes – she said no. Then we saw the chiropractor today and he said, yes, it could be. Then I looked online and I see that “rarely” the tubes can cause further hearing loss and possibly perforation, and further problems when the tubes come out (they are still in). The chiropractor thought perhaps we should get them out now to avoid problems – I’m not sure. I need to see what the ENT says.

l’ll let you know how things progress!

Additionally, don’t know if I told you, we got a grant for Christopher to get further therapies for his autism. I need to call and schedule that – we’re so grateful, just have to figure out when to fit it in around what will be Ryan’s new therapies, and Colleen’s and Chris’s present activities. I had already cut out the Y entirely but had hoped to phase it back in next session, since it’s so good for the kids, and paid for by our community program for disabled kids (kind of wasteful not to use it!) But I needed a break for one session. Hope I can do all this — thank goodness I still have my aide 14 hours a week!

 

autism, college, deafness, medications, organizing, Pans/Pandas, relocation, relocation North Carolina, residency, sleep, weight, work

a little update finally —

criscollrj

speak and spell
You’re a Speak & Spell!! You nerd, you. Just
because you were disguised as a toy doesn’t
mean you weren’t educational, you sneaky
bastard.

What childhood toy from the 80s are you?
brought to you by Quizilla

it is a lazy Sunday and I have SO much cleaning to do.

Last I wrote Chris was having a VERY VERY VERY bad time. We had an awful 4 months – February – sinus infections, ear infections with ear injury from hitting; March, 2 ear surgeries, missed most of the whole month off of school, plus drug reaction to Seroquel/Risperdol and withdrawal; April, entire month, I believe, from school, just about (he may have gone a week or so), had 1-2 more sinus infections; May, Tonsillectomy/Adenoidectomy, and finally had to start more meds as he was still being aggressive, self-injurious, and very very upset and not sleeping at all hardly (like 3-4 hours every few days is all); and June started horribly as well but FINALLY last 3-4 days his new meds (Tenex) is kicking in and he’s sleeping a little more and is seeming happier. FINALLY.

(2020 pans/pandas)

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health, medications, Pans/Pandas, sleep, Uncategorized

update

criscollrj

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.

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autism, health, organizing, Pans/Pandas, sleep

another quick update

criscollrj

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.)

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