Tuesday, April 22, 2014

It's Been a Rough Week So Far...A Tues Update From AD

Tues 7:24pm -- It's been a rough start to the week for the king and therefore for his subjects. 


Yesterday was his first day back to school after spring break and he did a lot of hitting of others (adults, not kids). 


Today he hit the trifecta. The note in his communication notebook said he hit even more today, plus he had two mini seizures, and to top it off he also had a pee-pee accident. 


Needless to say wifey excused herself shortly after I got home from work...and went upstairs to watch "Parks & Recreation" Season 3 in bed on Netflix so she doesn't hear all the breath holding & general craziness going on down here. 


Melatonin has already been administered and I'm just waiting for it to kick in. 


Looking back Kyle was going thru a stretch almost exactly like this a month or so back...before he got sick. 


And getting sick (flu/infection?) mellowed him out big time. And I think having antibiotics in his system for 10 days mellowed him out AND helped him have less seizures. 


Yes I googled it. And of course it's possible...in some people. (And in others it could have the opposite effect and bring on more seizures)


Anyway, thinking back, for almost 5 weeks we had delightful, happy, related, calm Kyle. 


But now he is totally "healthy" and unfortunately totally back to his pre-sickness norm from late Feb / early March ...of aggression, crazy breath holding, and too many little seizures. 


I said to wifey that there's noting better than Kyle with a

mild, low grade fever.  


:-)


But we can't pull that off...so if this lasts much longer we'll be back visiting all his docs seeing what's the next course of action. 


Go up on his VNS device?


Go down or up on one of his seizure meds?


Or try something else?


Anyways that's my Tuesday night update. 


Hopefully this is just a blip on the radar and only lasts a couple of days and I'll have a more positive / happier Thursday update for y'all...but I'm not betting on it...I'm  a realist and I think the other shoe has officially dropped...


It's now 7:42pm and Kyle has the blanket over his head while he watches his bedtime videos. 


The melatonin gods seem to be working their magic tonight. 


Goodnight all!  

15 comments:

  1. Hang in there, AD. Saying a prayer for your family right now.
    Oh, and my son loves his blanket on his head, too. :)

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  2. I wish you luck. The medication rollercoaster has not been kind to us either, and no seizures here. I feel like the song about Alice. Some pills make her big, some pills make her small, and the ones the doctor gives don't do anything at all. The worst was the one that was supposed to help him talk, but instead made him attack everyone in the house for 10 days. Fun times.

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    Replies
    1. do you remember which med that was supposed to help him talk? My autie was given resperidol to help with his aggression and it made him gain serious weight that gave him high blood pressure which messed with his behaviors and the blood pressure was high enough he had to be pulled off quickly as opposed to tapering down slowly. The bonus?? My completely non-verbal, screaming, violent 4ish year old began to talk!

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  3. This disorder is so exhausting for the caregivers...I have had 22 years of dealing with all sorts of behaviors but it seems that as time has gone on some of them have resolved or changed...as my son gets older it has gotten easier. I used to give him liquid Benadryl at night (12.5 mg) and that seemed to help him sleep. Now he doesn't need it although he still stays up some nights but it is manageable.He is on celexa for anxiety which has helped his palpable anxiety and tic like behaviors. He has sensory issues around urinating and feels like he has to urinate frequently. In the beginning he would go to the bathroom 100x plus a day to try to pee. The dr, tried him on everything until we tried prosed ds which is a nasty blue medication that stains everything blue and tastes like bleach. Since he cannot swallow pills (another sensory issue that remains) the pill had to be crushed and put in juice. it tasted horrible but the poor guy drank it and it helped numb the area. Currently this problem waxes and wanes but he is off the nasty blue medicine.

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  4. It has been a rough start for us too. Lots of yelling, colorful language, and noises in general. Fun stuff :-(

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  5. It always seems like when we absolutely can't take it any more, a Higher Power seems to look out for us and gives us a tiny break. by the sound of things, you and the wifes should be here at any time now.

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  6. My son always lost his autistic symptoms while on antibiotics. Found out he had Lyme disease.

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    Replies
    1. Autism Daddy says he tried Lyme treatment in an old post. His son may have clostridia overgrowth or brain inflammation, as these, I've read can cause autism symptoms.

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  7. HISTAMINES!! Try Claritin! Your welcome.

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  9. I empathize with you AD. Since school started we have had a barrage of behaviors, meltdowns and all around challenging behaviors from my 10 y/o autie and my 12 y/o aspie. Since the transition into middle school my aspie has become progressively more affected by everything, his anxiety has gone way up to point he's missed A LOT of school, and my mama's gut instinct tells me that my boy is going to start exhibiting aggressive behaviors that he never has before.

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    Replies
    1. Take the kids out of school and let the kids be kids!

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  10. Have you checked for a bacterial over growth in his gut/stomac? I dont know if that would contribute to seizers, but it does effect behavior and antibiotixs would help. Hadthat issue with mine.... just a thought.

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    Replies
    1. Sarah,Yeast or clostridia overgrowth can cause autism symptoms. Viruses and brain inflammation can too. I read this stuff.

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