Gabriel and I visited Chris shortly this evening from 6:30 to 7:30 PM after I got back from work. Chris was quietly laying in bed but became very vocal upon our arrival. He also got a bit agitated and was trying to lift his head up. Because of the way he was positioned, I could see he was having a very good tracking day as he would follow me around by lifting and turning his head off his pillow.
I have been talking on and off with OT’s this week about Chris’ arms and wrists. This evening the tone in both arms were VERY bad and Chris right wrists is deteriorating very quickly, so every second I spent with Chris consisted of making sure I did a lot of stretches. Chris wailed and screamed in pain at the slighest touch of his hands, fingers and wrists but unfortunately Chris need sto be stretched (my short visit’s stretching are not enough, the 6 hr evening and afternoon splintings haven’t been enough to prevent his current situation). I will have to follow up more next week from NY to make sure there is no further deterioration.
So most of my visit tonight consisted of torturing Chris by stretching his wrists and arms. Chris was extremely uncomfortable with pain, visibly hating the whole thing and sweating. Chris right arm moved by a good range every time he was in pain with my touching him. Anyway, this is just an observation: I have seen his right arm move subtly and today it was very evident that he moved that arm big time in response to pain.
I am so happy to have my very good friend Annemarie with us. I value and treasure all my friendships in a different level today because they made SUCH a difference in my life in this unthinkable and unbearable year. I love all my friends!!!
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Concerned about Chris' arms and wrists
Comments
Re: Concerned about Chris' arms and wrists
by
Sue
on Fri 30 Dec 2005 10:54 PM GMT | Profile | Permanent Link
Hi Koo! Is Chris getting any drugs for the spasticity? Earl could not tolerate Baclofen by mouth it made him more agitated. We had the pump installed at 18 months. He could not stand anyone touching his feet in the beginning. I remember the posturing of the arms, the baclofen helped.
We had 19 people for lunch on Christmas Day with Earl in the middle of everyone alternately yelling and singing carols ! It was a blast. The Little Drummer Boy's "Per Um Pa Pom Pom" interspersed with telling us what to kiss!! It's an interesting life:) We are having to fight to get physical therapy back as the insurance company says they don't pay for "maintenance". I'll win, I'm just tired of having to fight. Thinking of you all. Sue wife of Earl (ABI 1/2000) Re: Concerned about Chris' arms and wrists
by
Tschmans
on Sat 31 Dec 2005 04:48 AM GMT | Profile | Permanent Link
Koo,
Do they use actual casting techniques in the UK? We found that casting Tori's wrists and hands did wonders for her. It usually consists of an initial cast for 3 days, followed by another which stretches her hands further for 3 more days and finally the third with even more range applied and the subsequent 3 more days. We also increased Tori's Zanaflex dosage and have seen some real improvement in regards to her arm, shoulder and hand tone over the last few days. I'm not sure what medications Chris is on for tone and spasticity. -Tim Re: Concerned about Chris' arms and wrists
by
Koo Cho
on Sat 31 Dec 2005 09:33 AM GMT | Profile | Permanent Link
For spasticity Chris is having Tizanidine. Bacoflen was used a long time ago only for 4 days and then suspended - I think he may have had some side effect from that one. A lot has been tried regarding the spasticity and one of the main issues was that some of the drugs for spasticity would have very strong sedative effects and I thought that was counter-productive to the idea of having him more "awake" and aware. I would come to find him looking doped and sleeping a lot. As you know, it's a lot of trial and errors. BIG SIGH... I brought up the casting after I read Tori's was doing so well with the them but nothing gets done fast in England - specially over the Holiday season. Thanks for the inputs, I will be following this closely next week. Koo Re: Concerned about Chris' arms and wrists
by
Hana1uk
on Tue 03 Jan 2006 04:01 PM GMT | Profile | Permanent Link
Hi Koo
I read about your concerns regarding Chris' limbs. I put up a summary article on contractures in the January newsletter at http://www.anoxicinjury.com It might help you get your thoughts together when you speak to the OTs. There is also a great deal of information on drugs for spasticity and side effects in the forums. Kind regards Hana |
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