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Mar 04, 2011 - 3 comments

Well, we are starting the second week of the Migranal(DHE).  Not so much help.  He has not been able to have the teacher come all week, sick in bed.  He is also just flat out exhausted!  Plus, as I feared, the insomnia has returned.  When I left for work this morning, he was wide awake and had not slept a wink all night.  Which means, he will fall asleep some time today, then not be able to sleep tonight.

The new gastro called me back on Monday.  He is not sure what to do.  He does not see these issues in children, so he is going to consult with an adult GI motility specialist.  This was one of the reasons I didn't want to leave our Cleveland doctors, since we had the GI autonomic specialist.  He said usually when you have delayed gastric emptying, the duodenal test is also postive for nerve damage, while Cody's duodenal(sp?) was fine.  I wish he would just refer us to the motility specialist and she would accept him as a patient even though he is not an adult.

I'm also guessing the weather change is playing a role in this.  It has been very warm.  

How is everyone else doing? Nick, Casey, Whitney?

Christy

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by tdavidson, Mar 04, 2011
Oh man.  I am so sorry Cody is not doing well.  I was praying for lots of good days!  Ugh the GI doctors are just clueless here.  I have heard of so many kids with motility issues especially dys kids...but I guess that is the problem. These doctors have no idea what autonomic dysfunction means...it's not just POTS...ugh...what do they teach them in med school???  

Whitney is feeling the weather changes too. I guess. She was in such bad pain last night she barely slept. She kept calling me to her room, so I slept on the cot we have in there for such occassions (plus for sleep overs or for her spoiled D.O.G.)...that wasn't good enough most of the night. She needed me in the bed with her to fall asleep. I think she was having a hard time regulating her breathing or just getting her pain under control.  When she woke up this morning, she woke with a huge gasp...I was already up, showered and on the computer working and I heard it.  Freaky. She tried getting up and as has been the case the last two days, her legs "wouldn't work" and she ended up crawling.  She is back in bed now sleeping.  At least she will get to make up some sleep.  Her sleep study is next week.  

Hope everyone is doing ok and the kids are getting some good days too.
Theresa

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by enzymelover, Mar 05, 2011
Hi Christy. I don't have a lot of time this morning but I wanted to let you know I saw your post. I too am sorry Cody is still having so much trouble with his autonomic issues.

I read something yesterday about some computer software (I think it was) called ANSAR. ANSAR testing was used several years ago at Cleveland Clinic to test the functioning of the sympathetic and parasympathetic branches of the autonomic  nervous system. They hooked you up to a blood pressure cuff and heart monitor and plugged you into the computer. Supposedly this software was more accurate than a tilt table for pinpointing where a problem existed in the nervous system, even before symptoms showed.
Do you have any idea whether or not Cody was tested with this ANSAR program when he was there? I'm not sure if this would be any more helpful to Cody now that he has had so much testing, but I wonder if it would pick up something the docs have missed?
Casey has had so little testing for his autonomic problems, this ANSAR test would be at least 10 steps forward for him! Getting the autonomic nervous system balanced is the key to a cure,  whereas treating the symptoms is like bailing water from a leaking boat without doing anything about the hole! It can go on indefinitely.

Casey is not doing great either. He is so, so weak when he tries to move. He still sits curled up as tightly as he can, his knees almost to his ears. I am trying to decide what we should do next. I do not want to sit around waiting to see if the growth hormone is going to help with this. We are waiting for a call back from cardiology to make an appointment for an echo. He still hasn't ever had one.  I guess I will call them again on Monday. They just do things too slowly at that clinic.

Theresa, I still think about Whitney every day. I hope the sleep study can help find some clue that will benefit her. I have often spent the night sleeping on the bed with Casey. He worries about his breathing too, and wants me beside him to monitor this.

I gotta go. My best to all of you.
Judy

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by LA1989, Mar 10, 2011
Hi Chirsty (and all),
what a bummer that the kids are all having a bad time right now. I was just talking with someone at church last night (who has lyme disease) about the weather playing a part in what kind of day/week Nick has. Nick's week hasn't been too good either, after a couple of really good ones, but his physical therapist kind of shrugged off my suggestion about the weather.
After reading here, though, I think there's more to that story!

Nick developed some new issues this past weekend that I am praying do not become regulars. First, his jaw kept slipping in and out and popping every time he opened his mouth. I know this is not uncommon for people with a connective tissue disorder, but it's the first time we've had to deal with it. He walked around all weekend with his hands on the sides of his jaws to keep it in. Monday it didn't occur, though, and not very often yesterday or today.
He also has had terrible pain in the lower left side of his abdomen/groin area. To the point that it was hard for him to walk.

The PT did notice "something going on" in that region and spent quite a bit of time on it, as well as on his neck and jaw. I had written Dr. Rowe about the jaw Sunday night and he wrote me back first thing Monday morning (of course he did...) and said to definitely mention it to the PT and he wants him to see a certain dentist in the area who has treated patients of his with this problem. I'm going to wait and see if it develops anymore before we run off to the dentist, though.
He had some kind of terrible cold yesterday, with coughing, sneezing, sore throat, stomach pain, etc. but today, after a good dose of nyquil, he's better.

And on a good note, the CoQ10 seems to really be helping him sleep better and have more energy during the day. Although I probably just jinxed it by mentioning it....

did any of you get a chance to see the special cbs did on CFS? I meant to watch it and forgot--I think I'll look online for it.
hugs to you all-

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