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PT at the Mayo

Aug 05, 2011 - 5 comments

We are scheduled for physical therapy at the Mayo Clinic!  It will be after our week of doctors appts and more tests in October.  I spoke with a PT there for 45 minutes, and he said Cody sounds like a very good candidate.  He told me stories of some of the kids there, where the kid was when they started the program and where there kid ended up and what they were able to do.

Cody does not want to go, he wants us to give him more time to get better.  He is just tired of traveling and going to doctors, etc.....I also think he doesn't want to leave his comfort zone at home.  I think I baby him too much because of the illness.  They also have parent classes that have to be attended which will probably help me break this cycle of not expecting anything from Cody(except schoolwork).

Also, his DHE shots are not really helping, but we have to give them for another week before the doctor is willing to abort.  If we abort, the doctor wants to try volume expansion.  This actually sounds more promising to me.

How is everyone else doing?  Another school year is about to begin and we are still finishing up last year.  Year round school is no fun.

Christy

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Avatar universal
by enzymelover, Aug 05, 2011
Oh, I do hope the PT does great things for Cody. I think I may have found a good PT therapist for Casey. But I do want to wait until his IGF-I level is up, AND he gets on Midodrine or Florinef, so that he has a fighting chance of success with PT.

I can understand Cody not wanting to leave his comfort zone. It can be difficult to balance what our kids need medically, physiologically and psychologically. And difficult to know when they need a push and when to back off. The psych docs who spoke with me when Casey was in the hospital said they thought he might have "what we call, Learned Helplessness" ".  I said, "Of course he has learned helplessness, he can't even crawl to the fridge or the bathroom without his heart pounding, chest pain and severe lightheadedness. He has a debilitating disorder. Only Casey knows exactly what he is feeling when he pushes himself beyond his comfort zone, and if his body is screaming at him to stop, I respect that, and do what I can to take care of his needs.

Casey was a very independent toddler and young child. I believe when his symptoms are reduced he will again become that independent person he used to be. However, because of "learned helplessness", I think I will have to push him to start doing more when he can, such as using his wheelchair to get to the kitchen and fix his own lunch, instead of me bringing it to him.

Florinef is a blood volume expander. What else would Cody's doc prescribe, do you know? I don't know to what extent volume expansion will help Casey, but I know it does help him to a certain degree, at least in the form of IV saline.

I just found out yesterday, the lab where Casey did his blood draw two weeks ago may have lost his labwork. His doctor hasn't received it yet, and the receptionists at the lab wouldn't give me any info. They're "looking into it". We've waited too long already for an IGF-I level, I hope Casey doesn't have to repeat this blood draw. Not to mention, the doc won't make a decision about florinef until he sees the results of this test (the renin and aldosterone levels). Grrrrrrrrr........

Casey's still not doing schoolwork, however, he's getting a new computer, custom built by the friend of a friend, and the deal was that he start doing schoolwork when he gets the new computer. If he tries to back out, there will be consequences!

Stay Cool!
Judy

1543183 tn?1293551943
by kcmomm, Aug 06, 2011
Christy,
That is great news!  I know you have probably told me before, but what arrangements did you make with the school to allow him to work all summer on his classes?  The state has a clause that allows for that if there is a threat of regression.  Then they will pay the district when of course would make the district a lot happier.  Was the that the basis or is your district just great :)
I could use that parenting class.  I know I drive my kid crazy always worrying about him, or being teary (I am teary anyway).  I know that doesn't help him.  Depression is his big enemy.

Hi Judy,  I don't know you but have read your posts.  My son is 16 next month and has POTS/NMH.  He was quite severe last winter, couldn't stand up or get off the couch.  We literally had to pick him up and started dragging him to the front door and back every couple hours to begin.  Sometimes we didn't make it.  There was no dramatic aha moment.  The Dr. at the facility who diagnosed wouldn't treat so he had no meds then.  It was uphill for sure.  Baby steps.  But he did get a bit more mobile.  He couldn't stay up but he could get to the bathroom himself sometimes.  We flew to Reston Va and he was able to navigate the airport without a wheelchair but it exhausted him, adrenaline I think.  Anyway, Dr. Abdallah prescribed florinef and midodrine and I do believe that has helped my son be able to be a lot more functional.  I know even as his body was improving his cognitive issues were as well.  He basically did almost 2/3 of a semester of biology in 3 wks and got a B (because the school wouldn't extend the year there was a lot of pressure).  He was homebound since Oct.  This summer he has been reading the Hunger Games series and loving it.  He has never been able to read nor wanted to for fun!  He told me he had to reread the pages a lot and so was very slow.  Of course this also affected his schoolwork.  He was labeled as ADD (by us too).  I believe the lack of blood flow to the brain caused the symptoms and the medicines improved that so much he can literally think better.  

On the florinef and midodrine, my son had significant side effects, esp. itchiness all over and scalp was awful.  I had read that if you stick it out they get better after a few weeks so I was mean and made him keep taking it.  So glad we did, the side effects got less and afterawhile totally gone.  Someone once said to me, if your child had cancer, chemo or whatever the treatment they say would not be an option.  Your child will feel really bad on those meds before they get better.  So as with our kids, they may feel much worse at first but they don't have an option if they are to get better.
I sympathize with you and Casey.  It is a viscious cycle for sure.  

My son has been having more significant symptoms the last couple days and I am worried we are heading into a slide, though the summer has been pretty good.



Avatar universal
by CHRISTYDRAKE, Aug 06, 2011
Cody also had the side effects from the midodrine, especially itchy crawly scalp.  We reduced him from 10mg to 5 mg and then he got used to it.  Then we increased it back to 10mg.  The side effects did go away or greatly reduced.

We got EYS  (extended year services) with his IEP.  They explained how last year he didn't finish the Algebra (2nd semester) and had to restart it in the fall.  The same thing was going to happen this year with 4 classes.  It would have cost the school more money to have him keep retaking classes just because he didn't finish them.  Plus, I will say at the IEP there were a lot of people there (counselor, SSD Case Manager, Homebound teacher, SSD Homebound Manager, plus 2 others that I don't remember their titles) who were all trying to figure out loopholes and get Cody the summer help.  They accomplished it!
The loophole was, here in St Louis Co, each school district had summer school set for different dates.  SSD didn't care what our districts dates were, we were able to start with the first district and end with a different district.  That gave us more time.

I will say this, his homebound teacher right now is working as a volunteer.  She doesn't come 5 hours a week, but comes to help him with whatever questions he can't figure out,usually twice a week.  SSD allowed us to continue using the classes to finish them.  His homebound teacher said she wouldn't abandon him.  We have had her for 2 years and I think we will have her again this year.  They have built up a repore and she is very familiar with his illness and his limitations, plus she is so flexible.

Christy

1543183 tn?1293551943
by kcmomm, Aug 08, 2011
Thats it!  I am moving next door to you and getting the same services and teacher!   J had a major dive last night, huge jerking episode and slid down the stairs followed by exhaustion.  Thank goodness he has been ok today but doesn't bode well.

Avatar universal
by CHRISTYDRAKE, Aug 08, 2011
I'm glad he is doing good today.  I know how frustrated you must be, to see him doing well and then when school is getting ready to start, problems begin.  I'll keep my fingers crossed that he's not going to continue to regress.  I so hate POTS.  

I have this little fantasy in my head that when we go to the Mayo Clinic in October that they tell me "Oh no, he doesn't have POTS, he has ___________(fill in the blank with something curable)."



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