Oh my goodness, since I was here last, so much has happened. He is 6 years old and we have seen so much in him. He has been admitted to the hospital 13 times in 6 months with "dehydration" although he receives incrediable amount of fludis a day orally. Has been unable to cool in the heat of florida and we are seeing terrible problems with that. He doesn't sweat, and now this past few weeks his hands and feet are turning red/purple.

My heart is broken into a million peices because it seems that everything is getting so much worse. We are placing a loop monitor under the skin to see if his heart is stopping. We know he has bradycardia when he sleeps. If he has more abnromalities then we will do a pace maker. He is also getting a port placed so we can do IV fluids, so he can have a better quality of life.

He is on
prograf
prednisone
flouirnef
norvasc
atarax
singuliar
zantac
zyrtec
cipro
xopenex
flovent

and we will be starting clonidine I guess for his adrenal gland

We saw dr. Grubb in Toledo Oh and he was wonderful. we just need to get this under control. They don't have a real type of dysautonomia diagnosed yet. Dr. Grubb said he has his own kind. We can tell it has been progressing, but we don't know if it is techinically progressive and will get worse and worse. I am here back at the site like an open book, please if you have any idea on how to help him, I am here to be open to suggestions.

Thank you so much.

Thank you!!

Lisa

Lisa,
After reading your post, I'm not sure I will ever complain about my symptoms again. How completely unfair that a six year old child has to go through this. I can't offer any new medical help but I can offer you my thoughts and prayers. Please keep us posted on his progress.

Lisa,
I just want to say that you are in my thoughts. This stuff is no fun for anybody, but it breaks my heart that a 6 year old child has to deal with it. I don't know what I would do if it were my daughter. I'm glad you are seeing the right people. Stay strong.

thank you so much


If you are interested in his caringbridge page feel free to email me at rolexh@aol.com

As of now I am just reading and not even believing how after finding this site how much of this fits! he doesn't sweat, he turns from red to pale to red to pale. His body tempature rises just being outside.his bp is everywhere and now like I said his hands have turned red and pruple ish. like the finger print area looks like it is was burned from picking up something hot. Just swollen with blood.

He wakes up on the mornings he does the "episodes" and just collapses and then has terrible vommitting, and diahrea. like it just leaves him so fast. His labs look terrible and even though he has lived off gatoraide he is always
dehydrated"

His nephrologist said, it is like he has a hole in his tank. the more we give him orrally the more he pees out. I felt like we were the only ones in the whole world living like this. I went for months feeling like I was totally unheard and goin crazy, then we had to make the difficult choice of switching transplant teams.( he is a liver transplant recipient too)

once we switched centers it was amazing.. and they all agreed this was some tpye of autonomic dysfunction.

He did have a sleep study done 2 years ago. His o2 is normal but his heart rate is not. The weird thing though that may make the 02 normal is that his hemoglobin, and hematocrit is very high all the time. does anyone else have that. It seems to be the one thing they don't understand.

anyway, Just rambling at this point. Thank you so much

Lisa

Lisa, I can relate to your feelings and what you're going thru in that I've watched my daughter struggle with POTS for almost 16 months now. She's been dizzy every day since March of 07' with headaches, inability to sit up and stand, problems sweating, and problems walking. However, she is not nearly as bad as your son is! I'm so sorry for what he's going thru. My daughter was 10 when she got sick and that was bad enough. Age 6 is a difficult age for a child to try and understand what is going on.

I wish I could help but I can pray. I know right now, it seems like your world is falling apart but know that there are people out there who will be praying like myself. I care very much about you and your son and I hope that things will get better.

On a positive note, Dr. Grubb is a great person for your son to be seeing. We started out with doctors who were not familiar with POTS and I felt much better when my daughter went to see Dr. Grubb.

Take care of yourself and I hope you get some answers and some help for your son.