!I'm not sure if you are on this site anymore but I have almost the same exact symptoms as your son. For three years I've had nausea every night. It will keep me up a lot and I had to be homeschooled because of it. Just wondering if I could ask you some questions. I'm 13 and my name is Chelsea. Thanks! : )
You're in my thoughts all the time, but especially today.
Happy New Year!
Happy New Year Christy, to you and your family! I really hope it will be a great year for Cody!
How's it going? We are doing ok. Whitney is perking up a bit, still a lot of pain but trying hard to get back to school. We have an appointment at Cleveland Clinic pain mgmt in January. Don't know if we are going to do it for sure but we'll see. Isn't that where Cody went for his POTS testing? How far a drive is it?
Hi! Are you guys at the Mayo yet? Been thinking of you all and wondering how Cody is doing?
Just a quick note to say hi! Hope Cody is having a better day today. I was looking on Mayo's autonomic clinic's website. Looks like some good doctors. Hope it works out well for him. You'll have to let me know how it goes...it'll be here sooner than you know. Will you be staying at Ronald McDonald House there?
Thank you for your help. I talked to Dan Stell from NDRF today and he was extremely helpful.
What sort of supplements does your son take? We have a doctor's appointment on Wednesday, so I thought I would ask him about this.
Have a good evening.
Thank you for your message.
When was your son diagnosed?
How are you all doing? We are home from Ranken Jordan/RMH...Sorry we never got back together with you! Whitney really wants to meet Cody sometime. I think she just wants to meet someone who has autonomic dysfunction too.
Do you have all the services back now?
Hi Chisty, I was watching Discovery Health yesterday and they had a story about a girl with Erlos-Danlos (hypermobility) and a Chiari malformation. It sounds a lot like your daughter and maybe even Cody (and Whitney). I am going to talk to the neurologist about it. You might want to look it up too...
As Brian and I watched it, we were amazed at the similarities between that little girl and Whitney. It wouldn't explain everything she has but it would explain alot.
Just a quick note to say hi! that is the same that John has been diagmosed with/ autonomic neuropathy. Hoping to get more detail in case U...and maybe what was the cause? That is the million dollar question for John
Hi, I was wondering what you thought of Dr. Fouad. I found her very difficult to follow, and she gave John pills, and never set up a follow up visit...to see how he was doing...But I recently came upon this from University Hospital of Cleveland....this is the link...if it does not come thru look up Univ hosp of cleveland, and then the neurologic or autonomic testing. We are thinking of going there, just do not know if our Insurance lets us use that hospital. How is the schooling going??
She's not doing that great! Her legs went limp Friday, her arms this morning. After we were done with the registration fair at school she was hurting really bad and is CRANKY...she was in a great mood before, but all the walking and this danged heat just messed her up. I hate it.
Sorry Cody's still way off. Do you think he'll be able to try school? Does he want to?
Talked to the rheumatologist a little while ago, she doesn't think its lyme but says we should see an infectious disease doctor. So ok we will. Wonder how long a wait that will be.
How's Cody doing? Did you have a good weekend with the "cooler" weather?
Okay, now I'M worried about Cody! I sure hope he's feeling better than he was 5 days ago. Casey has been falling asleep easier the last few nights. Only thing I'm doing different is using the epsom salts again. I hope it keeps getting better.
Hi Christy! Hope the weekend is going well for you and Cody. We are taking it easy today because we'll be in St. Louis the next few days with family visiting and then Tuesday for the biopsy.
Happy Mother's Day! Hope you are having a good day today!
Small world! My son is in Cleveland, finishing his Master's in Electrical Engineering at Case Western. I think Case Western's medical school is connected with The University Hospitals of Cleveland, as that's where my son would go if he got sick while at school. That should be an excellent place to find out the answers you need for your son. I'll keep your family in my thoughts. Good luck!
Hey! Your note just showed up today, dated Nov 13! Yes, gastro can be worse some days than others; depends on what you ate the day before. I don't digest fiber AT ALL. If you had to keep going past 3 hours, it wasn't normal, but you should be hearing that from the doctor about now.
Well, if it helps, a lot of places only run the test 90 min, because "normal" people will process half their food by then. If the test ran more than that, there's probably something going on. On the other hand, they may have wanted to watch all the food go through. Did they tell you how long to expect or how much of the food they would watch?
Just a quick note to say hi! Every once in while my sons pupils are dilated. Doesnt matter if its in a well lit room or not. I really cant tie it into anything. He is not responding to any of the meds he is on. He basically feels just as sick as he did almost 3 years ago. He doesnt suffer from migraines though. We are thinking of trying erthyropoeitin which is an injectible medicine. I am doing some research on it first. Thanks
How was the testing? I know you'll post, but had to send a note :)
Posted her meds let me know any questions.
I haven't heard from you in a couple of days, so I wanted to check back to see how your son was feeling. I hope he is doing well, and staying cool in these warm summer temperatures.
Welcome to the Dysautonomia community! :)