sosudden

She saw cardiologist to rule out any heart abnormalities. We increased her salt and fluid intake as the theory is this i creases the plasma volume which helps increase blood pressure and lower heart rate. For our dd10, this was not enough so we started her on Florinef. She is one month in to this medication and doing better. She continues to have the postural tachycardia BUT it rarely geta to the 180'smedical as it used to. If you know how to check a pulse you could check his for 1 full minute laying then sitting then standing...pm if you want to talk. Hang in there!

What a great story and thanks for sharing it!!! The moments of "normalcy" are priceless!!! Happy healing!

Very similar story with our dd! In the beginning she peed so much we checked her for uti and diabetes as well. She was 8.

Could he be feeling anything that is making him "afraid" to walk? Anything besides the pain? I know my DD10 (who also has POTS/dysautonmia)can have a racing heart, burning leg pain, and feel "off-balance" and "heavy" which makes her not want to move about much sometimes... I also would look much more in to it before you think conversion disorder. PANDAS/PANS is so crazy weird and presents differently.

Mycoplasma? Viruses? Lyme? Has he been tested for these? IVIG brought our dd back from the edge of nonfunctioning. Almost 8 months post IVIG with Dr K. She has had a few flares. We have uncovered some stubborn "infections". She has developed POTS and peripheral polyneuropathy. BUT she continues to improve from the PANS. I'm not sure how she would be now without having the IVIG.

Children's Mercy in KC, MO~~unimpressed there too. A bad experience there in July still keeps me up some nights!!! The Dr was just so rude and closed-minded!!! And lots of eye-rolling at my dd!!! Oooohh I was livid!!! The doctors that HELP us are truly gems!!!!

Daughter had migraines almost constantly before IVIg. Hypersenses made them unbarable at school -in lights, noise, moving -well just overloaded her. Honestly no migraines since about 10 days out from IVIg.

Ahhh!!! We live in Kansas City!!! Please PM me and we can talk and compare notes!!!!

We too have been there and really still are there I truly understand. Su ks for sure!! We are still learning our new normal. My pandas daughter just turned 10 and is the oldest of 4. It SO effects all of us! I suggest you definitely take time to go out and about with the other kids without your pandas child. It is so tough on them to watch their sibling so scared and out of control The best day I had in a long time was 2 weeks ago when I took my almost 5 yearold daughter out just the 2 of us!!!! It was so fun and "normal"! No hurrying. No panic attacks. No anxiety! No hiding or crying or endless questioning. No encouraging or changing of plans or having to ignore other family members.... oh this is such an awful disorder But, my dd4 told me it was the most fun she ever had!!!! So keep in pushing and finding treatment for your child but make sure to take time for you and your other 3! Hugs to you! L

My 10 year old daughter has postural tachycardia. Diagnosed this summer. I think she may have been experiencing longer though... heart rate up to 170's, 2 ED trips and a cardiology work up. She is now on a medication for it and we are seeing slow improvement. I am at work today so will try to send some links later or you can PM me. I would suggest taking her pulse laying then sitting then standing just to see if that has anything to do with it. Laura