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looneymom

Sick with Virus but still standing and walking

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It's been awhile since I posted on my son. He caught a nasty upper respiratory virus with the cough and sore throat. He tested negative for flu. He is still standing and walking a week later! He is doing floor exercises to maintain core muscles and has been using the floor peddler.He has not done any aerobic exercises in a week. His doctor said to try some this next week if possible and see if he can start with where he left off. If he can do this, it will be amazing. This is the first time he has been sick since he finished his plasma exchange treatment in July 2015. His doctor and I really did not know what to expect if he got sick but so far so good. His POTS symptoms have been very manageable. My son still takes 20 mg of midodrine 3 times a day and 6-7 grams of salt. His doctor is planning on lowering down his dosage of midodrine after he gets through the flu and strep season. His pain issues have not come back and he still takes the Low Dose Naltrexone and Extended Release Namenda.  Before he had treatment with plasma exchange, his symptoms would get worse and would be worse off than he was before he got sick. Plasma exchange has made a huge difference for him. 

Is anyone's doctor treating their POTS with IVIG or Plasma Exchange yet? Just wondering because I have heard about a doctor in MD that using plasma exchange with kids and seeing good results. If you get the chance to try either one of these treatments for POTS, go for it if your insurance approves it.  There are possible side effects with either one but it's worth a trial effort. 

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Hi!  Thanks so much for the update,  Tyler is still an inspiration to us here at DINET, as are you.  Its great to hear that his migraines are gone.  We've had a couple members begin ivig. Some have done quite well!  

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