Deana

My son just saw Dr. Grubb on Thursday. Dr. G. said that Mestinon is one of the safest medications he prescribes and is the least likely to interfere with other medications. Both of my POTS kids are on Mestinon and both have asthma. Neither has had issues due to the Mestinon. My son is going to be starting on the time release version as soon as the pharmacy gets some (they'd never heard of it.) It doesn't cause the stomach upset problems that regular Mestinon can. Both of my children started on a quarter tablet and worked up slowly to the prescribed dose.

Tilting the bed retrains the body. The fludrocortisone helps the body to maintain enough blood volume. It helped my daughter and my son will be starting it now. It doesn't have the same types of side effects as something like Prednisone.

My 15 year old son was just recently diagnosed with POTS and NCS. He hasn't slept through the night for a couple of years except for the short time he was on Seroquel and that caused a whole host of other problems. We haven't found a prescription or OTC med that will help yet.

Hi Meg.

I have three children. The oldest was diagnosed with POTS at age 18, after finally going to the Mayo Clinic as a last resort. She'd been sick for several years and had seen many specialists who all said it was in her head. My middle child has symptoms which indicate possible lupus but her rheumotologist doesn't want to label her yet. And now, my youngest, at 15 has been diagnosed with POTS, too. He's followed a path very similar to his older sister's except that this time we knew what doctors to see so he hasn't had as long a journey to diagnosis as his sister. Is there anyone else who's dealing with several children with chronic health issues? Sometimes it's so overwhelming. The oldest two are in college but sometimes still need help and I'm glad I can be there for them but I'm sad that they are all being cheated out of "normal" teenage years and activities.

My daughter takes cerefolin (folic acid supplement available by prescription) and it really helps with the brain fog.

My 20 yr old daughter, diagnosed with POTS, and my 15 yr old son, diagnosed with NCS, both have occasional vision disturbances. Both have completely lost sight for half an hour or more and my daughter sometimes loses peripheral vision with floating dots. We've always just blamed it on the pupils not contracting properly.

I'm Meg's mom - she's not wearing regular compression hose but light support panty hose. She got a slightly bigger size and they are helping the pooling of blood in her feet and she hasn't passed out while wearing them. She's still waiting for Dr. Grubb's office to call back. Both she and I have called several times over the past two weeks. (They aren't as good at returning calls as they used to be.) Anyway, we've decided that she'll keep wearing them as they are helping but she'll ask Bev (Dr. Grubb's NP) if she should be wearing actual compression hose or just continue to wear the light support. Thank you all for your comments and concerns.

My daughter was diagnosed by Dr. Fischer at Mayo Clinic. At the time we were told probable POTS that could be controlled without meds. That didn't last for long - now she sees Dr. Grubb. We were happy with both doctors. Both are very thorough and explain everything to patient and parents.