Christy_D

June, Florinef(fludrocoritsone) was the first med they prescribed for my son when he was in the 8th grade. It took his dizziness away almost immediately. He was on it for 2.5 years and his dizziness seems to be a thing of the past for the most part. Christy

My daughter has weight issues. When she was in the 8th grade (she is now 22) she weighed 114 at just shy of 5'4". By the end of her 9th grade year she weighed 93. The pediatrican ran tests for her thyroid, but it came back fine. She still has a very difficult time trying to get her weight into triple digits. She can get her weight up to 102 and a week later she is back down in the 90's. She eats plenty, a lot actually, but can't keep her weight up. Sometimes her cheeks sink in and she looks gaunt. She doesn't like it, and of course, she doesn't get much sympathy from people for having an underweight problem. But she is tired of looking like a 14 year old when she is 22.

I requested the treatment from our local neurologist who is now in charge of my son's POTS. He is always open to my suggestions and his office set it up for us. He told me that was a 'reasonable' request to try.

Yes, I loved Dr's Chelimsky (Thomas and Gisela). I felt like we got two for price of one. When they were in Cleveland our appointments were with both of them at the same time, so we saw the neurologist and gastroenterologist in one visit and both specialized in dysautonomia. They would bounce theories and ideas off each other and what line of treatment they would start. They gave us plan A and plan B,etc...They both also do research on it and are very thorough, lots of testing, etc.. Dr Gisela told me at one of her appointments that she was sick as a child and doctors couldn't figure it out, so she could really relate to our circumstance. I don't know if they have the same set up in Milwaukee that they did in Cleveland. Christy

Corina, The geneticist told us my daughter has EDS-Hypermobiltiy type, which includes soft skin and slow healing. I think the symptoms over lap, especially from the Classic type to hypermobility type. Whether POTS is a symptom of all types of EDS, I'm not sure. She explained that while the collagen was weak, the blood vessels are also floppy causing the POTS. There is a very good book on Amazon about EDS-Hypermobility type by Dr Tinkle that I read that is very good. It goes over all the issues and symptoms and covers POTS as an issue. It was an easy read, so if anyone thinks they may have EDS-hypermobility type I recommend reading it. The geneticist recommended it to me, and was surprised when I told her I already read it. Christy

http://santamariamedicine.com/2013/04/saline-therapy-hydration-found-to-be-a-powerful-tool-in-treatment-of-dysautonomia-pots/ I think this has been posted before, but here is the link to article about it.

June, I didn't know she was hyper mobile until she was doing physical therapy for joint pain. The therapist told her she was hyper mobile. She has problems with her ribs popping out and causing her pain as well. She is now also beginning to lose the arch in her feet. If it weren't for my son being so severe with his POTS, I don't think we would have put all the pieces of the puzzle together regarding all the family issues. Christy

My daughter was diagnosed with EDS a little over a week ago. Her internist sent her to a Geneticist who is knowledgeable about it. My daughter is the first in the family to be diagnosed because she is the first one to have 'issues' from it. The doctor said it doesn't skip generations, so I probably have it but have never had the issues she has with it. My mother, sister, nephew, and niece are all hyper mobile, but no pain or fainting, so we just always thought they could do weird tricks. My daughter is slow to heal, she had a skin biopsy that left a scar and the doctor said her skin is very soft. The skin biopsy revealed small fiber neuropathy and her neurologist also diagnosed her with orthostatic intolerance since she can faint when going from sitting to standing. She has other issues as well(migraines, unexplained weight loss, inability to put weight on, tingly/numbness/cold hands and feet). The geneticist said she probably has POTS but it didn't show up on the TTT the day she had it done. So, a geneticist is a good place to get an EDS diagnosis. Christy

June, I noticed that the program at the Mayo helped the kids that had pain associated with their POTS, but wasn't all that helpful with those suffering with GI issues and nausea. My son made some friends while he was there that he kept in contact with and those with nausea/GI issues still weren't able to attend school regularly or at all as was my son's case. I find some of their expectations completely unrealistic. Our local psychologist preferred the 'wade in slowly' approach. Christy

My son was diagnosed with POTS in 2009 and while some medications helped some of his symptoms, he was still bedridden with debilitating nausea. No one ever told us what the cause of his POTS was, they guessed it was a huge growth spurt he had in the 8th grade. He continued to get worse and worse instead of better, so I kept looking for answers. We took him to Dr Afrin in South Carolina and had him tested for MCAS in April 2012. He does have MCAS and we were finally able to find a medication to help him in June 2013. We were told POTS is a symptom of MCAS. I would keep looking for answers if you are not getting any better. We were trying to treat a symptom instead of the root problem, which was the MCAS. Also, my daughter was diagnosed with O.I. and small fiber neuropathy. Once again, they weren't looking for the reason for this. Her internist sent her to a geneticist and she was diagnosed with EDS. My son my have it as well, his elbows hyper extend. It is not as uncommon as you would think to have EDS/MCAS/POTS all at the same time. I think if we wouldn't have looked for more answers, my son would still be bedridden today. Incidentally, while at the Mayo Clinic with my son going through their pain management program, they told parents to stop going to specialists and 'fixating' on the illness. Thank goodness I didn't follow their instructions. Christy

Becia, My son did IV Saline therapy at home in 2012. His neurologist, who treats his POTS, ordered it for me after I requested it. A nurse came to our house on a Monday, started the IV and showed me how to disconnect and restart a new bag, etc.. He did one liter a day for 5 days. It was at a point where he was really ill and unable to get out of bed. At the end of the week, while not feeling great, he was feeling better than he had been. I requested it because at the end of that week we had to travel 13 hours from home to take him to Dr Afrin in South Carolina and was afraid the trip would be way too much for him. He was able to make the trip, I think, because of the IV Saline therapy. Christy

Yes, my son saw her and her husband when they were in Cleveland at Case Western University Hospital. Through this whole ordeal, she has been my favorite doctor. We stopped seeing them in 2010 when we were able to find a local doctor. Her and her husband did all of my son's testing, and while my son was a hard case because nothing touched his nausea, they didn't give up on us. She, Dr Gisela Chelimsky, was very caring and gave me a big hug after one of my son's tests because she could tell I was emotionally exhausted. At our first appointment she looked my son straight in the eyes and told him this isn't all in your head. That is exactly what he needed to hear after several doctors told us he was depressed or anxious,etc... She really gets it. If you do a search of 'Chelimsky' on here, you can probably find other posts about her. Christy

My son was prescribed it for migraines at one point. He was to lay down and put some in his nostril. It would take a headache away really quickly, but unfortunately it would return when it wore off. The idea was that it might break the pain cycle long enough for the headache to subside, it just didn't work for him.

My son's worst symptom was always nausea, debilitating, bedridden, nausea...for over 4 years. He tried every over the counter med, diet changes, and many, many prescriptions medications. Last June, he started Klonopin and that was the medication that we were waiting for. While he still has 24/7 nausea, it is barely there and he can now function again. Fludrocortisone took his dizziness away as well. Trial and error might take awhile, it took us 4 years, but don't give up. Something will eventually help. Christy

My son used to get that, sometimes on his neck or on his back. He would take a cool shower and it would go away. For him, I think it was part of his MCAS. It doesn't happen anymore, maybe because of the MCAS meds he takes.

I had a chronic cough for several months. The doctor said it sounded like pneumonia when listening to my breathing, but an X-ray ruled that out. Then they thought it was allergy related. During routine blood work they found I was Vitamin D deficient, and after starting vitamin D supplement the cough went away entirely and my breathing is back to normal. Have you had vitamin D checked recently?

I can't fill out the poll. My son's was caused by MCAS. It wasn't an option, perhaps add 'Other'

This story could have been written about me as well. Thank goodness it didn't happen, and now my son is also an adult age. Very,very, scary. We had doctors telling us is was psychiatric and I refused to accept that diagnosis, knowing it wasn't true. Christy

Dr Afrin explained that there are over 200 receptors and for us Klonopin was the key that fit the receptor that needed unlocking. We were lucky to find the key. As for 'needing' the drug or becoming addicted, the medicine has made such a profound effect that I couldn't imagine taking it away from him. He was pretty bedridden most of the day before finding this medication.

My son has MCAS and tried a couple of mast cell stablizers. They didn't help or hurt. He also tried Singulair, no help or hurt. Ativan, no help or hurt. In June we finally found the drug that has helped him significantly, Klonopin. His nausea is way way down. He currently takes Zyrtec, 10 mg 2x day, Zantac (just reduced dose) 75 mg 2x day, Klonopin 5 mg 2x day, Propranonal 2x day, Doxepin 100 mg 1x day Vitamin D 5000 IU daily

Sorry, no ideas. My son had IV Saline at home, 1 liter per day for 5 days, that the insurance covered no questions asked. I don't know why one insurance balks while others don't, especially since it would save them money by avoiding the ER expense.

In Amazon do a search for 'Fidget toys'. There is a variety of them. They give your hands something to fidget with. They also recommended markers that have 'flavor' smells. When you smell something, it distracts your brain from the pain or symptoms.

My son went through the program at the Mayo Clinic for kids with POTS or pain. One of the things they were taught to do by occupational therapists was to distract themselves. They had pencils that had moving blocks on them or squishy balls or small line of blocks held by elastic that could be pulled on and manipulated. These distraction devices helped them focus on something other than their symptoms, plus they were small enough things they could take to school with them and use while sitting in class without being disruptive. I bought him a couple of different kinds from Amazon.

We stopped the IV Saline because that next week he was diagnosed with MCAS. We wanted to focus on the treatments for that to see what was helping or not, plus that fact that a teenage boy was not happy at all with the prospect of having IV's for the long term. That all took place in April or May of 2012. Finally in June of 2013 we found a medication to help him with his nausea and he is much more functional.

http://santamariamedicine.com/2013/04/saline-therapy-hydration-found-to-be-a-powerful-tool-in-treatment-of-dysautonomia-pots/ Here is the link to a good article about it. My son had IV Saline for one week over a year ago. It was done in our home, one bag a day. A nurse came and got it started and then each day I started the bag, disconnected, etc... It helped him get out of a really bad flare he was having. He was still feeling really bad, but better than he had been. His neurologist prescribed it upon my request, he had never prescribed it before but he is very open minded to my requests.