Christy_D

Yes, it can run in families. My son has POTS and my daughter was only diagnosed with OI. I had many symptoms as a teen, as did my mother. Your family can have a predisposition to it. After years of testing and digging for answers, I think EDS is the main cause for our family. My daughter has an official diagnosis of EDS, and the geneticist would guess my son has it also based on what I told her about him. He also has MCAS.

Here is an article you can show him: http://santamariamedicine.com/2013/04/saline-therapy-hydration-found-to-be-a-powerful-tool-in-treatment-of-dysautonomia-pots/ My son had IV Saline at home. It was helpful, but not something he wanted to do continuously (teenage boy!).

My son's main issues have been GI related. He was diagnosed with gastropareisis in 2009 and in 2011 he was retested and it was fine. My son tried Ativan and got no relief, but a drug in the same class Klonopin(clonazepam) has been the most helpful medicine for him. I'm not sure why it works, but his nausea is way, way down since starting it.

Here is a link to a list of symptoms: http://www.mastocytosis.ca/signs.htm You can see many of the symptoms overlap with POTS, and so do some of the medications to treat it. The first medication my son was prescribed for his POTS was doxepin. It is also prescribed for MCAS. It has antihistamine in it. It took away some of his symptoms immediately and those have never returned, (ie...licorice legs-unable to walk- itching when he got to warm). When my son was in the 10th grade, his dose of doxepin was increased to a very high dose(max) and he did great. He felt really good, but it only lasted 6 weeks and abruptly stopped. Dr Afrin surmised that the high dose caused his mast cells to go on a dumping binge and they became depleted. So while his mast cells were depleted he felt great until they built back up and then he returned to being bedridden. He remains on the doxepin though because without it, he gets so much sicker. Perhaps try antihistamines on your daughter to see how she does. My son takes 10 mg zyrtec twice a day and 150 mg zantac twice a day. Even if she doesn't improve on antihistamines, don't rule out MCAS.

Yes have her tested. I put it off for a very long time thinking it wasn't an issue and wasted a lot of time that could have been spent looking for the right medication to help my son. It was at the urging of someone on this forum that finally got me to get him tested. Testing is very tricky and has to be done exactly correct. Dr Afrin in South Carolina is always willing to guide other doctors through the process We opted to see him directly, but when we were there last October he said he wasn't accepting any new patients. That may have changed since then, not sure. There are other specialists in the east, can't remember their names, I think in Boston maybe. If I could go back in time, the one thing I would change would have having him tested for MCAS when I found out about it, instead of waiting over a year. Just my two cents. Christy

Dr Chelimsky would be a good fit since your daughter has GI issues. I think my son has outgrown his POTS, it took 4.5 years, but his MCAS will probably be a life long issue, waxing and waning. He still has temperature regulation issues ,hand tremors, sleep issues and nausea (very, very decreased but still there mildly). He currently functions at about 70 to 75% of his old self and that is as good as the doctors expect it will get. Don't give up hope, I thought it would never happen(getting better) but it did. My fear was he would be bedridden and homebound for his entire life. He is still on medications and I'm not sure if they are keeping the POTS at bay or the MCAS since the medications are prescribed for both.

Yes, negative and positive emotions can play a role. My son could nose dive if he was excited about something (ie..Christmas, joking around with friends,etc.) and if he was stressed or in a bad mood, same thing. For him, there used to be a fine line that he couldn't deviate from one way or the other.

Sorry your daughter is doing so poorly. It is so hard to know when the sickness is POTS or some other bug. My son also vomited frequently in the beginning, also diagnosed with cyclic vomiting syndrome. Thankfully, that symptom stopped. I would ask my son if he felt any differently when things amped up. He could tell the difference as to whether it was his usual POTS or something else going on. When he was at the Mayo Clinic, they taught him a breathing technique to prevent vomiting. They said there is no way to vomit while breathing this way. The problem is you can't breath that way forever. As for the records, I have a complete set of his records from every doctor so I can send them to what ever doctor wanted them. It took a while to get them all gathered, but now it is easy to keep up with. After every appointment or test, I request notes or results be mailed to me. I scan them into my computer and keep a 3 inch/3 ring binder organized by doctor. I also have his MRI's on CD. I no longer have to wait for the middleman to send their reports. It also allowed me to see what mistakes they made regarding information they gathered, etc... Stay strong, Christy

My son took it but he didn't get any benefit from it. Sorry I can't add much to that. It didn't hurt or help.

June, Also, when we were trying to get my son to go to school, the counselor gave him a couple of places he could go to during school if he felt he needed to. One was an empty office, where he could sit with the lights off or recline back in a chair, or a corner of the library or an empty classroom. It was written in his 504 plan(at the time, before IEP), that he could dismiss himself from class and go to the nurses office or one of those places at any time he felt he needed to. Would she feel better if she knew she could get away from it all if she needed to? Christy

My son, for his entire high school education, did 3 classes with the homebound teacher and 3 classes on line each semester. It was hard to get it all done, he even worked through the summers, but he did graduate with his class on time. The school gave him PE credits for doing water jogging at home (60 hours) and for physical therapy at the Mayo Clinic, so that helped. He was a very social, popular kid and didn't want to give up school, but he also knew there was no way he could attend school and get an education feeling the way he was feeling. He knew his reality was he was sick and brick and mortar school was not going to happen. Our state pays for on line classes for the 'medically fragile' and if they ran out of funding, our school district picked up the tab. There are many options to investigate.

Sorry you are having to go through this. We had the opposite, the psychologist believed it was a physical problem while the medical doctors believed it was a psychological problem. Move on to the next doctor, you will find the ones that are helpful and disregard those that aren't and don't look back at them. You and your daughter are in our thoughts and prayers. Christy

I also disagree with the weight gain theory. When my son first become really ill, on a daily basis, he was a very thin kid. He was in the 20% for his weight and 95% for his height. He has put on a lot of weight, now he is a little over weight, which is also not good. But the more weight he put on, the sicker he was getting. I don't think weight plays a big part in this. I think deconditioning hurts him, but whether he was thin or not, it didn't matter, he was just sick, sick, sick.

Florinef was the first medication they gave my son. It took his dizziness away and he never had any side effects from it.

Sad to say, my son was also in the gifted program and had to take some easier classes to help get through from the brain fog. He did graduate on time with his class and Magna Cum Laude. His counselor said she never had a student graduate on time when they did not attend school for four years. That was because of his competitive side, not graduating on time would mean he 'lost the game' in his eyes. I will say, that until last June, I wasn't seeing a light at the end of the tunnel. He had been homebound and mostly bedridden for over 4 yours. Then, suddenly, a medication that finally helped because of the full diagnosis. So, even when it seems very dark, just keep up hope that the light is there...you just can't see it yet.

An IEP is an 'IndividualIzed Education Plan'. It is a step above the 504 plan. We didn't jump right into an IEP, we kept thinking he was going to return to school at some point, and sad to say it just never happened. They should be able to provide intermittent homebound at least. My son missed 30 days of school the first semester of 8th grade and we received homebound to help get him caught up. They really owe you 5 hours for every week she misses. If you google 504 plan, you will be able to find the rules they need to follow. Our school district bent over backwards to get my son his education, but when speaking to other parents with sick kids, most of their schools were less than helpful. Our school counselor and even homebound teacher made sure we got the services that were coming to us. Below is the link to the dynakids.org page that somewhat goes over education. I hope it helps, and maybe you can set up a meeting with the school counselor to re-go over your options if things are worse now. http://www.dynainc.org/docs/educating_the_dysautonomia_student.pdf

June, Has the school set you up with a homebound teacher to help keep her work up? Half way through my son's eighth grade year was when he stopped being able to attend school, and he wasn't diagnosed with POTS until the summer after 8th grade. He was forgiven by the school for a lot of his missed work. They sent a homebound teacher to our house for 5 hours per week. He continued on with homebound teachers and on line classes through his entire high school years. He ended up getting an IEP instead of the 504 plan his sophomore year. Make sure you get the school to provide you with everything that they are legally obligated to do. Christy

Before getting the POTS diagnosis for my son, we were told it was anxiety, depression, school avoidance, etc...I kept researching on line until I found doctors who could help us. We had to travel almost 10 hours to see those doctors, but they finally validated that it wasn't a 'mental' issue. Justina Pelletier's case is becoming National news. It is supposed to be on Megan Kelly's show on FOX news tonight and Glenn Beck had her father on his show this week as well. I just think that what is happening to them could of happened to my family. I 'doctor' shopped, of course until we found someone to help us. I knew my son was sick and not mentally making it up. I think they were accused of medical abuse of their daughter. Besides my son having MCAS and POTS, my daughter was officially diagnosed with EDS and OI and experiences daily pain. We could have easily ended up in the same spot as the Pelletiers. Thank goodness both of my kids are now over 18. Scary stuff.

Also, have you looked at dynakids.org. It is a very good website for kids with dysautonomia. It has a lot of good print outs, resources and a forum for the kids to talk to one another.

When my son first got sick, all the doctors were telling me it was a mental issue. So, while still searching for a doctor to help, I took him to a psychologist. Not only did she help him mentally handle his illness, she was the one who researched his symptoms, telling us it wasn't a mental issue but was a physical issue. She thought it was some type of orthostatic intolerance and told us to see a cardiologist. So, she was very helpful in more ways than one. My son, my nature, is a very, very laid back kid. He really never was depressed, except for when he was told it was a mental issue or school avoidance. A psychologist can put things in perspective for them and give them coping mechanisms.

My son was diagnosed with POTS when he was 14 and MCAS when he was 17. After five years of being extremely ill and nauseated, homebound the entire time, we found medication to help him last June. He is much more functional but is hesitant to start living his life again. What have they started your son on to try to treat the MCAS? I think, had we had we known he had MCAS from the start, it wouldn't have taken so long to get him feeling better. So, it is a good thing you know right up front that he has both issues. Christy

My son was diagnosed by a cardiologist, but has always been treated by neurologists. The cardiologist didn't have enough expertise to treat the whole syndrome.

I will PM you. Christy

We saw Dr Philip Fischer(pediatric doctor) at the Mayo before going to the PPRC there. If you search his name in Youtube he has a video out there discussing POTS.

My daughter was diagnosed 2 weeks ago. There isn't much they can do for it. She will be going to physical therapy to tone the muscles and the doctor recommended daily medication to help with pain but my daughter didn't want to take that route. She agreed to take advil 3x a day for a month to get pain and inflammation under control. There are lifestyle changes that can help, her job is to physical for her but she loves it, so she will continue with it until she can't do it anymore. As for helping with the POTS, the geneticist didn't make any recommendations for that; that will be left to her neurologist to treat. As for only working with two medications, there are a lot of medications to try for POTS. My son went through a whole list of medications before finding the right medication and right dose. What helps one person, might make the next person sicker. Trial and error is part of the process in finding what will help you. A cardiologist diagnosed my son but was unable to treat him. We have stuck with neurologists for treatment. That's just worked for us. Christy