Christy_D

Dynakids.org has very good print outs to give to the school. My sons school appreciated it when i printed it out for them. They gave a copy to each of his teachers. He graduated in May but his school always did everything they could to help.

My son was diagnosed via blood test, urine test, no bone marrow test. His heparin levels were 8.5 times to high(highest the doctor had ever seen) and his PGD2 were 2.5 times to high. His histamines level was the highest of normal, but he was also taking doxepin at the time which has anti histamine in it, so I'm sure that sku'd the test. His doctor is a hematologist/oncologist.

Yeah Issie! Glad to hear it. You have worked so hard, researching, etc.. I'm glad it is paying off. Christy

He has basically lost all of his friends, he had to stop going to school in the middle of 8th grade and he just graduated high school in May. He has been homebound for most of that time. He went from playing select soccer and baseball year round and being physically fit to not being able to leave the house. Boys don't have the maternal instinct and don't want to just come over and sit around to keep you company. His main debilitating symptom has been nausea, which since starting clonazepam in June has been greatly diminished(still there but more functional). Now we just have to get him going again and find some social things for him to do. He needs to find a place to make new friends since his are gone or off to college. His outlet for socializing right now is on line games. Dr Afrin (mast cell specialist) said mast cell patients live a life of misery until they are correctly diagnosed and find a treatment plan that helps them. That was hitting the nail on the head.

Andy, My son takes Zyrtec-(10mg 2x day) and Zantac(150mg 2x day). Also, when he was first diagnosed with POTS, the first medication he was prescribed (after fludrocortisone) was Doxepin. It is prescribed by doctors for MCAS as well, since it has anti-histamine in it. The dose he takes is much higher than most people take. He is currently on 100 mg, but at one point was up to 175 mg.(enough to take down an elephant one doctor quipped.) He did really well on it for a brief period and it still has some effect on him since we have taken him off of it twice he did much worse without it. My son is one of those that can't feel when he is having tachycardia. On a blood pressure cuff, we have caught his hr at 180 and he couldn't tell. But when the pain comes with it, yes he can feel his heart beating. He also experiences upper back pain at the same time.

Sorry you had a terrible day. My 18 year old son has POTS and MCAS. Heat is what triggers him to have chest pain, he hasn't had it in a long time since he rarely goes anywhere. On vacation a couple of summers ago, we were on vacation walking on the beach and he got the most excruciating chest pain he had in his entire life. An urgent care doctor gave him a shot of prednisone and that calmed it down pretty quickly.

My son and daughter both take Thermotabs, after eating. Like Rachel stated, they are buffered. Neither of my kids have an issue with them. The doctor recommended buffered ones. They make sure to take them after eating though. I have gotten them at Walgreens, they keep them in the pharmacy and when they were out they just ordered them for me. I have also gotten them on Amazon.com.

We had that happen with my son's doxepin a couple of years ago. They increased the dose and immediately he felt a lot better. He was able to go to school for 4 hours a day, start living life,etc.. Then after 6 weeks it abruptly stopped working. Sadly, we have never been able to replicate those 6 weeks and it actually just continued to get worse and worse after that.

I 'self-referred' my son to every specialist he has seen. His pediatrician wasn't doing anything, so I researched and would email the doctor that I would want my son to see. Emails go straight to the doctor, so I could bypass the scheduling dept about being rejected because he was too young,etc...I would explain the symptoms, diagnosis,etc.. and the doctors have always emailed me back okaying and agreeing that he should be seen by them for further evaluation or treatment. One scheduler almost didn't let me make the appointment, she finally agreed when I sent her a copy of the email from the doctor. A doctor at the Mayo Clinic also emailed me back and CC'd his scheduler to bump us up as soon as possible. The usual wait to see him was over a year and we got in to see him in 3 months. So, I have self-referred my son and the pediatrician was happy as long as she got updates from those doctors. I have found emailing to be the easiest route. Christy

I'm glad to hear something has helped. This trial and error with medications takes so long to get to the right medication. It is so exciting for a mom when we can get our kids some relief.

Welcome to the forum and sorry to hear how this illness has taken so much from you. While I don't have dysautonomia/POTS, my son and daughter do. Have you read the book 'God Needs Me' by Lynn Fox Adams? Your condition sounds very similar to hers. Christy

I think men are less likely to seek help on these forums. I am on here for my 18 year old son, who never discusses his illness with friends and is not interested in the things I find from researching. I tried to encourage him a couple of years ago to join dynakids.org for kids with POTS, but he had absolutely no interest. So, I think part of it is a 'guy thing'.

Is this the video you were looking for: Christy

Yes, thanks for posting.

My son tried Cymbalta with Abilify a couple of years ago. It wasn't helpful or hurtful to him. I was hopeful that it would help after reading a post(on a different forum) by a mother whose two daughters saw drastic improvement on high dose of Cymbalta. Unfortunately we didn't get any improvement, but at least it didn't cause him to get worse either.

It helped a little, but did not touch his severe nausea(finally klonopin is helping that). It did make him drowsy for a week or two, but then he got used to it and no longer gets drowsy. On old posts on the forum, many others have stated that the antihistamines were helping a lot. FYI, the first trial of antihistamines he was put on was Claritan and Pepcid.

My son takes Zantac and Zyrtec(full dose in the morning and again at bedtime). He has tried several other prescription meds as well, gastrocrom, aspirin therapy,etc..

I've never heard of a 5 minute TTT. My son had one for 40 minutes in Cleveland, and 10 minutes at the Mayo Clinic. My daughter had one this year in St Louis for 40 minutes. In my opinion, 5 minutes is not a very conclusive test. If you can have another one done for a longer period of time that would be more conclusive of actually ruling out POTS.

My son took it for 2.5 years and it helped immediately. It stopped his dizzy spells right away. The spells did not return when they took him off of it. He did gain weight, not sure how much was from the fludrocortisone and how much was from doxepin(also causes weight gain). They tested his potassium occasionally and he never had problems with that either. That is one medication that was helpful and was not hard for him to come off of either. My daughter started it 2.5 weeks ago. I'm not sure how if it is helping her as much yet, she did gain 4 pounds but that was much needed.

My son was diagnosed with POTS in 2009 and in 2012 I sought out testing for MCAS. The treatment for MCAS is different from POTS and some medications can make MCAS worse. I thought it best to find out for sure what we were dealing with and one of the medications the MCAS dr. prescribed has been extremely helpful. I figure, the more you know....the more you know.

My son started it at the beginning of June. He was prescribed it to try to help his nausea. It is the first medication in almost 3 years that has been helpful. His nausea went from a 7 or 8 daily (on a scale of 10 being the worst), to being a 3 or 4. I'm not sure about it resetting the autonomic nervous system, but it has helped. We had success with doxepin in 2010 but it only lasted for 6 weeks. Ativan was prescribed last year, same family as klonopin, and it didn't help.

The first line of treatment is H1 and H2 antihistamines, like Zyrtec and Zantac or Claritan and Pepcid.

My son is also 18 but doesn't socialize since he lost contact with his friends due to being homebound for the last 4 years. Like looneymom said above, I wouldn't stand in his way when it comes to socializing. As for testing, I have let them do all the testing they wanted if it brings answers and helps with the treatment. While my son was diagnosed with POTS in 2009, he wasn't diagnosed with MCAS until 2012 upon my urging for testing. I figure, the more the know the better line of treatment they can follow. Also, my son has tachycardia and doesn't feel it. His heart rate has been up to 180 and he didn't feel any difference. He is also heat intolerant, which occasionally make him itch and gives him chest pains. It's all part of the condition, he finds cool showers help bring symptoms down if he gets too warm.

We took my son to Dr Afrin in South Carolina. He is an oncologist/hematologist. MCAS is one of his areas of 'interest' or expertise.

Naomi, he has never had an EEG. I will research abdominal epilepsy, I don't know anything about it. Thanks for mentioning it.