Christy_D

My son started on florinef when he was 14(he is now 17). It did help his dizziness a lot. He did put on weight with it so try to stay active. It did not stunt his growth. He is now 6'2". He took it for almost 3 years without any signs of side effects other than the weight gain. He was able to stop taking it since dizziness is not a main symptom for him anymore.

Hugs go out to you! and Could the doctor be wrong? From my experience... YES! The only thing I can say, is keep doing your own research and looking for answers. Without me doing my own research, my son would have never been diagnosed with POTS or MCAS. All our appointments have been self referred. We were hoping our son could return to school his senior year, and as of right now that does not look very promising. Stay strong (easier said than done I know). Christy

For my son, it varies. He gets up any where from 3 in the afternoon to not at all. If he gets up, he is in a recliner in his room at his computer. He rarely leaves the house and is completely deconditioned. If he is able, his teacher comes at 7 pm and stays to 8:30 or 9 pm, at which time he needs to continue with his schoolwork. He watches a lot of Netflix or plays on line computer games when he can. He has become very isolated as he progressively feels worse. We are hoping to find medication to help the MCAS and turn this around.

By law they are required to put it in writing and have a short deadline after the meeting to complete it. My son is enrolled at his school with 3 homebound classes and 3 on lines classes. When he was able to attend school for a brief period of time 2 years ago, he was going to school for 4 classes and did 2 on line. You can go on line and print out the 504 plan guide lines and show them to your school about was is required of them. Fortunately our school district has been wonderful, but while at the Mayo Clinic PRC program many parents had bad stories about what their schools had put them through. Many were sent to court for truancy even after having a medical diagnosis.

I think you'll probably find everyone has different experiences with each anti-depressant. The only one that has had a positive effect on my son is the doxepin, probably because it has anti-histamine in it and he has MCAS as well as POTS. When we didn't think my son could get any worse, we took him off all medications to start from scratch. That is when we knew the doxepin did have some impact on him, since he got even sicker. He has tried several others, ie-Cymbalta (with and without Abilify), Zoloft and got no results or side effects from them. The only one we know he can't take is Nortryptiline(sp?)...it made him an emotional wreck.

I don't fully understand the 'crash' either. My son is sick everyday and spends 80 to 90% of his time in bed to ill to get up. I look at it as he must be in a perpetual crash, and on the occassional day where he feels good for a good part of the day and even leaves the house, those days are 'less symptomatic' (unfortunately few and far between these days).

My son takes claritin 10 mg 2x per day and pepcid 40 mg 2x per day.

Lyn, I agree the trip is well worth it. We have been to SC 3 times since April and scheduled to go back the end of October. We are trying to find a local doctor to work with Dr Afrin on treatment, but so far they have all turned me down! South Carolina is a 13.5 hour drive for us but I will continue making the trips until we find someone local to help. Christy

Alan-pots-ist, My son doesn't flush. But when the doctor scratched his back it left a large red welt that stayed there for a while. Christy

I also think the 'prescribed' amount of quercetin is higher than most people take. Dr Afrin wants my son to take 500 mg 3 times per day. So, if it is mixed with other vitamins, it might be too much of the other ingrediant. Christy

Dr Afrin said it can wax and wane like POTS. Some people have difficulty their entire lives, while others can have a bout with it and no more trouble. He said some people have to actually move to avoid environments that keep them sick. Everyone is different, again like POTS.

My son almost felt bad with the abdominal binder. He never wears jeans, only sweats and shorts with really lose elastic so they don't stay around his waist. I've never asked about his neck, but he doesn't like collared shirts. He does turn red when his shirt rubs his neck, but I chalked that up to his mast cell issue. Christy

Thanks for posting the article. Very interesting.

Very interesting article! My son will be starting quercetin next week. Thanks, Issie

We had my son's initial testing done at Case Western University Hospital in Cleveland and two years later we were at the Mayo Clinic in MN. Between the two, Case Western U. Hospital was much more thorough in the testing. The TTT in Cleveland was 40 minutes and computeriezed minute by minute, at the Mayo it was 10 minutes and done manually only checking bp/hr at rest, start and every five minutes. At the Mayo, we were in the pediatric department where as at Case Western they did all the autonomic testing at the same place. The Chelimsky's are no longer at Case Western so I don't know if everything is still run the same way. Overall, I was not impressed with the testing my son had done at the Mayo and very impressed by Case Western. That's my two cents.

Lyn, My son's heparin level was .175, over 8 times the normal. I am getting the quercetin from a compounding pharmacy. Dr Afrin didn't say anything about Dr Theo's but he did say make sure it doesn't have anything else mixed in with it ie-Vitamin C with quercetin. We too really like Dr Afrin. He really feels for his patients that have this. When my son told the Dr what his symptoms were, Dr Afrin told him how sorry he was for him. Christy

My son is an example of Relax86's post. We have been to Clevand (5x), spent a month at the Mayo and are now seeing a MCAS specialist in SC and my son is sicker than ever. Nothing has helped and he only seems to get worse. So seeing a specialist is not a guarantee you're going to feel better. BUT, I'm not leaving any stone unturned trying to make my son get/feel better. I think we just haven't found what will help him yet, and there is a long list of MCAS medications yet to try. Plus, we did have a short lived success 2 years ago(6 weeks of reprieve) that still gives us hope we will find what we are looking for. Just not giving up.

Lyn, My son's heparin levels are also extremely high. Dr Afrin said they were the highest he had ever seen. Unfortunately, so far the meds haven't helped any, but it can be a long trial and error period. The next on our list from Dr Afrin is Quercetin then Cromolyn. Right now we have added a morning dose of doxepin to have it in his system 24 hours a day. Congrats on the diagnosis! Christy

My son's pediatrician also wasn't very helpful, so I would look for a doctors email address and email the doctor directly and skip any office staff. Once I would get through to the doctor, they agreed that he needed to be checked out and tested. Then the doctor usually in the email gave me a phone number to call to schedule an appointment. If the scheduler gave me grief, I just told her I have an email directly from the doctor telling me to schedule this appointment. But, our insurance doesn't require a referral, so that was a plus.

We spent 5 weeks at the Mayo from October through first week of November last year. Dr Afrin said that the job of the mast cell is to basically react to environment, in the body and outside of the body. We had an appointment with my son's neurologist today, the POTS doctor, and also discussed why my son has being doing so poorly this year. He recommended going away for a week or sending him to some type of camp to get him out of his local environment to give him a break. So even the POTS doctor agreed, to get out of this rut maybe change environment. But, there is no way I would send him to any camp. He is just too ill to send to the care of strangers who know nothing about this illness.

My son almost always does better traveling, away from home. Since he has MCAS, the doctor said envrionment can play a role in his symptoms and we live in one of the allergy capitals of the US (St Louis). If we can't get a handle on his illness, a move would have to be a possible consideration. We tease him that he should travel 52 weeks a year so he can feel better. The one place he did not feel better was Gulf Shores, AL, but he felt his best and most funcitonal at the Mayo in MN. His doctor was serious when he told us it might be a place our son should consider living.

When my son had the test done, he did not sweat on his torso or left arm and had reduced sweating elsewhere. I asked the doctor the significance of the test and he said it furthered back up the diagnosis of dysautonomia and small fiber neuropathy. It didn't change the treatment at all.

My daughter doesn't get completely numb either, but she is also hypermobile which I've read have problems with this. The dentist uses a nerve block on her now, which I'm not sure what that actually is but it works for her. Christy

Dynakids has a lot of good brochures/resources http://dyna.latticegroup.com/resources/brochure

My son had initially had a 504 plan, then we moved up to the IEP. They should all be specialized to what your daughters needs are. For example, my son did not need permission to go to the nurses office whenever he needed, could carry a water bottle to every class, extra time given to make up work,etc. Look at the Dynakids website, I think there is information there. The IEP is even more extensive. For a brief time, my son was able to attend school for a shortened schedule, we did have to provide transportation. He now takes 3 on line classes and 3 homebound classes. The school provides a homebound teacher for 5 hours per week. Our school has done everything possible and bent over backwards to help my son get his education. He will be a senior this year. Here is the link to dynakids school page: (they also have resource printouts for schools) http://www.dynakids.org/schools.jsp Christy