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mommy2seanpParticipant
If you feel the rash is worse because of the cromolyn I’d take a picture and email it to your mast cell specialist. My son and I have both seen a slight increase in symptoms when increasing vials but they go away rather quickly and they’re mostly GI in nature.
Is it flushing, red splotches, or all over body rash?
mommy2seanpParticipantI’ve heard standing up is more accurate for Chiari.
Hope the docs can figure something out to bring your daughter relief.
mommy2seanpParticipantI’m sorry to hear about everything you’re dealing with. I too have EDS and POTS but also MCAS. My 4 1/2 yr old son has EDS and MCAS and our road has also been a challenging one.
Here’s a bit of our experiences:
I don’t know if you’ve ever looked into MCAS (mast cell activation syndrome) but some doctors believe POTs is actually MCAS and that if you control the MCAS you’ll also control the POTS. For me, I was able to figure out my POTS triggers and with the help of H1/ H2 blockers, Singulair, and Cromolyn my POTS symptoms are under control. They will reappear with reactions but resolve after I take the appropriate meds.
A HUGE POTS trigger for me was caffeine. Perhaps you and your daughter can take a look at her diet and eliminate caffeine, dyes, preservatives, additives and try to eat whole, organic foods. A daily food log might be helpful in figuring out triggers. Meds can also exacerbate POTS symptoms.
Hang in there, you’re doing a great job. Waiting for results is so hard.
Tinamommy2seanpParticipantHow did you start the cromolyn? Did you work you’re way up to the required dose? (1 vial 30 minutes before a meal for a week and so on?)
I started seeing a positive difference in my son at week/ vial 4 (100mg vials). I’m on week/ vial 3 (100 mg vials) and am starting to notice small improvements. Dr. Castells told us that it will take 3-6 months to see it’s full effects.
If you think the rash is from the cromolyn you should probably discontinue it and check with your doctor. There are other mast cell stabilizers like Ketotifen.
Sorry you’re going through all of this.
TinaJune 23, 2012 at 8:58 am in reply to: New Here – History Of Mvp, Syncope, Pots, Possible Mast Cell #2476mommy2seanpParticipantDoes this state it’s specifically for EDS hypermobility? Our family of HEDS doesn’t have the hyperelastic skin characteristic. Wonder if it’s a subset of patients in the HEDS group? Can’t wait to see what the future holds and if/ when doctors will start ordering this test.
Thanks for sharing.
June 23, 2012 at 7:40 am in reply to: New Here – History Of Mvp, Syncope, Pots, Possible Mast Cell #2474mommy2seanpParticipantPalimino,
Would you mind sharing where you saw that info, that would be wonderful! I’ve read that there was a new information for 90% of CEDS patients. This is the first I’m hearing about Hypermobility.
June 20, 2012 at 7:43 pm in reply to: New Here – History Of Mvp, Syncope, Pots, Possible Mast Cell #2462mommy2seanpParticipantHi Tristessa,
I share many of your symptoms and have been officially diagnosed with EDS 3, POTS, and probable MCAS (Idiopathic Anaphylaxis, multiple food and drug allergies, chemical sensitivities, etc) My son is 4 1/2 yrs. old and has been diagnosed with EDS 3 and MCAS. His diet is limited to 6-8 foods and has had 5 episodes of anaphylaxis. He just had an appointment with Dr. Castells in Boston who started him on Gastrocom.
Some researchers believe that EDS 3 and POTS is actually MCAS since no genes have been found or associated with EDS 3.
mommy2seanpParticipantI’m sure October 31st can’t come soon enough! My son just had an appointment with Dr. Castells at BWH and diagnosed with MCAS (in addition to EDS hypermobility) and we finally feel like we’re moving in the right direction. Would someone mind telling me what cytokine testing is?
Thank you,
Tinamommy2seanpParticipantWhat reason did they give you for being fired? I’m not an attorney but they can’t fire you for being disabled or being on disability.
Hang in there, things have to get better!
mommy2seanpParticipantTrust me, I know how hard it is. I waited almost a year to get my son seen by a top Mast cell specialist. Are you talking about Dr. Francomano? Even though it seems like forever you might want to fill out the paperwork and schedule an appointment. Perhaps you could get on her cancelation list and something might open up sooner.
I’m sure the stress of all of this is not making you feel any better.
Hang in there.
mommy2seanpParticipantThanks Barbara. It’s hard to know for sure what’s causing what. When my geneticist watched the video he suspected Dysautonomia for the instances when he couldn’t get up from a lying down position. Dysautonomia suspected mast cells were the underlying cause. Other times the pain is just so severe that he can’t bear weight on his legs and is unable to walk. If he attempts he just collapses. Fortunately since removing dairy from his diet the only times he gets pain now is if he comes in contact with a trigger (which can’t always be avoided). The flares usually last a day or two and we manage with benadryl. We’re now working with a mast cell doc who is hopeful that Gastrocom will eliminate even these occasional flare ups.
mommy2seanpParticipantHave you looked into Mast Cell activation at all? My sister gets chest pain (angina) and her doctor feels it’s due to a mast cell issue.
mommy2seanpParticipantI’m sorry to hear what you’re going through. I too have POTS but also EDS and MCAS.
What I’ve found most helpful in controlling my POTS symptoms is increased hydration (water or coconut water), increased salt intake, and avoiding known triggers. For me coffee was my biggest trigger in setting of my POTS. Once I eliminated it from my diet my symptoms have been better controlled.
Best of luck to you and please keep us posted.
Tinamommy2seanpParticipantI’m so sorry to hear this. My son is also afflicted with leg pain (ankle, shin, knee). Here’s a short video when he was symptomatic:
http://www.youtube.com/watch?v=E8wGUoUT8BY
My son has multiple allergies. His diet consists of 6-8 foods. This video was taken during an 8 month dairy trial. Upon removal of dairy his symptoms of pain and fatigue progressively improved!My son was recently diagnosed with MCAS. For him pain can be a “symptom” of a reaction. Specific triggers like dairy, banana, strawberry, latex, and chlorine will cause him pain flares. I’ve found Diphenhydramine (Benadryl) to help alleviate his pain. Continual doses round the clock usually do the trick. I’ve also found that an adult foot bath with warm water and bubbles help as well as cartoons for distraction.
My son is about to start Gastrocom which I’ve been told by his doctor should help with the pain.
Good Luck. I know how hard it is to watch them in pain. Please keep us posted.
Tinamommy2seanpParticipantI didn’t do well with Advair and actually suspect it set off an anaphylactic reaction in me. My sister is on the cromolyn nebulizer and is very happy with it so far.
Another option might be Ketotifen. It’s an H1 blocker, Mast Cell Stabilizer, and Asthma controller. I’ve been prescribed it but only took one dose so far. I had some itching and dizziness so have not continued with it yet.
My asthma can be pretty severe and I’ve found some foods can also trigger it. Keep me posted and let me know if anything helps.
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