I think I could possibly have mast cell…especially my kids. My oldest daughter who is 14 has always complained about stomach pains since she could talk. The last couple of years her face turns red alot to where kids say stuff to her. She is thin, blonde and has blue eyes and very fair skin. Her arms turn “purple” a lot. She has post drip a lot too. She tells me all her joints hurt. She only can do maybe 3 of the bighton scale as so can I, but my 8 year old can so all but one or 2. She doesn’t complain about anything hurting, but has had a milk allergy ever since she was born…so she takes no dairy. My son who is 11 always clears his throat. And blinks a lot like his eyes are bothering him. So my questions are
1. Do you have to be high on the bighton scale to have EDS? Also my mom and friends score a nine, but have no problems at all.so icing know if they really have EDS?
2. Is flushing when your skin turns red?
3. Should I give them Zantac and surged? Can I only give them 1 dose each and can you give it at the same time? Or dou have to do 2?
4. Does treating mast cell help with joint pain and getting more flexible?
5. Do I just ask their dr about diamox? Will they give it to them? Do you have to take it everyday or just when you feel pressure?
6. Our necks are messed up. Mine definitely twisted and straight. Do u think getting it fused will help. It seem that everyone who gets it fused ends up with more pain and needs more surgery…
7. And last….do you know anything for tethered cord or just surgery?
Ok maybe not few ques., but a lot of ques….lol!!!
Thanks so much. I have enjoyed all your videos and can relate to them so much!!!!!!! Great info!!!!
Agh! You slammed us! Let me try a few short answers, OK?
1. Most people are higher than they think. A good geneticist will test hypermobility that is not on the Beighton (foot to forehead, for example)
3. Some of us take 1 (or another H2 antagonist – just google), but 2 is best, if tolerated.
4. It may help with joint pain, as mast cells also kick out some main initiators like prostoglandins. Flexibility? no.
5. Just ask! Ask your doc for a dose similar to what you’d take if you were preventing altitude sickness with it (and check for contraindications. Any sulpha allergies?)
6. I almost got a fusion. Frankly, I didn’t care if they had to cut off my head. But Diamox and mast cell treatment eliminated the symptoms. A-MAZING. Talk to your doctors, but for my kids and I, I wanted to try medical management first.
7. Just surgery, but some things that are treatable can mimick tethered cord, so be careful. Ask about interstitial cystitis, for example.
Whew, I hope that helps!