Hi. I’m a mother of 4. 3 of my children have Classic Type EDS as does my husband and his mother. So far it hasn’t skipped a generation in this family. I am so happy to find this site! My youngest daughter, 14yrs., has had a lot of stomach aches growing up and at 6 went through a stomach biopsy. First they thought Celiac Disease and then not. She still suffers from stomach aches , although not every day. She complains a lot that her food runs right through her. She is getting a lot of viruses with a sore throat lately and is now complaining of a “lump” in her throat. She’s been to the doctor twice for strep tests and all come back negative both the rapid and the cultured. The last visit the doctor recommended Zyrtec, which actually did seem to help a little for about a week or two. Imagine my intrique when I read about and listened to Dr. Diana’s videos telling us to try Zyrtec and Zantac! I’m just wondering if anyone else has had this lump in the throat feeling? She has also complained of feeling like she can’t breathe and her heart beating very fast and skipping as well as headaches stemming from her neck. She’s seen both a Cardiologist and an Allergist. Everything is normal. After coming to the site I am now wondering if she has POTS or Mastocytosis or both. I’m already going to the store later to get more Zyrtec and also Zantac.
My husband works nights, which probably doesn’t help, but on his days off, and every other week that’s 3 or 4 days in a row, he sleeps almost the entire day. I want him to the combo too. I can’t wait to see their doctors . I have already downloaded The Driscoll Theory and I want to have my 14 year old tested for POTS.
Thank you Dr. Diana for your research and this site. You are sure to help so many. Now if we could just get this heard nationwide and on every doctors desk!
Hi Sweetie, When I read your first line, I thought for a second that you had 4.3 kids! This is tough to tell over the internet! I’ll throw out some possibilities, though, how’s that? Lump in her throat: Did you rule out inflamed tonsils and inflamed uvula? Assuming that’s not the issue, some people get a “glob” of mucous in their throat from… you guessed it ... mast cells! It can cause chronic throat clearing—that sounds so weird, but my son developed it! I just have to hack now and then… OK, the breathing, fast heart beat headaches/neckaches—that sounds like POTS to me! Can you watch the video on POTS and dysautonomia I have? It will give you some ideas. Then, YES, I would certainly check with your doctor about mast cell therapy (zyrtec, zantac double dose is a good start) and a mast cell stabilizer, and avoiding histamine foods, beverages. If you suspect POTS, this treatment will help because we are fighting the vasodilation that makes it worse. If headaches/neckaches are an issue, I’d recommend trying a soft cervical collar at night time while you beg your doctor for a day or two trial of Diamox (if there are no contraindications). In that short period of time, it will be OBVIOUS if he is responding, and we can talk long term management. (Some day we’ll be able to “fix” this—Part 2 coming soon! But the technique is not perfected yet, so we need to wait. It will all make sense, then, though!). Gentle hug to you and your 4.3 kids. hee-hee. Diana