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Specialists for Ehlers-Danlos Syndrome, SIBO, Aeortic Ectasia
Good Morning-
My 17-year-old daughter was diagnosed with EDS a few years ago. Two years ago her cardiologist identified an aeortic ectasia from an echocardiogram. Our follow-up echo was just yesterday, and cardiologist identified the aeortic ectasia is due to a bicuspid valve, and the ectasia has grown from the mild range to the mild-moderate range. A bicuspid valve isn't completely abnormal as it affects 1% of the population. Cardiologist feels the change in ectasia has to do with her growth over the last two years (although my daughter hasn't grown in height over the last two years). While ectasia is very common with a bicuspid valve, I worry the enlargement and change in size is due to EDS. Cardiologist feels that it is possible it has something to do with it, but ectasia isn't something she necessarily sees in EDS patients-- but ectasia *is* common w/ bicuspid valve- so that would lead her to believe this has little to do with EDS. (for the record- we LOVE our cardiologist. she is terrific.)
I loosely consulted with two other cardiologists (both related to a good friend of mine, so she forwarded them my concerns and they replied)- one is a pediatric cardiologist at UCLA, and the other a cardiologist at UCSF. Both are not too concerned and they agree there is no strong correlation between EDS and ectasia from bicuspid valve. That said, one thinks it would be good to get an assessment from a strong aorta and EDS group. The other agreed w/ getting assessment from a specialist(s) and said their only other addition would be a baseline gated MRI to follow aortic root as an adult/adult size (which I will ask our cardiologist about).
At this point, I am not frantic. And if nothing changes between now and next year, I'll feel a lot better. But I do feel it wouldn't hurt to identify an EDS specialist. Would love any recommendations- either to a specialist or a particular area of Mayo Clinic. Willing to travel wherever.
On another note, my daughter was diagnosed with SIBO earlier this year. She was prescribed Neomycin and Flagyl, both of which made my daughter really sick. Against my suggestion, she was adamant about discontinuing her medication about half way through. I am concerned about antibiotic resistance. She said she would try it again, so waiting to hear from GI if she thinks this is advisable. My daughter has not yet tried the FODMAP diet which was suggested to her by GI, and she hasn’t started taking any probiotics either. Both of which I am asking her to do. She has lost quite a bit of weight in the last year due to SIBO, so I am a little concerned. Her blood tests were okay, but she does have low glucose levels. I feel that this will be a life-long battle for her because of EDS. Wondering if anyone has any insight or experience or suggestions for SIBO— what has worked for you, what hasn’t worked, etc.
Thank you!
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*will also note that my daughter's diagnosis for EDS is the hyper-mobility type. Not the vascular type.
Hi- I do have both experience with hypermobility (diagnoses with hyper mobility spectrum disorder, which is very similar to hEDS and has the same treatment approach, but I don’t meet all the clinical criteria) and SIBO and other GI symptoms.
I’m happy to share some info/resources. I’m commuting/heading to work, but just wanted to let you know I’m out here. I’m sure there are others. And hopefully this will also remind me to reply in full when I’m sitting still. Tell your daughter she’s not alone. She’s lucky to have you 🙂
Also, forgot to ask. Do you know what type of SIBO she has?
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1 ReactionHi @shcraft. While we wait for @emo to share their experience with you. You may find the following discussions useful:
- Hypermobile Ehlers Danlos Care Team at Mayo Clinic?
https://connect.mayoclinic.org/discussion/hypermobile-ehlers-danlos-care-team-in-arizona/
– Ehlers Danlos Syndrome – Who is the best doctor to see? https://connect.mayoclinic.org/discussion/ehlers-danlos-syndrome-new-diagnosis-1/
There is also a very robust conversation happening on SIBO in the Digestive Health group as well:
- Small Intestine Bacterial Overgrowth (SIBO)
https://connect.mayoclinic.org/discussion/small-intestine-bacteria-overgrowth/
I'd also like to tag @realitytest, @tajahar, and @marye2 to share their experiences with EDS or as a caregiver for someone with EDS.
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4 ReactionsI have issues with "dumping," where if I eat too large a meal, or one with fats I end up with cramping, diarrhea and sometimes, vomiting. My doctor prescribed Sucralfate, which I take just as cramping begins. Seems to work. I also avoid processed foods, high fructose corn syrup etc and follow the advice from webmd on GERD Triggers. If I am eating something that has previously been a problem, I avoid iced drinks and opt for hot tea with the meal. You can also look at Terry Wahl's Protocol, to see if you can glean anything useful from that; there is also a cookbook. She also offers useful (free) blogs and webinars.
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1 ReactionSo sorry that you and your daughter have to go through ALL of this…how old is she? Sounds like she is old enough that you let her make her own decisions while being a supportive mom.
I don’t have any of the other issues that she has besides having had SIBO. But I can tell you that taking pre and probiotics, as well as following the FODMAP diet, religiously, should clear up the SIBO, unless there is a continuing cause.
My SIBO was so bad, that it caused two hernias needing surgery and a hiatal hernia that I still have to be careful with; doctor did not diagnose, had to change Doctors. Serious illnesses.
No drugs…just food! The kind that will starve the bad bacteria, not giving them what they eat. And the pre-probiotics that help to replenish the good bacteria.
For this to work, and it does, for three months, you eat only no or low fodmap foods, in appropriate amounts. Monash University specializes in the science of low fodmap foods.
The plan can get boring after a while, but it is worth it. You really can’t cheat. That is why I asked how old your daughter is, will you be able to help her with meal planning and will she be likely to follow the plan with your help? It is not forever…
Look online for publications that explain and provide some recipes.
I will send you a list that I always keep on my phone for a quick reference for correct foods. I don’t follow diet anymore, but I am still careful with some foods.
Best to you both with all of the issues!
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Look up ibsdiets.org
The have a great starter list you can keep up on your phone!