Swollen tongue

[lasel22]

Has anyone with a connective tissue disorder like EDS or Marfan's ever had mast cell activation disorder resulting in an extremely swollen tongue. If so, has any treatment helped? This girl also has severe POTS/dysautonomia and lots of other symptoms - migraine, gait problems, pupil dilation, dystonia, gastroparesis, breathing problems, seizures. She has been told she doesn't have chiari but has not been seen by any true chiari specialists that I know of. I am urging her to contact mine. She hasn't had an upright mri either. She is currently in a children's hospital in boston, having been transported there from a hospital in nj that didn't know what else to do. Does anyone know of a specialist in the boston area that may be able to help determine if chiari or craniocervical instability could be causing some of her symptoms. Her tongue is so swollen I think they are concerned about her airway

[lasel22]

Thank you. I’ll pass on those names

[selmaS]

Please keep us posted on her progress, and send along our well wishes for answers and relief <3

[lasel22]

Thank you selma. Her condition keeps worsening. Her tongue keeps swelling and anti histamines aren't helping, neither are steroids. The hospital in Boston doesn't know what to do so she will be going to Cleveland clinic near the end of the month. She has sent an email to my NS in long island and he got back to her indicating she needs to send in the paperwork and disks and he will see if he can help. I just dont know if they should transport her to Cleveland clinic? Do you know if they have a good reputation for helping patients like her?  I almost think she may be better off going to the hospitals on long island that have so much experience with EDS and other connective tissue disorders and wait and see what my NS thinks is going on.  There is always TCI too.

I guess my main question is if Cleveland clinic is the way to go.

[selmaS]

I do not know if CC is the best place but right now LINY is closer to where she is.....and I agree may be the best place.....kinda scary that Boston can't help.
In addition to antihistimines is she avoiding foods that can cause histamines to be produced? Her diet needs to be looked at as well.

[lasel22]

Thanks for the advice, she is on a feeding tube and I assume she wouldnt be allergic to that?

[selmaS]

Well....yes she could be...with EDS many reject the shunt tubing....so it could be something that simple.

[selmaS]

Another possibility is thrush.....I am sure they ruled that out...but that can cause a swollen tounge too .

[lasel22]

So, it's possible she could be allergic to the feeding tube? Wouldn't that cause an allergic reaction near the feeding tube, not just the tongue? Thanks for the help.

[lasel22]

The feeding tube is through the nose. Isn't all tubing hypoallergenic now? Could a latex free tube cause a reaction?

[selmaS]

From what I have seen others have had issues with shunts and stents and you would think they would be latex free....not sure what is in it but others have had issues with this, so it is possible to have a reaction....not sure how to know where the reaction will occur.

[selmaS]

HI....I do know that some Chiarians do develop MCD along with having EDS......EDS seems to be the catalyst for Chiari.....

Here are some Drs names for the state of MA, I have heard many good  things regarding Dr Heilman.....

I have been taking antihistamines due to MCD can cause us to over produce histamine or have histamine intolerances....I find it helps me with my PND and sleep issues due to getting congested during the night.
Along with my Chiari DX I was also DX with EDS.

MASSACHUSETTS

Dr William Butler
Mass General Hospital
Boston, MA

Jean-Valery Coumans, MD
Mass General Hospital
15 Parkman St.
Boston, MA 02114
Tel: [phone]
Fax: [phone]

Dr. Carl Heilman NS
Tufts Medical Center
Boston, MA