Swallowing difficulty, dysphagia

[worriedmommy]

Hi there. A couple of weeks ago I posted that my dd (age 6) was having swallowing difficulites. She had these issues as a toddler, but after her tonsils were removed at age 4, symptoms dramatically reduced. It is only recently that these issues seem to have resurfaced, and the timing coincides with her sudden onset of multiple tics...which according to a couple of neurologists (and Dr. T) is likely PANDAS.

 

Anyway, dd had an endoscopy last week, and I was told today that she has Eosinophilic Esophagitis (EE), also referred to as Allergic Esophagitis. Does ANYONE have experience with this? It is a medical diagnosis from biopsies they took from her esophagis, so there's no question as to what it is. Apparently this is usually the result of a food allergy, but unfortunately blood & skin prick tests are often not effective at determining what the offending food is. Dd actually already had a blood test in Jan for egg, milk, wheat, gluten, nuts and soy...all results were negative. However, according to the GI this negative blood results does not rule anything out as EE is often caused by a delayed allergic response.

 

I'm having a hard time believing that this new dx is not somehow linked to PANDAS. In the past 12 months dd has had dx of asthma, dx of severe seasonal allergies, 2 peri-anal strep episodes, 1 case of strep throat, 2 cases of explained high fevers, presumed H1N1, 3 separate episodes of a strange itchy rash on knees and elbows that stays for approx 6 weeks, then peels and goes away, only to return 1 month later, sudden onset of multiple motor and vocal tics (went from 0 to 10000 tics per day, overnight) and now a dx of Eosinophilic Esophagitis! --There HAS to be a common thread holding most, if not all, of these items together. I simply cannot believe that my full term, healthy child developed this many separate issues in a 12 month period.

 

I'd love to hear from anyone out there who knows about this, or has experience with it. Thanks.

[peglem]

So, do they have any real evidence that it is allergy related, or did they decide that because they can't find another explanation?

I would think that if PANDAS can cause speech motor interference, it could certainly affect the muscle coordination involved in swallowing. Kind of like chorea of the swallowing function.

[worriedmommy]

So, do they have any real evidence that it is allergy related, or did they decide that because they can't find another explanation?

I would think that if PANDAS can cause speech motor interference, it could certainly affect the muscle coordination involved in swallowing. Kind of like chorea of the swallowing function.

 

What I was told is that EE is simply an inflammation of the esophagus caused by the presence of high levels of eosinophils. Eosinophils are a type of white blood cell that are not normally found in the esophagus. High levels of eosinophils often indicate an allergic response. So, it would seem that since these eosinophils were found in her esophagus that she has EE. I haven't found anything yet telling me that something other than an allergy can cause this...but, like I said, I feel there has to be some connection.

[Megs_Mom]

I don't have any info for you, but really appreciate your sharing this information. Our daughter also started with concern about swallowing, but we could not find a physical reason.

[kimballot]

My son does not have eosinophilic esophogitis, but he does have eosinophils in his intestines (found with endoscopy), where they should not be. The GI/Allergist that we worked with explained that he was likely reacting to food. She tested him with skin prick for every food and all was negative. We also did provocation/neutralization testing, (from a different doctor) which does not have strong evidence, but seems to be more sensitive for some kids, and he reacted to every food he was tested for, and we treat him using extract therapy (we use shots, but this is similar to the sublingual drops some use). Again - no articles or evidence to show you in the US - but it is rather well accepted in Europe from what I can tell.

 

We also got a rx. from the GI for cromolyn - which is something that is usually put in nebulizers for kids who have asthma. My son used to drink it with every meal. They stopped making cromolyn, but now make gastrocrom, and he has used that for his food allergies. He now only uses that when needed, but used to take it at every meal.

 

Regarding PANDAS - my son we find that keeping the allergy load low helps to decrease exacerbations. My son is now clearly in the PITAND range, and allergies are one trigger.

Edited April 20, 2010 by kimballot

[peglem]

Eosinophils are alsoassociated w/ parasites.

[kimballot]

interesting - WE've checked for that in the past but being that the eosiniphils are in his intestines.... perhaps we should look again... Thanks

[worriedmommy]

Dd did have a Western Lyme Blot (not Igenex), and tested positive for the band 41 on both IgG & IgM, as well as band 66 on the IgG. Not sure if either of these could be relevant, or if EE is found in Lyme patients.

[pathfinder]

My family Dr. did CBC on my ds 3 months ago when ds had mega swallowing problem.

It came back as nothing wrong except his eosinophil count was high. We did not do biopsy but did upper digestive x-ray and it came back as marked irritation on esophagus. This was all happening when he had a major rage episode.

[mar]

Don't know if this info will help. But I think it might be food related. DS had something that he was sensitive to and within an hour he kept making these choking sounds and said he was just choking on his spit. It happened twice, it seems like the spit gathers up I beleive he is not swallowing it and ends up choking on it. It only happens with a certain food. I stopped the food and never seen it again. And then the weird thing is his grandfather mentioned that when he started eating some type of chocolate again which he has not had for while that he couldn't swallow. this was within a couple of weeks of my sons episode. He said he just could'nt seem to swallow his spit and of course to start to panic which makes it worse. Anyway I told him to stop eating the chocolate and it went away within a day. I think that it might be food related.

 

Mar

[lyme_mom]

Hi there. A couple of weeks ago I posted that my dd (age 6) was having swallowing difficulites. She had these issues as a toddler, but after her tonsils were removed at age 4, symptoms dramatically reduced. It is only recently that these issues seem to have resurfaced, and the timing coincides with her sudden onset of multiple tics...which according to a couple of neurologists (and Dr. T) is likely PANDAS.

 

Anyway, dd had an endoscopy last week, and I was told today that she has Eosinophilic Esophagitis (EE), also referred to as Allergic Esophagitis. Does ANYONE have experience with this? It is a medical diagnosis from biopsies they took from her esophagis, so there's no question as to what it is. Apparently this is usually the result of a food allergy, but unfortunately blood & skin prick tests are often not effective at determining what the offending food is. Dd actually already had a blood test in Jan for egg, milk, wheat, gluten, nuts and soy...all results were negative. However, according to the GI this negative blood results does not rule anything out as EE is often caused by a delayed allergic response.

 

I'm having a hard time believing that this new dx is not somehow linked to PANDAS. In the past 12 months dd has had dx of asthma, dx of severe seasonal allergies, 2 peri-anal strep episodes, 1 case of strep throat, 2 cases of explained high fevers, presumed H1N1, 3 separate episodes of a strange itchy rash on knees and elbows that stays for approx 6 weeks, then peels and goes away, only to return 1 month later, sudden onset of multiple motor and vocal tics (went from 0 to 10000 tics per day, overnight) and now a dx of Eosinophilic Esophagitis! --There HAS to be a common thread holding most, if not all, of these items together. I simply cannot believe that my full term, healthy child developed this many separate issues in a 12 month period.

 

I'd love to hear from anyone out there who knows about this, or has experience with it. Thanks.

I would have your child evaluated by a lyme literate doctor, preferably an ilads-trained one (ilads.org). Unexplained fevers, rashes and the other symptoms you mention could be lyme and or bartonella or other tick-borne illnesses.Lyme can suppress the immune system enabling strept and other opportunistic infections to take hold in the body-so you can have both a strept problem AND a tick-borne illness. A child can be born with lyme too and they would get sick often if they have it according to Dr. Jones, the top lyme pediatrician in the world. Have you ever had lyme? I know a lot of people on this forum who discovered that their PANDAS child had lyme or co-infections of bartonella and babesia. It is really an epidemic. The diagnosis is clinical b/c blood testing is not reliable. Search on lyme and you will find a lot of threads about it on the forum. Lyme is treatable with antibiotics. I would not rely on a doctor to diagnosis or treat lyme who is not a lyme literate MD-they could not possibly know all they need to know to identify lyme and treat it. If lyme is involved the sooner you start treatment, the better the outcome.

[Suzan]

Has your dd been tested for celiac disease or gluten intolerance? Gluten by nature is inflammatory....

 

http://thefooddoc.blogspot.com/2007/07/cel...-be-linked.html

 

Hugs....

 

Susan

[worriedmommy]

Has your dd been tested for celiac disease or gluten intolerance? Gluten by nature is inflammatory....

 

http://thefooddoc.blogspot.com/2007/07/cel...-be-linked.html

 

Hugs....

 

Susan

 

Yes, she has been tested by blood for celiac disease, and it came back negative. Also, the GI doc said he saw no signs of celiac disease duing the endoscopy.

[worriedmommy]

I would have your child evaluated by a lyme literate doctor, preferably an ilads-trained one (ilads.org). Unexplained fevers, rashes and the other symptoms you mention could be lyme and or bartonella or other tick-borne illnesses.Lyme can suppress the immune system enabling strept and other opportunistic infections to take hold in the body-so you can have both a strept problem AND a tick-borne illness. A child can be born with lyme too and they would get sick often if they have it according to Dr. Jones, the top lyme pediatrician in the world. Have you ever had lyme? I know a lot of people on this forum who discovered that their PANDAS child had lyme or co-infections of bartonella and babesia. It is really an epidemic. The diagnosis is clinical b/c blood testing is not reliable. Search on lyme and you will find a lot of threads about it on the forum. Lyme is treatable with antibiotics. I would not rely on a doctor to diagnosis or treat lyme who is not a lyme literate MD-they could not possibly know all they need to know to identify lyme and treat it. If lyme is involved the sooner you start treatment, the better the outcome.

 

I have never had Lyme, but keep coming back to this as a possibility with dd. Two years ago she had a bite on her arm (not sure if it was a tic, insect or spider) that swelled, got warm, and in my opinion had a very faint bulls-eye look. I tried to take a pic of the bullseye, but it was so faint that the camera didn't pick it up. Of course by the time we saw the doctor it had faded a little more and I was told it was not from a tic. Anyway, over the course of the next 4 days her arm got painful, and the doc would up putting her on abx (10 days) which resolved the physical symptoms we saw. However, the more issues dd continues to have keep me coming back to lyme, and that bite.

 

I went on ilads.org and got the name of a lyme-literate MD in the state, so I guess that's the next step. Would you recommend getting the IGENEX test too?

Edited April 20, 2010 by worriedmommy

[ShaesMom]

Has your dd been tested for celiac disease or gluten intolerance? Gluten by nature is inflammatory....

 

http://thefooddoc.blogspot.com/2007/07/cel...-be-linked.html

 

Hugs....

 

Susan

 

Yes, she has been tested by blood for celiac disease, and it came back negative. Also, the GI doc said he saw no signs of celiac disease duing the endoscopy.

 

 

An "intolerance" to gluten will not show up on the blood work. Blood work and biopsies are only positive when there has already been damage to the villa. Enterolab does a stool test which tests for non celiac gluten intolerance. I had negative blood work, positive stool results and extremely positive results after removing gluten from my diet.