Newbie story looking for some advice

[peglem]

Welcome. Has anyone thought that the spitting was a combination of things? That it may have started from the swelling, but then morphed into more..whether it be a combo of the swelling and OCD or a tic? When was the last scope? I am assuming the swelling is still there?

 

As for that rash, has anyone mentioned if it could be strep? I don't think strep on the skin would always raise titers, but it can affect PANDAS symptoms. Have your tried any creams on that rash?

 

What other meds, supplements is your child on? I ask since swelling may be a rare side effect of some things. For example, my optic nerves swell to the point that I will get symptoms similar to a brain tumor with higher dose of Vitamin A. So, I suggest also researching all known side effects for all supplements your child is being given.

 

Vicki,

 

Yes, more than one doctor weighed in on the spitting, especially after the scoping (Mar 09) showed the arytenoid swelling. The swelling went down after a month of prednisone and topical steroid. The consensus seemed to point to an allergic reaction, but that was never pinned down and now it is back 2 yrs later. So, unless it is an outdoor allergy that skipped one season (spitting started Fall 08), I don't see it being an allergy. My personal theory (not a doc) since nothing else has panned out, is that it could be spitting (and maybe swelling again) related to his recent exacerbation. In 08/09, we looked at and treated for GERD, allergies, inflammation, and a few other things. Only steroids help get rid of the spitting whech says the swelling went down. So, I am wondering if a PANDAS type exacerbation could trigger an immune response in his throat and cause the spitting symptoms. It is possible that the swelling was not related to the spitting, but it is also possible that the swelling and spitting are related. It makes me wonder if all the spitting reported with PANDAS is simply ocd or if there is more to it.

 

As far as the bicep rash, it is chicken skin looking rash and nothing has helped it. It is not red or swollen, just a light bumpy rash. I will make sure to point it out to Dr L. As far as thew supps and foods for that matter, we scrubbed every ingredient over several months and nothing came up. If it were food though, I would think he would have had constant spitting over the last two years and it was gone from Summer 2009 until just now. That is what makes me think of PANDAS. The spitting in the Fall of 08 was tied to an exacerbation and the spitting just restarted with an exacerbation now.

 

The question that I am really thinking hard about is can PANDAS cause an immune response in one particular are of the body like the throat which can then cause symptoms like spitting. This may seem rare, but I doubt there are very many PANDAS folsk that just happen to have a scoping during an exacerbation to see what may be swollen. The other interesting point is that our son had been on Colazal, anti-inflammatory, for years from his first scoping in 03 (LNH) and the 09 scoping showed much improvement in all areas, but the doctor was very surprised by the arytenoid swelling. It's a real puzzle. John L

John L

I think it is possible that tics can be triggered by a local irritant, like inflammation.

[jjl]

Welcome. Has anyone thought that the spitting was a combination of things? That it may have started from the swelling, but then morphed into more..whether it be a combo of the swelling and OCD or a tic? When was the last scope? I am assuming the swelling is still there?

 

As for that rash, has anyone mentioned if it could be strep? I don't think strep on the skin would always raise titers, but it can affect PANDAS symptoms. Have your tried any creams on that rash?

 

What other meds, supplements is your child on? I ask since swelling may be a rare side effect of some things. For example, my optic nerves swell to the point that I will get symptoms similar to a brain tumor with higher dose of Vitamin A. So, I suggest also researching all known side effects for all supplements your child is being given.

 

Vicki,

 

Yes, more than one doctor weighed in on the spitting, especially after the scoping (Mar 09) showed the arytenoid swelling. The swelling went down after a month of prednisone and topical steroid. The consensus seemed to point to an allergic reaction, but that was never pinned down and now it is back 2 yrs later. So, unless it is an outdoor allergy that skipped one season (spitting started Fall 08), I don't see it being an allergy. My personal theory (not a doc) since nothing else has panned out, is that it could be spitting (and maybe swelling again) related to his recent exacerbation. In 08/09, we looked at and treated for GERD, allergies, inflammation, and a few other things. Only steroids help get rid of the spitting whech says the swelling went down. So, I am wondering if a PANDAS type exacerbation could trigger an immune response in his throat and cause the spitting symptoms. It is possible that the swelling was not related to the spitting, but it is also possible that the swelling and spitting are related. It makes me wonder if all the spitting reported with PANDAS is simply ocd or if there is more to it.

 

As far as the bicep rash, it is chicken skin looking rash and nothing has helped it. It is not red or swollen, just a light bumpy rash. I will make sure to point it out to Dr L. As far as thew supps and foods for that matter, we scrubbed every ingredient over several months and nothing came up. If it were food though, I would think he would have had constant spitting over the last two years and it was gone from Summer 2009 until just now. That is what makes me think of PANDAS. The spitting in the Fall of 08 was tied to an exacerbation and the spitting just restarted with an exacerbation now.

 

The question that I am really thinking hard about is can PANDAS cause an immune response in one particular are of the body like the throat which can then cause symptoms like spitting. This may seem rare, but I doubt there are very many PANDAS folsk that just happen to have a scoping during an exacerbation to see what may be swollen. The other interesting point is that our son had been on Colazal, anti-inflammatory, for years from his first scoping in 03 (LNH) and the 09 scoping showed much improvement in all areas, but the doctor was very surprised by the arytenoid swelling. It's a real puzzle. John L

John L

I think it is possible that tics can be triggered by a local irritant, like inflammation.

 

Yes, I believe that can be possible, but I am stuck pondering about the "cause" of the inflammation in the throat, specifically the arytenoids or airway valves. Something caused the swelling before or during the exacerbation 2 yrs ago and at least the spitting is back now, 2 yrs later. I wonder if a PANDAS onset triggered by some virus can cause inflammation in a very localized area? Here's a crazy thought, what if a subset of the PANDAS kids actually do have inflammation in the throat and that is causing the spitting during an exacerbation? I know it appears true for our older son and I would not call it a tic or ocd, but rather his response to swelling in his throat. This is very unique because we just happen to get the scoping that showed marked inflammation. I hope to hear Dr L's opinion on this unique situation. Thank you for the response. John L

[thereishope]

I remember a few months ago someone else asking about throat problems and PANDAS. I'll think on this more today and see if I can remember. May not be related at all to what you're describing, but I'll see if I can find that post.

Edited October 29, 2010 by Vickie

[thereishope]

Found it. It was issues with the voice. The child I was thinking of was diagnosed with Spasmodic Dysphonia.

Edited October 29, 2010 by Vickie

[porkchop]

Which part of southern Maryland are you from? My child has possible PANDAS as well, and we live on the Eastern Shore.

[jjl]

Found it. It was issues with the voice. The child I was thinking of was diagnosed with Spasmodic Dysphonia.

 

Thanks for checking Vicki. I looked this up and it is not what our son has. It is odd though that he has symptoms that are typical to PANDAS such as frequent urination, ocd, and spitting, but the swelling of the arytenoids was a real surprise. The fact that the spitting has come back 2 years after it went away and the fact that it is present during the other symptoms of exacerbation, make it look a whole lot like PANDAS. Our primary concern is whether or not he may have swelling in his throat again. Like I said, it really makes me wonder if anyone else on here that sees spitting, may also have swelling in the throat, but just are not aware of it. I guess if abx eliminate the spitting, then it may not matter, but it also might be a clue to something. JJL