If strep is not your child's trigger does antibiotics still work?

[ajcire]

I am sure this has been answered someplace. Sorry for the repetition.

 

I know cunningham had it on her site that sometimes it is triggered by a cold or other things and I know most of us have seen symptoms that were not just triggered by strep... but why would antibiotics work if it is not strep or bacteria triggered?

[thereishope]

For my son, his first PANDAS epsiode was triggered by strep. But it seemed like once that Pandora's box opened, it never fully closed. Since his first strep triggered PANDAS episode, he now has other triggers like colds, viruses, allergies. However, with my son, when a slight setback is triggerered by non-strep, it is very mild and goes away rather quickly w/o the need for an antibiotic.

 

When he has a strep induced PANDAS episode it is a dramatic change, extreme OCD, etc.

 

I'm trying to explain that the strep induced episodes are very different than the viral and allergy induced setbacks for my son.

 

Why do I check this forum when my kids are surrounding me? I can't concentrate yet I continue to try to type...

[peagreen]

I don't know the answer to your question, but I will be very interested to hear the replies since my son's behaviors are triggered by anything that acivates his immune system, not just Strep.

 

Paula

 

I am sure this has been answered someplace. Sorry for the repetition.

 

I know cunningham had it on her site that sometimes it is triggered by a cold or other things and I know most of us have seen symptoms that were not just triggered by strep... but why would antibiotics work if it is not strep or bacteria triggered?

[dabel]

I don't know the answer to your question, but I will be very interested to hear the replies since my son's behaviors are triggered by anything that acivates his immune system, not just Strep.

 

Paula

 

I am sure this has been answered someplace. Sorry for the repetition.

 

I know cunningham had it on her site that sometimes it is triggered by a cold or other things and I know most of us have seen symptoms that were not just triggered by strep... but why would antibiotics work if it is not strep or bacteria triggered?

 

My child's symptoms increase every time he gets sick! It does not matter if it is a cold or a raging staff infection. I do have to say that the intensity does vary though. His last big set back came after a pretty bad staph infection. This occured August 2008 and we are just recovering now!

[faith]

Since I was not looking for illness triggered symptoms, I only paid attention to the time of actual illness, i.e. the couple of days around his fever,virus, etc. Usually my son would be minimal in the tic dept., his vocals quiet. But obviously it would vamp up again sometime after, but by then I wasn't really paying attention to that. I mean, once I saw he was 'okay' a few days after being sick (not strep, he doesn't regularly get that that I know of), then I'd go back to the business of his diet, etc. So now I wonder what the time frame was, his next 'waxing' as we called it, would no doubt come, but I never connected the illness to be the trigger, just wondered 'why' and 'what did he eat that could be the culprit. I figured the weakening of his immune system might cause some problems, but wasn't thinking PANDAS style, so once he was better, I figured I was out of the woods. but I think the symptom increase could days/weeks/even a couple months,. Who knows what those antibodies are doing in there.

 

I've even now contacted his school health/attendance office and asked them to give me the dates he was absent to give me an idea of the exact date and what excuse I gave, and then recall when I had a waxing of symptoms, which I can recall pretty much from memory by now, and also by perusing my posts over on the TS board, I can see what I reported over there. .... I'm so tired of figuring this al out.

 

Just curious, for anyone who has been to the 'helpful' doctors, ... do you need everything all spelled out fo rthem, or is a brief outline/timeline of symptoms enough?

 

Faith

[EAMom]

Just curious, for anyone who has been to the 'helpful' doctors, ... do you need everything all spelled out fo rthem, or is a brief outline/timeline of symptoms enough?

 

Faith

 

Well...I would think you would want to present the information in a way that isn't so detailed that they are overwhelmed and their eyes glaze over. You could also have 2 versions...the brief outline/timeline and then a more detailed secondary version.

[peglem]

When we got the CamK results, I wasn't sure how to get that info to my daughter's pediatrician. Those studies are long and I didn't think he'd really have time to study them during an appointment. On the other hand, I felt he should be compensated for the time spent on what was really my daughter's case...So when I called his office for something else, I mentioned that I had some study results- they said to go ahead and mail them, or drop them off. I decided to mail them, thinking he's be more likely to get them in a timely matter. I included a copy of email discussions that I'd had with the lab- some were K Alvarez, some were Cunningham. I let him know that Dr. Cunningham would be happy to talk to him about it and gave her contact information. He was soooo excited about the info, especially after talking to Dr. Cunningham!

[EAMom]

For us antibiotics helped greatly in getting our dd back close to her "baseline" after her strep induced PANDAS episode in spring 08. We have kept her on 250mg/day of Azith. since then. I would say, the antibiotics help greatly...preventing a future full blown strep infection, getting rid of lingering low levels of (likely) intracellullar strep, and preventing other bacterial illnesses...but she has had exacerbations (mild when compared to the &&^%$ of spring 08 mind you) when exposed to a family members with strep and when she has contracted viruses (fifth's, H1N1), so antibiotics aren't 100% the answer, but they (esp. Azith) do help immensely.

 

BTW...Azith. is immune-modulating/anti-inflammatory (hence it's usefulness for cystic fibrosis) and our immunologist agrees that may be a very significant reason why we've found it so helpful. He said other abs aren't...although T.MOM heard something about Amoxcillin being anti-inflammatory (although nothing is published).

 

For us, Azith. was the ab that really helped. Amoxcillin, Cefuroxime, did not. Augmentin helped with mood initially (we had it for 10 days). I don't know if it would have been as effective as Azith. if we had used it long term at higher doses (like Saving Sammy).

 

Anyway, our dd continued to have exacerbations (viruses, strep exposure) despite the abs, and her "baseline" seemed to be rising upward with each exacerbation so we finally proceeded to IVIG 1.5 years after our diagnosis. I feel so far IVIG has been very helpful, but it is too early to give the final word on that! We do plan on continuing on 250mg/day Azith until the end of the school year, then we may consider dropping to a lower dose (cautiously). We will stay on abs until age 18 at the very minimum.

[Megs_Mom]

Just curious, for anyone who has been to the 'helpful' doctors, ... do you need everything all spelled out fo rthem, or is a brief outline/timeline of symptoms enough?

 

Faith

 

Well...I would think you would want to present the information in a way that isn't so detailed that they are overwhelmed and their eyes glaze over. You could also have 2 versions...the brief outline/timeline and then a more detailed secondary version.

 

I have 2 versions that seem to be well received - there is a written version that "tells the story" (I started with this) and then I have an excel spreadsheet that details illness (I got copies of all doctors records, recollections, etc), medication given, OCD/PANDAS symptoms. Then it summarizes key test results. I feel like the spreadsheet especially, really gets their attention, and made me realize how many illnesses she has had. You could also then really see the connection between ear infections and the sudden onset. It was startling to me, and I am really glad to have this record. If you want a copy as an example, I can remove her personal information & email it to you. Just PM me.

[dabel]

Since I was not looking for illness triggered symptoms, I only paid attention to the time of actual illness, i.e. the couple of days around his fever,virus, etc. Usually my son would be minimal in the tic dept., his vocals quiet. But obviously it would vamp up again sometime after, but by then I wasn't really paying attention to that. I mean, once I saw he was 'okay' a few days after being sick (not strep, he doesn't regularly get that that I know of), then I'd go back to the business of his diet, etc. So now I wonder what the time frame was, his next 'waxing' as we called it, would no doubt come, but I never connected the illness to be the trigger, just wondered 'why' and 'what did he eat that could be the culprit. I figured the weakening of his immune system might cause some problems, but wasn't thinking PANDAS style, so once he was better, I figured I was out of the woods. but I think the symptom increase could days/weeks/even a couple months,. Who knows what those antibodies are doing in there.

 

I've even now contacted his school health/attendance office and asked them to give me the dates he was absent to give me an idea of the exact date and what excuse I gave, and then recall when I had a waxing of symptoms, which I can recall pretty much from memory by now, and also by perusing my posts over on the TS board, I can see what I reported over there. .... I'm so tired of figuring this al out.

 

Just curious, for anyone who has been to the 'helpful' doctors, ... do you need everything all spelled out fo rthem, or is a brief outline/timeline of symptoms enough?

 

Faith

 

Faith,

 

We saw Dr.K a couple of weeks ago. For him an outline was sufficient. Although, he did say my son's case was so classic it was almost boring! Funny - no doctor in the past found him boring! As a matter of fact none of them could figure him out when I did spell everything out. Classic case missed for so long! Sad! We have to get the word out about this so other children and their families can get the answers and treatments they need in a timely fashion.

 

DeAnn

[EAMom]

Hey Fatih...you know that was true for us when my dd got a virus (fifth's, H1N1)...pandas symptoms didn't actually flare during the illness/fever, it was shortly afterwards, once she was "recovered".