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I'm confused, please help


little red
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Hi there,

My 3 year old daughter was diagnosed with PANDAS last fall. She was treated with Amoxicillin for 1 week and then Augmentin for an additional 6 weeks. We saw great improvement within the first week of treatment and it only got better from there. Now,(almost a year later)it appears the symptoms have returned. So, I called up our specialist, Dr K, and requested an appointment and antibiotics. He said that since the antibiotics had failed that something else would need to be tried. In my eyes, the antibiotics were a great success. But according to him, the mere fact that it returned, meant that they had failed and new/different types of treatment (not the use of any antibiotic) needs to be addressed.

 

So, although I still feel quite new to the whole disorder, I thought that many, many of you give your children antibiotics during their relapses. I would love to try a course of antibiotics and see if it helps again! It seems to be a very frequently discussed topic. So, hence my confusion. Any thoughts? Opinions? Thanks so much!

 

P.S. We do have an upcoming appointment scheduled.

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I'm with you - I would hardly call a year of remission a failure. Many here would cut off their right arm for that! I would hear what he has to say, but all of the Pandas doctors seem to have different opinions and protocols. If one doctor's thinking doesn't sit well with you, know that you would be well justified in seeking another opinion and/or following your instincts. They do their best based on their experiences, but none of them has the market cornered on "the" answer for your child.

 

I would see if your local doctor would do a rapid and cultured strep test, order ASO and Anti DNase B strep titers and perhaps prescribe a long course of augmentin. That would seem to be a reasonable first step in gathering additional puzzle pieces.

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I agree with you and LLM, especially since your child went into an exacerbation while off antibiotics.

 

BTW, do you know what triggered this current episode? Was there another strep infection (exposure in school or family members) or some other illness (viral) or vaccines? Was a throat culture done? Some PANDAS kids get strep without fever/sore throat, so if you have a positive culture that might be a way to get antibiotics from your regular pediatrician.

Edited by EAMom
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This surprises/confuses me too. Do you know what the trigger was in the first exacerbation? Have you taken your child to the ped's for a checkup including a strep test?

 

My child has had 3 strep triggered exacerbations that we were able to overcome and fully remit with antibiotics and time. He has been in remission now for 2 years. The fact that he had 3 strep triggered exacerbations in the past, IMO, does not mean my child is a failure in this. In fact, he has continued to improve and doesn't even react to non-strep triggers anymore. If my child has another exacerbation, I plan on doing full stregth antibiotics again and trying everything else first.

 

Get the abx somewhere. Ped, urgent care. Don't wait. Timing can be very important. Give short term Ibuprofen right now to limit inflammation.

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I have a right arm, and a left I'd like to offer for a year remission ;).

 

We are an abx only family. Our son comes back almost 100% with abx, it's the recurring infections that are a problem. He has no immune deficiencies either.

 

I'm with Vickie, I would go to your ped, get a throat culture and titres run to see if there is/was a recent infection. And get abx!!!

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  • 1 month later...

Can someone give me more information on the 'age factor'? I've heard about it but don't have many details. After a certain number of years does the brain just get used to working that way and it becomes chronic or is it more of an age thing? Has anyone ever heard of someone coming back from PANDAS after many years? I've had OCD for 19 years and just now found out about PANDAS, so the age factor scares me a bit. Strep titers are high, so I have a clear indicator of PANDAS, plus I think my Cunningham test came positive. I'm on 30 days of Augmentin XR now and am very willing to do PEX or IVIg if it will help.

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Can someone give me more information on the 'age factor'? I've heard about it but don't have many details. After a certain number of years does the brain just get used to working that way and it becomes chronic or is it more of an age thing? Has anyone ever heard of someone coming back from PANDAS after many years? I've had OCD for 19 years and just now found out about PANDAS, so the age factor scares me a bit. Strep titers are high, so I have a clear indicator of PANDAS, plus I think my Cunningham test came positive. I'm on 30 days of Augmentin XR now and am very willing to do PEX or IVIg if it will help.

 

KingJaffeJoffer,

It seems like your post might get lost in this thread. I think there are people who could help you with your questions, but they might not notice them while attached to this post. Maybe copy and paste your post and start a brand new one. I think that will help people to see it better!

Good Luck!

Little Red

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Sounds to me like the only "failure" was a LACK of antibiotics becuse that was when she was reinfected! I agree with others - high dose antibiotics for a while to try to get her back to remission. Then you may want to ask about prophyactic antibiotics when she is doing better to keep her that way. I think most kids on the forum are on low-dose antibiotics between exacerbations to try to reduce/prevent exacerbations.

Edited by kimballot
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I am going to go out on a limb here and report practically verbatim, some statements made by Dr. K when we had a phone consult last year. Dr. K stated that "statistically", he has an 89% success rate after just ONE round of IVig treatment. When I questioned him further, he stated that these patients did NOT have to return for further treaments. I specifically asked him if this was a CURE, rather than a temporary remission. He stated that it was a CURE. He stated that 12% of his patients needed to return for a 2nd round of IVig. He stated that the section of population that he drew his stats from was 350 of his own patients.

 

I have a background that allows me to understand research methods. I chose to seek treatment elsewhere. We have been very successful with antibiotics alone and, if medical best practices are observed, we choose the lowest level of intervention that is effective, until further evaluation warrants a change in treatment. This is not to say that we would not consider IVig or PEX in the future should the antibiotics lose their effectiveness. But at this time, my son is healthy and practically symptom free. We have this luxury because he is only 5. The choice would weigh more heavily upon us if he were older, as IVig apparently MAY be become less effective for PANDAS as kids get older.

 

In addition, I would not consider IVig or PEX prior to having a full run of tests for co-infections. There are certain antibiotics that treat certain infections and if the infections are present and this is unknown, then the current antibiotic may not be the best for treatment. This happened to us. Now he is on the "correct" antibiotics. He is being treated by Dr. Bouboulis in CT who immediatey ran further tests and is VERY effectively treating my son.

 

I believe that Dr. K is a caring physician who is working very hard to treat his patients. I just feel that attempting lower levels of intervention are warranted prior to going to IVig, and that full testing for co-infections is absolutely necessary. In addition, self reports from patients and their families appear to contradict the optimistic stats that were reported to me.

Edited by Beeskneesmommy
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In follow up to BeesKnees-- Two kids, now 12 and 14. We have been at this Ps "stuff" for 4 years now. It has eaten away our resources, energy, and the "normal" childhood my daughters might have had.

 

4 years ago Dr K suggested IVIG for my most severe d. He was right.

 

I was too scared at the time, and we did not do it. The 4 year history for both of my d's is too involved for this short reply, but you can read our history through old posts.

 

Yes, antibiotics full strength held very well for about a year and a half...I thought it was gone, then it DID come back, and much worse.

 

One d had IVIG in late May, and we saw a 180 turn around.

The other d will have either pex or IVIG this month. She has had a sudden onset episode now of anorexic/OCD and we are desperate.

 

Please realise that antibiotics may work, maybe entirely help--(especially if a child is young and in the first exacerbation it seems.) However, my advice would be don't let fear hold you back from helping, no matter how afraid you.

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I was too scared at the time, and we did not do it. The 4 year history for both of my d's is too involved for this short reply, but you can read our history through old posts.

 

Yes, antibiotics full strength held very well for about a year and a half...I thought it was gone, then it DID come back, and much worse.

 

One d had IVIG in late May, and we saw a 180 turn around.

The other d will have either pex or IVIG this month. She has had a sudden onset episode now of anorexic/OCD and we are desperate.

 

Please realise that antibiotics may work, maybe entirely help--(especially if a child is young and in the first exacerbation it seems.) However, my advice would be don't let fear hold you back from helping, no matter how afraid you.

 

 

T.mom -- i appreciate your experience and thoughts. i may have an impossible question but am curious of your thoughts. perhpas,l, if possible, in an objective way of general thougths on treatment and in personal retrospect way as if your dds had not had such an extreme exacerbation after being 'gone' -- or is it not even possible for you to imagine that?

 

so, do you think that if one is certain it is pans, ivig or pex is a necessity, it's just a question of when (sort of my impression of dr's k's thinking -- we are not a patient of his, i think that through e-mail coorespondence and personal conversation at ocdf conference last year?) or do you think if one is holding well without ivig or pex, they can trust the seeming clinical state of health? or is it all back to the black hole conundrum we all live in of not enough research and long term follow up?

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T. Mom, good point and please allow to me clarify further. We, too, have had our resources decreased significantly and feel "gyped" out of our kiddo's toddler years. I am extremely grateful that PEX and IVig are available if needed and I feel they are very valuable treatments. Dr. K also told me that he would not do IVig with my son because he was only 4 at the time and he wanted to wait to at least 5. During that period of time in the former part of this year, Dr. K was not skipping over abx quite so quickly and he made the statement "Let's give the abx a chance". In addition, his cross section of stats do not begin until age 5 and for research purposes, this is very understandable. He did tell me, however, that waiting even a few years would NOT change the severity of the condition and that there is no evidence of permanent damage from PANDAS once the IVig has provided a "cure". However, he did say that beyond ages 8-9 seems to make IVig begin to lose its effectiveness. I am able to recall this information quite well due to the careful notes that I took during our phone consult. He also said that there is a very small percentage of kids who get better on abx alone, if caught very early, however very rarely. It may be that his opinion has changed since February of 2011.

 

So, as I mentioned above, we have the luxury of time because my son just turned 5 in September. If he takes a down turn when he is titrated off of these abx in the Spring, we will surely consider PEX 1st & IVig as a second choice. We are chosing to give the long run of abx a chance, as they have been extremely effective. In addition, we have had further testing, which I cannot stress the importance of, and the current abx protocol may be effective for these co-infections that popped up, making it an effective treatment overall.

 

Dr. K is a great guy with his heart in the right place, but the stats he quotes are extremely, unusually optimistic compared to many, many other PANDAS specialists of note. there is no reason not to get a second opinion. We have had 3 PANDAS speciaists are comfortable where we are currently positioned, with Dr. Bouboulis in CT. and Dr. Elia at CHOP on our team as well.

 

I wish you all good things and success in defeating our mutual enemy, PANDAS.

 

Kath :)

Edited by Beeskneesmommy
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