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Saw a new dr...I need some input


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We saw an immunologist this week who lists PANDAS as one of his specialties. He seemed extremely smart and well versed in his field and my husband and I both liked him a lot. I was sick of being the PANDAS expert and wanted to see a dr who understands and treats this. I also wanted confirmation of the diagnosis. The dr. seemed very conservative and very cautious about handing out a PANDAS diagnosis, and said that many kids who come through his office, he feels do not turn out to have PANDAS at all. He did, though, conclude that my son has PANDAS, based on history and Cunningham results (with which he was very familiar).

 

Since we got the cunningham results back in september, ds has been on 2 months of azith (250mg/day) and then we switched to augmentin xr (2000mg/day). About 2 weeks ago ds started refusing to take the augmentin as he was developing a gag reflex when trying to swallow them (they are HUGE pills). So, knowing we were going to see this new dr. I said, "Ok, let's stop until we see what the new dr has to say". I was also a bit curious to see what would happen since I was doubting how much effect they were having anyway. Well, ds spiraled down the past week and is worse than we have every seen him in terms of irritability, irrationality, anger, etc., which mostly stems from anxiety. Those antibiotics were chosen by me, and okay'd by our pediatrician (based on my research here, reading what others have had success with).

 

The immunologist said that he does feel that ds has PANDAS and that he wants him on 500mg/day (one dose) of pen vk as a prophylactic, only designed to prevent strep. He said that this is a very successful dose with rheumatic fever patients and that there are NO strains of strep in the US that are pen resistant. The plan is to keep him on the pen vk for a year, and check ASO and Anti-DNase B titers often, especially during an exacerbation. DS has only had ASO titers checked once, 5 weeks after a positive strep infection, and they were <20. While he acknowledged that some kids don't show a rise in titers, he said that something like 96% of patients will show a titer response between ASO and Anti DNase B. At the end of the year we look at the trends and decide where to go from there and whether IVIG or PEX would be warranted.

 

We drew blood yesterday to check both titer levels and I started him on the pen vk. While I am happy to have a plan in place I am concerned about the pen vk. I am willing to give it a try, but it seems like a low dose, especially since it is once a day.

 

Thoughts? Has anyone had success on that dose of pen vk?

 

I swear, the more I learn the less I know. LOL

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Not quite sure what pen vk is compared to straight penicillin but my 9 y/o took penicillin 250 twice per day for 1 1/2 yrs for rheumatic fever at the time, with no luck for symptoms he was having, stopped for 6 months, tic'ing started, went back on same dosage etc for last 9 mths now ( pandas diagnosis) - still no progress. Things have just spiraled worse and worse. His ex- immuno doc ( also claiming to be Pandas go to guy here) said very confidently that penicillin WOULD work and it did NOT. Although he wouldn't even discuss ivig or any stronger antibiotics or dosage, so maybe its a good sign yours did????? Although, ours said the first visit if penicillin didn't work they would switch him up and that didn't happen, he just kept saying lets wait and see, wait and see. Well, I have learned fast and hard there is a serious time limit for " wait and see"

 

Finally just switched to augmentin 875 twice/day- raging improvement so far and only been one week.

 

I would keep him on the penicillin better than nothing, but def start looking for a diff doc to prescribe something better, I don't think I'm the only one that hasn't had luck with the penicillin and Pandas

Will keep my fingers crossed for ya!

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First...Penicillins should always be dosed TWICE a day...even prophylaxis. The half-life for penicillins is short, therefore you must be very careful about missing a dose.

 

Every website that I have read about penicillin prophylaxis has said dosing should be twice a day or 6 hours apart.

 

I would also be leary about going on a prophylaxis dose of penicillin if your child's symptoms are not FULLY gone. I get the idea of preventing strep, but where the problem comes in is when a strep infection is actually present...then pen v k is not very effective.

 

Yes, in a dish, strep has never shown to be resistant to penicillin, however in the body it is different. This article explains:

 

http://www.entrepreneur.com/tradejournals/.../169459644.html

 

Penicillin is very successful for RF. My uncle had it when he was 10. He was hospitilized for 6 months, and took penicillin prophlylaxis for 20+ years after.

 

We decided to put my daughter (50 lbs at the time) on pen vk 200 mg 2x/day as a prophylaxis in September. That decision was based on three things:

 

1) She had only one very minor PANDAS symptom, and we felt she would be shedding that because she had continually improved since her prednisone treatment. Therefore, we felt it was safe to conclude that she DID NOT have a current infection. In fact, she did stop that last behavior within a week of starting the pen vk.

 

2) My Uncle's success with penicillin...we are all alike geneticily so I was hoping that it would also be successful for my daughter.

 

3) We are only 4 hours east of Pittsburg, and there are strains of strep that are resistant to azithromycin in that area....that was her prophylaxis prior to the pen vk (100mg 1x/day).

 

I personally wanted to push for the most narrow spectrum antibiotic because I didn't want to end up with the longer term side effects on her intestinal flora. On the zith, we had some minor yeast isssues.

 

From September to January, I would say my daughter was fully returned to us. She tested very well academically in the school district's evaluation, and they saw NOTHING of her prior OCD behavior that they didn't do a behavior evaluation.

 

Around January, my kids all came down with bad coughs, and in February my three non-PANDAS kids were all postive for strep. My PANDAS daughter kept testing negative....but her PANDAS behaviors slowly began to come back. Based on behaviors alone, her pediatrician put her on 10 days of Omnicef 150mg 2x/day...we saw some improvements, but were still concerned.

 

When we took her to see Dr. Latimer, she told us that pen vk is just not good at getting to strep especially if it is in tonsils. We tried a week of amoxicillin 300mg 2x/day (again, I wanted to be cautious with antibiotics)...However, my daughter looked bad after a couple of days...purple under her eyes, and she seemed to be backsliding and we were losing the ground we had made with the Omnicef...She also began to itch...so I was relieved when Dr. L agreed to put her back on the Omnicef.

 

So right now, she is currently still on the same dose of Omnicef and starting her second week of prednisone....we are seeing A LOT of improvement. I am very hopeful that this time around we can manage it with the pred again....

 

BUT...I will never use pen vk again....I'm going to push to keep her on the Omnicef as a prophylaxis when the time comes to drop down from full strength...but I will not drop her down if she has not shown significant improvement, and is very close to fully back. I am even considering asking to keep her on the full strength for an entire year...to give her a much better chance of not contracting strep again and therefore maybe fully heal.

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I can only reiterate that penicillin did not work for Sammy Maloney, per the book, while the Augmentin XR, as you have already experienced, did.

 

Also, if the PANDAS behaviors have not significantly or entirely abated, why would one move to a prophylactic dose? It seems premature, at best.

 

Unfortunately, it seems like it might be second-opinion time. :huh:

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My daughter, then @60lbs was on proph. penvk, I think it was only 250mg/day- but it may have been 2x/day. She tested + for strep while on it, so we switched to zith. But, my personal opinion is that it doesn't work to treat PANDAS like rheumatic fever... its not just about preventing strep. There's something amiss with the immune system.

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There was study done that showed the Zith was more effective as a prop than penicillin. Also. penicillin does have a failure rate as someone said above with the link to the article. That article was written based on a study. It's just not one guy throwing that info around.

 

Now some kids do fine with amox and penicillin. I agree if PANDAS symptoms are not gone, I'd be very nervous switching to proph penicillin right now. My son experienced back to back excerbations. He wasn't fully recovered from #1 when #2 hit. It was worse, more symptoms, and a very scary dark time in our house.

 

Are you comfortable with the decision? Also, make sure no one else in the house has strep. Lower his risk of reinfection that way too.

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