PANDAS update

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Hi everyone,

 

Just thought I would update on some new developments. We had decided to take our son off of the prophylactic antibiotics since school was over ( he has been on antibiotics for 2 years). I went in to see the doctor and in talking with him I kept going back to why his strep titers were still so elevated - 590 - after 2 years on antibiotics so in theory no exposure to strep? I wondered if in fact he was getting exposed but not having a full outbreak due to the antibitoics he was on. Or if somehow strep was lingering somewhere in his body. Ultimately we decided that before we take him off the antibiotics we would swab everyone in the family just to make sure no one was a carrier (no one is currently sick). We got the results and my youngest son tested positive - we were quite surprised! I am trying to understand if this makes him a carrier since he has absolutely no symptoms of any illness. The current plan is the 2 year old will go on a 10 day course of antibiotics (amoxicillin) and my PANDAS son will go on a 10 day course of full dose amoxicillin as well as a 10 day course of clindamycin - at the same time. This is in hopes of eradicating any lingering strep. Our plan - is to then stop all antibiotics. I am assuming we will re-swab the 2 year after the 10 day's on antibiotics.

 

If anyone can enlighten me about strep carriers etc I would be happy with any info. I have been doing some research but still am trying to figure out what it all means, and if the amoxicillin is going to be enough for him - I would think we would need to be more aggressive if he is a carrier, but I am not sure if the fact he is young makes a difference. Or if the doctor is wanting to be more cautious first in just using the amoxicillin and re-swabbing, I think if he swabs negative he would then not be a carrier, as carriers always swab positive? My ped. had left so I could not ask any questions - so I am sure I will have lots to ask next week.

 

Did I mention....I hate this!!!.....

[kim]

ad_ccl,

 

The only thing I can comment on here is, once your youngest son completes the antibiotic, don't be surprised if he swabs negative, only to be tested a couple of months later, and shows positive again. This was our experience with my youngest son, over and over.

 

I'm sure everyone, and especially all PANDAS people here, will be interested to hear your updates!

 

Kim

[evie]

The funny thing is, my PANDAS son keeps on swabbing negative - but the strep is definitely lurking somewhere - it's just not in his tonsils. Strep can be in many different places in the body. My pediatrician has cultured it out of the sinuses and even out of the rectum in my nephews case.

 

The trick for us is finding the right antibiotic to competely eradicate the strep - wherever it may be...

We've tried many different types and I'm still not sure which one works best, perhaps Augmentin.

 

Good luck add_cl. I completely support taking your son off of the medication. My son has been off for about six months already. His stomach was completely messed up from all of the antibiotics. We have our ups and downs, but we are pulling through.

[ad_ccl]

Thanks for the replies - I have been away for a few days. My son's tics pretty much disappeared within 2 1/2 days of being on the two antibiotics. He has had tics for a few weeks, and one's that were not as subtle as usual - the tics are now increasing again and I am sure it is due to yeast - his tongue is white - and he is on a lot of antibiotics - his stomach is upset etc. I am figuring things may have to get worse before they get better and by giving him these antibiotics now with hope they will eradicate any lingering strep - I will be happy when the 10 days is over ( as will he) I am giving him probiotics but it is hard to fit it all in with the 2 hour lag between antibiotics and probiotics, and the meds are 3 times a day and we were on holiday - so it was hard to keep track of time. Anyway - I do think there was something there as he improved so much in the first couple of days. I am hoping that my youngest just happened to have strep infection and is not a carrier. He continues to exhibit no symptoms. I will call the doctor tomorrow to ask the question about re-swabbing the youngest.

 

Evie - I forget how you know the strep is lingering - is it from high strep titers? Have you been off all antibitoics for 6 months? I will have to re-read your posts.

 

Thanks for the info Kim.

[ad_ccl]

Thought I would update. The tics subsided again with increased probiotics. He completed the 10 day course of antibiotics. My younger son re-swabbed after his 10 days and was negative. Unfortunately off the antibiotics my son started to have tics, on a regular basis, and although not full blown at all they were no longer the very subtle one's we had seen when he was sick with a viral illness or ate foods that he was sensitive to. So...we have decided to ride it out for a little longer (only since it is summer), and are trying some homeopathic things. We will take him and his brother back to get re-swabbed probably next week and also re-do the strep titer testing. If he is not back to where he was prior to going off the antibiotics (tic wise) or at least going in the right direction I think I will be very tempted to go back on the antibiotics again for the school year and try again next summer....

I was happy to read Mustang Carol's post on the Vit A, Vit E and Vit C. I think I will try and have him start on these. He already takes vitamin C. I think Marie would be interested to read about the beta-carotene, being such a carrot juicer. I hope she and her sons are well, we have not heard from her for a while. With hope no news is good news.

[ad_ccl]

Thought an update was in order. We are back on antibiotics, my son deteriorated over the last few weeks since being off the antibiotics to a point I was not comfortable anymore, two nights ago he was sqeuaking every second for over 4 hours. Through the day he had this vocal squeak every 3-5 seconds. It was loud and intrusive - and would not work well in a school environment. I had called the naturopath last week to see if there was anything else we could do and we did start some homeopathic drops - not sure if this was a healing crisis or not, but ultimately since being off the antibiotics he has not stopped having vocal tics through the day that in my mind were not very subtle. While on antibiotics he certainly had weeks of being tic free and when he did have tics with illness they were very subtle. We did start the vitamins mentioned in the article by Mustang Carol.

Yesterday we went back to the doctor, re-swabbed my oldest and youngest and did the ASO titers blood work on my oldest. Our plan is to re-test in 8 weeks - my doctor agreed that trying the vitamins listed in the article was fine and he wanted to do the re-test to see if we saw a difference in titers. He continues to be stumped - and was agreeable to going back on the antibiotics. He started the antibiotics yesterday afternoon and by evening he was 50%-70% improved, I only heard about 10 squeaks as he was going to bed, much different that 1 a second (no exaggeration here!) This morning there were a few squeaks but no eye squints at all ( a new tic that was emerging yesterday and the day before) My naturopath is away right now so we decided to stop the homeopathic drops and wait until she returns to see if we can just continue them while on antibiotics as well.

 

I will post the results of the swabs and the titers when we get them.

[kim]

ad ccl,

 

Sorry to hear removing the antibiotic wasn't successful, but good that the squeaks are diminishing again.

 

Will be watching for further updates.

 

Kim

[ad_ccl]

Just another update - for future and current PANDAS's moms. My son's squeaks got worse again, they seemed to be getting better the 2nd day of antibiotics, and slowly got better for a few days after that - as much as 45 seconds between sounds - from 1-2 seconds. Then they got worse again along with some behaviour things, lack of impulse control, being a little rude ( not like him) so we saw the doctor yesterday - he will continue on the full dose of amoxycllin until Saturday when the 10 days is up, then go prophylactically - but we also added a full dose of cefzil - one we have not tried to date ( although I remember when he was little it did not work for his ear infections) We tried it based on Ronna's posts about Keflex - I guess this is in the same family - but the doctor felt it would be better - and is only taken 2 times day. Re-reading Ronna's posts last night I saw Keflex eventually stopped working for her son. I am wondering if the same is happening for us and amoxycillin. He is definitely better today than he has been for the last week - but I will reserve judgment - usually we have found on the 2nd-3rd day we have seen a complete or almost complete recovery from the tics. Fingers crossed I will have some good news in the days to come.... His blood work from last week came back at 620 for ASO titers, up a little from the last test which was 590. 590 is the lowest he has been.

[ad_ccl]

Good News update....the cefzil has been amazing - squeaks got a little better on day one and two and day three a.m.still improving - but still frequent, every few minutes ( better than every second) , but at the 72 hour mark the change was incredible. Tics became moresubtle sounds ( squeaks ) and more infrequent - he had a cavity filled yesterday, we were at the dentist for a good 1/2 hour, I noticed one subtle tic the whole time - on the drive home he was silent ( the last fews days he has been silent only when reading) I assumed he was reading in the car, and asked how the book was, he said he was just looking out the window. This morning when he woke up I had a 15 minute conversation with him without a sound. Last week I could hear squeaks from him by the second the moment he woke up. Even during the night if he was waking up for a second and falling asleep he would squeak ( we were in a cabin all together last week) I have been out all day but my husband says he has been good, a few flurries here and there - but nothing like what we had been experiencing. He is now finished the 10 day amoxycillin full dose so will continue that prophylactically - then continue on cefzil full dose for the 10 days - I will call the doctor monday to see how long we will keep him on it. Fingers crossed he continues to get even better - although I am thrilled with where his is now. Hope I did not jinx it by writing about it!

 

So glad there is this forum - with hope our experience will help someone down the road just as Ronna has helped us so much by writing about her experience.

[Ronnas]

Hi Allison!

 

I just got home last night...two months at the lake with the 4 kids...I'm A BIT ready for school to start!

 

I am catching up on everyone and wanted to add our experience this summer...funny as you were stopping the prophylactic antibiotics we were starting again!

 

Based on the newest research for the NIMH (I think I posted this article last June) we started Kurt on 500 mg azithromycin once a week based on him having kind of an unsettled spring...for along time we treated him as necessary with Keflex and for a few years this worked well but over time he responded less favorably to it.

 

I showed the NIMH article to my doctor and she agreed we should go back to prophylactic antibiotics and I was pleasantly surprised to find that she was much more informed and supportive of a PANDAS dx that ever before in the past 5 years when it felt like she did alot of things to kind of "humor" me...anyways, she seemed to be much more on board now.

 

THE RESULTS: (knock on wood)...Kurt has had his best summer in fve years...no kidding! He has had really minimal tics (only a few days of minor tics during a viral illness we all got a few weeks ago), and most importantly to me his behavior has been really stable and predictable and very age appropriate. Interestingly at one point this summer I missed the dose one week and I really did notice a big difference in terms of his behavior (weepiness etc)...once I realized we had missed it and gave it to him he improved noticeably within two days.

 

The absolute best, best part of using the azithromycin is that it is once a week and therefore easy to do the probiotics, vitamins etc...though I have been a little lax on this...I'm going to work on this now that we are back from the lake...what a big difference from giving the antibiotics every day! He has not had any side effects that I can see.

 

I hope your son continues to do well...I will find the article from the NIMH and post it again on this thread for anyone who has not read it and are interested.

 

A link to the article I mentioned. Ronna

 

http://intramural.nimh.nih.gov/pdn/pub-9.pdf

 

Snider, Lisa A; Lougee, Lorraine; Slattery, Marcia; Grant, Paul; Swedo, Susan

Antibiotic Prophylaxis with Azithromycin or Penicillin for Childhood-Onset Neurospychiatric Disorders Biol Psychiatry 2005; 57: 788-792

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Hi Ronna and welcome back!

 

So glad Kurt is doing well - I had read the article you had posted - and had given it to my doctor. We had decided to try going off the antibiotics as a trial - hoping he was now stronger, older etc. Clearly it was a bad experiment!

 

When we went to the prophylactic dose of the amoxycxillin at the 10 day mark (just after my last post) and continued on the cefxil full dose as we were only on day 4 of that - he deteriorated before our eyes which was so shocking - we assumed the amoxycillin was doing nothing since 7 days on it full dose did nothing for him. Anyway, we added back in the full amoxycillin and he starting improving immediately. So now - it seems to be taking the two in combination to get him better. ( The two on their own seem to do nothing) We are on day 6 of both together again with a plan to do it for 14 days and see how he is doing. It is hard timing them all - and making sure we get lots of probioitics. I have asked my doctor about the azythrimycin a few times and he does not seem to like that drug - he said on full dose it is given 4 times a day - maybe I said zynthrimycin - my head is spinning. Did you go on a full dose first for a 10 day cycle then drop down to once a week? I will let him know about what you are doing when I go in and see him next week. At this point I feel the amoxycillin will not work prophylactically - at least that is my fear.

 

I will keep you posted. Thanks so much for your reply.

[Chemar]

good to see youRonna and so glad to hear Kurt is doing well

 

 

Allison, ZITHROMAX is the brand name for azithromycin so maybe you docotr will know it as that

It is one of the better antibiotics. My son was given the Z pack once for an abcess and just 5 tablets constituted the full course (one per day) It was very effective and didnt result in any of those icky side effects that antibiotics often bring

[Ronnas]

Hi there,

 

Chemar is right. Azithromycin/Zithromax is given once a day for 5 days if you go on it for strep etc. The half life for this antibiotic is very long...like 3-4 days...I'd have to look it up... which is why 5 days on azithromycin is the same as 10 days on another antibiotic. We actually fell into azithromycin for other reasons. Kurt was initially treated for a secondary staph infection due to a rash on his face from we think was a contact dermatitis from sunscreen last spring. After having kind of a topsy-turvy spring he did remarkably well when on the azithromycin for the staph and therefore we began to really consider it prophylactically. My doctor is concerned that over time he may not respond as well to the azithromycin as per our experience with keflex and clindamycin but so far azithromycin has been such a blessing and he has just been soooo stable these last few months...I guess time will tell...with experience I know just to take one day at a time!

 

We did do a 5 day course of azithromycin and then went to 500 mg once a week as per the NIMH research paper. I would say our experience closely mirrors the conclusions found in the paper.

 

Ronna

[Tessa]

Ronna,

 

Glad to hear that Kurt is doing well ! I, too, am ready for school-well mostly, anyway!

 

Very interesting about the Zithromax. You may recall that my younger son had chronic strep and eventually had his tonsills removed. Amoxicillin did nothing to clear the strep!!! Within 24 hours after finishing he'd have fever back and be vomitting violently. This would go on for weeks. All the docs in my practice (except my own pediatrician) kept saying that the amox was 100% effective in killing strep (we now know that is so not true) and kept retreating him . My own pediatrician trusted my observations and would put him on Keflex which would clear it until his next bout. My point is that anecdotal information precedes science by a number of years and it is so important to note these trends, so thank you for all of your wisdom.

 

Thank you for the journal reference, too.

 

Hope all is well....the baby must be getting big!!

 

Take care,

Tessa

[ad_ccl]

Just another update - we decided to switch to azithromycin - symptoms had hit a plateau with the amozycillin and cefxil - the vocal tic was atleast once a minute- better than once a second which it had been but not where we want him to be - when we have seen him free of all tics. We started Thursday night- we have already seen a great improvement. Tics are quieter, and further apart - much more subtle. We are at about 48 hours so with hope he will continue to improve.

 

I am really concerned about going off after the 5 day course on monday - since we have seen him decline so many times when we drop down the dose (although this is the first time on this drug ever), I am having trouble wrapping my head around the prophylactic dose being once a week at 500mg as per the study. How does the med stay in and be effective that long? 7 days is a long time. I have been searching and searching the net and finding nothing, I am not sure if I am looking at the wrong places our googling the wrong words. I know there are some super moms and dads here - who seem to be able to process this info so much better than me - any help would be appreciated.

 

Thanks in advance,

 

We will be seeing the infectious disease specialist again and a rheumatologist. I am trying to figure out how he could still have any infection after so many years of antibiotics. And could the antibitiotic be interacting with the antibodies - rather than an infection. And most of all why his strep titers remain elevated after 2 years.