Zithromax and tics recovery in PANDAS

[kkver]

I am opening a second thread for this . As most of you know my son's condition fro last few weeks. I started him on second round of antibiotics since yesterday as his sinus infection was getting bad and he was not able to sleep due to bloked nose. After one dose of zithromax ( 18 hours) i have seen 80% improvement in Tics . I will like to know in how many days Zithromax in PANDAS clears up the Tics. I am still thinking on PANDAS angle if they get better tomorow as Tics came last month right after strep throat and 5 days of zithromax.

Second after how many days one should get the blood test for ASO or AntiDNAse after taking antibiotic.

 

Last time the ASO test was done 11 days after strep infection and 6 days after finishing antibiotic. tics came after 9 day of infection and 2 days after finishing antibiotics. Now he's on antibiotic since yesterday 17th april when should i get the blood test done.

 

To tell the truth my Doctors are getting scared of me as i am chewing up there brian. In honest way i think not many of them know about this .

[faith]

kkver (and others)

re pandas connection

 

I can't give you any answers about how long later to test, but I am guessing any time, since if one has infection, then that's a good a time as any. BUT, I know I keep mentioning this to anyone looking to do titers testing, and hate to keep on, but I really think anyone dealing with this possibility must look for a specialist, not just a regular pediatrition. I think some docs possibly in major cities may know something about this, but not all. If you see that is the case, then you should get out the yellow pages and make some calls, namely an Infectious Disease doctor. I can't see anyone having to convince their doctor of something--you should be talking to someone who knows.

 

Please forgive me for this frank advice, but it is paining and frustrating enough, I know, and we need to make it less so. I agree, doctors should be aware of things like this, but if they are not, well, they need to refer you to someone who is.

 

Faith

[kkver]

I agree with you faith I tried to go 2 different nuero docs and my regualar pediatrition and only one had idea on this line and that too she did the aso test. I am trying to find some one good in Souhern california if some one has a reference and i am planning on making a trip to San Francisco next week if i get a appoitment there.

[Chemar]

if you test too soon after the zithromax, you may get a false negative

 

Ronna & Alison are best to answer this

 

yes, it is quite alarming how few doctors know of or understand about PANDAS

[kim]

This is a previous post by Ronna:

 

We recommend evaluation of all children who present with the sudden onset or exacerbation of obsessive–compulsive symptoms, using the approach summarized in Fig. 1. This diagnostic algorithm, which is based on the literature summarized earlier as well as our clinical judgement, begins with a history-taking, mental status examination and focused physical examination. Initial investigations in children with a history suggestive of streptococcal infection or a strong family history of rheumatic fever, or both, should include throat cultures and antistreptolysin O titres. These titres should be repeated after an interval of approximately 3–4 weeks, because a correlation of symptom severity with changes in antibody levels is far more informative than an isolated antistreptolysin O titre. We recommend antistreptolysin O titre, because the other antistreptococcal test reported in the PANDAS literature, namely, antideoxyribonuclease-B (antiDNAse , is expensive and not widely available in Canada.

 

I feel a bit like a broken record. Overall, a single ASO titer will not give you enough information to diagnose or rule out a PANDAS dx. The "trend" in the ASO titer is what is helpful...is the antibodies rising or declining. If your doctor does not know how to interpret the results then he/she needs to speak with someone knowledgeable. The NIMH is very willing to consult with doctors.

 

This is a good article...

 

http://www.cmaj.ca/cgi/content/full/165/10/1353

[ad_ccl]

Just a quick reply...

We also saw a change within a 24 hour period after starting azith - going from a once a second vocal tic to several minutes between them, (can't remember all the details now - whether it was 5 minutes or 15 - either way it was a HUGE improvement - by day 5 they were probably 95% gone - we stayed on for about 10 days as school was starting - and by then he was 100% tic free.

We have had great results with azith - tics do still come and go with viral illness - PITANDS - but they are not severe, mostly unnoticeable to everyone but me - and when they do drag on for a period of time due to illness we just up the dose of azith and things settle down again.

 

Regarding specialists - we have seen them all. I think the key is just having one doctor willing to listen and learn and run some tests within reason. Our doctor has been amazing - we initially were testing titers every 3 months or so - his titers remained very elevated - a year after the onset they were still around 700. We had them tested in the early summer and they were about 650 - we tested around November and they were at about 400 - the first significant drop we had seen for a long time. All the doctors we have seen admit they really don't understand this - the body is complex and there is still so much to learn. The use of azith as an immuno modulator has been around for CF and some testing for Asthma and I am sure other things - the specialists we have seen since starting azith and having such good results just tell us to keep on doing what we are doing - they are just happy that something is working so well for him.

 

I have read titers can remain elevated in a normal strep infection for up to 4 months - I think with all the molecular mimicry going on with PANDAS that the titers remain elevated as they continue to think they need to be elevated to deal with the mistaken target - the basal ganglia. Just how I put it together. There really should be no strep in my sons body in light of him having been on antibiotics for almost three years now. Yet his titers are still double what is considered normal - but going in the right direction. We will re-test probably in the summer. I am less concerned about the numbers at this point.

I would wait on the testing - I am not sure it will tell you anything - as it would be normal for them to remain elevated for a while - plus I am sure your child would happy to have one less needle.

 

Good Luck - I hope the azith continues to work for you - is your doctor ok with the continuing on a prophylactic dose?

[Mike]

Azith improved the tics on my son, but he has been off of any medication for almost 1 month. He still has the neck tic and it's mainly at night with sniffing tic. I think he had a yeast issue after his run of Azith and Keflex ,but I am pretty sure it is gone after pro-biotics. He now tested negative for strep so we really don't know what to do. I don't think our pediatrician will give us Azith when there is no strep anymore. I would imagine the strep has been gone for about 25 days (max) now. Last month was the first time he had tics of any kind so we are wondering how long it will take for them to go away and if we can do more to help besides vitamins/supplements. We are still holding off on the Tenex for now. I also want to know if too much (meaning long term) pro-biotics is a bad thing. If he should still take them when we think the yeast problem is gone? Since it waxes and wanes it's hard to tell if anything really works.

[Ronnas]

Thanks to Kim for posting the info about the titers...

 

Our situation is very similar to Alison's. My son has been on azithromycin for just over a year now prophylactically and my son has been very stable throughout the year. A few minor ups and downs that only I would notice. This is typically a very tough time of year for my him due to the extra stress of spring allergies and he is doing remarkably well.

 

As far as doctors we have "seen them all" also...neurologists (3), infectious diseses doctor, pediatric rheumatologist, and several pediatricians...the infectious diseases doctor agreed to prophylactic antibiotics as needed for my son at the time (about 3 years ago) and for 2 years we used clindamycin (keflex prior to this) when my tons symptoms increased with fairly ok results. About a year ago we started using azithromycin prophylactically as per the journal article from the NIMH and we have been so happy, he is so stable, no more of the dramatic ups and downs and he is very happy. When I decided I wanted to try the azithromycin prophylactically I went to my family doctor and showed her the information I had and she was very open to learning and working with me. Overall our doctor is just happy "something" is working for my son and she is pleased to see him doing so well...she's been with us for the long haul (she delivered my son!).

 

All the best to you and I hope you find a doctor who is willing to learn and work with you.

[kkver]

Ronnas

this is what i am trying to find about my kid ,if it is PANDAS / PITANDAS or tic issue. And noone is willing to Listen . He has improved alot since yesterday after the second round of antibiotics for other reason makes me believe there is some thing other then Tics. I have a 5 day course of zethromax and wil ltalk to doc on friday to make it 10 days . worst case i have a back to drive to TJ mexico border ( 80 miles) to get it for next 5 days .

[Mike]

What is the dosage for either Azith or Keflex for those who use it prophylactically? How much a day/week and how old is the child? For the long term usage, I heard someone say they follow up a few hours with a probiotic, but does it really matter when you take it in relation to the anti-biotic?

[Chemar]

hi Mike

 

those with experience will be able to answer you re antibiotic doseage but I can tell you that YES it makes a big difference as to what timing you allow between anti and probiotics

 

the antibiotics kill ALL microbes, good and bad and so they deplete the healthy helpful microbes that normally live in the GIT (hence the overgrowth of the fungal Candida(yeast) with prolonged use of antibitotics

 

if you give the probiotic too close to the antibiotic, the anti simply destroys the pro

 

there needs to be at least three hours after antibiotic before you give the probiotic

[ad_ccl]

The article from NIMH that Ronna is referring to recommends 500mg of azith once a week.

We do it every 5 days instead as at the beginning would see symptoms start to appear on day 4 and 5. There have now been many times I have forgotten to give the medicine and he has been fine - whereas before I could see the subtle tics start so knew it was time for the next dose.

He like Ronna's son seems to have a hard time this time of year - with probably the added stress of allergies - he has actually had symptoms more so than usual this last week and has been off school - we have all also been sick. A couple of days ago we went on a full dose of azith - also started allergy medicine and added some vitamins back into his routine (he was down to just a multi) - he now seems pretty close to tic free again and was back at school yesterday and playing soccer last night.

So I am assuming it was mostly the azith that calmed things down - so again showing its immunomodulating effects.

[Dedee]

I am so glad that you have gotten some great responses and information. If it had not been for this site I don't know what I would have done when I was in your shoes. My son has had PANDAS for a long time, but it was not a huge issue until it caused an explosive tic disorder literally overnight after a series of strept infections last winter. I was at a complete loss for what to do. His OCD was pretty much under control, but this was so new and frightening and all the doctors wanted to do was medicate him into Zombie land. His tics would always go away with antibiotics and then come back about 48 hours after the antibiotics were gone. I would convince the doctors to start them back then when we ran out the tics would start back. We have been to see Infectious Disease specialists and Neurologists, but neither want to keep him on long term antibiotics. I have literally collected (have a notebook) articles on PANDAS and NIMH studies on antibiotic therapy in PANDAS patients, and took this to my pediatrician. She is willing to give the antibiotics after reading this but still wants more confirmation from a specialist. So, after being very discouraged with the local ID and Neuro, we decided to go straight for the "Big Guns", so to speak. There are really only a few doctors nation wide who are experts in the field of PANDAS. The one we chose to see is Dr. Tanya Murphy at the Shands Clinic in Gainesville, Fl. We were on a waiting list for about 3 months or so, then we were able to get an appointment and will be taking our son in late May. She has a very good reputation, and there are others here who have seen her I think. My point being that sometimes you have to make drastic decisions regarding the care of your child and not assume that your doctor or even the local specialist is going to know how to treat this disease. It is very new to the medical community and even those who have heard of it or think they understand it, usually are only skimming the surface.

 

I do not mean to sound like a downer. On the contrary, my son is doing very well now. But truely it is mostly due to the steps that I have taken and not because of anything that the doctors have suggested. I have fought tooth and nail for everything that has made him better. We had his tonsils and adnoids removed and have had him off and on (mostly on) antibiotics since then. There are still some residual issues but I think once we have our May appointment we can resolve those. He is currently on Amoxicillin and I really want to switch him to Zithromax, but can not get anyone to agree to that yet. So we will see.

 

Please keep fighting for your son and looking for a doctor who will work with you. Keep us updated.

 

Dedee

[kkver]

I have seen huge ( best since the onset of tics and some ocd) impovement in my kid after 2 days of zithromax makes me beilve i need a doctor who can correctly dignose him. I will try to get tanya murpy too even if she's cross country. Another doctor i am trying to get is carol mathews in UCSF . I will try to go 1st nuerologist and will tell her about this as she was the one who suspected PANDAS and will definately increase this course of zithromax to 10 days.

[Dedee]

I am not sure where you are located, but you might also consider Dr. Susan Swedo at the NIMH in Bethesda, Maryland. She is a PANDAS expert and has numerous publications on PANDAS. I think there is someone else here who has either seen her or consulted her by phone and said she was awesome. Good Luck.

 

Dedee