Probable new PANDAS case

[Mike]

Hi everyone. I am new here and believe I have another PANDAS case with my 10.5 year old son, Jon. Jon has never had any tics his entire life. We also have no family history of OCD or TS. Last week he began a mild neck tic and within 2 days he has constant neck tics which include opening his mouth at the same time. At night sometimes he will exhale a bit while ticcing so that might qualify as audible tic. It's like something all of a sudden was attacking his body. It goes into overdrive during baseball in which he can tic up to 8 times a minute when playing. It's typical that he stops tics when focused (hitting or catching) so it doesn't effect his abilities, but it is very noticeable. We called out pediatrician who told us tics were normal and that we should set up an appt with a neurologist. After doing some reading I had a hunch it was more than that. I told my Dr. I wanted a strep test and sure enough Jon tested positive with strep anti-bodies in his blood as well. Both the quick swab test and blood test were positive. I thought that strange since he actually showed no other symptoms of having strep besides the sudden tics. He has had strep in the past a few times where he was treated immediately when the normal symptoms showed (fever, sore throat...). Anyway our doctor , since Jon had reactions to penecillin when younger, prescribed Cephalexin on Monday. He has been taking it for 2 days now and at first I thought there was improvement, but it seems to depend on how he is feeling and what is going on in his life. I guess I don't know how soon to expect a change. Isn't PANDAS in part a swelling of a part of the brain due to anti-bodies attacking good cells? I would think once the strep is gone that anti-bodies should diminish and the swelling go down. Anyone have similar experiences or advice? What bugs me is our doctor was just going to let it ride as if it was just normal while Jon's anti-bodies could have been attacking his system. Any help or advice greatly desired. Thanks!!

 

Mike

[Chemar]

Hello Mike and Welcome to Latitudes/ACN

 

so sorry to hear what your little guy and you have been through.

 

yes, it sure sounds like PANDAS

 

I am not knowledgable beyond the basics on PANDAS or PITANDS but we have a number of members here who have a lot of info and experience with PANDAS and so hopefully they will be stopping by soon to give their input

 

If you enter PANDAS in the search box top right of the page here, you should come up with a lot of threads filled with helpful stuff for you

 

 

Just re the antibiotic...from my understanding the antibiotic being most appreciated by PANDAS parents is azithromycin (zithromax)

rather than the penicillins and Keflex, Cephalexin etc...tho some do have success with those

 

but best if others explain as they know personally on this

 

all the best and we look forward to getting to know you and to try to offer support and information for you anytime

[Cum Passus]

Hi Mike,

 

Wanted to welcome you also... My son has TS, but I find it interesting how PANDAS has so much in common with TS. I wish you and your family well during this journey. I'm glad he can still play ball. My son does the same thing, holds back during the game.

 

Much luck,

C.P.

[Mike]

Hello Mike and Welcome to Latitudes/ACN

 

so sorry to hear what your little guy and you have been through.

 

yes, it sure sounds like PANDAS

 

I am not knowledgable beyond the basics on PANDAS or PITANDS but we have a number of members here who have a lot of info and experience with PANDAS and so hopefully they will be stopping by soon to give their input

 

If you enter PANDAS in the search box top right of the page here, you should come up with a lot of threads filled with helpful stuff for you

 

 

Just re the antibiotic...from my understanding the antibiotic being most appreciated by PANDAS parents is azithromycin (zithromax)

rather than the penicillins and Keflex, Cephalexin etc...tho some do have success with those

 

but best if others explain as they know personally on this

 

all the best and we look forward to getting to know you and to try to offer support and information for you anytime

 

Thanks. I would think whatever works to first get rid of the strep. I am not sure why azithromycin would be better, but would like to know if it somehow is better. From what I have read it's the anti-bodies doing the damage and I hear they can linger even when the strep is gone. We are still in the early stages of all of this so don't know what to expect and when to expect it. It came on so fast.

[ad_ccl]

Hi Mike and welcome,

 

My son has PANDAS - he is 8 now and was diagnosed after a sudden and severe onset of motor and vocal complex tics. He was 6 at the time. After three days on antibiotics the tics improved 80% - it is a long story - but ultimately every time we went off the antibiotics the tics came back - we eventually went on amoxycillin prophylactically - with good success - last summer we went off the antibiotics to see how he would do and it was terrible, he had a vocal tic by the second - we went back on amox and it did not help, then tried many different antibiotics separately and in combination and none worked - he improved a little but not much. We then tried azithromycin and within 24-48 hours tics were 90% gone - and by day 10 100% gone. We have stayed on it since August - prophylactically - on two occassions we increased the dose to a full dose when he was having tics from a viral illness - and they went away.

I think there is still so much not known - but my thoughts after seeing many specialists - neurologist/rheumatologist/infectious disease/immunologist is that the azith is also working as an immuno modulator - so helping modulate the immune system. You are right that it would seem once the infection is gone the antibodies are gone - but my sons Strep Titers remained elevated at around 700-1200 when normal is under 200 - some say under 60. Molecular mimicry is going on in the body and the antibodies are mistaking the basal ganglia for an infection and attacking it. It is very similar to Rheumatic Fever - same molecular mimicry. So I think that by modulating the response of the antibodies the azith is helping. We also did strep titers a few months ago - after being on azith for a few months and for some reason - it is the first time his titers have decreased in any significant way. They were in the 400s.

I am certainly not a doctor and can tell you all the specialists at this point don't really understand it but say just keep doing what we are doing. My son is soooo stable now - he is happy, healthy and thriving. Tics still come if there is a viral illness in the home, but they are very minor and no one would notice. Last August we did not think he would be able to be in a classroom and he had missed most of his soccer season as he was not well. Since September he has only missed a week of school from a bad cold - and has excelled during his hockey season - up at 6am for practices etc. The emotional lability is gone as well. I expect we will stay on the azith for a long time. There is an article on azith on the NIMH PANDAS website - you could always print it and take it to the doctors.

Ronna's son also has PANDAS and they have seen good success with azith as well.

 

Feel free to ask any questions. Knowing what I know now I would recommend any new PANDAS parent to advocate for a trial of azith. Keep advocating for your son - I begged for the antibiotics at the beginning- took in lots of literature.

 

We have done other things to help his immune system as well - did food testing and found he was allergic to milk/wheat/eggs/ - that was a shock. Also - changed to an LCD tv - as he would always tic more at the tv - he can play playstation on an LCD - but this x-mas tried someones gameboy and had eye tics almost immediately. We also had him on a vitamin regiment - remember this is an auto immune illness. The immune system is the key.

[Mike]

Hi Mike and welcome,

 

My son has PANDAS - he is 8 now and was diagnosed after a sudden and severe onset of motor and vocal complex tics. He was 6 at the time. After three days on antibiotics the tics improved 80% - it is a long story - but ultimately every time we went off the antibiotics the tics came back - we eventually went on amoxycillin prophylactically - with good success - last summer we went off the antibiotics to see how he would do and it was terrible, he had a vocal tic by the second - we went back on amox and it did not help, then tried many different antibiotics separately and in combination and none worked - he improved a little but not much. We then tried azithromycin and within 24-48 hours tics were 90% gone - and by day 10 100% gone. We have stayed on it since August - prophylactically - on two occassions we increased the dose to a full dose when he was having tics from a viral illness - and they went away.

I think there is still so much not known - but my thoughts after seeing many specialists - neurologist/rheumatologist/infectious disease/immunologist is that the azith is also working as an immuno modulator - so helping modulate the immune system. You are right that it would seem once the infection is gone the antibodies are gone - but my sons Strep Titers remained elevated at around 700-1200 when normal is under 200 - some say under 60. Molecular mimicry is going on in the body and the antibodies are mistaking the basal ganglia for an infection and attacking it. It is very similar to Rheumatic Fever - same molecular mimicry. So I think that by modulating the response of the antibodies the azith is helping. We also did strep titers a few months ago - after being on azith for a few months and for some reason - it is the first time his titers have decreased in any significant way. They were in the 400s.

I am certainly not a doctor and can tell you all the specialists at this point don't really understand it but say just keep doing what we are doing. My son is soooo stable now - he is happy, healthy and thriving. Tics still come if there is a viral illness in the home, but they are very minor and no one would notice. Last August we did not think he would be able to be in a classroom and he had missed most of his soccer season as he was not well. Since September he has only missed a week of school from a bad cold - and has excelled during his hockey season - up at 6am for practices etc. The emotional lability is gone as well. I expect we will stay on the azith for a long time. There is an article on azith on the NIMH PANDAS website - you could always print it and take it to the doctors.

Ronna's son also has PANDAS and they have seen good success with azith as well.

 

Feel free to ask any questions. Knowing what I know now I would recommend any new PANDAS parent to advocate for a trial of azith. Keep advocating for your son - I begged for the antibiotics at the beginning- took in lots of literature.

 

We have done other things to help his immune system as well - did food testing and found he was allergic to milk/wheat/eggs/ - that was a shock. Also - changed to an LCD tv - as he would always tic more at the tv - he can play playstation on an LCD - but this x-mas tried someones gameboy and had eye tics almost immediately. We also had him on a vitamin regiment - remember this is an auto immune illness. The immune system is the key.

 

 

Thank you so much for your story. I will ask for the azith. He is on day 5 now of Keflex and only a little change. I am just overly worried about permanent brain damage (creating chronic tics). I really don't if that's possible the first time around or if that only happens whith multiple attacks over time. I also wonder if it takes a little time for the brain to recover even if the attacks stop or if it is usually fairly quick to recover. My son has the frequent neck tics but no OCD.

 

Right now he also has a cold and is congested and I can tell the tics are a little worse. Is cold medicine ok or not? Did someone say sudafed can make tics worse or is everyone different? Do most kids outgrow PANDAS by a certain age? I still have so many questions. I hear also Magnesium is good? Multi VItamins?

[ad_ccl]

My biggest fear was permanent damage as well - and my son had SEVERE tics at the time of onset (no OCD ever). The good news is my son has been 100% tic free - so I know there is no permanent damage. Also - if your son currently has a cold - his immune system is really struggling - so you may see an increase in tics (PITANDS - Ped. Illness triggered auto-immune disorder assoc with strep) My son would have an increase with viral illness as well.

I know with some kids certain antibiotics do not work at all - Ronna found Keflex worked for her initially but amox did not ( I think anyway) This summer we tried Keflex and Cephasoros (sp?) and both did not work - but the azith was amazing.

Regarding cold medicine some kids react to the color in the medication. My son generally did not show any symptoms of illness - just tics. Only in the last few months does he really show "normal" symptoms, like a stuffy nose etc. I have been giving him cold medicine when he has symptoms and had no problem. Also - since you are on antibiotics- probiotics are important to take as well - I did not do this initially and we ended up with a yeast overgrowth. I highly recommend taking probiotics for your son - just give it at least 2 hours before or after the antibiotics - you can get them at a health food store.

 

I have talked a lot about the bucket theory (from Dorris Rapp)- the immune system being a bucket that can handle so many things individually, but sometimes when there is a combination the bucket overflows and you get tics - also with an infection - it is like a hole in the bucket and things overflow. Try to keep the bucket as empty as possible - for us that meant removing dairy. Also start with a good multivitamin. If you look at my early posts you will be able to see what we did early on.

 

Good Luck!

 

Just to add - when you reply to the post - if you click the button below the one you are clicking ( I think it says add reply but does not have "" marks. Then it will not repeat the previous post in quotes.

[Mike]

Ok thanks. What probiotics do you use? I take it there is a single bottle that will do the job or do I need to buy different probiotics? How long was your child ticcing before you saw an improvement?

[ad_ccl]

We use one called Pro-Bio SAP-50 that we get from our naturopath. We used to use on from the health food store. NDF Forte (I think). We have always used a single bottle that has several strains.

In terms of ticcing and improvement - when we had the original sudden onset - it was on day three we saw a dramatic improvement - it was like the tics went away as quickly as they had come. This summer it was probably on day 2-3 that we saw a significant improvement when we switched to the azith - although by the second day I felt I was noticing him getting better but did not want to get my hopes up - after day 3 we were sure he was getting much better and by the end of the run on the full dose he was symptom free - we ended up keeping him on a few extra days as school was starting up - so in total he was on a full dose for about 11 days instead of 5. Generally from what I understand if that antibiotic is working for the PANDAS kid there is a significant improvement within the first 3 days - although I think I have read other accounts of it taking a little longer. Our experience has been within the three days.

[Mike]

Thanks. I hope my Dr. will let us change to Azith. I probably will have to finish the Cephalexin first I would imagine. I need to be prepared to explain why Azith might be better. If there are anti-inflammatory properties, why not just use Motrin?

[ad_ccl]

I am not sure what anti inflamatory properties azith has - what I understand about it is it can act as an immuno modulator - so it dampens the immune systems response, so the antibodies are not attacking the brain and therefore there is no swelling.

 

You could do some research on azith and immuno modulators. I think there have been several studies using it for CF. Also - our immunologist said they are looking into it as a treatment for asthma as well.

[Chemar]

John

it is my understanding that azith works best because it is more effective in destroying the strep, and in addition has the immuno modulating effect that Alison noted

[ad_ccl]

Thanks Chemar - I was just coming back to edit to add that important piece. That by being on the azith it can kill the infection and staying on it prophylactically it helps ensure that your child does not get another strep infection, or any other bacterial infection, so reducing the load on the immune system.

[Dedee]

Mike,

I wanted to add that you need to have your son tested after he completes his antibiotics to see if the strept infection has cleared. This needs to be a culture not a rapid strept test. Also, PANDAS patients should have their cultures ran for 72 hours not just 48, as they can still come up positive after the second day. Your doctor will most likely look at you like you are crazy. Get used to it. If your son is a repeat offender in the strept throat department, you may consider the benefits of having his tonsils removed. My son showed a huge improvement after his tonsils and adnoids were removed, but he was having one infection after another. That may not be the case with your child.

 

If your son does have PANDAS, you should see some improvement in his tics when the strep starts to clear and the antibodies start to come down. My guess is that if you are not seeing an improvement then either he is not on the appropriate antibiotic and still has strept or perhaps his tics are caused by something else. I agree with the others that maybe you should try azith then see if that improves the tic. Then I would stop the antibiotic and repeat the culture to see if it is clear or of he is a carrier. When you stop the antibiotic his tics will most likely re-appear within 48 hrs. We have done this four times to prove to various doctors that there is a direct response of my sons tics and the antibiotics that he takes.

 

I would encourage you to act quickly and agressively for the sake of your child. My son developed OCD at age 5 after a strept infection. I didn't think it was possible for him to develop other illnesses. It was 6 years later after several strept infections in a row that his tic disorder began. I am very angry at the medical profession for not informing me of that possibility so that I could have made decisions to protect my son. From now on, I make the decisions for the treatment of my sons PANDAS, regardless of how far I have to travel to find the right doctors to help us. He is doing very well now. The only thing I would like to do now is to get his antiobiotic changed from Amoxil to Azith. Still working on that. All in good time.

 

You are at the right place to find help and support. Let us know how your son is doing. Good luck with your doctor.

 

Dedee

[Mike]

Thanks. From what I have read the rate that the anti-bodies calm down varies from child to child. We are only on day 5 of the Keflex with little improvement. The Dr. has agreed to re-test after the medication for strep. I will mention the longer time to evaluate. Thanks for that. My question is do symtoms usually vanish once antibodies are normal again (titer count goes down)? Or do conditions (tics) continue because the brain hasn't recovered yet? Or is it all still unknown? Wouldn't the symptoms of PANDAS be that the child is only acting up when strep is present (or high titers)?

 

Update- Dr. just let us change to Azith. We will start him today. Hoping it makes a difference. Found out his titer score was about 400 but that 100-200 is the benchmark. I am still learning about this so not sure why scales might be different. Maybe it depends on each kid.