if pandas is autoimmune...and why are tics always there...

[eljomom]

So if cunningham's camK shows that there is an autoimmune issue going on, why are my daughter's immune workups normal??(not sure how over-the-top thorough they are, but according to Dr. T, who ordered labs, they are "normal").

 

I also don't understand why, after the fever in June, and the tics went from 2 or 3 to over a dozen, have not lessened at all?? Not sick, likely no underlying infections---I truly believe this---did Augmentin for a month, thought maybe a little better???? (not sequencing the tics all in a row), until son got stomach bug last week. He's better, and her tics are getting more in number and frequency. We also switched to Zithromax last Thursday, and she has had even more tics in the past few days. My oldest came down with a bad respiratory infection a couple days ago too. But my pandas kid---not sick. Just really really ticcing. What's the point of antibiotics if she's reacting to viruses? Is zithromax making her worse? Should we have given Augmentin more time?? Why is there no cycle in the tics going away after any illness is gone...this has been months and months....

[momofgirls]

Eljomom, if I remember right your daughter's western blot was suspect for lyme. You probably don't want to hear this again but I feel it's worth considering. You are right to wonder...why no wane in tics if pandas is auto-immune and there is no underlying infection? It is my opinion that there my be an underlying lyme infection in your daughter that is driving the reactivity. I remember her result and quite a few of us thought it was worth seeing a lyme doctor. Lyme patients flare with illness and since her symptoms are tics then I would expect her to tics to flare with viruses as well. I really don't think you will see a lot of improvement untill the underlying infection is addressed. Have you read any of the threads on the herxeimer reaction? They may be of help. When lyme is treated patients often experience a temporary worsening of symptoms due to the die off of the bacteria. I don't believe this reaction is typically seen in kids with tics due to strep as the herxeimer reaction only occurs with certain types of bacteria like lyme. This is usually taken as indication that the medication is working. Sometimes it can take a few weeks or longer for things to settle down depending on the bacteria load but the right antibiotic combo needs to be used so to really beat down the bacteria otherwise treatment will just stall. Lyme is usually treated with a combination of abx so I am not sure that zyth alone would make the difference. I am sure you will find the answers for your daughter but I really think a good lyme doctor can help.

Good luck,

kim

[MMC]

Eljomom, we are in the same position with our ds12. We often wonder the same thing...why all the tics? He does have some OCD, but main issue is tics. I had this same stuff as a kid and it took several years for my tics to diminish. I don't know the explanation. I have read where the bad auto-antibodies are really sticky and hard to clear out of the brain. Ds had pheresis back in January and this helped until he got swine flu in Feb. And his tics do increase with colds and viruses, so this is symptomatic of PITAND as well.

 

Kim might be right, could be Lyme or another co-infection. We are still considering Lyme testing and know of a Lyme doc in NC (3 hrs away from us). Ds has had many tick bites over the years, but did not develop PANDAS until he got strep in March of 2009. So, it still does not make sense to me because he had absolutely no PANDAS symptoms until strep. Maybe strep is intracellular like is mentioned here a lot? He's been on Augmentin a couple of times, Pen VK and is currently on Zith, 250 per day...after 6 weeks of 500 per day. You would think any infection would be cleared by now. I find it very frustrating that the doctors can't pinpoint how to individually treat our children with PANDAS. We are not sure what to do next. I guess Lyme testing (and possible treatment) will not hurt anything but the bank account, b/c it's not going to be covered by insurance from what I understand. But I don't mind paying out of pocket if I knew it would help. I have not found a doctor yet that can assure me that treatment "xyz123" will help with his tics.

[sf_mom]

MMC: I just wanted to give you a little hope. Our son presented with mostly TICS very mild OCD after a series of vaccinations first week of June 2009, strep related illness June 24th, 2009 and sudden on-set within days. He was also exposed to another boy who had a full body rash and fever on the 29th who was over for a playdate. He had a triple whammy of annual vaccinations, strep throat and perhaps a virus. Prior to sudden on-set we had a cough/TIC that would come go for an entire year. We were initially told sinus infection and then told it was learned 'cough' and it would go away. We believe his immune system was faltering a good 1 1/2 years in advance of sudden on-set.

 

Like you we pursued PANDAS treatment for over a year. He had three hdIVIGs in Sept 2009, November 2009, January 2010. The first IVIG was very helpful and we did see full remission of TICS for a short period of time. After the 2nd and 3rd treatments the little OCD we had was gone but then he was trading tics for a very long time. By June 2010 his TICS were mild and he had only two mild infrequent tics of clearing throat and blowing on his hands. At that time we started a Lyme like protocol of Azithro/Omnicef and the clearing of the throat stopped within 30 days. At that point we were also having back to back days of no TICS at all. We pursued an LLMD at that time because our son had blood in his stool. Our pediatrician wanted to have him scoped for intestinal issues and we were not prepared to do that. We already knew our son's Igenex results were negative, he was positive for band 41 only and went to the previously scheduled appointment anyway to see if he could help with the blood in his stool.

 

We found out fairly quickly our son did have an intestinal parasite. The bleeding stopped with 48 hours of new antibiotic (we had blood in stool for 7 weeks prior). We eventually did provocation DNA testing for Lyme which came back positive and 98% accurate. We have since discovered our entire family has LD and all three of children have congenital LD (inclusive of co-infections). When we started the Lyme treatment with the addition of a cyst buster in August, all TICS and some new emerged that took 9 weeks for things to settle. He then was TIC free for some time. We saw a mild resurgence of a TIC per day for 9 days when we rotated antibiotics and changed protocol recently. We are confident we are getting at the source of the problem and the TICS will be entirely gone when protocol is rotated and bacterial load is down. AND, no antibiotics will be required to maintain his recovery... at least that is the hope.

 

Its been a long 16 months but he has no TICs and no OCD today.... I encourage you to keep looking for potential cause of infection. In our case it was a chronic infection of LD. Multiple antibiotics are required for treatment of Lyme due to the fact that one antibiotic attacks the outer cell wall and one attacks from the inner structure and a cyst buster is eventually needed. If a child is co-infected with a parasite an anti-parasitic drug is also required to treat.

 

Again, I encourage you to keep looking and most LLMDs are wonderful at checking all the potential causes... not just looking for Lyme.

 

-Wendy

Edited December 21, 2010 by SF Mom

[MMC]

Thanks Wendy. I will show this post to my wife when I get home today. We have been going back and forth about seeing an LLMD. I'm thinking this should be our next step. Thank you for all the detail you put into your post and this does give me hope.

[eljomom]

So this is why I start to wonder.....maybe it's just Tourettes??? Tourette's tics get worse with illness. Yet in our case, things got bad, but never got better. It does make me wonder....

....and I know I risk this being taken the wrong way, but putting this out there, just because I worry about it. Some people say (and a couple pandas docs say it too) that if you go to an LLMD, you WILL be treated for lyme, and you won't come back, because it's a loooong process. At the same time, maybe it's the same with the "pandas" docs---you go, get diagnosed as pandas, and if treatment works, great, but if not, maybe it really wasn't pandas??? I truly mean that in no harsh way--just my own uncertainty, even after seeing a top pandas doc. It's so "gray". Just like Lyme. All tests can be negative, and it's still Lyme. Maybe my daughter just has a really odd case of early-onset ocd, with tics appearing later, and the illness tipped the boat over and threw her into full on Tourette's. Just don't know:(

 

Eljomom, we are in the same position with our ds12. We often wonder the same thing...why all the tics? He does have some OCD, but main issue is tics. I had this same stuff as a kid and it took several years for my tics to diminish. I don't know the explanation. I have read where the bad auto-antibodies are really sticky and hard to clear out of the brain. Ds had pheresis back in January and this helped until he got swine flu in Feb. And his tics do increase with colds and viruses, so this is symptomatic of PITAND as well.

 

Kim might be right, could be Lyme or another co-infection. We are still considering Lyme testing and know of a Lyme doc in NC (3 hrs away from us). Ds has had many tick bites over the years, but did not develop PANDAS until he got strep in March of 2009. So, it still does not make sense to me because he had absolutely no PANDAS symptoms until strep. Maybe strep is intracellular like is mentioned here a lot? He's been on Augmentin a couple of times, Pen VK and is currently on Zith, 250 per day...after 6 weeks of 500 per day. You would think any infection would be cleared by now. I find it very frustrating that the doctors can't pinpoint how to individually treat our children with PANDAS. We are not sure what to do next. I guess Lyme testing (and possible treatment) will not hurt anything but the bank account, b/c it's not going to be covered by insurance from what I understand. But I don't mind paying out of pocket if I knew it would help. I have not found a doctor yet that can assure me that treatment "xyz123" will help with his tics.

[PacificMama]

Hi Eljomom,

 

No matter what type of doctor you go to, or what type of treatment you seek, you are still the one who is ultimately in control of decisions. I'm sure that just about everyone on this board has made left turns, right turns, and u-turns in their treatment plans. We are constantly assessing and learning.

 

I truly understand your concerns, but I just would like to say again about this perception of llmd's... that no matter what you are going to get some sort of one-size-fits-all diagnosis. It couldn't be further from the truth. It is not "lyme" that they treat -- but a whole host of numerous infectious pathogens. Borrelia (over 100 unique strains is U.S. alone), Bartonella (multiple strains), Babesia (parasite), Erlichia (multiple strains); Mycoplasmas (numerous strains); Rocky Mountain spotted fever; Viral infections (hhv6; Powassan; many others). I could go on... It is an extremely complex practice. Tick borne illness is the combination of 1) a unique immune system encountering 2) a unique tick and the host of diseases they are carrying at that time. This makes for a very individualized disease presentation for each person. Consequently, for LLMD's it is never as simple as saying "you have lyme". And of the reputable llmds that are most known, none of them would ever routinely diagnose a patient with one of these diseases if they did not feel it warranted.

 

It might seem "gray" on this board. But sincerely, these diseases have been being studied and reported in the medical literature for over a century. There is a big old world of tick borne disease research out there.

The testing is not always able to pick up the positives (depending on the labs), but there are certainly many levels of evaluation to determine if a diagnosis is warranted. And for anyone who starts treatment, they base their next steps on whether they are seeing results.

 

(Whether you decide to go to LLMD is obviously something you will decide. But as others have mentioned, your Igenex test indicated that there is borrelia exposure).

 

 

So this is why I start to wonder.....maybe it's just Tourettes??? Tourette's tics get worse with illness. Yet in our case, things got bad, but never got better. It does make me wonder....

....and I know I risk this being taken the wrong way, but putting this out there, just because I worry about it. Some people say (and a couple pandas docs say it too) that if you go to an LLMD, you WILL be treated for lyme, and you won't come back, because it's a loooong process. At the same time, maybe it's the same with the "pandas" docs---you go, get diagnosed as pandas, and if treatment works, great, but if not, maybe it really wasn't pandas??? I truly mean that in no harsh way--just my own uncertainty, even after seeing a top pandas doc. It's so "gray". Just like Lyme. All tests can be negative, and it's still Lyme. Maybe my daughter just has a really odd case of early-onset ocd, with tics appearing later, and the illness tipped the boat over and threw her into full on Tourette's. Just don't know:(

 

[sf_mom]

Ultimately you need to feel confident in whatever way you go. Both treatments: Lyme or PANDAS are not easy and the road to recovery is looooooonnnnnngg. Believe me, its easy to doubt treatment options especially when you experience a herx.... "worse before better". The last thing you need to be doing is doubting and then switching gears mid treatment from PANDAS/Lyme or Lyme/PANDAS.

 

If her symptoms are tolerable you have time to wait, figure it out a little more for yourself. Remember, a lot of us have been at this for a while. 16 months in total for our family and I still believe our older son will be on antibiotics for another year. So, its been nothing short of exhausting. You need to be emotionally prepared to handle the potential fall out one way or the other LYME/PANDAS.

 

Some of us here often try to share our experience or collective experience maybe to help get others to the finish line a little sooner or perhaps spend a little less money on Dr.'s, treatments and testing, etc. Anyway, you'll figure it out eventually and perhaps there are no short cuts.

[thomasmom]

Eljomom, we are in the same position with our ds12. We often wonder the same thing...why all the tics? He does have some OCD, but main issue is tics. I had this same stuff as a kid and it took several years for my tics to diminish. I don't know the explanation. I have read where the bad auto-antibodies are really sticky and hard to clear out of the brain. Ds had pheresis back in January and this helped until he got swine flu in Feb. And his tics do increase with colds and viruses, so this is symptomatic of PITAND as well.

 

Kim might be right, could be Lyme or another co-infection. We are still considering Lyme testing and know of a Lyme doc in NC (3 hrs away from us). Ds has had many tick bites over the years, but did not develop PANDAS until he got strep in March of 2009. So, it still does not make sense to me because he had absolutely no PANDAS symptoms until strep. Maybe strep is intracellular like is mentioned here a lot? He's been on Augmentin a couple of times, Pen VK and is currently on Zith, 250 per day...after 6 weeks of 500 per day. You would think any infection would be cleared by now. I find it very frustrating that the doctors can't pinpoint how to individually treat our children with PANDAS. We are not sure what to do next. I guess Lyme testing (and possible treatment) will not hurt anything but the bank account, b/c it's not going to be covered by insurance from what I understand. But I don't mind paying out of pocket if I knew it would help. I have not found a doctor yet that can assure me that treatment "xyz123" will help with his tics.

 

Hello MMC -

I read your posts because I think our situations are similar and you are just down the road. My ds9 has been battling PANDAS for almost 3 years. We have been on Azith and now Augmentin. He received 2 doses of IVIG with Dr. K in Chicago In May of 08 and Jan 09. Our last does was here in New Bern just 2 months ago. We have long several month periods of remission after each IVIG, but when he gets exposed to something the tics come back. The tics are bad right now, after our whole family was felled by a bad virus several weeks ago. I just don't know where to turn and don't know why his tics keep coming back. All of his immune lab work is normal. His once sky high strep titer is now falling almost ot the normal zone. I have read through all the symptoms of Lyme and there is nothing. He doesn't seem to have any yeast symptoms. He just tics ! If he had tourettes the IVIG wouldn't work right ? who knows.

 

I too I trying to figure out if he has osme underlying infection that we have not addressed that is providing the antibodies that make him tic. What is an LLMD ? a local lme doctor ? Did you say that you knew one in NC ? Who is it and where are they located ? How do you get to be a LLMD ?

 

Many thanks !

[KeithandElizabeth]

MMC:

 

I just wanted to add that, initially, our son only had PANDAS symptoms with strep. Every time we treated the strep, he would get better. Eventually, though, he did not improve once we treated the strep and we began IVIG. Again, initially, IVIG did wonders and then after 6 IVIG's, he regressed again. After a long journey, we found the lyme, bartonella, mycoplasma and babesia. This bacterias and viruses were preventing a complete cure for our son and also preventing him from dealing with the strep appropriately.

 

Our children never had a known Tick bite, but treating each infection has done wonders for both of our children. A good LLMD can help with all of these coinfecions and they are also experts in strep.

 

Elizabeth

[MMC]

thomasmom, I'll send you a PM regarding an LLMD in NC...(and the little I know about LLMD's)

 

Elizabeth, thank you for your input and I too wonder what infections might be with our son, prohibiting a full recovery. I guess the best thing at this point, is to pursue treatment by an LLMD. I'm just a bit nervous about it and feel like we have to start over.

[Joan Pandas Mom]

I think once the immune system is turned on in these kids, it takes a really, really long time to turn it off. Dr. B. compared exposure to putting wood on a fire you are trying to put out. i wonder if she is reacting to your son's stomach bug. Does she react to red dye (in Azithro)? Good luck with this, I hope it passed quickly.