Pandas, Tics, Tourettes

[Buster]

No tics when not in an episode

 

Hi Myrose,

 

You ask a great question:

 

In pandas when you are not in an episode.....do the kids still tic all the time?

 

In my dd case, the tics have abated and she does not have the verbal tic or the odd trembling/jerky motions any more. I'd say her symptoms went away completely.

 

I think there has always been an underlying anxiety (and that social anxiety continues), but for us the nightmare started in February, became a crisis on March 11th, and finally resolved June 13th. We are now 3 months with no verbal tics, no OCD questions, no rituals, no suicidal threats, no odd measurements, ... it is an incredible relief.

 

So in at least our case, when not in an episode, no tics.

 

 

Regards,

 

Buster

[Chemar]

myrose

 

I would once again strongly suggest that you consult with physicians on this

 

where everyone on the board has experiences to share and is trying to be helpful, yet none of us have seen your child's full medical history and none of us can do more than give our opinions, which, as you yourself say, is only succeeding in confusing and even scaring you

 

Dr Murphy is in Tampa now, but I see you note that you cant get in. Perhaps her office would be able to refer you to a PANDAS specialist locally? Also do check with dr Franz as well in case she has someone to refer you to. It has been many years since we visited her but she did seem a very open minded person and certainly fully Integrative

[bmom]

In my sons case, the first episode we had lasted two months of continuous ticcing then dropped of tic by tic until no ticcing. We spent a good part of the year like that with the exception of one illness which ticcing lasted 6 weeks. Well, now episode 2. Since March when I had strep, he has had wax and wane with weeks of no ticcing then right back to ticcing. The last 3 weeks after a simple cold has brought continuous ticcing that has changed.

[Buster]

When you say sudden onset is where I get confused. I mean anyone that started with tics and such had a sudden onset didn't they?

 

Hi Myrose,

 

The actual criteria you want to look at is "Episodic course characterized by acute, severe onset and dramatic symptom exacerbations."

 

It isn't the "suddenness" but rather the severity and the episodic course. While almost all with OCD or tics have good and bad days, the pattern in PANDAS is quite different from the "waxing and waning" seen in chronic OCD or chronic tics. Instead the symptoms increase with sharp exacerbations rather than a gradual rise.

 

While these might be more severe PANDAS cases, Swedo and Snider's cases had +/- 15 pts of CY-BOCS score differences during an episode. Typical waxing/waning is more like 1-4 pts of CY-BOCS changes (i.e. no new symptoms but rather intensity of existing conditions).

 

Regards,

 

Buster

[Chemar]

It isn't the "suddenness" but rather the severity and the episodic course. While almost all with OCD or tics have good and bad days, the pattern in PANDAS is quite different from the "waxing and waning" seen in chronic OCD or chronic tics. Instead the symptoms increase with sharp exacerbations rather than a gradual rise.

 

waxing and waning in tourette associated OCD and tics most certainly is *not* always a gradual rise and fall. It can be very dramatic and very explosive at times with no clear trigger.

[myrose]

Cheri...I will try to talk again with Dr.Franz on my conerns. We did do a dry blood analysis with her a few months back and the results are still not back in. Not sure what that will exactly show but it was something she wanted to do so I did it.

 

 

Also if anyone has any comment on this I would appreciate it. My daughter last tested positive for strep this Past February (Valentine's Day)

She also had blood work again on May 20th of this year. The results as far as the titers and such were as follows:

 

Anti Dnase B ------- <80

Streptococcal (AB) - REF ----- <60

Anti Streptolysin O Titer ------ <25

 

Would the strep still have showed 3 months later in the blood work? Seems to me her results are low for strep. Unfortunately I do not have the blood results from the first time we tested which was in August/September of 07 to compare anything. But I will be calling for these as well tomorrow.

 

I will also try Dr. Murphy again but I am not going to get my hopes up high for that one.

 

Thanks again to everyone for all your help. Appears I am now to be on yet another mission..... And please Cheri understand that I always do follow up with the doctors and I come here not for a diagnosis but helpful insight on what might be my/our next step. It helps to here of similar situations and such, alothough I do fully understand that every child is different no matter how much they seem alike...make sense???? I tried anyhow...

But don't worry okay. I always make sure the little one gets what she needs by the professionals......it helps though going in with suggestions and not feeling like a fool when they all start talking.....I like to prepared and of course an advocate for her. This board and all the replies helps me get there.

[ad_ccl]

our sons titers were very elevated - over 2000 and took years to slowly come down - every few months they were down a couple hundred. He had a sudden and severe onset of symptoms. we have not checked them for a long time - we used to check every 4-6 months. From what I understand - usually the titers remain elevated for a few months after infection and then should go back to normal. I think they are highest 6 weeks after the infection. I cannot remember all the details.

[P_Mom]

My sons strep did NOT apperar in blood work done 3 months later...all titers were normal...and he is PANDAS.

[Buster]

waxing and waning in tourette associated OCD and tics most certainly is *not* always a gradual rise and fall. It can be very dramatic and very explosive at times with no clear trigger.

Hi Chemar,

 

Do you have a reference for any study with such CY-BOCS scores? The studies I have seen show the more gradual wax/wane with changes in CYBOCS in the +/- 3-4 pts rather than the 15 pt changes.

 

Regards,

 

Buster

[EAMom]

Re strep titers: The titer levels will depend on the person, strain of strep, and the lab. Some people make a lot of titer, some make very little titer. Some indviduals have titers that fall rapidly (so if you take titers 3 mo. after initial infection you may have "missed the boat"), other people have titers that fall very slowly over many months. Some people have a very low baseline so even when their titers rise, the values are still within "normal" limits. To further confuse the issue, different strains of strep produce different amounts of titer and you should not compare titers run at different labs.

 

You can have full blown PANDAS with low titers (eg. P.Mom's child, my child).

You can also have completely normal children with high titers (many "normal" kids that happen to have had strep).

 

IMO, one should look at the whole picture (throat cultures results, history of symptom exacerbation correlated with strep, response to antibiotics, history of illness....) and not get too wrapped up in the titer number game.

 

If your docs are denying PANDAS (or antibiotic trial) based soley on titers print out Buster's titer post for them to read (hopefully they will) http://www.latitudes.org/forums/index.php?...amp;#entry25312 . It is *very* well researched.

[P_Mom]

We still have mild ticcing here and my sons episode was July-Sept. (2007) He recovered fully from his first episode in summer 2005, however, after the second episode, we have never reached 100%, but, have come extremely close and are doing very well. (I am speaking of my younger son) This is common with PANDAS...each episode having the potential of becoming more severe and lasting longer to resolve and/or not resulting in comlete remission. Some kids do not have complete remission even after 1st episode. So, in my experience, yes, you can tic when not in episode, although things will not be nearly as severe as when in episode.

[P_Mom]

MyRose,

I was just looking over your posts on this topic and I wanted to tell you that, in my opinion, I think you are wise to be considering PANDAS again. I am not diagnosing your child (I feel like I need to say that all the time now!), however, when reading your posts again, your child's presentation and symptoms were very SUGGESTIVE of PANDAS to me.

 

Hope you get the answers you are seeking!

 

By the way...how long do they expect your daughter to be on Topomax? Does she have symptoms off it?

 

 

Kelly

[Caryn]

I have a question for all the folks treating their kids for PANDAS. What other natural treatments are you using (besides IVIG or antibiotics) to stop the reoccurring growth of strep bacteria that causes the onset of symptoms?

What research have you found that discusses the biological causes for group B strep overgrowth, affecting the brain? What are your opinions on dysbiosis and the permeability of the gut leading to proliferation of strep in the body?

Do you have any other treatment protocol for stopping future outbreaks other than drug therapies such as antibiotics and medicines like topamax? What other kinds of tests have you done to rule out other underlying conditions that can lead to continual outbreaks of bacterial, viral, or fungal attacks that can lower the immunity of the child with tics and OCD symptoms? In short, are you practicing any natural remedies, dietary or otherwise?

I would just like a little clarity on exactly what your treatment protocols are. There is so much confusion about the differences between PANDAS and other tic disorders/Tourette Syndrome due to the volume of PANDAS comments being posted here that deal primarily with symptomology and antibiotic and IVIG treatments specifically.

Thanks in advance for your input.

[myrose]

Kelly,

I can take her off from Topamax at any time. She does not have to be on the topamax because of her mildy abnormal EEG. It was suggested that Topamax would help prevent future seizures to come. They cannot figure out why she has a slightly abnormal EEG. The only conclusion was that it may be a sign of her to have seizures in the future. She has never had a seizure though. So in order to prevent future seizures (if any) and the fact that topamax would also control her tics and ocd etc. We decided to put her on it after the tics began to take away a quality of life for her. They got just TOO bad.

In other words she is not on topamax because of her EEG reading. We wouldn't have under normal circumstances treated the EEG reading. You don't have to.

We repeat the EEG every year now and am just waiting for the slight discharges to dissapear in which they believe they will. If they do not, then thats okay for it doesn't effect her in anyway anyone can see. I am not sure of what tics, ocd she would have when off from topamax and that is where my whole dilema comes in. I think being that we just started the topamax in May/June that I will leave things be now. At least I want to but with this pandas thing in my mind I also want to make sure she is being treated properly.

I called both her doctors today and I printed out Busters post as well per suggestion by EAMOM and am going to get it to our neurologist. If he feels that it changes his mind or if I can get someone to listen to me.....I will try the antibiotics. Thus we would have to go off from the topamax in order to see if the antibiotics were working.

She is on a very low dose so weaning down would only take 1 week, so by week 2 she would be free of topamax. I will then wait until a long holiday from school and pray for the best. I woud hate to put her through anymore at this point but again what else can I do. The topamax was fast acting in her case (just a few days) so I am prepared to keep it available in the advent we need to start again....For now I will just have to see what the doctors responses are.

She is doing SO WELL! She is so happy and so am I. I don't miss the ocd behaviors, the sensory issues, the constant urge to pee, and mostly the TICS!!! They wre by far the WORST for us above all we were dealing with. I wish I knew why exactly she does so well on topamax. Its puzzling to say the least. Especially at such a low dose for her body weight (I won't increase). The other med she was on was the clonidine.....she was tired and then of course the low blood pressure and nightmares. We have had no side effects what so ever with the low dose of topamax and I THANK GOD for this time right now everyday.

Its nice to breathe again and still continue my research on it all, but when convenient for me. It doesn't consume my life anymore is what I mean.

Have a nice day

[bmom]

Caryn,

I wanted to respond to your post as I have done many things to build my sons immune system. When this all started a year and a half ago, I tried many things talked about here. I started with the allergy- removed dust, put allergy proof bedding on, desenctized him through a natropath, air purifier in bedroom (the best and not cheap), allergy testing and even got rid of the family dog. I also started vitamins. This did not help his tics. They died down on their own after his illness. I spent the year reading and building his immune. We had hair testing to determine what minerals and vitamins he was low in. We supplemented these. Repeated the test to see if they were coming up. Yes, they were normal now. He is on dairy free and reduced gluten. He seemed to do ok with all of this- a little ticcing here and there with illness so perhaps all of these things helped some. By the way, he was on gluten free for awhile too. Well, he was not on antibiotic and I did not want to have to do this. He was doing ok with out it. We even had strep go through our house once and he got it. He started the frequent urination, but one round of antibiotics and no problems after. Well, then I got strep in March. He didn't even get it, but the exposure started him up. He started up with major ticcing and this time around he got the separation, fears and all that goes with it. We did several rounds of antibiotic and have still implemented vitamins, epsom salt baths, all I could think of. He has been ticcing and has not been able to watch tv or video games in all these months later as these make things even worse. He still has quite a few tics even though he is not watching tv. We do accupuncture and my sons symptoms get activated with even a simple cold. Just when things start dying down, here we go again. Yes, we still do no artificial food as well. Perhaps some of these things have helped overall, but the truth is when he is exposed to strep, everything goes bad and now we can not get it back on track. I am glad that you found the answer for your son by a simple diet approach. My approach has been extensive with food elimanation to boot. I think my sons enemy is strep. His immune system has trouble with it. We have to be proactive to prevent that as we have clearly seen and have paid the consequences by not. I can tell you that some of these things showed a small difference, but the only thing that clearly showed a reduction in symptoms, as they were getting way worse, was antibiotic. It was immediate and substantial. Believe me, if diet or anything else was the answer, we would not go this route for my son. It is a major intervention and expense. My son means everything to me and of course that is not a big deal, but we would not do it if not needed for him and his PANDAS symptoms.