New to PANDAS

[evie]

Hi Everyone,

 

My son (6 years old) was just diagnosed with PANDAS (high Anti-DNase Antibodies - 1:1920, and high Antistreptolysin O Antibodies - 591.6).

 

He had a sudden explosion of tic symptoms - rapid eye winking/blinking in one eye and playing with his fingers - touching the tip of each finger with his thumb one at a time with both hands simultaneously.

 

This came after about 6-8 weeks of extremely difficult behavior - temper tantrums, anger, moodiness and a really short fuse.

 

I was really losing my mind with his behavioral issues - a perfectly happy kid gone nuts - and then suddenly I noticed the tics and made this connection. I had heard about PANDAS due to research I had done last year for a nephew of mine that also has been diagnosed. I quickly had some bloodwork done on him and got the high antibodies results.

 

Well, here I am, scared and wondering which road to take.

 

My pediatrician has put him on Zithromax at first (for some reason he had found that that works on PANDAS cases) but it didn't work on my son. Now he is on day number 4 of Keflex and I am seeing no improvement in the tics or his mood. In fact, the tics seem to be worsening and now he is doing it with both of his eyes - tightly closing them, along with winking the one eye rapidly.

 

I came across this forum while researching PANDAS and have lightly skimmed some of the threads which touch on yeast/candida overgrowth and limitting sugar intake. My son is a HUGE junk food lover - the more sugar the better. Of course I try to limit it but he manages to get his hands on loads of junk from friends, neighbors..etc.

 

I really am not sure where to begin - should I continue with antibiotics until I find one that works (I am thinking of Clindomycin next) or some of you have mentioned going the in the homiopathic direction with natural supplements..etc.

 

Can someone please guide me?

Thanks!

Evie

[ad_ccl]

Hi Evie,

 

So sorry to hear what you are going through. I am just checking in this am but have no time to write much - my son's birthday party is this afternoon and I have lots of last minute things to do. Please read the thread of mine that Spring bumped up for you - I have been meaning to update it for weeks but needed a good half hour which I never seem to have. The other threads to look at are one's that Ronna has written, her posts really helped me a lot. You can search by person. Ultimately to make a long story short - there is hope! My son is doing very well - still has some slight tics that seem to all be triggered by illness or environment - smog alert days he has some, and recently he started a nose twitch but we finally realized it may be environmental allergies so gave him some allergy med. and the twitch decreased dramatically within 24-48 hours. The tics he has are not really a big deal (never thought I would say that), things I would only pick up on. Not like the explosion he had at the beginning. I know how horrifying it is. He has been 100% tic free as well. We have used Biaxin and amoxcyllin. Ultimately what I have learned is that PANDAS is an auto-immune disorder first and foremost so the immune system needs to be addressed. My son was a terrible eater like many others, he now takes supplements, and when off the supplements we see subtle increases in tics. We also did the food allergy testing and found he was allergic to milk and gluten, soy and eggs. Once these foods were removed he did incredible well. It took me 5 months to go this route as I really just hoped the antibiotics were the answer. During those 5 months he regularly had flare ups, since January things only got better and better - any increases are further and further apart and more minor in nature - I believe because his immune system is getting back to a healthy state. We see more behavioural stuff now - things that were probably there before with the flare ups but we did not see them as the tics were our focus.

Good Luck, I will check in at the end of the day.

Please ask any questions.

[Chemar]

Hi Evie

 

here is one of Ronna's threads on PANDAS....

 

http://www.latitudes.org/forums/index.php?showtopic=374

 

hope it helps

 

 

Dont worry.......now that you know what is the root of the tics....you can start the correct treatment.

 

[evie]

Thanks for your responses and support. I am trying to get in touch with my pediatrician to possibly change the antibiotics - day #6 on Keflex and no results!

 

I am still trying to swallow all that I have read. I can't imagine just completely changing my entire lifestyle and I can't even fathom just how my son will react if I tell him he can't have certain foods anymore.

 

I mean, keeping off of gluten, milk, eggs, sugar - what else is there to eat??

 

I guess my next approach is to have his allergies tested, although he has never shown ANY allergy symptoms to anything!

 

There is actually one other problem that he has - I wonder if it is related - it's been going on for about a year or so. He constantly dirties himself - bowel movement related.

 

I believe it's a constipation issue - he never really likes to go to the bathroom - always says it 'takes too long' and hates to actually wipe himself so he holds it in resulting in constipation. He complains that it hurts when he wipes himself. I've looked repeatedly and have never seen anything in the area.

 

A pediatrician that I spoke with (not my own, but someone who has lectured on PANDAS - I called her right away) asked me as one of her first questions if he has trouble wiping himself. I couldn't believe it - but she says that many times children have something called "rectal strept" and it's not picked up in a throat culture - (obviously) and that is where it is 'hiding', so to speak.

 

Well anyway, wondering if anyone has had the same experience.

 

BTW, I started him on acidophilus - I guess that can't hurt for now.

I am also furiosly trying to limit the sugar intake - my husband and I made a contest with him - for each day that he doesn't eat any junk food he is rewarded with a dollar. We'll see how long this lasts!

 

Once I see which foods don't agree with hime I will limit those as well. Starting with the sugar can't hurt now. But what about natural sugars found in juices...etc.?

Is that also problematic?

 

Thanks Everyone!

[ad_ccl]

Hi Evie,

 

I have no info on the constipation issue - something we have not had to deal with, nor do I recall reading about it in my search for PANDAS info - but so glad you have been made aware of the possibility.

I think you are probably on the right track looking at an alternate antibiotic - Ronna had to try a few I believe and in the end Keflex did work for her. There was a poster named Heather ( I think) who had a PANDAS kid who got worse and worse on the antibiotics - in the end I think she believed it was the artificial colouring and/or yeast - I think she ended up treating for yeast and had good results. You could do a search of her posts. Interestingly - my son is on prophylactic antibiotics - and a few months ago he complained of a sore throat and had enlarged lymph nodes - we decided to increase his antibiotics to be safe - we actually saw an increase in symptoms a few days into the course of antibiotics and they went away once we decreased the antibiotics which could have been one a two things that I can think of - the symptoms were due to a viral illness (PITANDS) or yeast was becoming a problem. It is such a guessing game.

I agree about the craziness of the food elimination stuff. If you read my thread you will know we decided to try just taking milk away at first - as that seemed to be the most common allergen of those here. We only removed drinking milk, ice-cream, cheese - we replaced with limited soy. We saw a difference but assumed it was the vitamins we had also started so allowed him to go back to milk - he deteriorated within days. So....we decided to do the Igg testing - there were so many unknowns we just wanted to see something in black and white. It confirmed the allergy to milk, gluten, soy, eggs. My son also never showed any allergies to any foods - no usual symptoms - stomach upset, hives, etc. He loved milk, bread etc. I have said many times on the forum that the easiest way to explain this is the bucket theory. For example - my kids bucket has always been near the top - due to the milk, wheat etc - but once the strep hit - the bucket went over and then even getting rid of the strep his immune system was so out of whack that it was still spilling and causing the tics. Once we removed the foods it lowered the level in his bucket. I have read that somewhere here a doctor saying that some people can tolerate milk except during ragweed season, meaning there body can handle some allegens but not too many at once. Hope you are getting my simplistic explanation. I think the immune system is very complicated and there are so many possible causes for the tics. My son had a chronic cough from ages 3 to 6 - I was told it was habitual, may be an environmental allergy, may be a transient tic - in the end it was only once we removed the milk did the cough go away ( no one suggested a food could cause the cough) - even with the PANDAS outbreak when the tics decreased after the first 10 days on antibiotics - the cough remained and we just assumed that was a part of him. Now, when he has increases it symptoms it is never the cough. The cough has been gone for many months now. I would assume it would return if we brought back milk to his diet.

Regarding how your son will deal with it - my son also has had rewards for not watching tv etc - 2$ a day - the vitamins he did not mind taking but every once and a while decides he does not want them anymore, so we let him stop - within a few days to a week we usually start seeing subtle tics come back and often it is him who asks to start taking them again. With the food we saw a huge difference with 3-5 days - so it was easy for my son to see the correlation. Our kids are around the same age, so with hope your son will decide he likes how he feels better once off the food. We worked hard at finding other treats that he could have.

I know it is overwhelming, the best case scenario is you find a different antibiotic that clears up all the tics and behaviours and you move on thankful for the episode being short lived. The worst case scenerio is really not all that bad - you have found a great forum with a wealth of info - and as I have said we have had many silver linings to this horrible cloud of PANDAS. My whole family eats better, we spend more time together ( less tv) my son has come leaps and bounds academically - he says his brain works better now - I think the food issues have contributed over the years to what I always assumed was 'boy behaviour' His focus improved once off the gluten.

The good news with the food issues is that it seems that it is not life long, once going off the food people do have success reintroducing foods on a rotating basis. We have actually started allowed hot dog and hamburger buns about once a week this summer - and there have been no ill effects from it.

 

Sorry to ramble, hope something in there is helpful to you.

 

PS - From all I have read and my experience at first the symptoms of PANDAS should go away around day three of antibiotics. Ultimately with us that was the case but each time we went off the antibiotics the symptoms spiked again within a few days to a week. We then remained on Biaxin for many months at full dose, which I think then caused yeast issues etc - and then the more chronic symptoms that went up and down constantly - since January when we reduced the dose of antibiotics, added supplements and removed the foods things have been going well - not perfect but so much better - and I no longer have concerns that any permanent damage was done to his basal ganglia - as I have seem him completely tic free. That was really my biggest fear.

Acidphillus is a great start - I wish I had started probiotics early on - to be honest it all seemed too 'alternative" to me - boy have I come a long way!

 

Good Luck and keep us posted!

[susanna]

Welcome Evie

 

Know that there is hope.

 

My son also had a sudden onset of tics over a year ago at just over six years of age. Antibiotics worked for us in reducing the tics, but it did not completely eliminate them. Tried Duracef first...son had a reaction...good old Augmentin ended up doing the trick. We always knew when strep was lurking because the tics would reappear/increase with no additional symptoms (no sore throat, no fever, etc but we would get a positive throat culture)...antibiotics (Augmentin) worked each time. Behavioral and "anger management" issues became (are) a larger problem than the tics. What made a significant difference for us was getting him tested for food sensitivities, eliminating those items he tested sensitive to, and eliminating artificial colors, flavors and preservatives. We found that the foods he craved the most are those he is sensitive to, with wheat being a huge culprit for him. We got him to "buy into" the food elimination by setting an ending date which happened to coincide with his birthday....we strictly followed the diet for over 90 days. It was amazing how well he followed his new diet....he would go to the supermarket with me and read food lables....he would go to his grandmothers and read labels there as well....he knew what he could and couldn't have. He was amazing! Luckily I have a Whole Foods and a Trader Joes in my neighborhood and was able to find healthy alternatives for some of his favorites. I did also talk to his teacher about what was going on and provided appropriate snacks for him for her to keep on hand so he wouldn't feel left out if the teacher gave out snacks. There was an incident toward the end of that 90+ day period where we did let him "cheat" at a brunch...his behavior changed right before our eyes....it was amazing how "good" food (milk, eggs, pancakes with syrup) made such a difference....it wasn't that he was cheating on cookies and candy....and made a believer out of my husband who up until that time thought I might have been "losing it" for thinking that good-for you foods like whole wheat had anything to do with what was going on with our son.

 

After his birthday we became a little looser with the diet because I had promised him and he wouldn't let me forget that promise...the problem is that allowing him to "cheat" every now and then became more and more frequent and these days cheating is the rule rather than the exception since I decided to pick my battles. I'm trying to get him back on track, however. The tics aren't really an issue...we've only seen minor facial tics in the spring which I believe were related to his seasonal allergies, and minor tics reoccur with illness. The problem again these days is his behavior. Also, he doesn't look as good as he did when he was eating "better" It's also unbelievable to see him crave bread....it's like an addict looking for his next fix. I'm slowly trying to ease back into the diet....wheat is the first major thing I'm trying to get him to give up...we'll work on the dairy, eggs, etc later. Unfortunatley we never found a good wheat free, yeast free bread substitute that he liked. All this time, however, I have tried my best to stay away from the artificial "junk" ...that is another huge trigger for him. You say your son craves sugar...that could indicate yeast...it's definitely worth looking into. Food is an issue for so many here.

 

We also did work with a pediatrician who had recently gotten into homeopathy...we did treat homeopathically and she more importantly helped me navigate the numerous tests I learned about on this site. Having found a traditional doc who is open to alternative treatments has been a blessing to me. I'm supposed to be supplementing as well, but he fights me on most of the supplements....I am able to get in a good multi-vitamin into him, but that's about it.

 

I find the soiling himself issue you brought up interesting. My son also has a variation of this issue. Although he doesn't hold it in and get constipated, he ALWAYS has issues with getting his undewear soiled and I was still wiping for him until recently...he has finally undertaken that job, but he hasn't quite mastered it. It amazes me that this could be related to the PANDAS/tic issue...I guess I need to look into this further.

 

OK, I think I rambled enough with my experience. Bottom line is know that there is hope. Having found this site is a good first step...it was for me. Knowing that it's PANDAS is half the battle. Read through the postings here.....Ronna especially has firsthand knowledge of dealing with PANDAS. Claire has some good posts on testing and some informal surveys of what have worked for parents here.

Some of this is trial and error....as you've probably already figured out, what works for one child may not work for another...they each have their own unique set of issues. If you can find a doctor to work with you, get your child tested for food sensitivities....the thought of a food elimimation diet to determine the triggers was ovewhleming for me. Yeast would also be something to test for right away given his sugar craving and the necessity of the antibiotics. And don't hesitate to ask questions. Lots of great people here willing to share.

[evie]

Thanks for your supportive and empathetic responses.

 

It's great to know that there are others out there that have been through this and I guess at some point 'this too shall pass.. .’

 

I ended up switching my son to over to Clindamycin being that after 6.5 days on Keflex I saw no improvement - he got his first dose yesterday afternoon. Ugh! It smells terrible. In fact, the pharmacist told me that as he was mixing the medication he was thinking to himself how on earth the mother will get this down her child's throat!

 

Well of course my son threw a fit and my husband and I had to literally hold him down and shove it in. For whatever reason (maybe it's not as bad as it smells) the following three doses he took pretty well. Maybe it's the quarter we are giving him each time he takes it nicely that sweetens the deal.

 

In any case, I am frantically trying to observe if there is any improvement at all. Unfortunately I don't see any as of yet as far as the twitches go. Interestingly, the only thing I do notice is an improvement in his general mood. He seems happier and calmer.

 

This afternoon, for example, he wanted to go swimming in a neighbor's pool. It was too late - too close to bedtime to start with the whole swimming gear thing. When I told him 'No' he took it so well - I couldn't believe it. I was waiting for a major temper tantrum, which is how he has been reacting to EVERYTHING lately, but all he did was shrug.

 

Maybe it's the decrease in sugar - which we began three days ago. Or maybe it is the antibiotics. Either way, I'm holding my breath!

 

I'm still really hoping that the antibiotics will do the trick, which I know has been everybody’s first reaction. It has only been about 3-4 weeks since PANDAS has entered our lives and I guess I'm still clinging to the notion that it might go away as quickly as it came. I am finding it extremely difficult to accept the fact that we may have to go in the food elimination direction. I'm so nervous about what on earth I will give him to eat!

 

I guess my next step, if the Clindamycin doesn't work, is to go to an allergist and have him tested for food sensitivities. I guess I will also steer towards vitamins and supplements - possibly homeopathic remedies...etc.

 

Has anyone ever heard of 'Pleo-Not'? It’s supposed to be some sort of very advanced homeopathic vitamin that has helped many people. It's been used by a Dr. Rau (and some others) who has some sort of clinic in Switzerland. Someone mentioned them to me as an idea. It has helped their 2 year old daughter (they actually went all the way to Switzerland). She was suffering from some sort of terrible strep infection - in the blood. I don't really know all of the details about her illness, only that she was so sick she almost died. Her pediatrician at Mt. Sinai (NYC) basically gave up on her. Once they went to the clinic and started on these products, along with certain food elimination as well, she was cured within 5 days and her blood count was back to normal.

 

I was intrigued because when I googled the name of the vitamin, one of the sites that I hit does actually say that it is very good at fighting strep and staph..etc.

 

Maybe someone out there has heard of it...? I spoke with a doctor’s office in NY which uses these products and they will get back to me as far as if they think it will help my son. They said that they use it on ADHD kids and it does help.

 

One other thing. I just read in another thread about chlorine making tics worse. My son was never much of a swimmer - always hated the water splashing in his eyes..etc. but this summer is actually the first time that he is really going swimming almost daily for about a week and a half now. Could this possibly be the trigger? I know he began the eye blinking about two weeks earlier than his daily swimming, but he did use a neighbor's pool a couple of times during those other weeks...What do you think?

 

Anyway, I'll keep you all posted!

 

Thanks,

Evie

[evie]

I just read in this article (http://latitudes.org/articles/finding_triggers.htm) that one of the possible triggers of the tics are chicken pox.

 

My son just had the chicken pox!!!!!

 

He had it roughly around when the tics began!

 

He caught it from my daughter who had it two weeks earlier.

 

This is pretty amazing.

[evie]

Just updating...

 

Today is day number three on Clindamycin. I think (hope) that my son's twitches may be getting slightly better..I'm not sure...

 

He has also been on acidophilus and a very reduced sugar diet for the past 5 days. I have't taken him off sugar completely yet although I think I may end up doing just that. I did go shopping earlier and I bought a lot of "healthy" products for him to snack on. (fresh and dried fruits, nuts..etc.) There are many products that are sweetened with 'Maltitol' and are considered 'sugar-free'. Is this sweetener a problem?

 

"Maltitol is produced by the catalytic hydrogenation of a special high maltose corn syrup that transforms the maltose to the sugar alcohol maltitol."

 

One thing's for sure. His mood is greatly improved! I'm not sure what is actually doing the trick, but I haven't had to deal with any MAJOR tantrums for the first time in many weeks.

 

I guess I'll continue to wait and see if the medication will work for him...

If not, I will take him to an allergist next week to see his food sensitivities.

I think this is the right approach...?

 

Thanks everyone for being out there!

[ad_ccl]

Hi Evie,

 

Glad that you are seeing improvements. I know the first PANDAS outbreak my son had between the 36-48 hour mark the tics seemed to go away as quickly as they appeared. He was left with just the chronic cough that he had prior to the PANDAS - and that only went away once we removed milk from his diet. So, with hope the new antibiotics will do the trick. Good Luck and keep us posted.

(I know nothing about maltitol)

[mmazz]

Hi Allison;

 

Just a quick question, you know my little one started ticcing without a strep infection in December. But since then he had two- one in June and again just diagnosed with it yesterday (and pink eye too). But anyway each time he is on antibiotics he does not have any tics. Normally with the course of action we took he would have minimal stuff only I notice, but the first time on the anitbiotics I thought it was a coincidence. Now I am not so sure. So my question is, can strep lie low and undectecable and cause tics?

 

Marie

[ad_ccl]

Hi Marie,

 

That is a good question - and one I kept asking when my son was sick early on - as his tics would go away on antibiotics but re-surface within days of going off them - only to decrease again once on antibiotics - the doctors could not really understand it as in theory the strep should have been gone as he had been on the antibiotics for the full course -the other baffling thing was why was he doing well on antibiotics when the antibiotic attacks the strep and the strep should have been gone, what was the antibiotic interacting with - as the infectious disease specialist said there are many things about the human body we just don't know. About a year prior to the PANDAS outbreak my son started coughing a lot, the chronic cough got quite bad so we had him go for asthma testing and then my doctor put him on Biaxin just to rule out an infection - on the third day of the Biaxin his cough went away completely and it was the first time he had been cough free in 2 years - I realized when we were playing hide and seek and I could not find him, prior to that I always could hear where he was hiding. Unfortunately the Biaxin was so foul tasting we could not get any more into him, his cough returned within days - we put him on amoxycillin for 10 days but the cough did not go away. I always went back to this with my doctor - what in the antibiotic made him stop coughing. When he had the PANDAS outbreak he was put on amoxycillin for 10 days and then within a few days off it the tics came back so we did amoxycillin again and the same thing again, then we tried Biaxin, I was able to bribe him to take it. While the cough decreased it never went away. The cough has consistently been gone since going off the milk. So....I really do not have an answer for you. I feel like things can be low lying - just my gut feeling. That whole bucket theory, maybe there is just a little something there and the antibiotic suppresses it enough to get rid of the tics - then they come back in a sublte way once off the antibiotic - you are doing so many good things for your son that it is keeping the tics subtle, perhaps if you were not juicing, etc then the strep would cause a greater more obvious outbreak and the decrease on antibiotics would be more noticeable.

Strep can definitely be undetectable - which is why the blood work is so important. When my son had the PANDAS outbreak he did not complain of a sore throat other than in passing the week before, I know how painful strep has been for me in the past. Sorry your son has had 2 strep infections. When he started ticcing in December was he checked for strep? I can't remember if you ruled out PANDAS - was it a sudden/severe onset. I think it again goes back to why are our kids getting sick so much - I really believe once their little immune systems are built up that things will only keep getting better.

 

Take Care.

 

Evie - hope that things are even better for your son today.

[mmazz]

Thanks Alliosn for your quick reply. It was helpful and it is nice to go to the source for questions. Regardless of the medical degree, if you have not experienced it, it is all heresay. So your opinion is so important. Yes he was tested in Dec. for strep but it was negative. But in the prior April he had strep and that is when the sensitivity stuff realy started to develope. So I think he always had a low lying something. Interesting enough his best friend in school (who he sat next to all year) always had strep and in Dec his tonsils were removed because of the constant strep. And even after surgery he got strep numerous times. So there is the carrier. I'll just keep pumping him with natures stuff and supps and it is the old wait and see.

I'm glad to here all is well and my best to you and your family.

 

Be Well,

 

Marie

[evie]

Today was the fifth day on Clindamycin and I can't say that I see much of an improvement in the tics (maybe VERY slight ups and downs...) Definitely better in the behavior, though (although today wasn't great, but I believe he was just plain tired - he had a late night last night.)

 

I'm still laying low on the sugar. So far the $1 a day bribe is still working. I will try to get an allergist appt. this week to have something concrete as far as which foods to remove from his diet.

 

I have been reading up on the yeast theory. I tried the spit test but he didn't get that much out of his mouth and whatever he did seemed to have floated. I still think he may have a yeast problem though, because had been on a low dosage of Bactrim for two winters straight due to chronic ear infections. He also craves sugar and has the anger/behavioral issues like so many with yeast problems have.

 

How can I tell if he has a yeast problem? What sort of test is there? Also, how is it treated? With Nystatin? What about Culturelle? I read about it and maybe that works... Has anyone had success with it?

 

Thanks!