Ticcing like crazy...I'm going crazy...

[eljomom]

I know many of you will probably read this and think "Holy cow, she's still chewing that cud!" Well, I am. DD7 started tics last March, just 2 or 3. Looking back, it was after suspected walking pneumonia (myco p was negative 6 months later when checked). She did take an abx for it though in March. Wondering now if that was the start of a herx? Doubt it though...that really was just an aside.

So in June, high fever (not strep), then within a week, head to toe tics, sep. anxiety, etc. Had mild ocd from time she was around 5 (germ stuff, and clothing issues). Cam K was high, anti d1 and lyso were high.

 

We see Dr. L. Tried a month of Augmentin. Not better...maybe even worse. Switched to low doze zithromax in December...and here we are. STill ticcing. Sep. anxiety is a bit better. Germ stuff a bit better, but now does "evening up/tapping." Tics morph from one thing to another. Thought maybe there were a few months with lesser frequency and number...maybe?? But Dr. L does not see her as "severe" enough for IVIG. Haven't tried steroids...scared of making her worse, as I've heard with some kids with tics. Also, the effects seem to be temporary.

 

A couple weeks ago, my dd9 started doing a bunch of eyebrow/eye tic stuff. She's had occasional throat clearing over the years, and some severe separation anxiety, and also touches me and other things with both hands, etc. Then a few days after dd9 starting, my dd7 has now had almost NONSTOP eye and nose scrunching tics, with some mouth stuff, and her hand/arm stuff. It is killing me. Makes me so sad. I also notice that when she is watching TV tics are soooooo much worse. Anyone know why?

 

So here we sit, doing nothing. And I'm freaking out, trying to figure out why all of a sudden she is nonstop ticcing. Is it some source of inflammation? INfection? ( I did take dd9 in for myco p and strep culture and titers when she started a couple weeks ago, and all were negative). I just don't know anymore. HOw do you keep from running on the hamster wheel all the time? Especially when you are PITAND? Keep testing for infections over and over? Try to find sources of inflammation? See an allergist? An LLMD? Look at gut stuff? IT's all so overwhelming. Press for IVIG? I just don't see it being the magic bullet, especially for tics? Also, from what I understand from Swedo, it's most effective if used early and for initial onset.

 

Why would she go nuts with tics all of a sudden? Well, she never really stopped ticcing in any way, shape or form, but what the heck? For us, it's never easy, like just strep.

 

WEll, thanks for listening....any thoughts ...sorry for being a broken record.

[momaine]

Sorry to hear your dd is struggling so badly. Two things I want to mention....my dd ticced worse in front of the tv because her mind wasn't as busy. If she was busy, she didn't tic as much. When she was particularly anxious, she'd watch tv and tic like crazy.

 

Because so many people whose kids have PANDAS have figured out they are dealing with Lyme (me included), my next step, if I were you would be to seek out an LLMD and rule that in or out.

 

Best of luck to you.

[dcmom]

Hi eljomom-

 

I can hear the frustration in your post. We can ALL understand this: pandas, lyme, whatever...it is hard to see your child suffer. I will share some of my opinions with you, for what it's worth....

 

First of all, Dr L IS a really compassionate doc. She GETS that these kids suffer. How is your daughter? I mean, IVIG IS a procedure that is expensive with some risk. So, maybe Dr L feels your daughter isn't really suffering with the tics, so you have a little time to try to figure it out with less aggressive means first. I don't know- this may not be the situation. But- since we have started this pandas journey with both of my girls, our number one priority has been making sure they find joy in their day. They have been at times, completely incapacitated by ocd: not able to leave the house, major depression, hiding under desks or in tents, hours in the bathroom screaming and crying, etc. So- I think the number one thing is- Is your daughter happy? Is she healthy? Is she able to DO everything she wants to? If the answer to these questions is yes- then I think you can try to calm down and look at things methodically. (this is very hard to do in a crisis)

 

If this is not the case, then I would strongly advocate for aggressive treatment- I am a big believer in Pex, Ivig and steroids.

 

It is SO hard to evaluate meds and treatments sometimes, because pandas evolves. From what I have seen it has an overnight onset, then a downhill trend. When healing the trend is improving. If you try meds on one of these trends, you may attribute the worsening or improving of the natural pandas trend to the meds- so it is important to remember that.

 

I have also found it is key, for more impartiality and sanity, to evaluate on a weekly basis, rather than a daily basis.

 

For my kiddos, antibiotics no longer help the exacerbations, for the most part.

 

PANDAS, by Swedo's definition, is an autoimmune disorder. My kids have fairly clearly followed this pattern. Many things can trigger an episode when you have an autoimmune disorder (think PANDAS, Lupus, MS, RA, etc). The docs just DO NOT have this stuff figured out yet. We have seen different immune challenges cause issues: loose baby teeth, minor colds, strep, H1N1, etc. We have found sometimes the girls have minor flare ups (loose teeth do this, exposure also), which mainly consist of emotional lability and some minor oppositional behavior). These minor flare ups seem to take care of themselves, lasting about a week. I do now, increase the abx and administer some advil during these flare ups. They have also both had three more severe episodes (actually my younger one 4- but one of them stopped completely within a few days with oral steroids). When they have these severe episodes (they have all been sudden onset, and it is pretty clear from the start what is going on) they DO need an immune modulating treatment. PEX worked miraculously and completely, IV steroids have also worked, although not as completely. But- I have no doubt without these immune modulating treatments, my kids would spend a long time in ######. My biggest challenge is how to get these treatments asap.

 

We did explore the lyme route. Both girls were negative on standard testing, and positive on Igenex as read by some llmds. We saw an llmd, and treated them with a lyme protocol for a few months- and frankly, I could have been giving them water. No change, no herx, no improvement etc. We decided to abandon lyme treatement when we were: sick of giving them tons of meds and some supplements without being convinced they had chronic lyme, when we saw no improvement, when they both got strep on these meds, and when we consulted a very smart lyme doc who is more conservative than many llmds. I know many on the lyme board will read this and cringe, and I am sorry. I am not professing to KNOW that my kids don't have lyme, or weren't exposed to lyme, but we (decided this early on also) go with what works. Lyme treatment did not work, immunomodulation has been a lifesaver.

 

So- this in uncharted territory. The person who tells you they KNOW what the solution is, is the most scary. You need to follow your gut, check all possibilities out, and go with what helps your child.

[eljomom]

dcmom---THANK YOU!!!! That post helped me immensely. I do believe I am suffering more than my daughter (at this point, at least....she's only 7 so tics and weird movements are intriguing and cute to others at this stage....probably not so as a teen!). But in figuring out what to do next, while she remains in a CHRONIC state (or elevated baseline), I believe we are wasting precious time sometimes. Just knowing the sooner you treat, the easier/better, right? And other than abx, what else is there really? IVIG, PEX or steroids. So why wait another year?

 

I would love to hear who the smart lyme doc who is more conservative than many llmd's is....sounds like exactly what I am looking for!!! YOu can PM me.

 

Also, I am getting ready to post a shocker....coming after I post this.

[dcmom]

I am glad the post was helpful- I am always afraid that I come off kinda tough- but this is serious stuff, and I don't like to tip toe around the issues

 

While I DO think early intervention is best- my daughter was treated within two months of pandas onset- and she still has the disorder- she is not cured. I am no longer focused on a "cure", but on long remissions, how to get them, and keep them. So I do hate to see parents beat themselves up about not getting to pandas treatment immediately.

 

The lyme doc I saw only treats age 9 and up- so she will be no good to you

 

Have you tried full strength abx for longer than a month? Have you and Dr L considered a steroid burst? I have a TON of faith in Dr L- she has SAVED my kids, I strongly consider her thoughts and opinions, but then my husband and I do make our own decisions. None of the pandas docs have all of the answers- and I think Dr L would be the first to tell you this- but she sees TONS of kids, and really gets how affected they are, and is TOTALLY willing to think outside of the box.

 

You are on the right track. You will find what works for your dd, you will see a pattern, you will get this under control (relatively speaking)

[lismom]

I think you really need to look at what antibiotics you've tried and for how long. My son started as PANDAS and recently dx with lyme and bartonella. It wasn't untill my son was put on a specific anti-inflamatory antibiotic and another one that hits everywhere in the body very well. My son had at times extreme tics. I've seen them start to disappear. Our lyme treatment is working. but the antibiotics we are on are also used in other cases of chronic illness. My son also had strep, Hhv6 and mycoplasma. I truly think that trying antibiotics and maybe switching at times is not aggressive or an intrusive way to see if this may be the answer. One or two months of anything is not a good indicator if the child is chronically ill. We use fairly high dose probiotics. and when the fungus(yeast) starts to increase I can see the tics also creep back up. I have to treat that as well. I do know what it is like to see the head to toe ticcing. It has always been more uncomfortable for me. This is our situation. Kathy

[eljomom]

Thanks Kathy! I am curious about the "specific anti-inflammatory antibiotic and another one that hits everywhere in the body very well." Can you tell me what your son is on? Also, what lab was used to test for Bartonella?

Also, how do you know yeast is creeping back up? How does yeast increase tics?

 

 

I think you really need to look at what antibiotics you've tried and for how long. My son started as PANDAS and recently dx with lyme and bartonella. It wasn't untill my son was put on a specific anti-inflamatory antibiotic and another one that hits everywhere in the body very well. My son had at times extreme tics. I've seen them start to disappear. Our lyme treatment is working. but the antibiotics we are on are also used in other cases of chronic illness. My son also had strep, Hhv6 and mycoplasma. I truly think that trying antibiotics and maybe switching at times is not aggressive or an intrusive way to see if this may be the answer. One or two months of anything is not a good indicator if the child is chronically ill. We use fairly high dose probiotics. and when the fungus(yeast) starts to increase I can see the tics also creep back up. I have to treat that as well. I do know what it is like to see the head to toe ticcing. It has always been more uncomfortable for me. This is our situation. Kathy

[vermontmoms]

I would lo e to know these anwers too!!! What is an anti-inflammatory abx and how do you know if yeast is causing tics?

Thanks!

Jen

 

Thanks Kathy! I am curious about the "specific anti-inflammatory antibiotic and another one that hits everywhere in the body very well." Can you tell me what your son is on? Also, what lab was used to test for Bartonella?

Also, how do you know yeast is creeping back up? How does yeast increase tics?

 

 

I think you really need to look at what antibiotics you've tried and for how long. My son started as PANDAS and recently dx with lyme and bartonella. It wasn't untill my son was put on a specific anti-inflamatory antibiotic and another one that hits everywhere in the body very well. My son had at times extreme tics. I've seen them start to disappear. Our lyme treatment is working. but the antibiotics we are on are also used in other cases of chronic illness. My son also had strep, Hhv6 and mycoplasma. I truly think that trying antibiotics and maybe switching at times is not aggressive or an intrusive way to see if this may be the answer. One or two months of anything is not a good indicator if the child is chronically ill. We use fairly high dose probiotics. and when the fungus(yeast) starts to increase I can see the tics also creep back up. I have to treat that as well. I do know what it is like to see the head to toe ticcing. It has always been more uncomfortable for me. This is our situation. Kathy

[KaraM]

I'm going to echo the recommendations to look for Lyme and co-infections. I didn't expect my dd would have any and really just pursues based on recommendations from people on this board and Dr. B suggesting before going the IVIG route. I was shocked when her Bartonella (and more recently Ehrlichiosis) came back positive (jury is still out on Lyme). I think you would want to rule these out before doing IVIG or steroids. We did not have ticcing...major OCD and other PANDAS behaviors though.

 

On a different note, a mom in our local PANDAS/PITAND support group (FamilyOfFive on this forum I think) discovered that mold was the biggest culprit in causing tics for her entire family. Once they resolved that, symptoms improved significantly. Do you have mod lissues in your home?

[eljomom]

How do you find out about molds? Sounds way too simple. Do molds cause autoimmune problems?

[lismom]

The anti-inflammatory antibiotic I'm refering to is minocycline. We're using it with rifampin for lyme and bartonella. Mino has properties that downgrade inflammatory cytokine output. Meaning, in my terms, that your immune system doesn't go into overdrive, sending more t-cells and antibodies than necessary. This antibiotic is also used in rheumatoid arthritis with good results. The longer used the better results. Its good for central nervous system chronic lyme, which my son has. Brain fog, motor tics, joint pain...

Yeast is a well known conection with tics. Not for all kids with tics but for those predispositioned for it. I spent many months on the tourettes/tic board years ago when I first saw my sons tics, before he really got sick. Besides probiotics, I try to keep it in check with natural anti-fungals.