Tics will not go away

[chodnett]

I need thoughts on why my Daughters tics are not going away. She has been on Augmentin XR for over a year and has had 3 IVIG treatments.

We have found all (most) behavior issues non existent and realize if the tics would leave we would have our daughter back.

I am loosing hope that they will ever go away.

Any thoughts to help??

[thereishope]

From what I gather, tics are the hardest symptoms to get rid of. Luckily, my son did not have tics. Also, I believe it has been mentioned on here before that PEX may be better for stubborn tics? Someone correct me on this if I'm remembering wrong. As for the IVIG's, were they with a doctor that follows the PANDAS protcoal of high dose IVIG? Have you ruled out a family member being a possible trigger through exposure? Some have found that they have a hidden carrier or someone has a hidden active infection through bloodwork of family members. Something to think about doing, if not done yet.

Edited November 30, 2010 by Vickie

[Fixit]

I need thoughts on why my Daughters tics are not going away. She has been on Augmentin XR for over a year and has had 3 IVIG treatments.

We have found all (most) behavior issues non existent and realize if the tics would leave we would have our daughter back.

I am loosing hope that they will ever go away.

Any thoughts to help??

 

we have not done any big guns..

if you can inform what dose and what time frame of ivig's maybe others can help with thoughts...

did you start aug first....about a year ago??.

and how long since the last ivig?

 

all i can currently suggest is trying a different abx....or a combo of...if the trigger was myco p...like my sons last one..i have heard it may, like lymes take up to 2 years to completely clear...

 

have you ruled out lymes?

 

also what about a steroid taper...from what i read bursts can cause havoc on the immune system..

the burst was ok..only lasted a couple days

and for my ds the taper was like a miracle.....didn't hold completely as we went into school year..but beautiful..and it had SOME lasting effect...for some it holds completely.

[swim]

We share your frustration ... we just can't seem to get the tics to go away either. We have not done IVIG because our doc considers his symptoms mild and not enough to warrant IVIG. We have been managing with anitbiotics only - keflex for a year and a half with some amox mixed in lately because we are seeing more tics. He is also very energetic for the last 3 or 4 weeks - like someone that has had a lot of coffee. Tics are always worse when watching TV - do you have the same reaction?

 

We have tried all of our old standbys to bring the tics under control (gluten/dairy free diet, increase antibiotic dose, drink more water, add magnesium), but they are not working this time around. Like you, I am looking for any new ideas. Feeling helpless again ... Last night, our son asked why no one could help him if doctors can help people with cancer ...

[Priscilla]

We share your frustration ... we just can't seem to get the tics to go away either. We have not done IVIG because our doc considers his symptoms mild and not enough to warrant IVIG. We have been managing with anitbiotics only - keflex for a year and a half with some amox mixed in lately because we are seeing more tics. He is also very energetic for the last 3 or 4 weeks - like someone that has had a lot of coffee. Tics are always worse when watching TV - do you have the same reaction?

 

We have tried all of our old standbys to bring the tics under control (gluten/dairy free diet, increase antibiotic dose, drink more water, add magnesium), but they are not working this time around. Like you, I am looking for any new ideas. Feeling helpless again ... Last night, our son asked why no one could help him if doctors can help people with cancer ...

 

 

It seems as though yeast issues can increase tics. With the abx it is certainly likely there could be yeast overgrowth. It has also been reported that hyperactivity can be seen with yeast overgrowth. I know my dd tics increase greatly after she eats too much sugar which helps the yeast flourish. I think some of the anger issues can be attributed to yeast also. It is such a fine line.

[Priscilla]

We share your frustration ... we just can't seem to get the tics to go away either. We have not done IVIG because our doc considers his symptoms mild and not enough to warrant IVIG. We have been managing with anitbiotics only - keflex for a year and a half with some amox mixed in lately because we are seeing more tics. He is also very energetic for the last 3 or 4 weeks - like someone that has had a lot of coffee. Tics are always worse when watching TV - do you have the same reaction?

 

We have tried all of our old standbys to bring the tics under control (gluten/dairy free diet, increase antibiotic dose, drink more water, add magnesium), but they are not working this time around. Like you, I am looking for any new ideas. Feeling helpless again ... Last night, our son asked why no one could help him if doctors can help people with cancer ...

 

 

forgot to mention my dd tics are always worse while watching tv too. Almost non existent all day, until she settles to watch tv. I have often wondered if it is the hyperexcitability of these neurons, while she is busy, they are busy, but when she tries to relax, they need to stay excited. I really feel we still are battling yeast and it hinders progress. I have taken her off all meds (even abx) since Oct 2, the only change I noticed was an increase in tics (mostly during tv) so I am wondering if it is a lingering yeast issue. Like I said before, definitely worse after sugar (like week of Halloween)

[chodnett]

How can we tell if we are battling yeast problems?

[Priscilla]

How can we tell if we are battling yeast problems?

 

 

well, my opinion is we already know that abx create an imbalance in gut flora, then I read about some of the symptoms of overgrowth being, anger, irritability, hyperactivity (all of which dd has), along with a clear indication of a rash, with uneven pigment spots on her skin (known to fungal issues) which appear with abx and disappear when stopped. This accompanied with her naturopath believing she had no active infection, but a pretty imbalanced gut (also apparent in her bowel movements). So we did the diet and supplements to balance her gut, but she was still on abx. So I stopped her abx Oct 2. I havent seen a surge of PANDAS symptoms like I thought I would, but I have seen an intermittent increase in tics, which some are saying can be from yeast. The yeast releases toxins as they die known to effect the nervous system. I definitely see an increase in tics with sugar intake (which the yeast thrives off of) My dd is so happy to not be taking 6 pills 2-3 times a day. I do think we need to restart nystatin and increase probiotics, but I wanted to do this slowly after stopping abx because I didn't want to tax her system too much with a large yeast die off. I can't be 100% sure, but my mommy gut just kept me worried about yeast, and like I said, somehow she is maintaining without abx (she has completed 4 ivig) I personally think long term abx can do more harm than good.

[swim]

I've been in denial that it could be yeast, but maybe it is and I just needed someone else to tell me. We spent 2 years getting yeast under control in the past and I am afraid to start down that road again. I am thinking that would explain why I think tics are worse after probiotics - probably a dye off reaction. Thoughts?

[MMC]

We're in the same boat. Dd14 has had tics for about 9 years now. Fairly mild tics that flair with strep or stress. We notice them, but most others don't. She is currently on Intuniv and it helps some. Recently, she was a bridesmaid in a wedding...up front for 20 minutes...no signs of tics. She is mature enough to suppress them if needed. She has some OCD, but tics have been main issue. Btw, she has not had strep since being on PenVK for the past year.

 

Ds12 has had PANDAS for over a year and a half now. Main issues are tics, one doctor calling them chorea-like at times (during worse attacks at night). He tics from sun up to sun down...neck, face, torso, hands, feet...from head to toe. It is very sad, but he has learned to cope as best he can. He has to take clonidine at night to help him relax and go to sleep. He has had plasmapheresis and one IVIG treatment. Insurance has denied further IVIG treatments, and the one treatment did not seem to help a lot anyway. We wonder if more IVIG treatments would help, but just don't know. We are considering another plasmapheresis treatment, because this did help the most. He had it back in January, then got swine flu in February...tics came back. This was our first sign that he falls under the PITAND category as well. He had a virus a couple of weeks ago and caused a flair up. It was so bad, he could not do his homework one night and missed school the next day. After the virus cleared in about 4 days, he was better...meaning, he still had tics, but was able to recover back to baseline with tics. He also has some OCD, worse than dd. He has been on PenVK and is currently zithro, 250 per day. Oh, and he recently started a clonidine patch that is slow release for the daytime. Seems to help some.

 

We are trying to pursue Lyme testing with his PANDAS doctor. And have just started a gluten free diet. We hesitate doing another plasma and the tics reappear upon the next virus, cold or flu. Or...what if Lyme or some other co-infection is creating auto antibodies? We need to get everything clear first...then do another plasma treatment, in my opinion. I have read a post on this forum that some doctors theorize the bad antibodies are very sticky in the brain and are just hard to clear. So, it may just take time. I had the same stuff as a kid. Tics cleared 75% by the time I was 15, 95% by age 18. Could take time...a lot of time. But from my fist hand experience, they mostly clear up eventually.

 

Hang in there. I know how hard it is to watch your child suffer with tics (and other PANDAS symptoms), and not be able to do find a treatment solution.

[Priscilla]

I've been in denial that it could be yeast, but maybe it is and I just needed someone else to tell me. We spent 2 years getting yeast under control in the past and I am afraid to start down that road again. I am thinking that would explain why I think tics are worse after probiotics - probably a dye off reaction. Thoughts?

 

I think its possible. No way to know for sure. But something about the yeast factor really bothers me so I really feel we need to regain that balance.

[sf_mom]

You can do stool samples to determine if yeast is the true problem.

 

Our son presented with mostly with TICs, mild OCD with sudden on-set June 24th, 2009. He had hdIVIG treatments September 2009, November 2009 and January 2010. In August of 2010 we took our son to an LLMD even though his Igenex results were negative (IgG and IgM positive for band 41 only) and we eventually unraveled he was positive for Lyme via provocation and DNA testing. When we started Lyme treatment we saw a resurgence of all TICs plus a few extras that took 9 weeks to settle out. We also ran extensive stool testing to determine if there was other factors at play. We did find a parasite, determined that yeast was NOT an issue even though he had been on antibiotics for over year and that he was suffer from 'leaky gut' syndrome due to severe dairy, egg, cheese sensitivities.

 

Thankfully, since my son's diagnoses we have since unraveled our entire family has Lyme and all three of our children most likely suffer from congenital LD. Our three year old son is actually positive for two co-infections of bartonella and babesia. We are relieved to have unravel this for our family and all our children continue to improve with our oldest being TIC/OCD free. We are still undergoing Lyme treatment for more of the physical symptoms of joint pain, headaches, mood liability and mild learning issues that are associated with LD. We expect at least another year of treatment for all the children.

 

Anyway, most LLMDs are very versed at tracking down chronic infections (mycoplasma, strep, bartonella, babesia, lyme, etc), parasites, viruses, molds, allergen's, environmental toxins, yeast, etc. that may be causing additional issues (not just Lyme). I think additional testing would be helpful to confirm if there is anything else at play for your daughter. A good LLMD can also assist in tracking the above issues (yeast, additional exposures, etc) as you continue with antibiotic regimen/treatment as well.

Edited December 2, 2010 by SF Mom