PANDAS? tourettes may be strep!

[momofgirls]

I want to encourage EVERY parent on this forum to seriously consider pandas for their child. I spent over a year thinking my daughter had TS and OCD. All her strep tests were negative and we recently started her on a high dose of augmentin and for the first time in over a year she is 99 % symptom free. We found an immunologist who believed our girl actually has pandas regardless of all the negative bloodwork. He was bold enough to start antibiotics and she is all better I am barely seeing a quiver in her lip. The bad thoughts and tics are gone. Be aware that it may take many weeks and even a steroid burst before seeing improvement. I saw no improvement for 3 wks and then dramatic improvement after. You can research a DR kovacevic in chicago. He is kind and answers emails. Also look up Madeleine cunningham at oklahoma university. She is a strep expert and doing a study on pandas. I know their lab is closing sometime for the holidays but you can participate in the study. I hope this helps some of you find the answers you need.

[CSP]

Hi momofgirls,

 

I have seen my son improve with antibiotics but not to the point of being 99% tic free. Could you tell us what kind of tics your daughter had? If you have a family history of tics, do you know if your child could still have PANDAS? My son has never been on antibiotics for longer then 10 days.

 

What do you suggest parents tell their Drs. to have a trial treatment of antibiotics for weeks?

 

Thanks for answering my questions.

 

CP

[momofgirls]

My daughters weighs 40lbs and is taking 1200mg augmentin a day. That is a pretty high dose. Yes she still has pandas because it is an autoimmune disorder caused by strep. Many children outgrow the autoimmune rxn to strep and some stay on antibiotics prophylactically for years to prevent re infection. Some pursue treatments like ivig or plasma exchange to rid the body of the strep antibodies causing the damage.

 

My daughters tics were pretty severe. Neck back arms and legs at one point. She also had vocal tics. We have npo history of TS in the family that I know of. I am not saying that strep is the cause for all kids tics but I had no idea she had strep. She wasn't sick in the traditional way. You need to do some research and maybe visit the pandas forum. A lot of good info on there. Best of luck to you.

 

 

Hi momofgirls,

 

I have seen my son improve with antibiotics but not to the point of being 99% tic free. Could you tell us what kind of tics your daughter had? If you have a family history of tics, do you know if your child could still have PANDAS? My son has never been on antibiotics for longer then 10 days.

 

What do you suggest parents tell their Drs. to have a trial treatment of antibiotics for weeks?

 

Thanks for answering my questions.

 

CP

[Caryn]

momofgirls,

 

What is the diagnostic proof that your daughter in fact has PANDAS? Antibiotics are a common treatment for autoimmune disorders in general to keep them in remission or to lessen symptoms. Was there a specific lab test that proved in fact you were dealing with strep bacteria?

 

Are you using any other form of treatment besides the antibiotics?

 

Long term antibiotics come with a whole host of possible side effects (I know personally because I was on them long term for a kidney disorder as a child. They saved my life but also made me very sick digestively). They are not necessary to cure a person and if a person is misdiagnosed they can cause more harm than good in the long run. I do not doubt this treatment has worked for many but it is not the only course of treatment for tics/tourette syndrome, even in the worst of cases as it may seem.

 

My son is symptom free, still, after a very aggressive onset at age 3 1/2, one which had negative PANDAS titers but for all practical purposes LOOKED like PANDAS. We saw major behavioral issues and OCD, ADHD symptoms. What we were dealing with was a vaccine injury that resulted in the onset of celiac disease which spiraled out of control until our son needed to be pulled out of preschool for two weeks. He had and still has low glutathione without supplementation. This has been very helpful in keeping him healthy and symptom free. He was also diagnosed with Pyroluria through a urine test and the supplements he gets for that also help keep him symptom free. For him the trick is to keep the liver functioning optimally-- keep the toxins low and help stimulate it to produce the proper amount of enzymes.

 

Celiac disease is another autoimmune disorder that is associated with neurological issues, as is lyme disease. Tics can be present in both conditions, so can OCD. So you see, there is a lot of lab testing to be done to determine what makes a child tic.

 

Our son's cure meant a special elimination diet. We never used antibiotics as a treatment, or IVIG, or plasma therapy. I am not saying that it isn't necessary for some, but I don't want people thinking that it is necessary in all cases or else the sky will fall down on them. I was so scared by the PANDAS parents' postings in the beginning that I worried I was doing the wrong thing by following an elimination diet. My son tested positive for 17 allergens and the success of that diet was slow going. I committed myself to doing it for six months at least. Boy am I glad I did that. I certainly would have quit several times along the way as he waxed and waned a lot during that period. His digestive problems were so complex and so far reaching that it took nearly a year to get him to a place where I felt I had done the right thing.

 

You may find this dissertation interesting:

Is Gilles de la Tourette's Syndrome an Autoimmune Disease? (online thesis)

 

I agree 100% that we are dealing with an autoimmune issue over here at our house. It is certainly NOT PANDAS in our case. I also want to stress that the traditional treatment for PANDAS is not the only treatment option. We have had LONG TERM success with the natural treatment route of dietary/supplemental intervention and continual LAB TESTING to monitor our son's autoimmune disorder and to make sure that his gluten antibodies remain in the low/normal range. We use stool samples and blood samples to monitor this. He remains symptom free and has been 99% symptom free for almost two years now.

 

Just food for thought.

[sf_mom]

Caryn,

 

Just so you know there is NO PANDAS titers and often ASO or Anti-DNase-B Titers are negative or only slightly elevated. I would challenge you to know concretely that it ISN'T Pandas in your child by having your son's CaM Kinase levels tested. CaM Kinase is a protein in the blood that is trigger by streptococcal cross-reactive antibodies. The only way to secure the kit to test for CaM Kinase is through Madeleine Cunningham at the University of Oklahoma.... involved in original Swedo Study. You can find her information under PANDAS section of this forum.

 

We have heard often enough that children went undiagnosed, had complete sensation of symptoms for several years only suffer greatly down the road. Please concretely rule OUT PANDAS. We only post here to potentially help others.... remember somebody once helped us.

 

I'm curious to know, if you were taking Probiotics with antibiotic treatment as a child?

 

 

-Wendy

 

 

 

momofgirls,

 

What is the diagnostic proof that your daughter in fact has PANDAS? Antibiotics are a common treatment for autoimmune disorders in general to keep them in remission or to lessen symptoms. Was there a specific lab test that proved in fact you were dealing with strep bacteria?

 

Are you using any other form of treatment besides the antibiotics?

 

Long term antibiotics come with a whole host of possible side effects (I know personally because I was on them long term for a kidney disorder as a child. They saved my life but also made me very sick digestively). They are not necessary to cure a person and if a person is misdiagnosed they can cause more harm than good in the long run. I do not doubt this treatment has worked for many but it is not the only course of treatment for tics/tourette syndrome, even in the worst of cases as it may seem.

 

My son is symptom free, still, after a very aggressive onset at age 3 1/2, one which had negative PANDAS titers but for all practical purposes LOOKED like PANDAS. We saw major behavioral issues and OCD, ADHD symptoms. What we were dealing with was a vaccine injury that resulted in the onset of celiac disease which spiraled out of control until our son needed to be pulled out of preschool for two weeks. He had and still has low glutathione without supplementation. This has been very helpful in keeping him healthy and symptom free. He was also diagnosed with Pyroluria through a urine test and the supplements he gets for that also help keep him symptom free. For him the trick is to keep the liver functioning optimally-- keep the toxins low and help stimulate it to produce the proper amount of enzymes.

 

Celiac disease is another autoimmune disorder that is associated with neurological issues, as is lyme disease. Tics can be present in both conditions, so can OCD. So you see, there is a lot of lab testing to be done to determine what makes a child tic.

 

Our son's cure meant a special elimination diet. We never used antibiotics as a treatment, or IVIG, or plasma therapy. I am not saying that it isn't necessary for some, but I don't want people thinking that it is necessary in all cases or else the sky will fall down on them. I was so scared by the PANDAS parents' postings in the beginning that I worried I was doing the wrong thing by following an elimination diet. My son tested positive for 17 allergens and the success of that diet was slow going. I committed myself to doing it for six months at least. Boy am I glad I did that. I certainly would have quit several times along the way as he waxed and waned a lot during that period. His digestive problems were so complex and so far reaching that it took nearly a year to get him to a place where I felt I had done the right thing.

 

You may find this dissertation interesting:

Is Gilles de la Tourette's Syndrome an Autoimmune Disease? (online thesis)

 

I agree 100% that we are dealing with an autoimmune issue over here at our house. It is certainly NOT PANDAS in our case. I also want to stress that the traditional treatment for PANDAS is not the only treatment option. We have had LONG TERM success with the natural treatment route of dietary/supplemental intervention and continual LAB TESTING to monitor our son's autoimmune disorder and to make sure that his gluten antibodies remain in the low/normal range. We use stool samples and blood samples to monitor this. He remains symptom free and has been 99% symptom free for almost two years now.

 

Just food for thought.

[Caryn]

Wendy,

 

Yes I did take probiotics regularly. I was on antibiotics for the better part of a year and it saved my life. I was six years old and weighed about 50 pounds and took about 250 mg a day of antibiotics (keflex, if you want to know the exact brand) to keep me alive. Without the long term antibiotics I would not have been strong enough to withstand the surgery and recovery (was in the hospital for nearly a month, hooked up to a catheter). I was born with a congenital hereditary disorder and I was very sick, in an oxygen tank at 4 mos because I developed severe pneumonia as a result. I ran fevers of 108 or better on various occasions and was hospitalized so many times that I knew the nurses who cared for me very well. My kidneys were poisoning my body with toxins on a daily basis until my pediatrician finally decided to send me to a urologist for testing. Then I had corrective surgery. I was a very sickly child and developed many allergies after my surgery. Had numerous food intolerances but was never put on a special diet (who did that in those days?) I used to get huge fat lips whenever I ate melons. My tongue and the roof of my mouth were always itchy. I had a mottled tongue. Hand many cavities, have terrible white spots on my teeth due to enamel damage. And was constantly on allergy meds, etc....so bad that I needed surgery in my late teens on sinuses, had to remove polyps, had severe candida in my sinuses but kept getting prescribed antibiotic treatments by my ENT. Was very counterproductive for my health and this continued for 10 years. For one whole year I could not breath at all through my nose when I lay down. Talk about miserable. I had terrible headaches and was so fatigued but had insomnia because I couldn't breath at night. As a young adult I suffered from many symptoms of candida overgrowth and had many symptoms not understood by many docs I visited. I won't go into detail but let's just say that my stomach acted like a brewery. It wasn't until my son was dxd and I put him on the anti-candida diet that I realized it had been my own personal problem all along. Now I breath right. Now a cold really only lasts 7 days anymore. I finally feel healthy. I am at peace. It took 30 years to get here.

 

There are many digestive imbalances that can and do occur with large doses of antibiotics. When the bowel is so stripped of bacteria long term how does one properly digest one's food? Do you do lab testing to make sure the nutrient levels in your child's blood are adequate on a regular basis? Are you worried about C-diff or other complications? Have you thought about life long complications? My mother rotated the antibiotic with the probiotic. She was very aware of the side effects. There are just certain things that occur when the body is put under that kind of stress for long periods of time. H-pylori is another problem that I would be concerned about, especially with such high doses. But I am sure Dr. K is fully aware of all the complications and has informed you of how to handle things. I am certain he has you working with a gastroenterologist as well.

 

Thanks for the info on cam kinase. I understand that it is a trial and not a definitive marker for PANDAS at this time. It is also not FDA approved, I've been told. That doesn't mean it isn't valuable. It could be a major breakthrough. It could also be disproved someday.

 

Right now my son is fine but if he develops OCD again out of the blue in a few years I will be sure to order the test to be on the safe side. Thanks for the heads up. Right now I am happy with his cure and do not feel the need to medicate him with antibiotics.

 

Cessation of symptoms that rebound years later is very common among Celiacs when they are not practicing a gluten free diet. 80% of our immunity is housed in our gut. So autoimmune disorders are often corrected when gut imbalances are cured. Crohns, MS, etc.... But it takes a very long time as we have to wait for the villi to heal. Likewise, once they are healed the presence of bacteria and fungus that infected the body during dysbiosis dissipates over time until the symptoms recede. When the gut is in balance there is no infectious agent wreaking havoc. When the gut is in balance the antibody levels drop. Health has to do with the body's PH levels. When the body is acidic it develops a disease state. When it is alkaline we are in good health. So if a person heals but does not maintain an alkaline state, eventually the disease state will return and thus the symptoms. Antibody levels rise and fall like a helium balloon, slowly. Celiac experts have found that for some it can take two years for antibodies to go down to a normal level after starting a gluten free diet. Two years later my son was at 16. Normal is 10 and under. Likewise it could take two or more years to return to a disease state after one jumps off the bandwagon. So I do not have any fear that the beast is knocking on the door waiting to attack my son again. I think we are in the clear as his lab tests say we are on track. My son can eat a dunkin donut today and not tic. Do we allow that? No. He could probably eat one every day for six months and not tic. I bet he would have digestive issues. After a year, when the villi are destroyed completely again he would probably show signs of neurological problems. He would be extremely moody, irritable, and probably have OCD tendencies again. This is my opinion. I don't plan to instill a dunkin donut diet to prove it is true, but from all my research I have come to understand that this is true for most folks diagnosed with Celiac.

 

Maybe I'm a fool. Maybe not. Only time will tell.

 

There is a lot we don't know about autoimmune disorders. There is a lot we do. I suppose we can agree to disagree on some things.

[sf_mom]

Caryn: Believe me, I do NOT think you are a fool as I KNOW you've worked very hard to cure your son and from what it appears with great success (me too). But I did feel the need to be a 'little' corrective because there is no PANDAS Titers and if you only tested ASO and Anti-DNAse-B and they were negative.... this is a common in PANDAS children. I don't want anyone to get the wrong impression when there is a potential treatment that is available and working. AND, you are correct Madeleine Cunningham's test is NOT YET FDA approved but she is one of the world's leading strep experts and involved in the original Swedo Studies. Unfortunately, it may take another 20 years for the test to be FDA approved. BUT, for now Dr.'s are treating based on those results and clinical picture of child, they understand the science behind the CaM Kinase protein and its activation via cross-reactive antibodies.

 

Our story is long but it appears that 4 boys, two of which are my children contracted a resilient strain of strep and will potentially be diagnosed with RF within the next couple of weeks. There are all types of complications associated with RF and the long term implications are scary. Fortunately, we have seen a 98% recovery since June 24th, 2009 in our older son. The documented exposure was in the fall of 2007 and our children were immediately impacted with the youngest (6 months) at time being hospitalized for 6 days. Our older son appeared to get better on his own. He had enough of an immune system to wage the war in his body but six months later he got his first TIC (body now losing the war with the bacteria and cross reactive antibodies). It wasn't until June of this last year that we had what appeared to be a sudden onset of Tourette's and mild OCD. Again, he seemed to get better on his own but something told me 'mother's instinct' that this was serious. I am very, very, very grateful to the individuals that helped us down the path of PANDAS. We now know two of the 4 boys are PANDAS and awaiting the result of the other two. We do not take the use of antibiotics lightly and will do everything to boost his immune system so he can potentially fight off strep bacteria on his own some day. He has many Dr.'s working towards a long term solution (including his grandfather) almost to the point of being unable to count.

 

I have to say.... some Dr. believe that about 80% of all Tourette's and OCD is PANDAs but until it is published information and can be statistically proven things will remain as is.. Just as you would encourage me to understand EVERYTHING about the potential long term impact of antibiotic use I would encourage you to investigate your child's CaM Kinase Levels. It may mean NO ACTION on your part but wouldn't you want to know if his disease is being triggered by cross reactive streptococcal antibodies?

[momofgirls]

You girls have scared the crap out of me! Ha ha it is just all so overwhelming...strep antibodies attacking the brain, autoimmune, leaky gut. I think its all important stuff. Its just so tough to balance treatment. Right now my daughter needs an antibiotic and I'm going to give it to her. I've added the probiotics in there hoping it helps. Really though we've all got our hands full. I posted that original message just hoping tourettes moms would consider reading up on some of the strep studies. I've spoken with m cunningham and kovacevic and DAN doctors trying to piece things together. FOR US the antibiotics made the difference. I date my daughters illness starting a few years back to positive throat culture for strep. Otherwise she has been healthy. Did all the DAN stuff checking for yeast and leaky gut etc and really came up with nothing. Her cam k score was in the pandas range. This is where we are and if it helps someone else...great

[KeithandElizabeth]

Hello:

 

Okay, I am jumping in with my two cents. My son also has PANDAS and IVIG has done wonders for us. It has brought our son back to us!!! We are doing a year of prophylactic antibiotics and then I hope that the natural remedies we are using will help my son's immune system to react more appropriately to strep as well as other viruses on its own.

 

I often wonder how many people with OCD and Tourette's actually have PANDAS. On the other hand, I believe that strep as well as other bacteria and viruses are all around us and if we have a super healthy gut and immune system, then we can live in harmony with strep. This is what many nutritionists and homeopathic doctors believe. Strep is not the only trigger for PANDAS, and hence, full dose antibiotics until adulthood will not prevent further PANDAS exacerbations. I agree with Caryn about the acidity/alkaline level of the body and how a poor gut health can lead to nutrient deficiencies. Our PANDA son has horrific acidic PH levels. We are currently working with a nutritionist to alkalize his PH. And yes, if you research PH levels, there is so much information about how an acidic environment breeds disease! And especially autoimmune diseases.

 

I feel that the antibiotics and IVIG are a short term help for those of us who were/are paralyzed by PANDAS. Ultimately, I feel like the goal for us would be to strengthen our immune systems to the point where they can fight off invasions on their own.

 

So, I agree with all of you in a sense.

 

Elizabeth

[sf_mom]

Me too!

 

Hello:

 

Okay, I am jumping in with my two cents. My son also has PANDAS and IVIG has done wonders for us. It has brought our son back to us!!! We are doing a year of prophylactic antibiotics and then I hope that the natural remedies we are using will help my son's immune system to react more appropriately to strep as well as other viruses on its own.

 

I often wonder how many people with OCD and Tourette's actually have PANDAS. On the other hand, I believe that strep as well as other bacteria and viruses are all around us and if we have a super healthy gut and immune system, then we can live in harmony with strep. This is what many nutritionists and homeopathic doctors believe. Strep is not the only trigger for PANDAS, and hence, full dose antibiotics until adulthood will not prevent further PANDAS exacerbations. I agree with Caryn about the acidity/alkaline level of the body and how a poor gut health can lead to nutrient deficiencies. Our PANDA son has horrific acidic PH levels. We are currently working with a nutritionist to alkalize his PH. And yes, if you research PH levels, there is so much information about how an acidic environment breeds disease! And especially autoimmune diseases.

 

I feel that the antibiotics and IVIG are a short term help for those of us who were/are paralyzed by PANDAS. Ultimately, I feel like the goal for us would be to strengthen our immune systems to the point where they can fight off invasions on their own.

 

So, I agree with all of you in a sense.

 

Elizabeth

[kim]

I'm really glad Caryn and Wendy had such a useful discussion here. Again, the ability to discuss without hostile disagreement is so nice.

 

I'm wondering if anyone has any thoughts to clarify why an elevation in CamK activity alone is really significant in diagnosing pure PANDAS (maybe that is not anyone's position)? When I say "pure," I mean a specific group of individuals that would benefit from treatments like IVIG, plasma exchange or long term antibiotics (and I'm not denying those subsets exist!). My understanding is that CaMk activation seems to correlate with "neurons gone wild," in the PANDAS hypothesis because an antibody is binding to a ganglioside and triggering an influx of intercellular calcium which binds with calmodulin (a main receptor site for calcium within a neuron). I think I got that right?

 

I think many things can trigger this calcium influx. Hormones, stress, etc. Doesn't the elevated CaMk have to be correlated to definitive presence of a particular antibody somehow, to truly give any real credibility to the acronym PANDAS?

 

I really believe that this does exist and I realize that the type/ dosage of antibiotic makes a big difference. I know the typical strep markers (ASO & anti Dnase) are not always elevated and should not be used as a definitive way to rule out PANDAS. I guess I'm feeling like there are probably individuals who would not be helped by these treatments and they could still have elevated CaMk levels. Does that make sense? I agree with what has been stated before, it would be really interesting to see what CaMk levels look like in individuals with no suspected relationship to strep. Strep is known to be a triggering event, but viral infections are too, so where does that leave us? A position on the PANDAS forum that I thought was useful was that long term antibiotics can reduce at least one trigger (and I sure get that) but I wonder if long term antibiotics would further damage gut flora, which seems to be a real problem for some already, and interfere with the bodies capability to handle virus and absorbtion of nutrients, as Caryn suggested (the nutrient part).

 

I would luv to see more data on CaMk from people on this forum who do not suspect strep to be a triggering event too.

[KeithandElizabeth]

As you probably recall Kim, my 10 year old daughter has high CAM Kinase II, but she does not display symptoms of PANDAS. She has had strep before and a history of GI issues. Our immunologists felt that the GI issues could have caused the elevated CAM Kinase and that the gut and the brain are always communicating.

 

I feel that the Cunningham test may be potentially useful for those parents who are unsure as to whether or not their child has Tourettes versus PANDAS. Dr. Cunningham states that the average Cam Kinase II for a Tourette's only person is 88, which is lower than the average person in general. So, for those who want to differentiate between the two, the Cunningham blood work may be very useful.

 

Elizabeth

[sf_mom]

Anything below 106 is considered normal range for an individual. Both CaM Kinase and clinical picture of child is important. Our son was TICing away 124 but his score might have been lowered due to recent steroid use.

 

Also why I mentioned to Caryn that NO ACTION might be required if the child is symptomless and CaM Kinase is also elevated.

 

A couple of physical symptoms that have started to disappear for our son after donor antibodies: IVIG... ongoing Chapped Lips are starting to resolve, Cradle Cap went away three weeks post treatment, dark circles and puffy eyes, not as pale skinned more of a 'glow' now, he got taller and more mature looking.... maybe its that he doesn't have the worried look in his eyes anymore. I believe these were all physical symptoms from his immune system being so drained. I'm grateful that we saw an immediate response and truly did not know how sick he was until HE GOT BETTER. I like to say... he is 130% better as he is a different boy.

 

-Wendy

[kim]

Elizabeth,

 

Thanks for the excellent reminder. Ok, let me ask you this, how do we distinguish btwn how fast the CaMk levels might fall? Is it not possible that the "TS" controls were just not in exacerbation. Seems the levels can stay elevated for a long time or might fall quickly after a treatment like IVIG?

 

We have a report on this forum of mom having "normal" range CaMk and child having elevated, I think around 176 (?). Mom still has tics. I realize much of this is still unknown, so not really expecting any answer, just wondering out loud.

 

 

SF Mom,

 

A couple of physical symptoms that have started to disappear for our son after donor antibodies: IVIG... ongoing Chapped Lips are starting to resolve, Cradle Cap went away three weeks post treatment, dark circles and puffy eyes, not as pale skinned more of a 'glow' now, he got taller and more mature looking.... maybe its that he doesn't have the worried look in his eyes anymore

 

How wonderful is that!

[kim]

Ohhh...rereading this thread Elizabeth, I saw your statement

 

Dr. Cunningham states that the average Cam Kinase II for a Tourette's only person is 88 which is lower than the average person in general

 

I might have read that before ..can't remember, but that's useful!

 

I have a young friend in his mid 20's who struggles with this disorder horribly. I keep wondering if this is a path he should pursue. Any little bit of info is so helpful. There's so much, it's hard to keep straight. I don't want him to try to come up with the funds, if it won't really prove anything in his case anyway, so your info was very helpful