First Post on PANDAS

[Lynn777]

Hello Everyone,

 

This is my first post to the PANDAS board. I have been posting over on tourettes/tics and people have mentioned to me about PANDAS and strep testing. I have read about PANDAS, but am still very confused and am unsure if the details of my son’s situation apply. So, I’d like to share my story and see what individuals with a PANDAS history think as far as pursuing testing for my son.

 

My son is 4 years old; he will be 5 in July. Back in August of 2009 he started having excessive eye blinking, we took him to the pediatrician and he said it was common and would go away on its own and 2-3 weeks later it went away. Then in February of 2010 the eye blinking came back and on April 18th (yes I remember the exact day) things spiraled out of control literally overnight. He started having multiple motor tics, a verbal humming and personality changes. He has always been a very sweet, kind, happy and sensitive little boy and in addition was extremely independent. The day the more complex tics started his independence went out the window, he needed constant attention and interactions with us and started hugging us all the time and needing reassurance. Also, he started exhibiting mild OCD symptoms, mostly a fixation with numbers and counting, but other things have surfaced too. He has always been a very healthy child, never any major illness or strep. He’s never even been on medications or antibiotics except for pink eye in January. He does have seasonal allergies which run in our family and his tics do seem to respond to Benadryl (which my pediatrician recommended – but we don’t give it to him every day). The only other thing worth mentioning is that the same week as the major onset he had his first tooth filled and it was a VERY, VERY traumatic experience for him. That was on Tuesday and the onset occurred on Sunday of that same week.

 

In the past two months, we started him on supplements, changed his diet and got him hooked up with a therapist and the tics seem to be improving, but the dependance and OCD is still there. We took him to a neurologist last week and she said he is mild and basically diagnosed him with chronic tics (even though he has both verbal & motor). He is still very compliant (other then a few age appropriate responses to not getting his way). He does not have any sleep issues or rage issues and his pre-k teachers barely notice any difference him.

 

Anyway, from what I’ve read so far it seems that rage/behavior issues go hand and hand with PANDAS, plus he did have eye blinking six months before the major onset, which it what makes me think it doesn’t apply to us. That said, I want to make sure I’m covering all my bases.

 

We have no family history of a tic disorder.

 

Thanks for reading and your feedback is very much appreciated!

 

~Lynn

[tygertoo]

Hello Everyone,

 

This is my first post to the PANDAS board. I have been posting over on tourettes/tics and people have mentioned to me about PANDAS and strep testing. I have read about PANDAS, but am still very confused and am unsure if the details of my son’s situation apply. So, I’d like to share my story and see what individuals with a PANDAS history think as far as pursuing testing for my son.

 

My son is 4 years old; he will be 5 in July. Back in August of 2009 he started having excessive eye blinking, we took him to the pediatrician and he said it was common and would go away on its own and 2-3 weeks later it went away. Then in February of 2010 the eye blinking came back and on April 18th (yes I remember the exact day) things spiraled out of control literally overnight. He started having multiple motor tics, a verbal humming and personality changes. He has always been a very sweet, kind, happy and sensitive little boy and in addition was extremely independent. The day the more complex tics started his independence went out the window, he needed constant attention and interactions with us and started hugging us all the time and needing reassurance. Also, he started exhibiting mild OCD symptoms, mostly a fixation with numbers and counting, but other things have surfaced too. He has always been a very healthy child, never any major illness or strep. He’s never even been on medications or antibiotics except for pink eye in January. He does have seasonal allergies which run in our family and his tics do seem to respond to Benadryl (which my pediatrician recommended – but we don’t give it to him every day). The only other thing worth mentioning is that the same week as the major onset he had his first tooth filled and it was a VERY, VERY traumatic experience for him. That was on Tuesday and the onset occurred on Sunday of that same week.

 

In the past two months, we started him on supplements, changed his diet and got him hooked up with a therapist and the tics seem to be improving, but the dependance and OCD is still there. We took him to a neurologist last week and she said he is mild and basically diagnosed him with chronic tics (even though he has both verbal & motor). He is still very compliant (other then a few age appropriate responses to not getting his way). He does not have any sleep issues or rage issues and his pre-k teachers barely notice any difference him.

 

Anyway, from what I’ve read so far it seems that rage/behavior issues go hand and hand with PANDAS, plus he did have eye blinking six months before the major onset, which it what makes me think it doesn’t apply to us. That said, I want to make sure I’m covering all my bases.

 

We have no family history of a tic disorder.

 

Thanks for reading and your feedback is very much appreciated!

 

~Lynn

 

 

my son started around the same age as yours....mainly tics and OCD behaviors - also some separation anxiety issues/somewhat immature for his age and chronic bedwetting. No problems in school - the teachers never could tell. Never any rage issues. He also never had a "diagnosed" case of strep but did get pneumonia yearly (walking pneumonia). Otherwise very healthy - other than an egg allergy. He is now 8 and we have the PANDAS diagnosis. We had his titers tested and very very high in both strep and mycoplasma Pneumonia. I am new to this so I do not know all of the tests we have had and what they all mean - other parents would be better at explaining that. We took him to see Dr. K in Chicago and after meeting with us for 1 1/2 hours he said defiantely PANDAS. We are currently working with Dr. T out of New Jersey and have him on a course of abx (antibiotics) - three weeks of zith and now we started augmentin today. Anxiety issues much better and no more bedwetting ....still have tics and some OCD issues. I don't know if this helps but just b/c he has not had a diagnosed case of strep does not rule out PANDAS. I would talk to one of the Drs that most folks refer to. I can tell you that most of them are accessible via email or phone and will do a phone consult with you at the very least.

 

Good luck!!!!

Karen

[MomWithOCDSon]

Lynn --

 

So many of the behavioral things definitely have the hallmarks of PANDAS, especially since you've got this combination of tics, OCD, separate anxiety, etc. The fact that they seem to be exacerbated by things like tooth pulling (tissue damage) would seem to play into the possibility that there is PANDAS at play, also. Finally, since allergies are an immune system issue, this, again, points to a possibility.

 

Like your son, my son was never classically symptomatic for strep; also similarly, he's generally been very healthy . . . didn't catch every germ on the block or at school (at least not noticably), wasn't prone to long-lasting illnesses at all and would typically bounce back from a cold or virus very quickly (within 1 to 2 days). Finally, he's highly allergic to pollen, mold and dust. The few times that I knew he had been exposed to strep and I took him for a throat culture, it always came back negative; whether that was because the strep never made it to his throat, or because they conducted the test poorly, I don't know.

 

We didn't know until we had blood tests for strep, the ASO titer and the AntiDnase B titers that he had very obviously been exposed at some point, might be carrying it around elsewhere (gut? sinuses?) and was, at any rate, reacting by producing a record number of strep antibodies, well beyond the lab's "normal" range. Not all PANDAS have elevated titers, but some do, and this was the case for us. With the lab results in hand, we started a trial of antibiotics; when he responded positively to the antibiotics, we felt we had our answer that yes, he has PANDAS. We have subsequently had more labs done and found that all of his standard immune function is average (which we sort of expected given his overall good health and resilience in the face of infection), but that his titers have continued to rise for some reason.

 

Many families also take the Cunningham blood test which measures levels of other substances believed to be indicative of PANDAS; the test isn't yet considered fully diagnostic, but is another tool that many families and doctors use, in conjunction with other information, to clinically confirm a PANDAS diagnosis. There are several threads here about this test, how you can go about ordering it from Dr. Cunningham's lab, etc.

 

So, bottom line is, given your son's young age and history, it would make sense to me that you at least explore the possibility of PANDAS. You might be one of the fortunate families that catches it relatively early, or, at the least, you will have ruled out one possible contributing factor to your son's behavior.

 

Good luck!

[EAMom]

Hi Lynn,

 

I'm assuming he didn't have a throat culture with either onset of tics. (It's hard to get a diagnosed case of strep if nobody does the cultures.) Lots of PANDAS kids get strep and tics and/or behavior changes are their ONLY SYMPTOM (eg no sore throat, no fever). I would start with doing a throat culture (get the 72 hour if the rapid is neg) on you son and also family members (esp. siblings) to check for carriers. Do this b-4 getting strep titers since there are some PANDAS kids with low strep titers but positive cultures.

[familyof4]

Your case sounds very similar to mine. My son started a severe eye blinking tic at age 4 1/2 . We saw both a pediatrician and a neurologist. The neuro told us it would not go away and he would likely develop more tics. The neuro did point out that he was suprised he couldn't pick up any subtle tics in me or my husband as usually he can see it in a parent even if they don't know they have a tic. My son had some counting behaviors but these were dismissed as a stage he was going through.

 

6 week later the tic diappeared. 6 months later I contracted strep and over night my son exploded in tics and frequent urination issues. He was strep negative at the time. At age 6 my son tested positive for strep for the first time - our only clue was the sudden overwhelming separation anxiety that popped up from out of nowhere. He also started with his first vocal tic, lots of obsessions and lots of counting. (It took him 104 bites to eat his dinner one night - we had no idea he had been counting this!)

 

Later I learned that when his eye blink tic started - strep was going around his pre-school. With each exposure my son has had, his symptoms have been worse than the time before and harder to get to go into remission. Advil makes a huge difference for my son. He also responded well to high dose antibiotics during his first few episodes less during the last and worst episode.

 

If your pediatrician is openminded I would test for strep and titers (although my son's are low) and try a course of antibiotics, (refer to other threads on this forum as to which ones work best) and see if you think it makes a difference for your son.

 

Good luck!

 

Heather

[peglem]

I would definitely pursue PANDAS here. BTW my child always has PANDAS flairs with dental work!

This flowchart may help in figuring it out:

 

http://www.latitudes.org/forums/index.php?showtopic=6688

 

Also, take a look at the pinned "helpful threads" post at the top of the forum. Its a lot of info, but should give you a better idea if you are dealing with PANDAS or not. And, of, course, we will respond to any questions you have along the way!

[Tenacity]

Err on the side of caution. Post-infectious autoimmune disease of the brain is a vast, complex, mysterious frontier, which even the best of our contemporary experts are only beginning to explore and understand. It's not just about strep throat and tics. Beware any doctor who claims to know it all. Your child (every child!) deserves the most objective and thorough process of differential diagnosis possible. Delayed treatment, absence of treatment, or wrong treatment can have devastating consquences. By all means, keep exploring!

 

Tenacity

[Megs_Mom]

For a long time, we also thought our daughter was not classic PANDAS (she may actually be PITANDS) for a variety of reason - one of which was that while non-functional without a lot of help, she was not "raging". She was screaming in terror or fear, or going to bed - but she was not hitting me, etc. It started for us at 3, then had a long remission. At age 6 and 7 we muddled through until she was finally diagnosed by a professional.

 

It got worse every time for us. I would take it very seriously, and try to find him a good PANDAS doctor for a real evaluation.

[thereishope]

Welcome. You mentioned that you have that doubt of being PANDAS due to the blinking eye tic prior to the major onset. It could be that the first "major onset" wasn't necessarily his first exacerbation. I wouldn't let that be a reason to rule out the exploration of PANDAS. Many on this forum can tell you their own more "chronic" stories where there wasn't an explosion or there are others, in hindsight, realize more minor problems occurred before the first big explosion.

 

Out of curiosity, is there is history of Rheumatic Fever in your family? It's not necessary, but some find that in their family historyy. Or a history of other autoimmune disorders?

[Fixit]

Welcome. You mentioned that you have that doubt of being PANDAS due to the blinking eye tic prior to the major onset. It could be that the first "major onset" wasn't necessarily his first exacerbation. I wouldn't let that be a reason to rule out the exploration of PANDAS. Many on this forum can tell you their own more "chronic" stories where there wasn't an explosion or there are others, in hindsight, realize more minor problems occurred before the first big explosion.

 

Out of curiosity, is there is history of Rheumatic Fever in your family? It's not necessary, but some find that in their family historyy. Or a history of other autoimmune disorders?

 

was our only thing with strep till age of 3-5....then no eyeblink....just shoulder shrug/roll...till age of 5- 9,,,, then this last onset...

 

now with illness i would say definate, moody, oppostiational....sometimes i wuold walk on eggshells...but not what some have had to deal with

 

doesn't like change,,,now that i know stuff..he does have sensory issues..chews on shirt...touching things as he walks by...used to me more add/adhd ...but not anymore.....

but all of these can be easily dismissed...and they were not a real issue, difficult when you see easy children...but my child is easier than some "healthy" kids who are just bad and rude

[sf_mom]

Lynn:

 

Taken from your post: pink eye in January....... February of 2010 the eye blinking came back.

 

JUST SO YOU KNOW PINK EYE CAN BE STREP RELATED. It takes approximately 2 to 3 weeks for titers to start rising. Our sons TICS started three weeks post strep throat.

 

You need to check for strep!

 

Bacterial conjunctivitis symptoms are: red eye(s), sticky discharge, gritty or foreign-body sensation and the eyelids may be stuck shut in the morning. Vision

is usually not affected. The most common types of bacteria causing the infection are staphylococcus (staph) or streptococcus (strep). If the discharge is severe, gonococcal (gonorrhea) conjunctivitis must be considered. Bacterial conjunctivitis is not related to the common cold or flu.

 

-Wendy

Edited June 9, 2010 by SF Mom

[thereishope]

Have you seen the thread about OCD in young kdis as experienced by PANDAS parents on this board? After reading,many are surprise their child had more OCD tendencies than they realized.

 

http://www.latitudes.org/forums/index.php?...ic=6153&hl=

 

 

Also, some PANDAS kids will find relief with Ibuprofen. Something to try if he can take it. It doesn't work for all PANDAS kids, but if it does...well...it tells you inflammation is going on.

[saidie10]

Hello Everyone,

 

This is my first post to the PANDAS board. I have been posting over on tourettes/tics and people have mentioned to me about PANDAS and strep testing. I have read about PANDAS, but am still very confused and am unsure if the details of my son’s situation apply. So, I’d like to share my story and see what individuals with a PANDAS history think as far as pursuing testing for my son.

 

My son is 4 years old; he will be 5 in July. Back in August of 2009 he started having excessive eye blinking, we took him to the pediatrician and he said it was common and would go away on its own and 2-3 weeks later it went away. Then in February of 2010 the eye blinking came back and on April 18th (yes I remember the exact day) things spiraled out of control literally overnight. He started having multiple motor tics, a verbal humming and personality changes. He has always been a very sweet, kind, happy and sensitive little boy and in addition was extremely independent. The day the more complex tics started his independence went out the window, he needed constant attention and interactions with us and started hugging us all the time and needing reassurance. Also, he started exhibiting mild OCD symptoms, mostly a fixation with numbers and counting, but other things have surfaced too. He has always been a very healthy child, never any major illness or strep. He’s never even been on medications or antibiotics except for pink eye in January. He does have seasonal allergies which run in our family and his tics do seem to respond to Benadryl (which my pediatrician recommended – but we don’t give it to him every day). The only other thing worth mentioning is that the same week as the major onset he had his first tooth filled and it was a VERY, VERY traumatic experience for him. That was on Tuesday and the onset occurred on Sunday of that same week.

 

In the past two months, we started him on supplements, changed his diet and got him hooked up with a therapist and the tics seem to be improving, but the dependance and OCD is still there. We took him to a neurologist last week and she said he is mild and basically diagnosed him with chronic tics (even though he has both verbal & motor). He is still very compliant (other then a few age appropriate responses to not getting his way). He does not have any sleep issues or rage issues and his pre-k teachers barely notice any difference him.

 

Anyway, from what I’ve read so far it seems that rage/behavior issues go hand and hand with PANDAS, plus he did have eye blinking six months before the major onset, which it what makes me think it doesn’t apply to us. That said, I want to make sure I’m covering all my bases.

 

We have no family history of a tic disorder.

 

Thanks for reading and your feedback is very much appreciated!

 

~Lynn

 

I think you should DEFINITELY look into testing for PANDAS! Rule it out so your child can get the proper treatment one way or the other. My child's first tic was eye blinking and it came and went for about 6 months after an Impetigo infection. It was not until the spring of the following year that the more severe tics started and not until the last confirmed case of strep that the OCD started suddenly. A lot of children are asymptomatic. Have your child tested ASAP!

[matis_mom]

Lynn,

I am sorry I did not have the time to read all the responses but here is what I have to contribute...

1) My son had the tics of an on just like yours, apparently not related to anything

2) I believe pink-eye can be caused by strep. My son started exhibiting OCD when we were visiting my sister and her kids all had pink-eye. My son started washing hands every 5 minutes (to avoid contagion, I thought, but it was very ocdish)

3) Later after a bad case of flu (with maybe strep too?) he started going downhill.

I can put all these things together in retrospect, but while you are going through it you do not know any better. But, coming from someone who's had the opportunity to look back and see the big picture, I am pretty confident your son is a PANDAS candidate.

I also wanted to mention that my son, as far as I knew, did not have strep except for maybe once. Well, since we started this PANDAS journey we have discovered that in our family many of us simply do not show any symptoms of strep. I take them all in whenever my PANDAS ds is acting out, and we always have one (or more!) testing positive for strep.

So, I would strongly encourage you to get everyone in the family tested for strep (even if they seem perfectly fine), and also run titers (bloodwork to look for antibodies).

 

Good luck in your journey!

 

Isabel

[Lynn777]

Thank you all so much for your replies, I really appreciate it and based on the feedback I'm honestly thinking of having my son tested. My pediatrician is "fairly" open minded, so I'm going to start with him and take it from there.

 

To answer a few of the questions...

 

My youngest son was not tested for strep at the onset of symptoms. However, my older son was very sick for almost a month back in January - he had a sinus infection, bronchitis and sore throat. He was tested for strep - throat culture & blood, both were negative. It's interesting to me after reading some of the comments that my younger son was exposed to illness (although not necessarily strep) both before the initial eye blinking episode in August 2009 (he had a very high fever/virus and the croup) and also in February 2010 before the major onset episode (he had pink eye, dental work and as mentioned his brother was very sick in January).

 

We do not have a history of rheumatic fever that I am aware of. The only family history we have is IBD diseases like crohns, colitis, IBS, diverticulosis, etc. My son does complain of tummy issues and has had boughts of diarrhea, but my ped told me that wasn't in any way related to this. In addition, I have a history of Ménière's disease (chronic vertigo) and allergies, asthma, bronchitis and lots and lots of strep for me.

 

I'm leaving for vacation tomorrow, but definitely plan on reading more on the "helpful threads" and checking out the flowchart.

 

Karen, you mentioned that you are working with a "Dr. T" in New Jersey. Would you recommend him/her? I live in PA, so NJ is pretty close to me. Any additional information would be helpful.

 

Best to all of you and thanks again!

 

~Lynn