is this PANDAS or Tourette's or other?

[ANRmom]

Hi all,

 

I need your input to figure out if my son hasa PANDAS or Tourettes or tics or other?

 

My DS 5y9mo was diagnosed with strep throat (via throat culture) and scarlet fever on 6.26.2011. He was put on a 10 day course of Amoxicillin. His strep and fever symptoms improved, but when I took him back for a followup visit on the 11th day, his strep test was still positive. So he was put on Keflex for 10 days. After that his strep test rapid and culture were negative on 7/16/2011. Somewhere along the way he started doing this vocal/coughing tic that was completely new. He has had tics in the past: eye blinking started when he was 2.5 yo; throat clearing started when he was 5 yo. This boy has been sick a lot in his childhood. Chronic ear infections (almost always treated with ABx), upper respiratory illnesses, constant congestion, etc. His eye blink tics very often coincided with him falling sick with something. In fact over the years, if he started blinking, my husband and I would remark to each other that "looks like he is fighting something". Usually his tics would last 2-3 weeks, at the most 4 weeks and then gradually disappear. This time, this new tic is still going strong. In fact it has gotten worse over the past 1.5 - 2 months. I have taken him back to get strep tests done and they have been negative (rapid and strep) on 8/15/2011 and 8/18/2011. Also, since last week, his muscles and body have been twitching and jerking in his sleep, thus not sleeping well either (he was never a good sleeper, but that could all be related to having chronic URI and otitis, too; also he grinds his teeth a lot at night). He is also more hyper and moodier than normal, and can be difficult to manage at times. I am guessing this is all related.

 

My husband googled strep and tics and found that this could be PANDAS. We are to see Dr. Latimer next tuesday, but just wanted to throw this profile out to you guys and see what you all think. His pediatrician has refused to put him on another round of ABx because of the negative strep tests and is not completely on board about the PANDAS diagnosis.

 

Please, I would love to hear your views and experiences relating to these symptoms. Please advise.

 

thanks

ANRmom

[HT's Mom]

Sounds like PANDAS to me. All you have described sounds like classic PANDAS, and very similar to my own son's childhood, altho he is 16 now. Our doctor is Dr. K in Chicago and he says sleep difficulties are very common for Pandas kids. Always asks extensive questions of d.s. about his sleep habits. Also that these symptoms start showing between 2 and 5 years of age, even if not recognized until later. You will find many different experiences on this site, but yours sounds like the "normal" pandas kid to me.

 

Good luck next week. It is great you are finding this now at a young age.

[nicklemama]

Sounds like PANDAS to me too. Our dr is also Dr K and he says the first 'real' PANDAS episode is often overlooked because its not as severe as the one that sends you looking and the child is young and its often thought to be a phase or not linked to strep or illness.

 

We just saw Dr K today for DS's 3 month post IVIG follow up and he asked DS how he was sleeping, lol. He is, in fact, sleeping MUCH better, among other things that are much better.

[EAMom]

Sounds like PANDAS to me.

 

Any handwriting changes, urinary frequency, emotional lability (I guess you said hyper/moody), or separation anxiety?

Edited August 24, 2011 by EAMom

[ANRmom]

Sounds like PANDAS to me.

 

Any handwriting changes, urinary frequency, emotional lability (I guess you said hyper/moody), or separation anxiety?

 

 

His fine motor skills have always been a little lacking. his writing is slowly improving but is not his strength. neither his coloring. A lot of the time its a bunch of squiggles.. but its getting better. I always just assumed he's lower end of the curve for that, given he is higher end of curve for reading.

no noticeable change in urinary frequency. Emotional lability yes... a little bit of a roller coaster. We have had two great days (yesterday and today so far)... but before that .. very high maintenance and sour moods.

 

Separation anxiety is not ongoing.. he had a couple of episodes in mid July, when he hung onto my leg saying mommy mommy. Very uncharacteristic.. but hasnt happened since.

 

BTW: also he has a heightened sense of smell and also music. who knows this is all related too.

 

thanks

ANRmom

Edited August 24, 2011 by ANRmom

[Kiera]

Most likely PANDAS! My ds's smell always gets hightened with pandas flareups, sometimes even has to leave the room around certain foods that usually are no problem. (he does have sensory processing disorder, but the smell thing only shows up with pandas).

[ANRmom]

Sounds like PANDAS to me. All you have described sounds like classic PANDAS, and very similar to my own son's childhood, altho he is 16 now. Our doctor is Dr. K in Chicago and he says sleep difficulties are very common for Pandas kids. Always asks extensive questions of d.s. about his sleep habits. Also that these symptoms start showing between 2 and 5 years of age, even if not recognized until later. You will find many different experiences on this site, but yours sounds like the "normal" pandas kid to me.

 

Good luck next week. It is great you are finding this now at a young age.

 

 

Thanks for your input!

Two follow up questions:

Does anyone have any advice on what we should be preparing to take or discuss with Dr. Latimer when we see her on Tuesday?

What is the prognosis for a kid that I have described? I'm trying to look ahead and be prepared for what may be to come.

 

thanks again everyone. your input is very valuable.

 

ANRmom

[ANRmom]

Hi all,

 

just a quick update and a call for advice:

 

We saw Dr. L at the end of August, she thinks my DS nearly 6 yo is a PITANDS case of severity 1/10 and she put him on PenVK 250 twice a day prophylactic to ward off another strep infection. She ordered a bunch of test, and everything came back normal (including strep titers). the only thing that I thought that was out of ordinary was that he tested PRESENT for IgG band p41 for the Lyme test via Western Blot. Dr. L said that it did not concern her and that a lot of kids show positive on that band. But I am wondering if before we explore the tonsillectomy route (history of chronic colds, ear infections and upper respiratory illnesses since 6 months old; recent diagnosed and treated strep in July 2011, and according to Dr. L large tonsils), we should figure out of the IgG p41 band means anything substantial. Anyone have any advice? Any Lyme docs in the DC-MD-NoVA region that I should run the WB results by??

 

Thanks

ANRMom

 

 

 

Most likely PANDAS! My ds's smell always gets hightened with pandas flareups, sometimes even has to leave the room around certain foods that usually are no problem. (he does have sensory processing disorder, but the smell thing only shows up with pandas).

[LNN]

Lots of kids do test positive on band 41 and not all have lyme. But you tested with a standard WB, which doesn't look for certain bands (e.g. 31 and 39) that are highly suggestive of lyme. So using standard WB to rule out lyme isn't a good measurement. If you really have concerns and think lyme is worth looking into, Igenex will give you a better (tho not definitive) picture. There's also a new lyme test coming out that cultures actual lyme bacteria, not just looks for antibodies to lyme. It's new - just rolling out now, kits being sent to LLMDs. Cost is about $500, not clear if insurance will cover or not.

 

Given your son's tics being a canary in the coal mine, with more than just strep, you may also want to look into a condition called KPU or pyroluria. One lyme doc speculates a high number of lyme patients who can't seem to fight the lyme may have KPU. There's a current thread on the subject. It's a type of zinc deficiency that causes the immune system to be less robust and allows all sorts of bugs to set up house. Poor sleep is a symptom. Here's a more complete article http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf There's also a great video - one is 7 min long and the other is over an hour. If you look into it and decide you want to dig deeper, you can search for the videos on the lyme forum or PM me and I'll send you the links.

 

Can't really tell you if it's something to pursue. Just wanted to pass it along FWIW.

 

BTW - prior to our lyme/KPU dx, we did the T&A for Pandas and it was helpful. DS likely had chronic strep in the adenoids. But again, it's highly individual and you just have to trust your instincts as to whether it makes sense in your situation.

[eljomom]

LLM--do you see Dr. Klinghart?

 

ANRMom---we were given the same advice by Dr. L as well, with no clear strep history. She also said dd's tonsils were big, but the ENT she sent us to said they are "small.....1 on a scale of 1-4). I've heard of enough people who's kids got worse after Tonsillectomy to give pause, especially since we aren't chasing strep....

[LNN]

No. Klinghardt is on the west coast. We're in New England. The drive to Bethesda was bad enough! Our LLMD is local but follows or adapts some of Klinghardt's protocols. The KPU protocol is one of them.

[ANRmom]

Hi Eljomom,

 

which ENT did she send you to? I may make the appt. to see one anyway, to get another opinion.

 

thanks

ANRmom

 

 

 

LLM--do you see Dr. Klinghart?

 

ANRMom---we were given the same advice by Dr. L as well, with no clear strep history. She also said dd's tonsils were big, but the ENT she sent us to said they are "small.....1 on a scale of 1-4). I've heard of enough people who's kids got worse after Tonsillectomy to give pause, especially since we aren't chasing strep....