Is it PANDAS?

[worriedmommy]

Hi there. I'm new to this forum...and also very new to PANDAS (or what we think is PANDAS). My dd's story is as follows...

 

As a baby she got many ear infections and had tubes put in and adenoids removed at 22 months. Then at 4 years old she had her tonsils removed b/c they were huge & causing sleep apnea. --Up until last year, I do not recall her having strep throat...although my ds, who is 2 years younger than dd, had it 3 times before he was 3. I also have had it twice in the past 3 years...most recently in Sept 2009.

 

Ds most recent strep was Scarlet Fever in April 2009. He recoverd w/Amox, and a week later dd started scratching at her privates. (She has had a history of itchyness down there since she was in diapers. Dr always said it was yeast, although Nyastatin never did anything to help.) By 33 months she was in underwear full time, and itchness/redness continued. I didn't understand since she was in undies. Twice dr perscribed antibiotics...and rash/itch went away immediately. (Didn't know until I just read her medical records that notes said suspected strep rash). Unfortunately, there were many other times (over an 8 month period while she was 3 that other Dr, blamed redness/itch on poor wiping, etc.

 

Then when DD turned 5 itch/redness came back with a vengence!! She was literally clawing at herself. (This started within 1 week of ds having Scarlet Fever). It took 2 months for Dr to run a strep test to then realize she had Group A peri-anal Strep. Amox was perscribed, and she was better within days. --MAKES ME WONDER IF ALL HER RASHES AS A BABY WERE STREP!!

 

I came down with strep throat in Sept 2009...and 10 days later dd was itching again. Had her swabed, and not only did she have peri-anal strep...but throat culture was also positive for GAS...with no symptoms. Again, Amox cleared everything up. (Whole family was also swabed to rule out a carrier...and none of us are.)

 

The last week of Oct 2009, my daughter came down with presumed H1N1. Made a full recovery after a week, and was healthy as can be for the next 7-8 days. Then she came down with a 103 fever that lasted 5 days. She had no other symptoms other than the fever. We waited it out...and by day 6 she got get better. (In hind sight I wish I had brought her in to have her throat cultured. Sigh....

 

Within a week of her fever going away in November, she started to cough!!! This was a dry, non-productive, single cough that she would do over, and over, and over, and over...all day!! Literally thousands of times...and it would stop completely the minute she fell asleep. I brought her to the Dr who said it was a habit cough...to ignore, and it would go away. He also said Benadryl might help...which it did...b/c it put her to sleep! What did not help was ignoring...it did NOT go away.

 

By early Dec 2009, I had heard the "sneezing girl" story, and it was my first time hearing of PANDAS. When I learned that this girl's sneezing was thought to be related to strep, I couldnt' believe it given our year of strep. I immediately brought her to the dr, had her throat swabbed (which came back negative) and asked for antibiotics. 3 days into the Amoxicillin, her cough was down to 1 every few minutes...dramatic improvement. Unfortunately, she caught a cold by day 5 and started with runny nose, junky cough, etc...so that by the time she was better, her Amoxicillin was already done, and within a week or so her dry "habit cough" was back in full force.

 

By Dec 31 I brought her back to the Dr, at which point they said the cough was likely a tic, and this could be the onset of Tourettes. I was devastated by this news!

 

Over the 4 day New Year weekend we decided to go wheat/gluten free, just to see if it would help. For whatever reason it did. There were a couple of days she only coughed 20 times. We brought her to the allergist on 1/4/10, and had her tested for wheat allergy...came back negative. Started eating regular diet, cough came back. --Still not sure what connection, if any, wheat, gluten has to this.... Actually just had gluten/celiac bloodwork done and are awaiting results.

 

Allergist thought maybe silent reflux or post nasal drip was the cause...reluctantly, we started her on antihistamine & reflux medications. 2 weeks later, brought her to the ENT (to get his thoughts on the reflux theory). He wasn't convinced about her having reflux, but was intrigued that her cough went away in Dec while on Amox. Her perscribed Augmentin (14 days) to see what happened.

 

By day 4 of Augmentin, I lost my cool and bribed my dd with money to stop coughing. To my amazement, she did immediately. Odd b/c we had tried bribing her to stop coughing earlier in the month, and she could not stop. Over the next 3 days she didn't cough, but started clearing her throught. By day 7 of Augmentin, we told her she could not cough or clear her throat, at which point she was able to stop all noises. We had silence for almost 2 weeks!!!!

 

Then, Super Bowl Sunday came. My dd wen to a Bday party, and I'll never forget what happened. Multiple complex motor tics came out of no where. Knee bends, stomach jerks, facial grimaces, shoulder shrugs and neck extensions. It was heartbreaking. I found out the following week that there were 5 confirmed cases of strep throat in her kindergarten class (which started the week leading up to this b-day party)...the number of confrimed strep cases in her class climbed to 11 by the next week.

 

In the days following the b-day party her tics ranged from every 3-5 seconds (yet went away when she slept). We have since started high dose Amox, and have seen some improvement (we're on day 11, and the tics range from every 5 - 90 seconds...and appear less severe). Although books, tv and meal time seem to make them pick up. Maybe b/c she's sitting still???

 

My dd's pediatrician, is dumbfounded. He's seen Tourette's...but never this severe so suddenly. We had her ASO titer done and it was normal (13)...this being said, we she had 3 positive group a strep cultures since July 2009.

 

We're currently awaiting seeing a neurologist in Boston who specializes in PANDAS. Any insight any of you have would be greatly appreciated. As a parent I so desperately want this to be something we can treat and make her better. Not that PANDAS is something you want your child to have, but at least there is treatment...so it seems a bit less hopeless than a dx of TS. This is all so new to me, and has completely turned my whole world upside down. Since we don't even know what her dx is, my brain is going in every direction. Does this sound like PANDAS to you parents of PANDAS kids? If so, any advise when seeing the Neurologist? Thanks!!

[Suzan]

Hello, I would say it certainly sounds like PANDAS! I'm very glad you will be going to see a specialist. Hopefully one who does not think titers have to be high for a diagnosis. My girls have basically normal titers too even with documented strep. I am sorry for all you and your daughter are going through and I am glad you have found this forum. I know you will learn a lot by reading older posts, all of the great info that has been put together by the parents here.

 

Susan

[thereishope]

Welcome.

 

Reading your story, makes me wonder if those diaper rashes were strep too.

 

Here's some info on PANDAS kids as it would pertain to your post....

 

-Some PANDAS kids will react to exposure only. This would explain an rise in tics with exposure to strep in school.

 

-I wonder if the cough was a habit or tic that morphed into OCD. A tic cannot be stopped by a bribe, but sometimes an OCD habit can. Soem of my son's OCD was able to be controlled by him through bribes. Not many, but a couple.

 

-Because a cough is involved, you may want to also rule out Mycroplasma Pneumonia. This is also a trigger for PANDAS kids.

 

-Not all kids will have a rise in titers. Did she have a rapid strep and culture done prior to the blood test? If so, what was the result? Was this blood test done because of the classmates having strep? Taken from the PANDAS Fact Sheet

If the culture is negative, a blood test may be able to test for streptococcal exotoxins. A common blood test is Anti-Streptolycin O. While this test can confirm a previous strep infection, it cannot exclude a prior infection or a diagnosis of PANDAS. This test is affected by many factors and in one study over 46% of children did not have a rising ASO titer despite having colonized strep [shet2003].

 

If you have not had a rapid and culture done on her throat yet, do that. Even though the her titer test was normal.

 

Here are some links you may want to read...

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Would you mind sharing the name of the neurologist you will be seeing? If you wish to keep it private, I understand.

[sf_mom]

It seem like PANDAS to me...

 

Our son had a similar dry unproductive cough for a year and we were also told it would go away. On June 24th, 2009 he also had a high fever for 4 to 5 days and week later developed all kinds of involuntary body movements plus some mild OCD. He has been on Azithromycin since August and has had three IVIG treatment via Dr. Kovacevic. He is currently 110% better in some areas and we are fairly close to having him back to 100% in others (although he be on antibiotics until this is a distant memory). His only remaining symptom is a mild infrequent TIC when he is tired. Unfortunately, he was sick much later than we ever imagined.

 

I highly recommend you pursue treatment with a Dr. that treats PANDAS on a regular basis to fully abate symptoms and not waste much time with a Dr. that is unwilling to treat or doesn't fully understand PANDAS.

 

Keep reading and reading and reading and reading.... THERE is a ton of value information on this forum and also on PANDASNETWORK.org

[worriedmommy]

The neurologist we're going to see is Dr. Alcy Torres, at Children's Hospital in Boston. I saw on another post that he is treating some other PANDAS patients with IVIG, so my hope is that he is able to accurately differentiate PANDAS & TS.

 

All of dd's past confirmed strep cases were done by swab that went out for culture. It was just the recent ASO Titer test (taken days after the motor tics started) that was a blood test. The pediatrician did it after I questioned PANDAS given dd's history and the strep outbreak in her kindergarten class. He peeked in dd's throat and saw it looked OK, even though she said it was sore. He told me that a culture wasn't necessary b/c the ASO titer test would tell us if she had strep. ---Yes, I've since learned that ASO titers don't rise until 4-6 weeks after infection...and don't rise in all patience. I could kick myself for not having him culture her. I just didn't know then what I know now. At this point she''s 11 days into 1000 mg per day of Amox, so my guess is that if we had her cultured now it would come back negative even if she did have strep with the rest of her class.

 

I will look into Mycroplasma Pneumonia. I've never heard of it before. Any details would be appreciated.

 

While I know that tics cannot be stopped with bribes, I found it interesting since it was while on antibiotics that she was able to stop it when bribed. Weeks prior, when not on antibiotics, we had tried bribing...including piercing her ears (something she's been begging for), with no luck.

 

Thanks for your feedback so far. I have been scouring through old posts and am definitely learning a lot.

[sf_mom]

Certain Dr.'s who have been treating PANDAS for years believe............. that most TS is PANDAS. Unfortunately, these thoughts and theories have YET to be proved and it will not be proved during the timeframe in which your child needs treatment. There is a cure that is working for PANDAs if caught early and treated appropriately. Please do not let anyone convince you otherwise and waste years. Its seem like your daughter is young, had recent on-set and should recover 100% if she is treated correctly by a Dr. who is knowledgeable and experienced with PANDAS.

 

Wishing you all the best in your daughter's recovery. Keep reading the forum you will learn a ton and connect with wonderful parents.

[T_Mom]

Certain Dr.'s who have been treating PANDAS for years believe............. that most TS is PANDAS. Unfortunately, these thoughts and theories have YET to be proved and it will not be proved during the timeframe in which your child needs treatment. There is a cure that is working for PANDAs if caught early and treated appropriately. Please do not let anyone convince you otherwise and waste years. Its seem like your daughter is young, had recent on-set and should recover 100% if she is treated correctly by a Dr. who is knowledgeable and experienced with PANDAS.

 

Wishing you all the best in your daughter's recovery. Keep reading the forum you will learn a ton and connect with wonderful parents.

 

 

I wholeheartedly agree with SFMom (on so many things:) -- Go to see a doctor who is willing to treat the Pandas possibility--I'd recommend Buster's Flow Chart of treatment/symptoms to follow--Have the doctor consult with someone if they are not familiar with treating--IF your child reacts to antibiotics/and or a steroid burst--that is telling you something.

All the best to you--