Pandas Symptom?

[Chemar]

Wendy, you don't have to worry about the prednisone - its not that high of a dose and only for a short time (5 days) - it absolutely is not a big deal. (I'm a nurse and I am usually not real crazy about giving meds to my kids in general) but this is benign - nothing to worry about. It's really only a diagnostic tool to see if there is a change of some kind - if there is, its a better insight into whether or not the IVIG would be effective for that person.

 

Pat I have to respectfully disagree with that

 

My husband is in his sixties and has TS. He was in an autoaccident where someone smashed into the driver side and he has herniated discs etc. Ortho insisted on a five day prednisone burst to alleviate the sciatic pain/inflammation

I pointed out the possible triggering of tics from steroids. Ortho told me just that! "it is small dose, tapers off over 5 days. wont do anything but good"

Husband decided to try and is so very very sorry he did.

 

 

my husband had HORRIBLE reaction to it and by day 3 was so ill we had to go to ER

This was months ago and he STILL has not recovered

His tics are worse than they have ever been in his entire life

He also lost some cognitive ability

 

PLEASE PLEASE PLEASE to anyone who suspects their child may have TS, be VERY VERY cautious about a steroid burst!!!!

I am not saying that what happened to my husband will always happen to anyone who has TS and steroid burst. But honestly, I dont personally feel it is worth the risk to end up with what has happened to my husband.

):

[P_Mom]

MyRose,

 

If your daughter is symptom free....I don't believe you will notice a change with anything you try right now. (antibiotics, steroid burst)

Unfortunately, at this point, it is a watch and wait game. IF things take a turn for the worse, it is then I would try the above.

 

Also, check for strep. (cultures, titers)

 

Here is my understanding of the steroid burst for PANDAS:

 

When a PANDAS child first starts a steroid burst, you MAY notice a worsening of symptoms initially. When the steroids are implemented, there is a struggle between the immune system and the steroids for control. The immune system initially ramps up, trying to retain control, resulting in increased symptoms.....keeping on the burst will USUALLY result in the immune system "giving in" and subsiding. (result...improvement in symptoms) Sometimes, this improvement is not seen until days after the burst is finished.

If you choose to do the steroid burst.......keep with the full 5 days, even if you see an initial increase, this is very common.

SOMETIMES, stopping the steroid burst prematurely during the initial flair can result in the immune system "winning" and staying in ramped up state for a while.

 

This is for PANDAS kids......I am not applying this to TS.

People with TS may have a completely different response for totally different reasons...... so, yes, do be careful.

However, if your child has a PANDAS diagnosis, it has the potential in bringing substantial symptom relief, especially if your child is in a severe episode from strep. (given AFTER the 10 day course of antibiotics, of course)

 

Take care!

 

Kelly

[myrose]

Thanks so much everyone for all the great feedback. My daughter complained of a sore throat yesterday before bed and this morning she woke up and almost cried that it hurt so bad. I called the doctor and we are scheduled today for 1:30. I already know how this is going to go......she will refuse to open her mouth and they will want to hold her down and force her....this stresses her out to the MAX and I am probably going to tell them to NOT do it. Last month they tried to HOLD her down and got the stick in a bit, but how can one honestly know if they swabbed the correct place! I will let you know how we make out. She says already that her throat is starting to feel better but I honestly thing she says this because now we are going to the doctor. I wish there was an easier way to check for strep.

The first time she was checked, they were not gentle and she literally vommited her breakfeast! That one time has ruined her of ever wanting to do the rapid test again. We are on our way now and I already have a pit in my stomach just thinking about this whole appointment!

[EAMom]

Myrose...

Gee I wish there was just ONE thing that stood out from TS/TICS/Pandas. Just so one would know which path to take and what to fight for.

 

Did your dd ever have urinary frequency? One PANDAS study found increased urinary frequency in 58% of PANDAS kids. Another study took a group of kids with tic/tourettes, separated out the PANDAS kids, and found that only 2% of the NON-PANDAS tourettes kids had urinary frequency. So, if your child has urinary frequency, it is highly likely it's PANDAS. (If there are no urinary symptoms, it could be either.) With our dd the urinary symptoms were subtle, having to use the bathroom multiple times just before bed. When she was 4 she had a more dramatic example of these urinary symptoms, acting like she had a urinary tract infection (UA and urine culture neg) which preceded a high fever/cough by a couple of days. No throat culture (or antibiotics) were rx'd and these severe urinary symptoms went away after the fever.

 

RE antibiotics....Antibiotics might also help if there is a (chronic) carrier state with the strep, I think this is what happened with my dd...eg. strep hiding out (intracellular) in the throat (or could be the sinuses etc.) If my dd had not had the tooth extractions which caused her symptoms to ramp significantly over several weeks (symptoms started end of Jan with 3 day FEVER, got worse end of Feb. with extraction 1, got much much worse beginning of March with extraction 2...positive throat culture end of March, 2 mo. post- FEVER), I don't know if we would have gotten to the point of full blown classic Anorexia Nervosa.

[myrose]

EAMOM...YES the urine thing! It only happened at night not during the day as much. During the day I would always have her go pee before we left home. (Hate using public bathrooms) Anyhow once we left the house and were in a store or wherever...she would say I think I have to go to the bathroom but she would always add that she was not sure and always asked me not to get mad if she didn't actually pee once we hit the toilet. (She knew I hated the public bathrooms) I felt bad after I found out it was not a curious 4 and 5 year old wanting to check out all the bathrooms!

 

Anyhow the worst was only at night. Every time she got into bed she always got out of bed 4 to 6 times and tried to pee. It got to the point that she would bring a water bottle with her int he bathrooma and just sit on the toilet until something came out. It kept her from falling asleep and I was just about at my wits end with it!!!!! Her urine cultures always came back fine as well.

 

Then when she was put on antibiotics (Zith) for a precautionary (until culture came back) the urine thing went away!!! It never came back after that. Still now at night if she gets out of bed to go pee...I get a little sick feeling in my stomach thinking that it is coming back.

It was horrible and went on for a long time! Her neuro's nurse practioner said it was OCD related (repeated thinking she had to go)

I told her she was CRAZY!!!!!!! I did not have to be a doctor of any kind to know that this was a real issue for my daughter, I was positive it had NOTHING to do with OCD. I am not saying it can not....but I just knew in our case it was not. Moms always know I guess.

 

We went to the doctors today....did a rapid step. She was an emotional MESS! They somewhat got the stick in there but who knows where it actually touched again. She is sending it out for a culture anyhow. I did get a script for Zith...200mg for 5 days.

She said to start it if she started with another fever or if her throat looked more red. (It looked real red to her today)

The rapid came out negative. My daughter has complained all night that her throat is hurting worse. Even during her soccer game tonight.

She wouldn't even eat or drink because she said everything (including water) burned it. She has never complained of it hurting before. Her last positive strep came without any symptoms at all.

I decided to fill the script on the way home and after we returned home tonight I gave her a dose. I guess now I am scared of untreated strep and do not want to wait until Monday for the culture. Its funny though how I have a sore throat as well today. I did a rapid on myself with the home kit but to be honest I felt as thought I could not even rub that swab int he right place without tossing my cookies!

My eyes started to water from the gagging and then I just had an automatic gag even when I just opened my mouth.

I will try againt tomorrow. Do you rub the swab on the uvala?? Is that what that thing is called LOL

Where exactly should I rub the swab? both sides as far back as I can??

 

At her doctor today they just pushed it back while she was crunching behind me SCREAMING! They had no view of where it touched (this I know for fact)

Lastly the last ped let her swab at one appointment and commented that it would be all over the mouth if she had it. I have heard that this is completely false. I am beginning to come to the conclusion that every doctor has something different to say and their own theory for everything....JUST FABULOUS! Isn't it!!!!! Especially when you are dealing with these kinds of things!

[EAMom]

Myrose...I've read you want to swab the tonsils.

When dealing with patients with sore throat, sampling both tonsillar surfaces is enough for the detection of group A beta-haemolytic streptococci.

Here's the paper: http://cat.inist.fr/?aModele=afficheN&cpsidt=17978451

Here's a link with pictures of tonsils: http://en.wikipedia.org/wiki/Tonsil

I hope that helps! gag