New PANDAS?

[lorib]

Hi...I'm new here...I apologize ahead of time for the long post, but you all seem so helpful and informative - I could really use some help!: One of my daughters had gone to the pediatrician Feb 1 with sore throat, had neg quick test and positive lab culture-was treated with 10 days Amoxicilin. 2 weeks later on Valentine's Day, my son who just turned 6 and has severe food allergies, broke out in hives that wouldn't go away. So I took him to the ER and while there he said his throat hurt, so they strep tested him. It was negative, but they gave him Prednisone & Benadryl for 3 days for his hives. Two days later the hospital called back - his strep culture was positive...They put him on Amoxicillin for 10 days. The last week of Feb, he started saying that he felt like he was going to give someone the middle finger (I guess he heard that at school)...he became worried that he would point it, so much so that by that weekend he was walking around with his hands in fists...and then his feet. He asked me if he cut his middle finger off, would it grow back? He also started being really mean to his sisters (not like him) and confessing to things that he had done a while ago (Mommy, remember when you told me not to eat in the family room - well the day after Christmas, I did). My husband and I were trying to guess what could be wrong and we thought it was like OCD (there's no history in either family), so we looked it up and read about PANDAS. We took him to the pediatrician and as soon as I told her about the middle finger, she said PANDAS! She re-strep tested the whole family, and put my son on Omnicef. All quick tests were negative, but another daughter, who had no symptoms at all came back with a positive lab culture (now being treted with Amox., as well). My son, who ended up having a negative lab culture, is still on Omnicef, but not really getting better. The fists are not as pronounced, but he's still confessing and now when you ask him a question, he won't answer directly - He prefaces everything with "I think"...Are you hungry. "I think I am"...Did you like that "I think I did". When I ask him why, he says he's afraid of lying. Some nights he hits himself in the head and cries that he can't stop his brain from thinking these things. I've made an appointment with a neurologist which is at the end of March. My heart breaks for him.

 

Does this sound like PANDAS or something else? I'm going back to the pediatrician Monday...should I have her test for anything else? If it was PANDAS, should his symptoms have cleared up since he is now strep negative and on antibiotics (Today is day 9 on the Omnicef)? Thanks for any guidance, and again, I'm sorry for being so long.

[P_Mom]

Sounds like 100% PANDAS to me. Take him to the doctor and get his strep titers ran ASAP.. INSIST on ASO and AntiDNAase B titer..this is very important to get done now..as waiting may cause a missed diagnosis. Other reasons or triggers for this can be addressed later if needed, but, your son has had strep recently and the titers need run ASAP. No, not necessarily, (answering your other question) antibiotics are not always the answer for PANDAS, although many times they help tremendously...it is so very different in every case. If strep is eradicated, and your son still has symptoms... a 5 day course of prednisone can "cure" your son temporarily if he has PANDAS, and also give you an answer to the cause of this OCD.

 

Its a beautiful day in PA., I'm going outside to play. Talk to you all later!!!

 

Kelly

[P_Mom]

oh, one more quick thing...don't be surprised if your neurologist is no help to you...even denying PANDAS exists.

[lorib]

oh, one more quick thing...don't be surprised if your neurologist is no help to you...even denying PANDAS exists.

 

 

Thanks for the info...I actually picked a neurologist from another post on this site - a Dr. Trifiletti - that specializes in PANDAS

[P_Mom]

Oh my gosh...fantastic on the doctor thing. I know of a PANDAS girl she has helped. I am so very happy for you! Please let me know what she has to say!!!

 

Kelly

 

What area are you in??

[P_Mom]

I mean "he."

[lorib]

Oh my gosh...fantastic on the doctor thing. I know of a PANDAS girl she has helped. I am so very happy for you! Please let me know what she has to say!!!

 

Kelly

 

What area are you in??

 

You know - this forum has already been so helpful to me - I got the Dr.'s name from here... and I've since read papers written by this doctor...he seems to be well versed in PANDAS...I live in Northern Bergen County...by Paramus...

[lorib]

I mean "he."

 

I didn't even catch the "she"!

[P_Mom]

Where the heck is that?

[lorib]

Where the heck is that?

 

Hi - It's about 12 miles away from NYC...

[lorib]

Sounds like 100% PANDAS to me. Take him to the doctor and get his strep titers ran ASAP.. INSIST on ASO and AntiDNAase B titer..this is very important to get done now..as waiting may cause a missed diagnosis. Other reasons or triggers for this can be addressed later if needed, but, your son has had strep recently and the titers need run ASAP. No, not necessarily, (answering your other question) antibiotics are not always the answer for PANDAS, although many times they help tremendously...it is so very different in every case. If strep is eradicated, and your son still has symptoms... a 5 day course of prednisone can "cure" your son temporarily if he has PANDAS, and also give you an answer to the cause of this OCD.

 

Its a beautiful day in PA., I'm going outside to play. Talk to you all later!!!

 

Kelly

 

 

Hi Kelly,

 

I just wanted you to know that I took your advice and brought him to the pediatrician the next day. She was willing to run the ASO and AntiDNAse B titer tests. His ASO was 199, his AntiDNAse was 680. I'm not really sure what those numbers mean at this point, but it's a baseline for the neurologist (3/27). Thanks for the info!

 

Lori

[P_Mom]

That means his titers are elevated and PANDAS will probably (should be in my opinion) be diagnosed. Normal for both tests is usually around 200 or less. ( labs vary, some we used had normal at 100 or less, but the top was 200 or less.) I think it would be safe to say you can now know what you are dealing with. Your neurologist MAY be of no help, ours wasn't, we had to search high and low for a PANDAS doctor. Neurologists seem to be the most closed minded when dealing with PANDAS. You are in NY, I think there are good PANDAS docs there, but, I forget which ones. Can anyone help her with that?

 

Kelly

[P_Mom]

Sorry, we already went through the doctor thing. You got a good one, best wishes and keep us posted on his progress, I am glad you have answers now!

 

Kelly

[evie]

Welcome to the board LoriB. I am sorry for the difficult times you are having, but as a newcomer to PANDAS you should be aware that it is generally a long road of ups and downs. I hate to sound pessimistic, but unfortunately there are no REAL cures for this disorder. Hopefully your son will outgrow it early enough.

 

I wanted to let you know that I had taken my son to Dr. Trifiletti a couple of years back. I am also in NJ and I had researched a lot before going to him.

He was a really nice guy - very knowledgeable, however, as neurologists go, he wasn't into antibiotics - only meds. He had us try Clonodine (a blood pressure medication that controls ticcing) which made my son into a zombie and put him out like a light bulb within 3 minutes. We were not really interested in going that route - my son's tics are generally mild, and so we chose not to visit him again.

 

We've tried other approaches including a GFCF diet, supplements, anti-Candida diets and antibiotics. I can't say that either of them have really worked for us because we still have flare-ups all the time.

 

Now we are going through a rough couple of weeks. I am still working on something to get my son's symptoms under control. I am looking into a steroid burst (as mentioned above - and possibly IVIG.

 

What was the dose of prednisone, DKRESmith? I'm not familiar with that type of treatment. What are the risks and/or side effects of giving cortisone to such young children?

 

Good luck lorib. I hope that all works out for you. You have definitely come to the right place to share and get loads of advice. The people on this board are wonderfully supportive, not to mention full of information.

[P_Mom]

Evie,

I can't tell you the dose, I just know it is a five day course, called a "steroid burst." It is considered safe and there are essentially no side effects for such a short term dosage, but, the opposite is true for long term usage and therefore should not be used long term.