lorib

Hi Everyone, I had posted about two weeks ago regarding my son's strep infection and his new tics/ocd symptoms. His pediatrician diagnosed PANDAS. He finished his last course of Omnicef about two weeks ago. His symptoms have definitelty decreased, but he is still confessing to everything under the sun & has some hyperactivity (spinning & shaking his head back & forth - mostly at night). He's also still clenching his hands into fists occasionally. I've learned a lot in the past few weeks (mostly from this forum - thank you all!). I can't say that I understand all of it, but this info has definitely helped to prepare me for a visit with Dr. Trifiletti (a neurologist that seems to be familiar with PANDAS) tomorrow morning. Before I go to the appt., I just wanted to post some thoughts and see if any of you have any opinions/advice, etc... One night, during the few weeks that his symptoms were really bad, he got a 103 fever - he usually doesn't get fevers and never this high. I gave him Motrin and he fell asleep, but was flailing arms and legs and head while he slept. Fever broke, then started climbing again. I gave him Tylenol, fever broke and no more shaking. He slept thru the night and woke up the next day as if nothing had happened. No more fever, no other symptoms, nothing. My pediatrician thought that this was unrelated to the strep; she said it was probably a virus, but no one else in my house got anything. It was weird. I mention it only because I'm curious to see if anyone else had anything similar happen during time when PANDAS was active. My son (who just turned 6) has severe food allergies (Peanut, tree nut, soy, sesame, eggs), as well as a lot of environmental (grasses, trees, etc) ones. He was diag. when he was 5 months old (thru IgE testing) and just recently got tested again. The day he got strep tested, he had broken out in patches of hives all over his body (not a rash). Benadryl (which usually eliminates the hives, did not this day - which is why I took him to the hospital where they tested him for strep - which came back from the lab as positive). I'm thinking those hives were from the strep - his immune system reacting to it. Does that make sense? Could you get hives from strep? Could he just have an overreactive immune system? Should I have his allergist IgG test him, as well? I also read a thread here about high histamine levels and the sulfate ion system. I'm wondering if that could be part of this puzzle, as well. I also read about MTHFR here. I have that gene mutation (homozygous). It's never impacted me (that I know of), but could that be an underlying cause of his reaction to strep? Should I have him tested for this? What tests would anyone recommend? Again, being new at all of this, I'm still trying to digest it all...I appreciate anyone's thoughts/comments/opinions. I think it's so wonderful that you all take the time to share info & experiences...it's helping me a lot! Thanks, Lori

Hi Evie, Thanks for the info on Dr. Trifiletti. I guess I'll start out with him and then get another opinion if his recommendations seems too aggressive for my son. I definitely don't want him to be a zombie. My son, James, has been off of antibiotics for a week now...and I have to say that the intensity of his tics has subsided somewhat in the past few days. He's also less depressed and starting to laugh and play a bit. And you don't sound pessimistic...I've read enough now to realize that this is the reality of PANDAS...When he was 5 months old, he was diagnosed with severe food allergies and I had hope that he would be one of the few people that would outgrow it...but he hasn't...So I guess this will just be another challenge for him/us to deal with. Which brings me to something I'm trying to get a better handle on: How do his food allergies tie into this...Is his immune system just over-reactive to all kinds of things? When I originally took him to the hospital last month, it was because he was getting hives (not a rash) and I thought he was having an allergic reaction (which wasn't responding the the allergy meds that usually resolve his hives). That's the night he was diagnosed with strep (1st time he's been positive for it). And even after being given more antihistamines and Prednisone in the ER, his hives wouldn't go away. He's been getting patches of hives on and off since then which is unusual for him. Also, he just got retested in January for his food allergies (IgE testing). Should I talk to his allergist about IgG testing...He already tests positive for things that he eats/drinks (ex. milk) now with no reaction. So I don't know how much that will help me...my allergist is trying to be helpful, he knows what PANDAS is, but not anything more that can help us. I guess I'm going to bring all my test results (titers, allergy results, etc.) to Dr. Trifiletti and see what he recommends and decide from there. I am open to any other testing, diet modification, etc. - I just need some direction. And this is a great place for info! I appreciate you (and others) taking the time to help me figure this out. I'm feeling much more knowledgable and prepared than I was even a week ago. And good luck with your son. I'm frustrated and this it's only been 1 month of this - I can imagine how tough this is for your family. Thanks again, Lori PS - If you have any other doctors/nutritionists, etc. in NJ/NY that you recommend, please let me know!

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

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

I didn't even catch the "she"!

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...

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

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.