Kristy S

I agree it sounds a lot like PANDAS, but it definitely is worth talking to a PANDAS expert to say yes or no. Anyone who says, "wait and see" is not someone I would want to be caring for my child. Those Dr.'s mad me wait for over 18 months while she slowly got worse and worse until she couldn't even read anymore. Waiting is NEVER a good idea unless you have an expert telling you to do so and actively watching to see what is happening. Like Dr. K (he treats my DD) has me check in every 4 weeks because we were waiting a few months after she caught Strep again after IVIG. Next step is another IVIG before the summertime and not having her come back into school just to catch it again. Don't wait, with all those medications things could get much worse instead of better. Here's a Dr. in your area, a couple hours drive is the closest most anyone can get, I had to go across many states to find a Dr.. So it's pretty lucky this one is so close to you! Dr. William Zinser Pediatric Neurologist (ABX, Steroids, IVIG--best w/recent onset, treated a few cases, spinal tap etc done) Children's Medical Center Dallas TX I don't have his number but just google him I'm sure you can find it. Hang in there! Kristy

I had PANDAS as well as a child but was never diagnosed as it did not exist then, I am 36 now. But from learning about my children's PANDAS cases I now know it was what I had as well. My case was not as severe as theirs is but I still have all my symptoms now that I did back then. Dr. K told me that whatever symptoms they are left with at 18 (ballpark age) they will carry with them into adulthood. So do your best to treat now, IVIG had spectacular results with my DD until she got another Strep infection and all was lost after only 6 weeks. I encourage you to give him high doses of probiotics, when all those antibiotics are killing everything off it makes my DD worse too, but when I keep up on her probiotics it REALLY helps a lot. I wish you the best. Kristy

I just wanted to say thanks for this post, I just found it searching for cheaper IVIG and they are LOCAL for me! Happy Day! I just sent them a request for information!

My DD has had PANDAS since Oct. 2006. Just 3 weeks ago (after 4 weeks of being too scared to sleep alone or even use the bathroom alone for no apparent reason) my DS started the eye rolling tic during his Karate class. I got so upset that I had to go outside, cry my eyes out and got so worked up I was dry-heaving in the parking lot. It's like my night mare coming true all over again. Then I tried to get him antibiotics and my normal Dr wasn't in. Her partner says,"so your daughter has a very rare disease and now you think HE has it too?" I wanted to smack him. IT IS genetic!! I had it as a kid too but no one knew what it was, i still have the eye-rolling tic occasionally but my case never got as bad as it has in my children so I was lucky. Now I'm looking at IVIG for both of them. My DD had IVIG in August with Dr. K, but 6 weeks later got another case of Strep and it undid all her wonderful progress. Now I'm looking into doing it locally and I'm trying to find cheaper IG or Gamunex, I did find a local Dr here in Charleston, SC that will do it though if anyone in the area needs it.

I'm not sure how Dr. B operates but MAKE SURE you have an Rx for steroids leaving the office. Many children (including mine) had a headache so bad it caused projectile vomiting afterward. The steroid dose (fill it before your ride home) will fix it. Most of IVIG was no big deal, we got home just fine, the treatment in the office was great too. Just the day we got home she had one instance of the proj. vomiting and without the steroids the headache would have been unmanageable. As long as you keep your child hydrated before and after and have the Rx everything should be great!

Well before that I just thought she was a moody, determined child. When she was born she didn't have a good time nursing and was starving for a few days (for which I feel eternally guilty) and she cried non-stop. I really thought she was eating. We got that settled, she had a milk allergy, then peanuts tree nuts, then cats, dogs & horses. But she was always really sensitive, I had to change her diaper about 16 times a day. She never took long naps and has always been high maintenance. She wet the bed forever...it is hereditary and I wet the bed till I was 10 so I figured it was normal. But now I'm just not sure, since IVIG she's even woke up at night to pee. Maybe worth mentioning is that I really believe I had PANDAS as a child as well. I also had/still have since never received treatment the eye rolling tic (or chorea if that is what it is) occasionally. But 10/6/08 she woke up and we were shocked. Most of her symptoms occurred after that point. It's really hard to tell but I'm grateful for the strep test on that date that directed me in this direction since it's definitely what she has. Wish I could know for sure..

You're definitely not alone. Got my son's labs done for titers recently (sister has PANDAS) and they poked and poked and poked..he is so skinny and has wiggly veins. I was so upset, he tried to be a trooper (he's 5) I know it's heart-breaking, but it's worth it in the end. Melanie (sister) had just had IVIG and it turned out his titers were really high so he got antibiotics and Melanie did not get sick from him having Strep. Worth it but miserable to do. Things will get better, try to keep the faith.

I just wanted to give some hope to those out there who are waiting for or planning on IVIG. My 8 year old daughter was a very easy diagnosis: Oct 6th, 2008 woke up with eye-rolling and head turning, I freaked out and rushed her to the pediatrician who (thank God) tested her for Strep because she had heard just a bit about PANDAS. She tested Positive and we had it but did not know how to treat it. After many Dr's and no treatment offered we finally found The PANDAS Network in July 2010 and she gave me direction (I am eternally grateful.) We rushed for IVIG before school and got it Aug 4-5th w/Dr. K who agreed she was a classic PANDAS case. So now this is where we are: ADD: Some good days and some bad. The fact that we have good days at all is amazing. OCD: She's gone from wiping 10 times each bathroom visit to about 3..still room for immprovement. Bed-wetting: In her entire life she has had about 3 dry nights, after IVIG she's had about 13 in these 6 weeks! Anxiety: Much better, comes up occasionally now but 5 out of 7 days we're good. Eye rolling Tic: Not really much improvement at all, some days I notice it's less but there are more bad days then good ones. Mood swings: when she's tired it's a train wreck, but otherwise it's better Math skills: Incredible improvement, she's making B's (here you need a 94% to get an 'A') Separation Anxiety: So much better and she's not clinging anymore Basically week 1 was no change, weeks 2 & 3 I got my hopes up, saw great results, week 4 & 5 were horrible, I was very discouraged since I thought she was getting better then everything went down-hill, and now in week 6 things are looking up. I'm worried about when all those good antibodies go away..how she's going to do on her own. It's nerve-wracking but I'm hopeful.

From what I have heard the antibiotics really make the most difference. I'm so happy you have a consult with Dr. B! I believe the key is just getting to one of THE Dr's. After that things get so much more clear. I wish I could help with the meds but I can not. All I can say is an anti-inflammatory is usually a good idea..like fish oil every day. Less inflammation means less symptoms. Good luck to you!

This breaks my heart. Who do we write to about this. I just don't understand how things like this happen.

Dr. B recommended high-dose ivig for our child over two days. I wonder if drs perform a one day treatment or a treatment that is not high enough - what can happen? I would think it might make things worse...Our child is very high functioning and has lots of speech. His problems are mainly that he can not self-regulate. He is like a spin top out of control. He really cannot settle himself down to think through his choices and he acts impulsively and aggressively as if he is in constant 'fight or flight' mode. Can anyone help me to let me know if anyone's child has recovered on one dose? Has anyone's child recovered from an autism diagnosis when it was really the underlying infections and PANDAS that was causing the problems? Thank you. Our dd had IVIG w/Dr. K 6 weeks ago, it was over 2 days as well. I have read on this site about one mom who did it in 1 day with her child and it was horrible. Wherever/however you get it make sure that you leave with an Rx for steroids in case the headache is massive and won't go away. My dd had the headache and I was very, very grateful for the steroids, without them we would have been in the ER. I like the 2 days and would not try 1 myself. My dd also had the chronic ear infections as well and was very cranky. I do believe many people have misdiagnosis of many other things including Autism and it's really PANDAS, and I think ruling out Lyme is a great idea as well - good for you! I need to look up how to do the IGenex thing as our Dr will not just test for whatever we want. Is there something special about the IGenex test? I read it twice this morning but don't know what it is, is it more thorough?

You are absolutely doing the right thing. Dr. K is awesome, funny too. We flew to Chicago on Aug. 2nd for IVIG on the 4th & 5th. The first day is a field day - totally no big deal. The second day her IV site hurt but that was the biggest complaint. Definitely plan to do something fun the day before and the 1st day in the afternoon..it will make the trip better. The plane ride home was miserable because there were storms in Charlotte and we couldn't land to catch our next flight. I highly recommend flying direct. I finally rented a car and drove home after we diverted to Columbia. The next day she did have 1 instance of projectile vomiting and the headache that needed the steroids. Between alternating Tylenol, Ibuprofen and one dose of the steroids that he will send you home with she was fine. You'd never even know she did anything. It's been exactly 2 weeks today, still no results but it's early. Anything I can do that might even help a little is worth it. IVIG was really NO BIG DEAL for her at all. You'll be fine. :-) If you go to the planetarium make an appointment (buy tickets) for the main show in advance. He has some videos and video players..bring snacks and a beverage - you will have to go out for food, bring a book for you since you will have nothing to do while she sits in the hospital bed and watches TV.

Hi All, I am trying to get her school to understand a bit about her problem so she doesn't end up with another (last years was a____well she should have a broom stick) teacher talking down to her and punishing her non-stop. I'd like something official looking that describes the symptoms and disease a bit. Anyone have one? Thanks! Kristy

I trust Dr. K with everything. He's our expert and if he says Abx then Abx it is. I've never heard anything at all about treating too early.. I would think if you don't get it on time then there is just more time for it to take over!. Glad Dr. K said Abx. Hope you can get them before you go!

My dd had IVIG with Dr. K on Aug 4th & 5th. Dr K said she HAS to be on antibiotics for at least 1 year after IVIG..I'm curious why your ds has none.? My dd is worse too though. Tonight she will only sleep on the hardwood floor because her bed is too uncomfortable. I feel like I'm going crazy watching this madness, she won't sleep and now she won't even get in bed. She's crying intermittently all day long. I'm hoping it means that at least something is happening. I hope it would be worse to have nothing going on at all... Just trying to make myself feel better I guess. I hope it gets easier for you. This IS hard. I do believe in IVIG though, it's just not overnight at least that's what I keep telling myself anyway. Kristy