amy s

This is a very big part of pandas for some. Antibiotics alone did not help our dd and she had to have IVIG. You might see if you can try high dose antibiotics? We never tried that. This can be a horrifying OCD for some. It was for us. Confessions of the most horrible type and out of NOWHERE and upwards of 100,000 per day. Contact one of the pandas specialists. Good luck!

Thrilled for you and your family! Great news!

Like last year, everyone in my family is getting the flu shot (not mist) except for my dd. But we are a household of adults, no other children in home.

Hi dut: I wanted to respond real quick to your post. When my dd was 3 she had post infectious glomerulonephritis. We believe that it was post strep, but at the time it wasn't tested. Her major pandas hit at late age 5. When that hit she had a lot of joint pain. She had heart murmurs age 4-5-6-7 but echo was clear. In our case, it had nothing to do (the post glomerulonephritis) with any antibitiocs because her illness preceding the kidney involvement was considered viral and she was not put on antibiotics at the time. I just wanted to let you know our experience. Good luck to your family!!!! Feel free to pm me. Regards, amy s

Azithromycin treats myco but penicillen/augmentin does not. My dd had rage issues and also positive for myco-p. I hope your ds is well soon!!!! regards, amy s

When my dd was ill with pandas symptoms she constantly had strange pains, chest, back, ribs, legs. She had seen a ped. cardiologist during the illness because she had a murmur and a really messed up EKG. But her Echo came back ok. We never really got any explanation for it, but I'm convinced it is related to pandas. Pain has been gone since all other symptoms went away after IVIG. I agree with tpotter. Might be best to get it checked out.

Interesting point about the mechanic. I like that one.

Hi Justine, Ok, for what it's worth, I will tell you our experience. But please know I am no lyme expert. At one point we were told that my dd had lyme (and a bunch of other co-infections, as they say) as well as pandas. She was diagnosed lyme by a supposed lyme literate doctor. At this time we were talking with many different doctors and trying to come up with our own conclusion based on each providers input. We were trying to work up to a steroid burst and IVIg to help with pandas. I was told by this doctor 'DO NOT GIVE A STEROID BURST(due to the lyme), it will make things worse!!!!' I was very conflicted about what to do. I had no reason to think my dd had lyme, but I had many reasons to believe she had pandas. We absolutely had to get help for my dd as soon as possible and I had to make a decision regarding the steroid burst and subsequent IVIg. I was very concerned when told that she had lyme plus all the co-infections. We took the lab paperwork to two other providers, one of which was an infectious disease doctor and both of the other doctors dismissed the lyme diagnosis. I just got out my dd's lab work so I could tell you what it says (it was done 2 years ago so I don't remember it). Ok, if this makes sense to anyone: Her IFA for B Burgdorferi antibodies (IgG, IgM and IgA) came out as <1:40. Which according to the interpretation guide sounds negative to me. Her IgM Western Blot (IGeneX?) results were as follows: 18 - 22 - 23-25 - 28 - 30 - 31 Indeterminate 34 Indeterminate 39 - 41 ++ 45 - 58 - 66 - 73 - 83-93 - Now, this still looks negative to me. Our supposed lyme literate doctor sure thought it was positive. Your child's may be strongly positive, though. I do want to note that on my reference guide of the Igenex testing it states that "Positive results for 31 and/or 34 may be present after vaccination in uninfected persons. Infection with HSV, EBV, HCV and/or syphillis may give false + results." Anyway I wanted to mention that because there are a heck of a lot of people who are infected with HSV, my dd being one of them as she has battled facial cold sores for some time. Ok, so we decided to do the steroid burst that Dr. K recommended and we crossed our fingers and went with the only thing we really had to hold on to. Her steroid burst was strongly positive...meaning it caused immediate discontinuation of pandas symptoms, except she did have more rage like issues which I contributed to the steroids themselves. But there was no mistaking that her other pandas symptoms were gone. So we did the IVIg that is Dr. K's protocol and, for our dd, it was the best thing we have ever done. She had steady continued relief from her pandas symptoms and today, 2 years later she is 100% and I'd say that in this past year she is healthier than I have ever seen her. Of course this is our experience only. And granted, I don't think she is positive for lyme, but, she was diagnosed with it. I wish you the best of luck in your decision. It is hard to know what to respond to at times because not all these kids present the same and have the same issues. But I wanted to let you know our experience, in this case. Please let me know if I can answer any further questions. I hope your child is well very soon!!! regards, amy s

The topic of this question is something that has bothered me over the years. I think, after reading the boards here that I am probably in the minority when I say that I do think that pandas is rare. Even among those with OCD & Tourette's. But then I have never known anyone with either OCD or Tourette's who didn't have an infectious trigger. I know that doesn't make sense. I look forward to the discussion on this topic as I think it will help me come to terms with how I feel about this personally. I think where my feelings stem from is that it is just so impossible in my mind that my dd's illness went undiagnosed for so long and nobody knew what it was or had EVER seen someone like that...how could they not, if it WASN'T rare? I'm guessing that the cumulative years of experience that all her doctors, nurses, specialists and teachers had was in the 1000's (of YEARS!!!) and nobody had seen this before? So hard to fathom. My dds case was very severe, though. And it did not respond to medications and therapies the way the the experts claimed normal OCD responds. Very interesting, I'm torn. Maybe this is the way my brain is letting me off the hook for not figuring it out sooner in my own dd? Maybe it is just my own personal lived experience with my dd. I don't know but I am always surprised when someone posts on here about it being more common than previously though.

This is a wonderful page! I will let them know how I feel!!! Thanks for posting it here!

Very interesting topic. Brings me back to one time, early on in my dd's pandas exacerbation when I had been in the doc office and calling constantly but they just didn't see anything except that she was definately a little 'weird'. Meanwhile we had been going through pure heck at home and everwhere. It continued and the providers saw more and more of things, heard more of my stories of what was going on, my pleas for HELP....I can't tell you how many visits. One time my dd was raging like a wild animal right in front of their eyes and they were saying how they had never seen anything like that in their lives, including during their residency at a children's psychiatric hospital. It was obvious that they didn't know what to do, no clue...but I recall BEGGING..."If nothing else, for GOD SAKES please document that you witnessed this so in the future new doctors who CAN help will believe me!!!" From then on we had excellent records. Now I have copies of all records, it's funny, in the beginning of the pandas - they wrote things like "odd child" or something or "mother is concerned" rather than real objective documenation of exactly what they were seeing. Sometimes our docs hands are tied and they just can't help or don't have the knowledge/experience to help...but those people can still help serve a purpose to us by documenting very well what they see and exactly what the parents say about the child. That can help justify further care/treatment later down the line.

I appreciate what you are saying but this is not the forum. We are trying to help our children...that's it. If you want to complain about providers...do it in a private forum or via email, please. Everyone has a bad day once in a while and it doesn't mean that they can't help someone else's child later on down the line. We are limited enough as it is.

I want to thank you for all you have done. I have not had time to read all the responses to this post. I was on vacation and didn't read the board when you posted this but I did a web search on Dr. Cunningham and the PEPSI grant and was able to find your post. I don't know what to think about this. I was thrilled about the whole thing until I got to the part about doing research related to Haldol and Pandas. This makes me sick! I guess I just don't understand the mechanism whatsoever. We have fought so hard to bring understanding to others that those type of medications and treatments DO NOT WORK for pandas kids, in most cases worsening symptoms!!! I am truly upset about this. I will never EVER give my child another psych med after finding out what REALLY works for her!!! I will have to do some research on this independantly when I calm down. But great job, P.Mom and I will continue to hope research continues, whatever the direction.

OMG Nancy I am so sorry for all you and your family are going through/have been through. I can only imagine the feeling of waiting there for over 24 hours for their decision to be made only to have it not go through. I am so sorry for your heartbreak. You are such a wonderful mother...keep up the fight! My heart goes out to you.

I am so happy for your family! I remember when my dd first got on a bike after so long not being able to ride. She had learned to ride very early with no training wheels...then pandas struck and she just could not do it anymore for the longest time and after IVIg (took her a year to get the coordination back though) she jumped on the bike and took off. I was feeling just like you are. Every day is a gift.

I don't know your child's situation, but for my child, it was absolutely the right thing and I am so glad we did it! She is approaching 2 years post IVIG and is 100%. My dd did not have any issues with flairs or turning back the pages, really at all. But she was extremely ill (PANDAS) - the only direction she could go was up. I will never regret it, would do it again in a heart beat if she needed it and credit the doc who agreed to give her the IVIG for saving her life. I hope your child has a smooth procedure and healing time! All the best~ amy s

My dd also had EEGs to rule out seizure activity. Turns out it was all related to pandas, no seizures. I am glad we know that it wasn't seizures, but it was a horrible experience so I wish we didn't have to go through that. (She had to have it done awake and sedated because she was raging so bad during the EEG that it was not readable.) We also didn't know anything about pandas at the time (this was about 2.5 years ago at the time of the EEGs) Good luck with your decision!

I do not believe that my dd's is eczema. My dd's are patchs of hypopigmented area, not itchy, not scaly, no redness, just normal looking skin, but whiter than the rest of her. She has had a fairly significant work up and in my dd's case, I truly believe it is related to autoimmune issues.

My dd has two of these spots. Treated for pandas with IVIG nearly 2 years ago and is 100%. She still has them. When first noted, she was having major changes in personality and issues with her brain, they thought she might have a form of tuberous sclerosis, since part of the manifestation of tuberous sclerosis is that can affect the brain (nodules and tumors form) AND skin changes which include white patches. But then, we were searching high and low for anything that could be causing her change. She has a fairly large one on the back of her neck and the other one is smaller, on the back of her leg.

Be very careful with supplementation with iron long term. P. Mom is right, it is toxic to the organs if too much is in the body. Hemochromatosis is one of the most common genetic illnesses and it is usually not found out until mid life, causing organ failure due to iron overload. The only real way to really get iron out of the system is by bleeding. The treatment for hemachromatosis is to donate blood constantly for life! Menses is another way to remove iron from the body. That is why most women are not found out to have hemochromotosis until after menopause. Sorry,I don't know how to raise Ferritin levels.

My dd had an adrenal work up a few years ago (during a horrible exacerbation). Nothing was out of ordinary.

If it were me? I would have no problem with not going at all

Thank you for posting this information!

Most visits for us related to pandas we had to pay out of pocket.

It probably was a vasovagal response. I agree you should always have the techs draw blood (or if rec'v an injection of some sort) do it with him lying down and have him stay there a while...sit back up slowly, come to a stand slowly and walk away slowly with someone nearby. It can happen minutes later, after the person has walked away from the area! http://en.wikipedia.org/wiki/Vasovagal_response