Hrosenkrantz

Ophelia -- thank you for sharing your experiences so honesetly and bravely. Many of us have also suffered from depression related to our kids illnesses, have lost friends who haven't been there for us during this alweful experience, etc etc. You are not alone and your depression makes a lot of sense. I do think its great that you have Dr. C on your side looking out for you. That is something to be glad for. All I can say is you need all your strength to heal yourself, so if it's possible, try to banish unhelpful thoughts that don't get you anywhere, like what has already happened. Try to focus on the future. I[m sorry about the insurance cancelling the IVIG locally -- that part of your message is extremely puzzling. I'm not sure why they would do that. There doesn't seem to be any justification for it

Can you call dr n's office and ask them this?

Thanks 3bmom. In my friend's case its the opposite -- she has been told for years its autism and nothing to be done medically, and now she is trying a PANDAS doc who takes a less pervasive view of autism. I think she is looking to hear from others in her situation who have seen positive results from PANDAS treatments.

Hi -- I have a friend whose son has been diagnosed with autism for years.. She recently saw Dr L, who diagnosed him with a form of strep, and wrote an rx for some medication. I know I have corresponded with parents on this forum whose kids have been diagnosed with autism, and then they treated for PANS and saw some progress. Alas, my inbox is now empty -- my friend would like to talk to other autism parents who have gone down this route and seen progress (with Dr. L or others). Thanks

I haven't read it yet, but this was in yday's NYTimes: http://www.nytimes.com/2014/02/18/business/food-industry-wagers-big-on-gluten-free.html?src=me&ref=general&_r=0

pr40 -- on making the whole house gluten free-- for argument's sake -- what do i do about the resentful 11 year old who already has issues with how much of a drain his PANS brother is on the functioning of the entire family?

Lydia's mum -- I could have written part of your post myself. I was alraedy completely exhasted before PANDAS hit from dealing with my son's language issues, which remain his primary challenge. Like others who have posted, our issues were not from birth, but rather at about 4 years old we started having very signifiant language issues. My son's very first diagnosis was Mixed Expresive Receptive Language Disorder. That's another label for dyspraxia. I have found that steroids, used to treat signifiant PANDAS, had a very significant role in improving my son's language skills. Separately, my son was recently diagnosed with landau-kleffner syndrome -- a language based disorder. An EEG is required for this diagnosis

Hi -- I'm not sure what the right answer is, but in my experience, there appears to be a split between the straight up PANDAS doctors and the immunology doctors who look at/look for/treat co-infections. My son has been to four of the top doctors in this space, plus other doctors. I think unless its a clear cut, obvious case of lyme, there is going to be a lack of consensus among the experts. In fact, looking at the list of doctors you list above, I'm sure they each have their own protocols on specific antibiotics, ivig, steroids, etc.

<<I think they are getting tired of thousands of dollars a month for infusions and are taking notice >> Maybe the letter saying "you have been assigned a case manager'' is like when the mob sends you a dead fish to try and intimidate you. (joking, but thats how i feel about insurance companies sometimes)...

We all have PTSD from this process -- its easy to assume everything is going to fall apart because who would hav ever thought we'd wake up one day with a kid who changed overnight?

Powpow, before I had ever heard of pandas, when my son was wracking up a lot of speech therapy and OT costs, I got a letter like that from our insurance. I ignored it and went about my business of managing my son's care the best I could. I don't think I ever heard from the case manager, and I continued submitting my expenses without any issue. The both times my son's IVIGs were appealed, a case manager was assigned, and I did speak to her about the process.

One thing i've wondered about AE... Iif antibodies are key to the diagnosis : if someone has this condition (as opposed to straight-up PANDAS, do you ALWAYS have these antibodies, are do they go away with steroids and other treatments?

Quannie, congrats for being able to shepard all this on your own. The insurance peer review doctor came out to your house? That sound kind of creepy...

Ashley -- you are right that if you are trying to figure out the root cause of the issue, that adding the clonidine wont answer that question. However, I can tell you that in the time i have been dealing with this, i have pressed many doctors, who fully support the PANDAS dx, for other meds we can use to address the situation -- Clonidine is always one that comes up (as opposed to, say, ADHD stimulants -- i find PANDAS docs generally don't like those).

oh sorry -- this is not me! that was a friend. Let me know if you want me to give you her contact info

Quannie, from a friend: ``Please get her in contact with me. I am almost 4 years in. Stage 4 and currently no active cancer. Or just pass this along. There is Hope. I will also start praying.''

We added omaga (in the form of a product called speakeasy) to my son's diet this summer to boost his speech and language weaness. Around this time he entered a prolonged, serious period of rage. I was told by one pandas mom that omega actually increased anxiety in her child. We had to break that situation. so we stopped hte omega. I've afraid to add it back in, even though its benefits are so many, for fear of bringing him back to that aweful place

Quannie, out of curiosity, what are you trying to target with the omega 3 supplement?

Sorry to be dense, but one thing i have never understood about GF diet -- they say on a GF diet, you can't even have a little gluten -- that a little bit is as harmful as lot. Why is that? I seriously don't understand (and i ask not in an argumentative way, just trying to understand). If I'm on a diet to loose weight and i cut out bagels and breads and pizza, but then have a slice of pizza at a party three weeks in, i have still benefited from eliminating all that bread. If we are removing gluten from a kid's diet because we believe its an inflammatory, is the problem that one random cracker is going hurt him in the same way as a daily diet of gluten?

Deborah, im so sorry. What does your doctor, out of curiousiity, say you should do?

So how do you treat leaky gut?

Yes, powpow. Another story to bring tears to my eyes

karam -- i found your post about bactrim interesting. We also tried bactrim but it did not work for us. By the way, your in box is full

Ariel95 -- beautiful. Put a lump in my throat. My journey has not been nearly as long as yours (though it has been too long), but i the part you wrote about the setbacks really speaks to me. Although my son seems to be past a couple of really aweful symptoms, every time he displays something that resembles those worst-of-the-worst rages. a panic sets in that that they are returning and we have to fight that battle AGAIN.

My son has not gotten back to his baseline of June 2012; but he's a complicated kid with a bunch of issues, so it's not a simple case (are any of these simple?) But -- as far as progress -- we saw a play yesterday and he was able to sit through and enjoy (i think) the whole thing. When we went to a play in august, when he was in the throes of extreme PANS rages, we had to leave because he ran out screaming and shrieking. By November, the rages had pretty much stopped, but he was off the charts hyper and when we tried a play, we had a leave because he couldn't sit still. Yesterday was a success.