sww817

I THINK it might be too soon off the abx for a rapid to show positive. You will need a culture. Someone might chime in if I am wrong?? But you might just want to make sure they can do more than a rapid before you go.

We see Dr. L and she did not mention this. I have seen it mentioned on this board and another site. She didn't really tell me what to expect. Of course, it was also 7:00 the night before Thanksgiving, so I was just thankful to get the script called in. Sometimes I think it is better to just let things happen. But I can't help but anticipate and analyze it as we go along. Now I don't know if this is good or bad??? Oh, we are on a steroid burst.

Oh and I wanted to add that I would probably stick with Dr. K since you are nearby. But if you wanted a second opinion, Dr. T is on this board and has encouraged people to contact him with questions. People have said good things about him as well. We are working with Dr. L who I highly respect as well, but she has been harder to get in touch with.

I am really confused why Dr. K stopped the Azith? Not that I am saying he should not have... just curious why??? I think these short courses of antibiotics actually work against us in some cases. Making the strep harder and more resistant to fight. I would be curious to hear if he gives you the reasoning behind it.

I don't have much to add that others have not already said. I would just say that I think it is a good thing that you are working with one of the doctors that understands PANDAS. It definitely sounds like it fits the profile. My son regressed before he turned two and we have chased a lot of diagnosis. He did not regress to the point that they could fit him into any of the profiles, but they / we tried. I think we are finally on track with PANDAS. How did you choose Dr. K. I think he is good. I am not saying otherwise. But I wonder if Dr. L or Dr. T would have any more insight into a situation like this. Since they are both neurologists by training. Anyone else have any insight???

I can recognize my child from the signs and symptoms. But we did not have a documented strep until we believe much later after onset. Initial episodes were probably missed. So by the time we got into it, the strep was hidden and we were getting episodes from any illness. But I found enough info on this board and Dr. K's website to pursue the possibility of PANDAS twice. Second time, to Dr. L which finally got us on track. I think your work is great. No matter what you decide to send to NIMH, this will be a great form to be pinned at the top for new parents that find the forum!! Thanks for doing this!

insisting on certain cup / straw / plate- to the point that it is that or nothing

I am glad you have gotten help from her. I certainly do not want to say anything bad about her or what she believes. What helped Sammy has and will help many others. I just know that the diagnostics that they used (ASO) were not beneficial to me or many others. And the antibiotics alone do not help everyone. Plus, as some other threads have spoken about, there are variances of symptoms and chronic presentations. So I just believe that their story alone paints an incorrect picture. As my story alone would paint an incorrect picture. I certainly do not want to speak badly of anyone in this situation, and it is great to get the word out there that this exists. But MY OPINION, is that it is also critical for other parents to know there are a lot of different presentations and protocols. Again, I am happy that Sammy's story has helped you and lots of other people out there. And Lauren's story has helped. These stories together with some of the others like on this board will give the best information to the public.

Great post! And great list! I will first add that sometimes the signs aren't as noticeable and Dr. L told me the child can just come across anxious and fidgety and then might throw something across the room. This is typical of my child who also has some communication issues. * counting toys * insistence on a certain order of events (such as reading certain books in only a certain order) * checking doors to make sure they are locked * putting together sets of items * constantly changing mind- fear of wrong decision Also, I would add that a lot of these things are also normal at times. It is when they become obsessive that it is a problem.

EAMom- Dr. L told me that in a small child they cannot necessarily express that they are worried. So as in the case of my four year old (who is an "alphabet kid"), they come across as anxious or fidgety and then might throw something across the room. THAT description fit my child exactly. I personally get these small tidbits of information from Dr. L that amaze me. I have put more pieces of my son's puzzle together since my first meeting with her than I had in two years with multiple other doctors. Makes me so mad at myself for not finding her sooner!

The only other thing I would say is don't forget that strep might only be part of the picture. It is definitely the biggest problem (well I think) but then there are other triggers. My child has an episode with any virus, infection, etc. And if the school won't send home a letter, maybe you could approach the PTA. I wonder if they have to follow the same rules???

I really do not like to be negative... but I think the Saving Sammy story WITHOUT other stories with it, is a negative to the PANDAS community. From what I have seen, they do not embrace the differences in presentations and protocols. I think they are only presenting one side of the story here and we all know that PANDAS has so many different faces. I actually would rather NOT see the Saving Sammy story on Oprah. But I would love to see a collection of patients and doctors (Dr. L, Dr. K, Dr. T) on there. And Sammy could certainly be one of them. I am sorry if I come across negative. I just have traveled this long road and been turned away too many times by doctors that were misinformed. It took me a trip to Dr. L who immediately saw the true picture. And I only made that trip because of my gut not letting me just accept another episode. I don't want another parent to have to go through what I went through unnecessarily. Doesn't that saying go... information is power. But what about INCORRECT information? Again, sorry to be negative.

SF Mom- That letter is great. I may have to borrow parts of that in the future. One question, did the parents understand that you needed to know even if they thought the child had not been in the school environment when they were sick? Were the parents cooperative?

That makes sense to me. It is hard to cover all of the bases with this, I am sure. I am just thinking more for the parents that are looking to diagnose their children before they get to the "right" doctors.

I agree with Vickie about listing what OCD can look like. But I am not sure how to word it. I never really thought my child had OCD until I talked to Dr. L and she explained to me what it looked like in a small child. I was looking for the hand washing, checking doors, counting, etc... My child had mild versions of some of these things but it never hit me as OCD until she put the pieces together for me. Awesome work Buster! You are definitely a wealth of knowledge for me on this board!

My son is 8 days into a steroid burst (plus we increased his Augmentin). He had been doing relatively well. Nothing major for improvements but we were relatively happy with things. The past couple of days we have had some issues. Nothing like what we experience during his episodes. Some of the same issues are there but the intensity of the issues is not nearly as bad... at least not yet. So my question for those that have experienced this "turning back the pages"... were the intensity levels of your child's problems as great during this phase as during an episode? Did all of the behaviors return or just some? What triggered this for your child (ie steroids, IVIG, PEX, etc.) I am hopeful with our treatment plan but at the same time, I am worried about another episode since my child is triggered by any illness or stress. It seems like each time we get over a virus or something, we get another one. Plus, I am not sure what to expect with the steroids in general as far as time to improve. Thanks for anything you can share!

I agree with everything you said. Unfortunately, I think we still have a long road ahead. This disorder has SO MANY different presentations. And the general population and media like things to be neat and tidy and easily identified. I can attest that our story is extremely complicated, as most of the stories on this forum are. So let's just be extremely hopeful that the media keeps taking these baby steps presenting anything about PANDAS. One day the full story may be out there. And in the meantime, thank God for this forum and the wealth of knowledge that we parents can get here.

It would be GREAT if the Today show would do a follow-up. To really put a face to the disorder that is different than Saving Sammy. And also to get another doctor out there that follows different protocols and is more up to date on current methods.

I am always thankful to have any information on doctors, good or bad. I think it is helpful to parents to know if someone is unwilling to help and / or not up to date on treatments. It is part of the benefit of the board. You might not want to be too critical (not sure what you said) but the facts are helpful to us all. This journey is hard enough without hitting roadblocks. So if someone can help guide us, I think it is great!

That is exactly what I was thinking Vickie. I was going to TRY to suggest that to her when I see her next time in January. I know she is working very hard and trying to learn more and help educate other doctors. Plus she has a family. But it would be beneficial to her patients to be able to get feedback promptly. And then she could get to the other e-mails as she had time. I truly believe some of the ones that do not get responses just slip through the cracks.

I don't know if you have gotten in touch with her yet but I would second the response to call during the day and speak with Andrea or Faith. When I called the very first time to make an appointment, they told me she typically gets over 100 e-mails a day. I have sent e-mails that have been answered and others that have not. I had a phone consult with her that she called about three hours late... but she did call. I think she is just extremely busy. I am certainly not making excuses for her. I know how frustrating it is to have doctors that do not call back. Just wanted to add that I think her office staff does their best to try to stay on top of things.

Also when the symptoms are mild it is easy to go down the wrong path. Perhaps ADHD, ASD, etc. Add that to incorrect information that is out there and we spent a year chasing the wrong issues. That is what is so scary to me when you have anyone that is not looking at the current research and the fact that every PANDAS presentation is unique!

You will probably get more posts on this. I was interested to see the responses as well. I seem to remember reading somwhere that kefir somehow coats the gut and leaves a more favorable environment for the probiotics. Therefore they can do their job a little better than just plain probiotics. We use Liefeway strawberry kefir. It tastes pretty good to my son and he will drink about 6-8 ounces in the morning. I do think they say for maximum benefit it would be better to drink the kefir away from the antibiotics. But we only have so much time in the day and I use it for morning protein as well to start his day. Also, I think that the milk protein in kefir is broken down more so it will not be as bothersome as milk or even yogurt if you have casein issues. We avoid a lot of milk and we do not seem to have issues with kefir. Hopefully someone else will chime in with more specific info on it though.

For NC: I e-mailed Eliana Perrin at UNC when we first started looking for a doctor. Her response when I asked if she was familiar with PANDAS and treated patients was: "No, really not. I just do general pediatrics. Please get the word out on the message boards as I get numerous phone calls and e-mails. " She recommended another doctor at PCAAD who turned out only to do research. He then recommened another doctor in the practice who told me PANDAS "is an area which remains controversial with limited evidence for a clear consensus on how to diagnose or treat". I do think the therapists at PCAAD might be good. We ended up driving to MD to see Latimer.

Let me clarify my experience with Enhansa, especially since you have tried it. My doctor told me to start VERY slow... VERY. And we did. We started with about 1/4 of the small white scoop. Right now, we still only take one white scoop in the morning and I have just added about 1/3 in the evening. We stayed at that one scoop for months. We see die-off and yeasty behaviors. On top of getting sick and other flares. It can be overwhelming at times. I cannot say that I have seen a lot of difference in behavior or anything else. But his OAT numbers came down. We just got those results and I was SHOCKED. I have never had an OAT test, or any test for that matter, that was relatively positive. And like I said, the doctor says the dose is too small to say it is the enhansa... but we did nothing else different. SO... We originally were going to stop everything when we had our last episode. But then we started exploring PANDAS, saw Dr. L and got that OAT. So now we are on antibiotics... ready for more yeast... and trying to up the Enhansa to see if it will keep it at bay. The yeast really adds a whole other layer to our issues! And as for SCD... it was really hard to do all of the cooking. And my ds was on it at daycare while all of the other children were eating normal foods. It was too hard on him. I would have definitely kept it up if I had seen results. But we did not so we stopped. And we actually had some improvements after we stopped. But in hindsight, I am not sure what is illness / antibiotic / yeast / allergy related anymore! We have lots of issues!