sww817

I will only second the emla cream. I use it with my son and we talk about how it will not hurt, etc. The first time he had blood drawn, he was two and they took 10 vials. It was horrible! After that, it was a battle. Now we use the cream and I remind him it will not hurt. Also, for my son, he has to watch. Strange to me because I look away. But I covered his eyes once and that was all he talked about- how I could NOT do that next time. Next time I did not and he was fine. I know the anxiety is the bigger battle. I totally get that. But maybe if you get this cream (assuming you have not used it in the past) and talk about how this is going to block the pain? Maybe that will help quiet the anxiety... Good luck!

Thanks for the responses. As I already knew- tough decision. I have called to start the ball rolling with Murphy. Now I am compiling the mounds of reports to send to her to see if we are a good fit. My son is six and functions relatively well when not sick. I am not ready for the heavy hitters (IVIG or PEX) yet but just want to make sure we are aware of the triggers if they are not only strep. I will post as things unfold. Thanks!

I feel like I have posted a lot these past few days. In short, my son is most likely PITANDS/PANDAX. I am at the point where I would like to get to the root of his problems and would like to change doctors, I think. I am interested in Dr. M because she sounds pretty up to date and works also with the medication side (my son does need a low dose ssri even on his best days) and I am interested in Dr. Storch's program. But I am also wondering if there is something deeper in his immune profile that I need to consider and didn't know if this would be better addressed by Dr. B? Does anyone know if Dr. M will look more completely into the immune side of things? I am exactly in the middle of both doctors so distance does not play into my descision. I would just like to dig as deep as I can this time (the third time down the PANDAX path). I don't think strep is the end answer... although I certainly don't know. So just any opinions or advice as to Dr. M or Dr. B. I don't want to waste any more time with doctors who don't understand the issues.

This is so true. And why we have to push on.

eljomom- I think we travel a very similar journey and all I can say is do not give up. We too, I believe are PITANDS or PANDAX which makes things more complicated. See my last post about Dr. Murphy to see some of our story. I think looking into coinfections and other possibilities is important for both of us. It is very hard to not get discouraged when you see all of these cases that are so much more cut and dry. But from my experience, every time I abandon the idea that this is PANDAX... I get a slap in the face that reminds me- oh yes it is. And I have to recreate my history and remind myself what has been happening. I am currently on my third major PANDAX journey and I plan to stick with it this time until I find the answers. My main suggestion would be to stick with one of the doctors that understands PANDAS and PITANDS. I have wasted plenty of time with doctors who do not. They will make YOU feel like you are crazy because they just have a closed mind.. and then you will get nowhere. I am not sure where you are but Dr. B sounds like a good immune guy. I am considering him as well. And you know I have considered Dr. M. It is my opinion that we both need a dr that is more comprehensive. I do think Dr. T runs more tests... but they still may not dig deep enough. DO NOT think it is too late. I can say that I have seen major improvements in my son when I can keep him healthy. Now I am just trying to figure out how to do that. With PITANDS... the triggers could be very silent.....

tpotter- I can appreciate your response. I do believe that my son is PITANDS or PANDAX. We actually have been on this journey for a very long time. Four+ years actually and he probably was affected from birth or very early. We just didn't recognize it. I had come across PANDAS before and considered it because we saw big gains in language and personality when he would be on antibiotics. He was always sick. 100+ fever every two - three weeks. In 2009 he had his first MAJOR exacerbation. I believe it was around the same time Saving Sammy came out because my mom called me and said she had seen this on tv and I should look into it. I told her I had in the past and it didn't quite fit but I would look again. He fit on paper- sudden increase in separation anxiety (severe), tics, ocd, sleep disturbance, even cussing (at age 3!). But it didn't quite fit the strep profile... until three weeks later when I came down with strep throat. Took him for a culture and he was positive too! No symptoms at all! And then the light bulb went off. So we saw Dr. L and she agreed... on paper he was classic PANDAS. But then he did not dramatically respond to antibiotics or steroids. In hindsight that was probably because he was already coming off the exacerbation. That I can explain... the one question I have is the camK which was only 94. I don't even know what I think that means anymore. At the time Dr. L was not concerned with the cam but wanted to see a response from the abx. When there was no major response, we were told probably not PANDAS and given zoloft for the ocd. Zoloft was a terrible fit for him! At that time, I wanted to change his abx but Dr. L did not see the point. So I consulted Dr. T who agreed with a trial of a different abx. Again no dramatic change. And so we abandoned the PANDAS diagnosis and found an SSRI that helped. So after three months of heavy antibiotice... my sickly child did not get sick AT ALL for four months!! Then he got an ear infection- put on Augmentin- then healthy for six more months! This was amazing for us!! And in this time we saw steady improvement in all areas. Then December 2010- Daddy came down with strep. And the battle started again. We consulted with Dr T and went back to Dr. L. Both told us that so much has changed with PANDAS and he probably is a PANDAX child. ABX for a year but that causes the yeast , etc with us as well. So we have a very tricky balance. My son did the abx for 1-2 months and we pulled his tonsils and adenoids. Adenoids needed to come out because of sinusitis and the ent said they were a mess. Took tonsils as well because of PANDAS and Dr T and Dr L both thought this made sense. On a sidenote, deep cultures were performed and they were negative for strep. But there were strep-like biofilms present and my ent thought that might be significant. Again, not even sure what I think about biofilms. That is another biology lesson on my already over-crowded, over-tired brain!! I did take my son off the abx because of yeast concerns and because his last major trigger was the flu. But he started showing signs of a possible exacerbation last week and I found out strep was in the school. He had complained about a stomach ache and a sore throat ONE day. So I took him for a culture and put him back on abx. So far, increase in symptoms but nothing too bad YET. Never heard anything about the culture but I wouldn't even be surprised if they lost it. That's another story.... As for the other tests.... Dr. T tested for Lyme. He was p41 present but negative overall. I was told almost everyone tests P41 positive and that did not mean anything. We saw an immunologist in the past... but that was during our "healthy" time and although some of his numbers were low, they were not overly concerning. I am wondering if he should get another workup now that he is not as healthy as he was at the time? As for the change to Dr. M... as I think I said, my main goal is a doctor who can help me create a comprehensive plan and communicate with my primary ped. It is my belief that even at his best, my son will always have some low level anxiety and ocd. So I need a dr to manage what he will need for that in addition to the PANDAX needs. For me that means someone who can understand abx, medical help such as SSRIs, supplements and therapy such as CBT... and how they all need to work together. Now in reality, I am not even sure this person exists!!! But it would be nice?? Anyway, I tend to use this board for info and leave short notes like I am missing a piece of the puzzle. In reality, we all are because the research is ongoing. I just want to make sure I have the best info I can find to advocate for my son. That is why I was considering a change to Dr. M. But yes, I do agree that we need to address all possible triggers. I am just hoping maybe she can help me there?? And I am always open for suggestions and to hear what path others have already been down.....

Sounds like some similar stories. My son is young so I am not ready to jump to anything like ivig YET. But also Dr L didn't think he needed it at this point either because he does eventually settle to a manageable place when we get him healthy. It is a bit frustrating to go six months with no contact. Especially when an episode hits as it just has for us. I would love to be able to email! I will probably look into Murphy and Storch. We are in NC so it will not be as easy as dr L but if I can get a more comprehensive plan with one person leading, it could be worth it.

Thanks DeeDee. How did you go about getting into Storch's program? I really would like for my son to have some skills in dealing with his ocd and anxiety and have had a hard time finding the right options. I think this might be a good path to check into more thoroughly. As far as a doctor. My biggest complaint with Dr. L is just accessibility. And it is because she has such a workload. I think her course of treatment has been fine. I do wish she would consult with my local ped. I feel like he is "open" to the PANDAX issues but he doesn't have a great grip on it and I am trying to explain things to him that I do not understand. I would also love a doctor who could give me more complete treatment management. By that I mean abx, ssri, supplements and therapies. Right now I have multiple doctors and I am managing the plan... as I know most all PANDAS parents are. I was thinking the Murphy / Storch path might eb a good fit.

MomWithOCDSon- I was thinking over the similarities between our boys based on your story. I was wondering a few things. I assume he was not on abx since no positive culture after his exacerbation at 7? Did he ever get sick in the years between that and the bad one at age 12? And then at 12 did he go on continuous abx? What about ivig? Sorry. Lots of questions. I do thnk my son needs to stay on abx although we battle horrible yeast issues with him. But then I also worry about things like the flu that cause episodes as well.

I was wondering who sees Dr. Murphy in Tampa and your opinion on her? We currently see Dr. L and have consulted with Dr. T. Both are extremely knowledgeable. I just still feel like I am missing a piece of the puzzle. That is probably typical for a PANDAS/PITANDS mom, I guess! I am also very interested in Dr. Storch's program although I am not sure my 6yo is ready for something like that? Has anyone seen Dr. L and Dr. M? Any advice? I hate to compare doctors but just want to decide if I should see anyone else before our next appt. Does anyone have appointment info for Dr. Murphy?

MomWithOCDSon- I appreciate your reply and I certainly did not want to strike a chord. I actually agree with everything you said. My son has just been a hard case. On paper, you would see his history and say PANDAS. Period- no questions asked. But then after digging further it gets questionable. Original 2009 episode and meeting with Dr. L was diagnosed PANDAS. But he did not respond dramatically to antibiotics and steroids. So she said- not PANDAS. Then he was healthy (and symptoms under control with low dose SSRI) until late 2010 when we saw changes again. Allergist thought PANDAS and we consulted with Dr. T and went back to Dr. L. Both think he is likely PANDAS or more specifically PITANDS or PANDAX or whatever you want to call it. Strep does not have to be the culprit at all with us! I think we have always been behind the curve which is why I have questioned the diagnosis- so a post like yours, this board, going back through my notes always helps me reinvent the wheel and come back to reality. My son defininetly has baseline OCD and anxiety that is present when he is healthy. That makes sense to me because I had it as a child as well. But this is very manageable with low dose SSRI on a daily basis. Any illness will send him into a tailspin. We have always been coming out of the episode by the time we got antibiotics which is probably why I doubted the diagnosis and why we did not have dramatic results. The other reason I have been confused was a cam score of 94. That is not in PANDAS range? Although he was not in full blown exacerbation. Titers have always been low. This past year they had multiplied but were well below range? Myco P. negative. Lyme negative. Just very confusing. I will say that in an episode Motrin helps noticably which is a sign that there is something going on with inflamation. And we do not have a culture result this time but we have started antibiotics. So hopefully we are heading off this episode. He does seem better after 2 low doeses and then being bumped up to the higher does for two doses. I think only time will tell. Of course, I do wonder what the treatment course should be for a virus like the flu? That is what sent him into tailspin last time. There are just so many questions! Again, thanks for the reply and sorry if you took my comment the wrong way. I definitely value the knowledge on this board. I may still be confused but I can only imagine how lost I would be without it!

Thanks for the responses. eljomom- the flu / bronchitis was not his initial episode. Initial episode was thought to be strep plus we think we missed the strep that came before the flu this past time (because Daddy did have strep). T&A was performed because of chronic sinusitis and we made the call to do tonsils because of possibility. Deep cultures were negative but biofilms were found. So I am still onboard that pulling t&a was the right decision. My son definitely responds to any illness- does not have to be strep. That is why we are still not sure we are even PANDAS or PITANDS. OCD and anxiety are normally increased with illness as well. The oddities here in addition to those are added hyperactivity, occasional bedwetting for an extrelmely dry child, cussing, and hair twirling.

So we are still unsure if we are true PANDAS/PITANDS as opposed to pure ocd and anxiety. Our last episode was Feb 2011 brought on by flu and bronchitis. Dr. L had him on antibiotics and we pulled tonsils and adenoids over the summer. Off antibiotics since mid-July. This week he complained of stomach ache and sore throat Monday morning but then said he felt fine. Behavior has just been off ever since and I don't know if I am over-analyzing. I found out yesterday that a child in another class (same grade) had strep so he COULD have been exposed. So my question - I took him to the dr yesterday and they did a throat culture and we are waiting on that. But IF he does not show a positive throat culture, can it still be strep in the body somewhere else? His behaviors are just becoming more odd. Of course, bad weather and little exercise is not helping but it still is out of character somewhat. Thanks for any input. I used to be much more up to speed on all of this until I thought we were non-PITANDS. My brain has turned to mush!

Does anyone have Dr. L,s current email address? Our next appt is not until December and I am seeing signs of an exacerbation. Please pm me if you do. Thanks.

We have been using Enhansa for about 9 months or so for yeast issues. I have not noticed any major changes with behavior since starting but his yeast issues have gotten better, although still there. One word of caution if you do have a child with yeast... start VERY low! In the 9 months we are still only at about 1/4 what would be a full daily dose. We did see some die-off reactions when we started and when we increased dosages. But they would get better after a few days. I use activated charcoal if I can find a time to give it away from supplements... which can be hard! For us, yeast will often disrupt sleep and I would end up giving the charcoal at 2:00 in the morning if he was up. Anyway, when we first began, we started at about 1/3 of their small scoop 1x/day. Just our experience. If you do not have yeast issues, you may be fine to start larger.

We are still trying to determine if my ds has Pandas or not but whenever he gets sick, which is often, he seems much more present and clear. He will be calm and extremely verbal and expressive. Often this will last several days after the time he becomes better and then he will deteriorate again. Interesting about the comment of diet. He often does not eat at all when sick. And in contrast to the calm, this all is negated if he is vomiting as he will obsess over "throwing up". I have read studies on autism symptoms decreasing with fever.

EAMom- why do you say he may not respond as well to future bursts? BTW, Wornoutmom....this is very significant (and he may not respond as well to future steroid bursts).

I don't post a lot but I keep up with the board and have followed this thread closely. Wornoutmom and I are going through VERY similar situations. Down to the doctors and Pandas / non-Pandas, biploar, etc. All I want to say is that we need to remember this disorder is still so new and nobody has all of the answers. If they knew more, we could all take our children to any doctor, run tests A,B and C and take med x! It is simply not the case. SO... we go to the doctors, present our case and take their suggestions. I feel certain that each of these Pandas "expert" doctors are helping each child as best than can and based on what they are presented. That doesn't mean a second doctor might not see it from a different perspective. There is certainly nothing wrong with that. I kind of agree with everyone here. We don't need to bash the doctors. We also don't need to put any of them up on a pedestal so high that we cannot believe they might have missed something. And I know we can all agree we all just want what is best for the children. Now... wornoutmom and dad. I hope you consulted with Dr. T. I did and he did give me a fresh perspective and some other things to look at closer. We just have to keep digging for answers. Good luck!

We did the scd diet for awhile. My son ate a lot of spaghetti (although tomatoes may be out with a salicylate issue). He would eat spaghetti squash, the rice pasta or the quinoa pasta. The quinoa was the best consistency, in my opinion. Also, if you buy a nut flour, you can make fried or baked chicken nuggets. There are good options but it is time consuming. I got a lot of recipes from pecanbread.com. Good luck!!

For those children that get dilated pupils during an exacerbation, how long do they stay dilated? Is it for days during the episodes? Or just when they are in a rage? If just during rage / symptoms how quickly do they seem normal?

MomWithOCDSon- I totally understand where you are coming from. You WANT to know and you want people to give you information. But there are so many parents that do not want this and if you are not ready to deal with it... it will not help. My opinion, at least. I am constantly reminded by the teachers and director at my kids school how much more involved and curious I am than most parents (obviously not like parents on this board). So many people drop their kids off and pick them back up without even asking a single question. Now I want any piece if information they can give me. And sometimes I still wish I had more! I would love surveillance cameras! On the other side though... it is also hard when people are telling you things about your child that just don't fit. Most recently, one of my son's teachers mentioned possible Aspergers when he moved into her class (probably because he does have OCD???). We have been through numerous evaluations and have NO diagnosis. Not even pdd-nos. So when she said that, I kind of took it wrong. I know I should not because I would definiotely want to get help if there was that issue... but it is still sometimes hard to take. So... my only point is this long post was... you have to tread very lightly with people about their children. The parents on this board WANT to know but that is because we are ready to get answers.

Melanie- there are stool tests to check. Doctor has to order it though and you collect at home. Most DAN doctors do this and a lot of allergists. I am sure any dr would if you asked.

We see Dr. L and my son has definite yeast issues... for a long time. I asked her something about his yeast treatments and she told me she didn't really know much about it. But she did say to make sure and give a good probiotic to help with it. It would be great to have adoctor that knows everything... but probably not realistic. We are lucky to have access to her for the PANDAS information. I am curious about the underactive immune system theory. My son is sick a lot.... might be time to get some tests.

Thanks for the suggestions. I forgot about the chart. We used that for both the paci and sleeping in his bed. Doesn't always work but it is better than the prize box. He also gets a daily report at school which works for him. They give either a check or an x mark for 10 different things throughout the day. If they get all checks, they get a stamp and if they use their proper "friendship skills", they get a sunshine award. He really likes to see the stamp and sunshine award on his paper... so it is motivating. But I have also seen him break down in a full sob when he has gotten a bad paper. Talk about breaking my heart!!! But again... it does motivate.

Well and then also his school has had so many cases of strep the past two years. They had to put new rules in place that a child had to have a negative strep test to get back into school because it seemed like someone always had it. I haven't seen anyone with it lately at school... but you still never know, I guess.