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Meg's Mom and anyone else with ideas... I am struggling with the whole motivation idea. In the past, I have used the prize box. Again, my son is 4.5 so this can be very motivating. BUT... it also tends to become something he obsesses over. Then all he talks about is the prize box and wants to look at everything, take it out, put it back in, etc. Same goes for a new toy/book incentive. All he talks about is going to the bookstore, for example. Then when he goes, afterwards he obsesses over something else he should have gotten and wants to go back and change. Any ideas for getting past this? Of course, he also does not eat much these days so something like ice cream as a reward does not work. And again, the big trips as a reward seem so hard for a 4yo in general, much less one with OCD. It is funny to me in hindsight to think back when he gave away his pacifier. He was not in an episode and did it much easier than I expected with a toy as a reward at the end of a week without it. About two weeks later, I tried it again with sleeping in his own bed through the night and it backfired. He just obsessed over the toys and was in an episode (in hindsight) with severe sep. anxiety. Then he started asking for his paci back too. This is tricky parenting!!

I think the research is coming together. It is not completely understood yet and so I think sometimes I pick up more on her sort of thinking out loud. I still am confused by the research because I was shocked his cam was so low... just based on obvious exacerbations following illness. His history looks very classic pandas and he still may be. It is just confusing because we did not get dramatic results following steroids and abx. We didn't discuss the zoloft and tics since tics are really not an issue with him. Only slight when in an exacerbation and nothing anyone else would probably notice. We are not sure we have gotten all of the strep. He does not culture positive in the throat and we had thought it was in his gut? Hard to know that for sure. But we are continuing abx for at least two more months. I now chart everything. Sometimes too much. But yes, I do note his illnesses and then the symptoms that go along with them. Last two MAJOR ones were six months apart (strep in March, viral in Sept)... but I am not sure when we were at a baseline for him. He is only 4.5 and we have been dealing with his issues for over two years. I am sure we have missed lots of things that are confused with normal development / delays. We do not culture everyone. I think I am going to have my husbands titers run at his dr appt next week.

Yes from Cunningham test. The anti-lysoganglioside and the anti-tubulin were elevated. Dr L said that the research will probably show these elevations correlate to ocd. Again, Dr L is not sure if he is or is not Pandas. But she is looking more at his response to the abx and steroids. Which like I said, he has had slow and steady progress... nothing "dramatic". This is our first time trying any ssri's. So we will see what happens. He only has slight tics when he is in an "exacerbation". No major tics.

My son is more "chronic". Really an alphabet kid that no one can quite put their finger on. We are working with Dr. L and she does not look at the cam as the only diagnostic tool. At our first appt she believed he was PANDAS. But he has had slow and steady progress over 2 months Augmentin and a 30 day steroid burst. Not dramatic change. So that is why she is not sure. His anti-neurals are elevated that apply to ocd. Now the question is regular OCD or Pandas? He has definite increases in symptoms but not only from strep. Last major exacerbation was from a normal virus. It was the worst we had ever seen him. That is why we went to see Dr. L. He has had an exacerbation from confirmed strep as well. So.... as has been the norm in his life, he is a hard one to peg!! I am thankful to be within driving distance of Dr. L because I do believe she looks at each individual and has so much experience. Right now we are continuing abx and trying zoloft. The zoloft might give us another indication of which way to go based on what I have read from other PANDAS parents on this board.

I just posted about my son's "normal" Cam number. If I look at his OCD and anxiety as non-PANDAS, does anyone have any information as to how these symptoms increase and change with illness. My son has definite periods of increased symptoms following illness (not only strep). For example, separation anxiety might go from a normal of a 2 for him to a 9. Same for emotional issues. I am trying to wrap my head around PANDAS vs non-PANDAS. It can be very confusing since it is obviously illness affected... but possible not true PANDAS. Verdict is still out... but I just want to cover all of my bases!

I was wondering if anyone on the board had Cam numbers for baseline and exacerbation. It seems that a lot of people have a high number when they were not in an exacerbation. My son's score was "normal" during a normal time for him. Have not had a new episode to retest and not sure I need to. Just curious. We are working with Dr. L and looking at the whole picture with abx response and steroid response but I was just curious for my own reference.

For us, the test did not give me the answers I had hoped for. My son was NOT in an exacerbation at the time and he had a cam somewhere in the 90s. That would put him in the non-PANDAS range BUT he has classic PANDAS presentation. I was actually shocked he was that low, although two of his antineurals were high. Selfishly, I wish I had not had it done since it confuses me but as far as research is concerned, he could be another piece of the puzzle. We work with Dr. Latimer so I was not depending on this result to get the help we needed. And she did not change her protocol after we got the number. It is a hard call now that the cost has increased. I do still believe it can be helpful but we just have to remember that this is still in research phase and they do not have ALL of the answers yet.

I agree with Suzan about keeping a log of behaviors. My son is 4 and he gets very rigid with his thinking when he is in an episode. Just like what you described. It could be typical for a five year old but it would be worth noting and keeping watch.

Thanks for the responses and I hope to hear more stories and opinions. Smartyjones- I have not spoken to my doctor about it all yet. We see Dr. Latimer and we will be going back to see her early January. This will be right after we finish a steroid burst (15 days in now). She wanted to see him after that. Fingers crossed that this is recovery!!!!

I wouldn't rule out PANDAS. My son's Cam was "normal" at a time when he was not having symptoms and Dr. L didn't even seem to bat an eye. Like Elizabeth said, this is still in study mode. There might be circumstances that affect these numbers that no one understands yet. If you look at our clinical picture, it is class PANDAS and so that is how Dr. L is proceeding. I do understand though. I was shocked when the CAM was "normal" and felt kind of lost until I spoke to the doctor again. But when these doctors are not using this test as THE definitive test, you can't look at it like that either. Don't give up yet!!

What should I expect as far as sawtooth recovery? My son is 14 days into a steroid burst and month two of Augmentin (increased does after first month). I see lots of ups and downs. He seems so much more animated and expressive in general but then the anxiety seems to still be high and we still see the rages. The rages do seem to be shorter and maybe not quite as intense. But they are still there. It is hard to see the forest for the trees, I think. But would it be normal for symptoms to improve while others are not?

Also, call and talk to Andrea or Faith at Dr. L's office. Just ask them why she wants you to come up since you just saw her in October. We saw her in October and she wanted to see us again in two months (January). So it may just be normal scheduling for her. Also, someone on this board said she is not doing phone consultations anymore. But we just had one in November. I think that may be for new patients. But I would call and ask Andrea your questions. I have found them to be helpful. I don't know what else she would see on this test that would really alarm her. And if it was that serious, she would probably want to get the ball rolling. I would tend to think it is just normal procedure.

Well what you just posted was what I was about to say! I think they are all good and a step in the right direction if you believe your child has PANDAS. We see Dr. L. I think she is extremely knowledgeable and looks at each child as a unique presentation and protocol. I have been very pleased that we made the trip from NC to meet with her. She is hard to get in touch with though. That is the only negative I could possibly say. But I can speak personally that I believe she is a good option for a PANDAS child. As for what others say on this board, Dr. T and Dr. K are great, too.

Have you ever seen her in person before? The Cunningham is only part of the picture and she may want to see you in person to observe for her full diagnosis. When I was unsure if we should come to her, she told me based on what I told her it sounded like it could be PANDAS but she would need to see my son to make a diagnosis. Don't freak out too much.

I agree with what everyone has said. It came across fine but there was just not enough time to get into the details. I hope Lauren continues to improve and then they will have everyone back on. I feel like that might be more beneficial. This might have been a bit premature because they seem to want to put too many disclaimers in that this MIGHT be the issue and there COULD be other issues. But, Dr. T, Lauren and Lynn all did great jobs! I am recording Dr. Nancy and I hope Dr. T will have more time to get into details.

Thanks for the reply Vickie. I am hoping that my son will follow a similar pattern as yours. We have been seeing improvement but I don't yet know if this will be a true setback. Sometime I think it is sawtooth... sometimes turning back the pages... sometimes I have no idea!! I keep a daily journal with all pertinent info. I have for years. It has been a life saver for me. The sleepless nights coupled with stress, another child and a full time job... I can barely remember my name...much less see the actual picture with my son. So I write down everything. I am still hopeful. So good to hear a story like yours where you seem to be getting some good recovery with the abx! Keep us posted!!

Thanks Mati's mom. I was thinking about taking him in but he seems to feel better. Just attitude problems right now. He is on 800 mg Augmentin and the steroids. So I am not sure what else they could do. I did e-mail Dr. L but have not heard back yet.

That is great news. What treatments have you done? We are 12 days into a steroid burst, month 2 of abx. Last night his cough sounded croupy, he had a stomach ache and vomited. Now today he is irritable and we just finished a raging meltdown. I thought we were improving and possibly turning back the pages until yesterday. Now I am worried we are setting up for another setback. So I was curious what had helped your son get here. We suffer episodes with every illness as well.

I agree with what DCMom said about Dr. T. He is on this board and did a post a couple of weeks ago introducing himself and encouraging any of us with questions to contact him. It makes a huge difference when you talk to a doctor that understands and has experience with this. I know you have some doctors you like. It is just so easy to get off track. I wasted a whole year with misinformed doctors after I "thought" we were dealing with PANDAS. Just my two cents worth. http://www.latitudes.org/forums/index.php?...&hl=rosario

A lot of people on this board have reported exacerbations from h1n1. My son had it but luckily got over it rather quickly with medication. He was already on an antibiotic and we did not have any secondary infections. But we did get an exacerbation and are still dealing with the residual issues.

I agree with everything Vickie said about school. We have an IEP as well (even though he is four and in preschool). It took me some time to accept it but it is worth it to get the services. Get him tested as soon as possible. Like Vickie said, it is almost impossible to get qualified for services. And honestly, we have had services in school and private. The services in school have been the best because it helps him deal with his issues in the school environment, which is stressful for him. Also, the IEP can have special requirements put into place for things like taking tests. For example, if your child freezes up during a test because of fear of failure... they can stipulate extra time, fewer questions, oral exams, etc. Again, not easy to get... but it sounds like you are used to fighting for what your child needs. IEPs are their own animal... be prepared before you go in. There are web sites to help.

This almost makes me cry. This is my child during an episode. And he comes across as a spoiled brat. People don't understand what is going on. And I have to add the new toy fixation to the fact that he always doubts his decision. So he is constantly asking to go back to the store for something else he saw. Interesting to hear it classified by someone else as OCD. I always knew it was.

For me, that is the comfort of this board.... having other parents that understand this is not normal. And it is not my child being a brat. And my child does not just need more discipline. And this is not the same as another child's everyday tantrum. Sometimes when I am talking to the very few people I have told anything, I see their faces and they compare it to another child. I just stop talking. It is hard to understand it until you experience it first hand.

Welcome to the board. You will find a wealth of information here and lots of parents to help you as best they can. I saw a lot of similarities in my son when I read your post. My son is only four though. I did not recognize a lot of his actions as OCD originally either. It can be confusing in a younger child. My one suggestion for you is to find a doctor who understands PANDAS and is up to date on the research. I suspected PANDAS twice before and was told I was wrong. I love my pediatrician and he is very open minded. He has been as helpful as possible on our whole journey. But during our last exacerbation, he agreed that it might be PANDAS, but he ran the "wrong" tests and ruled it out based on the results. He told me that was not our issue. I don't blame him for this (and he plans to talk to Dr. Latimer to get up to speed) but I would still not know what we were dealing with if I didn't follow my gut and go to Dr. L. There are several doctors mentioned on this board. And some will consult without you having to travel to see them. Just something to keep in mind if you feel like your doctor is unsure.

Laura- I just wanted to add that we are in the same boat with the yeast issues. That it is why it is important to stick with a doctor that understands PANDAS. The yeast is a problem, but the strep is a bigger problem and I think they all affect each other. So we are trying to deal with the strep and then will try to deal with the yeast more after we get this under control. I also think that after we get or strep under control, we may still have some issues that remain, like true anxiety. But I know that the strep / PANDAS definitely dramatically worsens all issues. So don't give up on eradicating the strep for fear of the yeast.