lmkmip67

We are on about day 4 of the steroid taper and have noticed some positive things as well. I hope it lasts. We are on the same antibiotics since we just saw Dr. B, too. I started charting his behaviors and such so we will have something to look back on and see it all in once place. When he is doing better it is easy to forget how low the bad points are, and during the low points it is hard to remember that things can improve. so I want that visual. So while I have no input as to if it will last, as we are in the same boat, I would start tracking. I hope it continues for your daughter. Lisa

Ok, thanks! I hear he requires a lot of money up front. I will keep him in mind if we have issues seeing Dr. B long term. I do think I will try to get in with Torres as a neurologist. We have a local allergiest/immunologist because of my son's dairy allergy. So when we see her (in a month, I think) I will be asking her beliefs on this and see if she is open minded. I do think I need to find someone in state, in case of insurance issues, that is willing to work with Dr. B as well.

Thanks! yes, I will PM you. That helps save a bit of work, thank you. I am hanging in there. It is hard to wait, but I will be patient. Ian has been a tad less argumentative last night and today. lol So I can hope. I wish I would have explored this sooner as well. It was mentioned to me right after he had strep and the vocal tic. And I did take him in for a throat culture, but it was negative so I thought nothing more of it, assuming it would eventually go away. It didn't and things got worse. My son isn't as extreme as many things I read here. But he fits with everything I read as well.

Yes, that is my hope. Just to have someone on the "team" that is receptive and open to the idea, not someone that would poo poo the treatment he is getting with Dr. B. I want to get more testing done in general I am not worried about finding someone that would prescribe the antibiotics instead of Dr. B. I just prefer to explore all avenues. I just prefer to get it going than wait months and months doing one thing at a time. I didn't think of checking Mass General, I will check there, too. I will look into Geller for sure.

I haven't yet, no. I meant to download it and read it, but am just so busy now. Does anyone know which doctor this was?I am looking into Torres, simply because he has knowledge of PANDAS. But will keep seeing Dr. B in CT for PANDAS. I just wanted someone more open to the diagnosis. Our pediatrician is very cautious at best.

Despite the fact that we are seeing Dr. B for PANDAS, I still want to have my son seen by a neurologist as he very likely has OCD issues beyond just the PANDAS OCD. But when I go the Children's Hospital site it is overwhelming how many there are. My pediatrician didn't have any specific names except local. But, of course, I would rather take him to Children's and start with someone knowledgeable. I understand neurologists may not treat PANDAS. But if I could find someone that would be open to it, and have heard of it, etc. all the better. So I figured I might ask here for recommendations since there seems to be quite a few on here from the New England area. Thanks! Lisa

Great idea on the chart, thanks! I will do that. Three days in and he seems a little more agreeable. I stress LITTLE, though. lol Charting seems like the way to go.

Thanks. As best as I can figure the total days seem to be at 16 with this bottle. I will just call and ask.

Dr. B prescribed the liquid prednisolone for Ian. But the way the pharmacy put it on the label is confusing. It says 2 1/2 for 5 days, then 2 tsp for 4 days, etc. I know the burst isn't that long, and is only 5 days. Is there anyone that can tell me what the correct burst dosage is for a 7 year old? I can figure it out even with burst instructions someone else got. I just don't think they meant for him to take this for close to 20 days. lol I have to give it to him tonight and want to give the right amount, and of course the office isn't open now. Thank you!

It took us 6 to 8 months to diagnose my son in 08. Initially we did IM Bicillin shots which worked like a charm for 4 months...then he became resistant to the antibioric and it stopped working Steroids made my son too aggressive and behavioral to really see any benefit. IVIG has been the best for us. We did AB and Steroids until we got IVIG approved by insurance- took about 4 months to line up everything. I have heard that for some people who catch it early 1-3 months antibiotics may be enough. Wishing you much healing C Thank you! I would say it was about 6 months for my son. I guess time will tell. Yes, I agree that the steroids can make them aggressive and grumpy. I know they do me when I need to take them for my asthma. So no surprise there.

Thanks, Kara. I think we are just so tired of feeling like we are yelling at him all the time, tired of feeling like we have to watch him like a two year even though he is 7, tired of the tantrums, etc. We are just tired. and I fear that this is him until he grows up. Which saddens me because I feel we yell so much (I am not a yeller, either. hardly ever yelled at my daughter). But as you know these kids are really difficult on their hard days. I try to remember he can't help it. But it is hard. so I think I am just really desperate to help him and hope he gets better. But i will be patient. I am trying to take it one step at a time. I also am trying not to be disappointed because he had such a hard morning today. One step at a time...

We are on day 2 of the antibiotics and steroid. I was feeling a bit overwhelmed at Dr. B's office this last week and I think there are things I should have asked, but didn't. I guess my big question is what should I be seeing or looking for? Should he start improving this month? And after the initial 30 days, if he doesn't improve, then what? Is IVIG automatically next? How soon should I see improvement? Sorry I am so full of questions. If he is diagnosed relatively soon (within say 6 months from onset) does this improve his chances of doing better, faster? I am hoping the antibiotics are all he needs, to be honest. The IVIG makes me nervous and not even sure we could do it. Insurance and funding is a big issue. I am just feeling overwhelmed I think, but all of it. Lisa

Oh, ok. that is very helpful, thank you. I will have them just send it home and mix it myself. How bad was your daughter? That really gives me some hope.

That is kind of what I am thinking. I will do it eventually. But with the office visits of $300 a pop, two in a months time, I just can't do it now. It seems to be helpful to "prove' the PANDAS diagnosis. But if he is being treated by a doctor who believes he has it, it seems like I could likely wait until I can really afford it.

My son is around 47 pounds. He is 7. I do think Dr. B may do phone consults. But I think it costs something, though not sure. I just met him yesterday so don't know. Good luck!

We just saw Dr. B yesterday and have to get some additional blood work, plus get the whole family tested for strep. And go back to see him in a month. All this is out of pocket. He also suggested the Cunningham test. I have read a bit about it and I understand it is helpful. But I really can't swing the price right now. Honestly I can't do it for at least 2 months, there is no way. I may be able to do it then. But is it really necessary? I hate to sound like I won't do what is important for my son but I really do have to wait as we will be hearing about DH maybe being laid off next week, etc. So as you can see, it just isn't there right now. I am going to call Dr. Bs office on Monday and see if I can wait. I would hate to wait to treat Ian until this test. He really felt it was PANDAS, so is giving antibiotics already. Thoughts? Am I the only one who didn't do this right away?

It is a liquid I would assume. I have to pick it up. It is once a day and 200mg.

How did it go? We went today for our first appointment. My son went in the room and insisted on using Dr. B's bathroom. And announced his office haunted (ghosts are the latest fear). Dr. B was awesome! I wanted to take him home with us. We didn't feel rushed or anything and really felt like he cared. I just wish it wasn't so far away. lol

And Ian was diagnosed with PANDAS. We are going to get the blood work that our pediatrician wouldn't order. And start a 30 day course of zithromax, and steroid burst. It was a very long day and a very long drive. But at least I feel like we are DOING something to help him now. I know there could be more treatments with IVIG down the road, etc. But at least we are starting. It seems easier somehow if I feel I am at least doing something for him. And I was so annoyed. He went to the pediatrician on Tuesday for his well check (to be fair, she did not check his nose). He has a sinus infection! She didn't spot it. She did say his throat was a bit red. Checked ears, throat and eyes, but no nose. Anyway, so hopefully the antibiotics will clear that up, too. They are going to try to bill my insurance, though I doubt it will be covered. So now being on long term antibiotics, is there anything I should know? Can I give it after food? He has a dairy allergy, so can only have soy yogurt, which he hates (I don't blame him). So is there some probiotics or something I can give him? We are doing Omega 3 from the health food store already. This site has been so helpful. I feel a tad relieved we have something to try now. We are still going to see a neurologist to do testing, etc. At the very least maybe they can suggest something to help with the OCD fears and such. Lisa

We haven't and I am not sure exactly what it is. I will look into it. I am sure Dr. B would order it, huh? The other thing I was thinking about was gluten. Not sure. This is still so very new. But something is going on for sure. I am just starting the journey figuring out what that is and how to deal with it.

Your very wise and make a very good point about the shows.

Well, we tested some of that. we have done all the food allergy tests year because he is allergic to milk. So I know what he is allergic to and what he isn't as far as food. we avoid those things 100%. I am trying to take it one day at a time. i was doing ok with that until i watched that show. last night. lol

Ok, here is the picture of the results. Hopefully it loads.

I will take a picture of it with my phone, hold on.....too many to type out. I know she refused to order ALL the tests DR. B orders. But she did a lot.

I think it has been about 3 weeks or so since I found this place and really started to think Ian may be dealing with PANDAS. We got the blood work results back today and everything came back as normal. Not sure what that means for PANDAS or not. Our appointment is 2 weeks out with Dr. B in CT. Ian's 3 or 4 tics have really subsided in the past three weeks, right after school started. He still has many OCD tendencies and tantrums, etc. Still very defiant and all of that. I watched the Tourettes uncovered last night and it freaked me out. I so don't want that for my son. I know, none of us do. But I am so scared that will be him. I can't talk to my husband about it because he is paralyzed with fear about all of this for Ian. I am trying not to think the worst. Days are harder when he is tired, for sure. Homework is a nightmare. His teacher knows what we are dealing with, so that helps. Motrin seemed to help when he had the vocal tic, it make it totally disappear. But now that the vocal tic is gone it is hard to tell if it really helps or not. Oh well, just taking it one day at a time. We had a pretty good couple of weeks. The tics being not so obvious makes it easier to pretend he is fine. But I know he isn't Lisa