Suzan

I clicked other for my profession, I'm in Information Security. Also, I clicked Never for any OCD or Tics before PANDAS but for us, there wasn't much "before" since my kids were babies before they started displaying their PANDAS symptoms when they were toddlers. Also, I clicked no for history but I would say we have mild OCD in our family but nothing that would be considered a problem or even diagnosed. Susan

lyme mom, really great post about lyme, thank you. I was wanting some of that info too. I went out after and was reading more tonight. I've read up on lyme in the past and felt like it was not my daughters. But tonight, I read something about the bulls eye rash where it was commonly mistaken for a spider bite and I was brought back to a time where my daughters did have a rash like this that I assumed was a spider bite. I honestly can't remember now which daughter it was or if it was both. So that brings me to my question which is, if you are already on full dose, long term antibiotics, is it important (or even possible) to find out if they had lyme? Thanks, Susan

Only one doc on the parent's list from Ohio, here's the link to the list by state: http://www.latitudes.org/forums/index.php?...;hl=doctor+list I hope he has a great day today. Glad you are all going in tomorrow. My 7 yr old kicks and screams for the strep tests too and people have to hold her down. It's awful. Susan

Hello and I am so sorry for what you and your son are going through. Where do you live? Do you have access to a good doctor who knows about PANDAS or can you travel to one of the specialists around the country? Susan

edit

I have one daughter (8) who had horrible tonsils and adenoids, very large and caused her all kinds of trouble. They were removed 3 yrs ago. I have another daughter (7) who's tonsils look great and have not caused her trouble. They both have PANDAS and have both had similar issues with strep. After my 8 yr old had her tonsils out, she stopped getting strep in her throat but she still has trouble with strep elsewhere. My 7 yr old doesn't get strep in her throat now it seems either. They both have low titers as well. So I guess that's a long way of saying that if Lauren's tonsils look good and she does not get strep in her throat, I would be inclined to leave them in if there is nothing wrong with them. That's the stance I'm taking anyway with my 7 yr old. I just hope she doesn't end up having trouble when she gets older because then I'll be wishing I went ahead and did it now, you know? Susan

I'm sorry, I don't know, my dd has shown signs of possible tics starting but has never had them continue. Susan

I think the only thing he needs to be on for the celiac test in gluten. As long as he's eating wheat every day, the test should work, unless I just have never heard of those other things affecting the test, although I know false negatives are common in children anyway. His symptoms do sound very celiac. I would get the panel done and then give it a gluten free trial even if the test comes back normal. Have you ever tested his thyroid? I have trouble with my ferritin, iron and vitamin D levels and don't absorb them well even with supplementation. I am so glad the IVIG went so well. Such interesting observations! I've been thinking of you guys a lot. Especially since we are in the throws of possible allergy shot reactions! Things aren't too pretty here right now and I'm confused. Melanie, my dd had burning hands and feet. Our Dan! gave us P5P b6 which made it go away. I don't know if that would apply to leg burning too but I thought I would mention it. Susan

LOL!!! I love you Dr. T!

Well, she has always been very allergic. This year does seem worse though. She has had allergic dark circles and bags under her eyes since she was very young. I do know she is highly allergic to dust/dustmites and this is a constant battle at our house. She and I are both worse right now than we have ever been in the winter, so something is going on. Susan

Hmmmm, we have one poster here who has Dr. B saying no allergy shots and another who he recommended allergy shots. I wonder if he has changed his stance or if it is a different recommendation per child?? Dr. T originally said no shots but then changed his thought and said to let my immunologist call the shots on that one since it was not his area of expertise. Memom - My immunologist said the same thing as Dr. B, calm the immune system. But I heard also that IVIG takes care of allergies? Have you ever heard that? I had not heard that the IVIG would not be effective if allergies were too bad. She has been skin tested and is highly allergic to dust, cats, most trees, grass, weeds, some molds, mildly allergic to dogs, and probably other stuff I've forgotten. She falls apart when not on the nasal steriods. Faith, we've tried all kinds of things but I have not tried this product you mention, I will look it up but I am suspecting it won't help. I appreciate the conversations about it. I agree, I am highly suspect too, but I guess I'm feeling like we need to do something and so far, this is the only other thing that seems like a possibility. But I won't continue if it causes too many issues. I do wonder though, do they do immune therapy for others with other autoimmune conditions? I'll need to look that up and see what the stance is. Susan

I took dd8 for her first allergy shots on Monday. If you remember, she was not well last week but between the allergy medicine we started and the yeast meds, she was starting to do much better and I was seeing some really good improvement. After the allergy shots on Monday, she had very itchy eyes and skin and she said her feet hurt. Next night, she said her feet hurt and she was pretty emotional and tired. Tonight, we had a marathon homework session where she was unreasonable and impatient and most of the evening she was running around after me asking if I'm mad for any little reason. This morning she had a hard time getting ready for school but said she had a good day at school. These allergy shots, I just don't know. In theory it seems like a good idea, calm down the allergies and they won't trigger the episodes. But I'm worried about what they might do to her now. I don't know how I'll know whether to continue or not. I guess I'll do next Monday and just see how it goes but I really don't know if I've made the right decision by trying this. Susan

Wow, poor little guy! (about the throwing up!). I'm glad he is doing well and you too. Good luck tonight and tomorrow too. Susan

Is today day 2 of IVIG for your ds? Thinking about you guys... Susan

No, she does not tic, she has had moments where I thought one was developing but it never continued.

For my dd's adhd behavior, we have used a product called Attend by Vaxa with success. It seemed to help her stay in control at school and focus better. We also have a 504 plan for her which is new so I don't think I'm using it as I should be but it is good to know it's there if she has an episode or anything else goes out of whack. Susan

I think that's a good idea and a trip to see both Dr. B and Dr. T maybe could be coordinated in the same trip (I sometimes wish we had done this). I know Dr. T is not one to jump right away to IVIG unless he thinks it's necessary and does look at all other options first. Susan

I use L-Theanine (200 mg dose for my 72 lb dd) for calming plus a melatonin. It has helped us. Susan

My daughters rarely test positive for strep in their throats and they have low titers and they are antibiotic dependent right now! Man, this type of response from doc's does get my blood pumping. I would do what you can to get another opinion and find some long term antiboitics. Sounds to me like you are on the right track and need it! Susan

I will be interested in hearing what happens since I have UHC too. Good luck!

Now it may be hard to tell whether it was the yeast treatment or the change in allergy spray, but dd8 is doing much better. I am tending to think the yeast treatment was helpful but the allergy spray is what has made the biggest difference. I think this was a learning experience for me to see how much allergies really do trigger my dd. Susan

I am sorry, good luck to you guys. I wanted to also add, my dd8 acted like a dog (like Vickie's ds). It is hard but you will find the right treatment. Susan

I got the same strain of strep that my girls had when they got this mess when they were toddlers. I swear that strain messed me up too. I am so sensitive to sound now and have a few more sensory issues than I had before and I do have mild OCD. I always thought it was from having 2 kids constantly around me but now I wonder.... Also, I went through a period of time after that where I was in constant fear of everyone dying or being stolen. I thought it was post traumatic stress disorder from my son dying. But maybe it was the strep. I had my tonsils out when I was 5 from constant strep. But my mom says I never showed any signs of anything that seems like pandas. Susan

Hi, I'm sure what we do won't help from tackling the OCD since I've been a poor student on that front so far.... But, my dd7 has food issues and has had trouble with her weight and size. Going gluten free helped the most for her (daily gas, diarrhea, stomach pain, low energy, slow growth and no weight gain all turned around). I can't remember if you do gluten free or not...... But, even now she is picky and her pandas takes away her appetite. I give her Ensure (we buy the generic) and also high protein chips and other snacks so at the very least I know she's getting protein and some good calories. I also mix Chia into her oatmeal (when she'll eat it) and I'm always looking for ways to sneak them into her diet. They help make me feel better about the nutrition she may be missing. She also gets a high quality broad spectrum multi vitamin every morning and night. http://www.thechiaseed.com/ Susan

I am so glad you are seeing an improvement. Good luck today! I hope you see a drastic difference from last week!! Susan