Suzan

How long has she been on the Azith? What abs was she on b-4? You should definitely go higher on the Azith. Give at least 250mg/day, although at her weight she could even take 375mg/day (1.5 tablets). Well, she started the azith in July and was on 250 mg's for 5 or 6 weeks and then we dropped her back to the every other day. She was not on any abs before this except to treat her strep infections. I feel protective of our zith stash because I worry our ped will cut us off. But now that I have the immunologist on board, maybe I can stop worrying about that. I'll up it right now to every day at least and talk to the immunologist when we speak in 2 weeks. Susan

Thanks my friends! You know I hold your opinions and experiences in the highest regard and this is what I wanted, your honest thoughts on these meds. I really appreciate it! If the meds she is referring to are the SSRI's, then I agree, this is not a good time to try this. We have not tried a steriod burst yet so I will bring this up with our doc the next time we talk. Also, maybe changing her antibiotics or going back to full dose, although I never felt she had as good a response as I would have liked to see on her antiboitics. She weights 69 lbs and I have a 30 day prescription to 250 mg of zithromax. I am giving it to her every other day at this point. I also give her 200 mg of ibuprofen 2x a day. Susan

We saw our immunologist today. It was a rushed visit, she was over booked, but we are on the way to getting dd some help I think. She is recommending allergy shots to help with dd's multiple allergies. She did not indicate at this point that she would need to re-vaccinate with prevnar. She said she knows dd has PANDAS and an immuno deficency and she needs IVIG. It's just a matter now of finding out of she can prove it for the insurance companies. DD had to give a lot of blood today but they were only able to get some of it. Her veins dry up before we get all the vials filled. She wants to review everything I gave her (family history, daily diary, symptoms list, etc.) and see the blood test results and then we talk again. The doc also recommends a psych evaluation so maybe some OCD meds might help us cope until she can get IVIG approved. I have not thought of this option before so I will need any thoughts from you guys on these meds and whether they may help in our situation. I have a horrible cold and my computer is messed up so it's taking me a long time to type this.... I'll have to check in later. Susan

We have mild OCD here with my 8 yr old but very intense emotional and behavior issues, explosive and angry. She also gets very sensitive to touch and sound. HUGS! Susan

I am happy to hear your update especially since we go on Wednesday and I am making a huge assumption that we will get similar information. I really need time to process the whole allergy shot/vaccine thing. It really freaks me out. Since so far we may have some immune testing on the lower range of normal, there is nothing else so far that is an obvious deficency aside from the strep pneumo titers. Please keep us posted. I am very curious and anxious about how you do with this immunologist. I am very sorry to hear about your other son! I hope he gets better quickly and you are home today. BIG HUGS! Susan

Oh I am sorry he is so sick still! Poor baby. I hope your 6 yr old does not get it. Hang in there and I'll be thinking ofyou. susan

Colleen, how is your son doing? My dd is so much better already, they said that she caught a very mild case of H1N1. She can actually go back to school tomorrow. I think I'll keep her antibiotics up for a while, hopefully that rebound thing won't get us! I thought dd8 caught it but she was just having a PANDAS related episode which I assumed was the flu. Hope all is going better for you!

My youngest daughter does have h1n1. I will be even more worried if (when?) my 8 yr old gets it. I'm glad you guys like that website. I love Dr. Berger and think he's really on top of these types of topics. Susan

http://www.wholisticpeds.com/default.asp?c...55663&n1=19 Please check out the articles on this site. This is a Dan! doctor in Florida who we used to consult with and I trust the info he puts here. He has dosages for all ages for the supplements he recommends. We are home today with possible flu as well. Hang in there and I hope he gets well fast with no complications. Susan

We saw our neurologist today and he helped explain why he ran the titers for HHV6 (and other herpes viruses). This is the best I can do to reiterate what he said... When kids get this virus, a healthy child will process the virus and it will go away. Other kids with immune systems that don't work properly will hold onto the virus and keep trying to fight it in incorrect ways. It is a virus that is commonly causing all kinds of neurological problems. He will be reviewing my dd8's file to see if the thinks the "treatment" might benefit her. The treatment is not agreed upon by all docs because some believe that the titers only show whether or not you had the virus, not whether there are problems... but it is an anti-viral drug. I am worried about this since my dd showed signs of tourettes when she had to take Tamiflu (I never knew if it was the flu or the drug that caused it). Has anyone used an anti-viral drug with good (or bad) results? We see the immunologist on the 14th and he will be sending her his recommendations regarding the new information I gave him (a complete list of symptoms and a daily log for the past month). Thanks, Susan

Thanks everyone.... dd has a fever of 100 so far tonight. She developed a cough at school today and says her chest hurts. When I take her tomorrow to see if she has the flu (if her fever rises), I'll ask for a strep culture too. She is very afraid of the swab so I don't know if they can get it. She usually pulls, kicks and crys or screams. Ugh! Whether it's strep or another bacteria or virus, I guess that explains the increase in symptoms. Susans

Our Dan! doc is our regular peditrician and is covered by insurance like any other doc would be. Susan

I'm pretty sure that after my dd's t&a, this is when she stopped getting strep in her throat. She has not had it again since the surgery, but of course she still gets strep, just other places. This did make me remember that after her ear tubes, she did continue to get ear infections but at least I knew when she got them and could treat them right away. I know totally unrelated to what you are asking about though. Susan

So this is what I get from talking about dd6 and how well she's been doing. She woke up today talking about her fears of bugs and snakes, she does not want to go to college since she does not want to leave me and of her "boyfriend" who she has not seen in 2 years and how much she misses him and how I'm so unsupportive since I told her that it was time for a new boyfriend even though she is only 6 and too young for a boyfriend anyway (yes she'll be only 7 in 3 weeks). She's been crying a lot and had been basically difficult to be around. In a non-PANDAS household I'd say she's having a bad day. But of course I'm thinking episode. She's on 500mg of Zith a week and I give it on Sunday's so she got it today. She does not get strep in her throat at this point so I'm not so inclined to take her in for a swab. I'm wondering if her intracellular strep is just creeping back since she's only on 500 mg a week. I know I've posted these same questions about her before, sorry... But what would you do? increase the zith? Take her in? Wait and see? Anything else? Once I'm positive about our new immunologist, I'll bring her in there for a full workup, but for now, she's not really displaying anything other than pandas, candida and gluten intolerance. Susan

Sam, do you have anything in writing that I can take my immunologist about what SHOULD constitute a failed titer and why revaccinating should not be an option for these kids? Or maybe we can start a list of immunologists who are treating based on these results to offer as resources for our doctors. I think there are only a couple that we no of so far right? Susan

Well, she "failed" 12 of 14 if you are looking for numbers under 2. But I understand there are other immunologists that say it's results under 1 and that it matters which ones. She had 6 of those 12 that were between 1 and 2. I don't know what our immunologist will think of the results. I need to have a plan for what I want to ask her about these titers by the 14th because if I go in and she just says "oh they are fine" I think I'll be pretty upset. I want to have a real discussion about the whole topic but I don't feel like I know enough to do it. Susan

I too believe that my daughter has an underlying immune related issue. We have not found it yet but are trying. Immune related tests also taught me that my girls can't eat gluten (wheat and other gluten grains). I have 2 PANDAS daughters. One improved by going gluten free and getting a good run of antibiotics. She is about 90% right now and shows no signs of other immune related issues. I think her remaining issues are yeast related. My other daughter improved with gluten free and antibiotics but not as much. She has all kinds of strange symptoms so we are still searching. If we are headed to IVIG, I do hope to find something that would allow it to be paid for by insurance. Our total IgG was normal, on the lower side but I don't think it would be considered low. Our total IgA is what I would consider low (37 with low normal 34). Our immnologist was not concerned about this one but we will see how it goes. We are right in the middle of it all right now. I'll be posting once I learn more. Susan

This sounds very much like us as well. We see a Dan! doc and are gluten free. Going gluten free helped us tremendously. My 6 yr old had many similar conditions you would find in a child with autism. Both my girls test positive for gluten intolerance but they have lowish IgA and we think that may be messing with their celiac panel results. Even with all the supplements and diet changes we have made, going on the antibiotics was the thing my dd6 needed to get over the hump with her PANDAS. Susan

Wow, our own online OT! I am sorry about what you are experiencing with your daughter but I am glad she has you to help her through. Thank you for your offer for sensory help, that is really cool. Susan

LOL, it's true!

If dogs can be trained to detect cancer, why not strep? Our dog trainer always thought that our little cocka-poo showed signs of being extra sensitive to and aware of smells and would be a good rescue dog for diabetics. I was thinking this morning about strep and that maybe a dog could detect the smell in urine and intracellular strep might be able to be located (in addition to the smell in your breath which is a little more obvious). I wonder how to go about training a little PANDAS dog Susan

Big sensory issues here. We saw an OT for 2 years and probably should start going again. Some things that we did at home that really helped: Heavy Pressure - I made "pillows" out of felt squares and rice that were about 3 lbs each and would lay them on the girls when they were out of it. Brushing - there is a brushing and joint protocol that you can do at home that really helps to re-train the brain. Redirection with heavy work - I stopped trying to correct the behavior and as soon as it started up I would get them into an activity that worked their body (pushing on a wall, jumping, lifting, crab walking). This was easier when they were younger and it was just fun stuff to do. Swinging or rocking Wrapped tight in a blanket I can't find my favorite site with great activities but I did find this one http://www.livestrong.com/article/14740-de...l-age-children/ This is regarding the Brushing which I think helped us the most over all http://www.ot-innovations.com/content/view/55/46/ Susan

Hi, I hope this helps and anyone please correct me where I may be wrong since I know I am not the expert especially as far as explaining Dr. Cunningham's test.... What is the Cunningham Test? - Dr. Cunningham is a PANDAS researcher and has developed a test that measures CamKinase. Depending on the CK level, the child can fall into the PANDAS range which would indicate PANDAS but her tests are still in research and not yet funded for a full research project. I had my daughters tested and took this test results as confirmation of what I already knew which was that my girls both had PANDAS. Here are her two papers although not always easy reading. http://www.pandasnetwork.org/Cunningham.NMpaper[1].pdf and http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf who are where is dr. Latimer? - She is one of the leading PANDAS neurologists and she is located in Maryland near Wash. DC. has anyone heart of dr. Sayed Naqvi Pediatric Psychopharmacologist ? - No, I have not heard of this.... Susan

We have a few teeth issues here.... DD6 is losing her top front teeth. One will probably be out tonight. Anyone have any PANDAS episode issues with losing a tooth? DD8 needs to have a cavity filled. I have heard that there have been issues with dental work. Any recommendations? Will it help if I get her on full dose antibiotics before getting the filling? Any other adivce, warnings, etc? Thanks. Susan

Thanks guys, I don't know what I would do without you. Susan