KaraM

Thanks!! She just turned 8 last month.

I just logged in and it says 23. I think it must have been an error I agree - just checked and it says 22.

Hi, I am so proud of my daughter! She has been unable to drive any where near our local hospital since January. After dignosing PANDAS and starting abx 5 weeks ago, she has been able to overcome a lot of things. We've continued with CBT/ERP and over the past few weeks, as she has gotten stronger/braver, we started driving closer and closer to the hospital. This evening, we were able to drive past the hospital not once, but twice! Wahoo!!! Hopefully this success will help her overcome some of here remaining fears, most of which are related to that January visit. Thanks for listening! Kara

We have Stonyfield Farm - Whole Milk French Vanilla - it has one S - S. thermophilius. We've been giving about 1/2 cup a day to my duaghter who has been on zithromax for about 5 weeks. It does not seem to be causing a problem. Kara

Voting daily. Sent mass emails to friends/family about ten days ago. Plan to send mass reminder today...

I have not had a problem, but one of the people I asked to said she did...

My daughter started Azithromycin about a month ago. She is 60 lbs and started on a 5 day dose at 300 mg and is now takes 175 mg once a day. She showed improvements relatively quickly. In fact the I gave her her first dose around 10 am. She came home from school aroudn 3:30, played by herself for a little while(which she hadn't done in several months - she always came home wound up and hyper), then fell asleep with her head in my lap for close to an hour. It seemed liked an edge was removed relatively quickly. After a few days, her OCD/germ phobia started to decrease. A month later, I'd say she's improved by about 80%. She definitely has some issues to overcome and has her ups and downs, but her episodes and rages are fewer and further between. They are also shorter and less intense. Life is much less scary for her and easier for us. She did not get worse before getting better. Good luck! Hi all. I am picking up a prescription for zithromax today -- 250 mg per day for 30 days for my DS8, 70 pounds. Is this about what most of you have tried, especially by weight? Also, how many of your kids have seen an initial exacerbation when starting zithromax? My son starts his state testing next week -- is it likely he's going to get worse before he gets better? Any info would be appreciated. Thanks!

Hi, I am going to try to educate the school nurses, adjustment counselors, teachers and PTOs at the elementary schools in our city. The head nurse invited me to their professional development meeting on May 12. I want to put together a one or two page summary - bullet points to go over with them, plus documents that go into more detail that they can keep on file if they want to. (I also want to make an electonic copy of this so I can easily send it to anyone else that may find it useful). My hope is that if they have a child where they notice these symptoms or if a parent informs them their child is experiencing OCD/Tics, they can pass this information on to the parent and encourage them to explore PANDAS as a possiblity. I also want to inlcude info on accomodations school personnel can make to support a child with OCD/Tics/Tourettes. I'm thinking I will include a brief description, the symptoms, resources (like this site, OCDandParenting) other PANDAS websites (like PANDASResourceNetwork, PANDASFoundation), etc. I will also mention PITAND. Has anyone already done something like this? If yes, would you mind sharing what you did? I'd rather not re-create the wheel if I don't have to. If you have something you can send, please email me at karamclaughlin@comcast.net. Also, if anyone has any suggestions on what to include above and beyond what I mentioned, please let me know. Thanks, Kara

I have been wondering about it, too. My PANDAS daughter never had pneumonia as far as I know. But I had walking pneumonia while I was nursing her (6-7 years ago). My son also had it about a year ago (a few months before my daughter started exhibiting her OCD symptoms.) Is it like Strep where it possible to have it without exhibiting symptoms?

Just saw the fish oil post and that it does come liquid...

She was already on the fish oil along with many other anti-inflammatory supplements for another inflammatory condition. He commented that she was on a very good anti-inflammatory regimen. So I would conclude that fish oil would be in addition to not a replacement of inositol. May Thanks May, Angela and Laura. May, if you don't mind my asking, how old is your daughter and how much does she weigh? How much fish oil do you give her? it sounds like your daughter has some other issues beyond the PANDAS, did your doctor say he would have suggested less for PANDAS alone? If you'd rather not post this info, please PM me. And questions for anyone, does fish oil come in a powder or liquid form or only capsules (that's all I've ever seen)? Can you suggest other anti-inflammatory supplements I should investigate, consider?, Right now, I do give her some ibuprofen but would love to replace that with a more natural, less toxic, more healthful alternative. Thanks again, Kara

HI, In the middle of March, before I got our Cunningham tests back and was confident about a PANDAS diagnosis and before starting Zithromax, I started giving my daughter inositol. By the end of March, it did seem her symptoms were starting to improve (or we could have coincidentally having a couple of relatively good days). At the end of the month, her Cam Kinase II came back at 189. March 30th, we started her on .75ml of Zithromax for 5 days and are now doing .375 prophylactially until we have an appointment with Dr. Fuhlbrigge to determine next steps. Since starting the Zithromax, her symptoms have definitely improved, although they are not gone altogether. She seems to have stabilized. We rank her days 0 - 5 (0 would, if it ever happened, be no fear). She's been hovering around a 1.5 - 2.5 She's been able to overcome some major obstacles and achieve some big milestones without any new fears taking their place. If she does start to have some sort of panic, it usually subsides much more quickly than in the past. My questions are: Are the same serotonin issues present in PANDAS OCD as in genetic OCD or are the OCD behaviors in PANDAS children caused by the inflammation? Does it make sense to give the inositol to PANDAS OCD children? Should I discontinue it and see where things go from there? Would it make more sense to replace the inositol with fish oil or something else to help the inflammation? I appreciate your thoughts. Thanks, Kara

How long did it take you to get results back? We submitted ours last Thursday We had her blood drawn on Monday, March 15 and fed ex'd the sample to them. They received it Tuesday. We got an email from them the following Friday. So it was essentially 2 full work weeks to get the initial results for the Cam Kinase II test they run. Last week we received an email with the results for the other tests they run. They were all normal. I'm not quite sure what they tested for (something other than the Cam Kinase II) and am still waiting for the formal report which, from what I understand, should include some interpretation.

I had to scope out a number of different places because my dd has an intense fear of hospitals and I wanted to find a place that didn't feel like one. I found a list of places on our local (Salem, MA) hospital's website: http://nsmc.partners.org/web/service/labs_...each_phlebotomy I think I found this by doing a web search on "phlebotomy" and our city name. Maybe if you try something like that you will be able to identify some labs and call before going. We also had an order for a blood draw for strep, so I did that and the Cunningham draw simultaneously. I don't know what they would have done if I didn't have the order for the strep draw...

I copied the below from Dr. T's post "What is the Cunningham Test" I'm focusing on his words that the other three antibodies aren't as important. "The "Cunningham test" (the name used on this board, not yet widely accepted in the medical community) refers to a special, and as yet research level, test run in the laboratory of Dr. Madeline Cunningham in Oklahoma City. Dr. C is a well-known and world-reknown researcher on strep. Basically the test involves drawing blood and measuring levels of four particular antibodies in serum. These are antibodies to an enzyme called CaM-kinase2 (CAMK2; calmodulin-dependent protein kinase II) as well as three other antibodies (that seem to be less important). One's level of serum antibodies to CaM-kinase 2 appear to be able to predict whether one has infection-related vs. non-infection-related tics or OCD. The most common cause of "infectious related tics and OCD" seems to be streptococcus, and goes by the name PANDAS, but now other causes, like mycoplasma, are becoming recognized. This is the best reference for this tests http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf See Figure 3 in this paper. Also see www.pandasnetwork.org for more basic information on PANDAS. I hope this is not too technical! Dr. T"

I don't think the abx are supposed to impact the Cunningham test results. I asked that before we drew blood. Kathy Alvarez told me the only thing that would interfere would be steroids.

Ditto...189 Cam, all anti-nerutonal antibody titers in formal range. Just got these this morning. Was wondering how to interpret as well since we have not yet received Dr. Cunningham's report.

This happens with my daughter even on a smaller scale. So much of her contamination issues have to do with our house, her clothes, etc. She sees something happen to something (i.e. her brother touches something after touching something else that was already contaminated). When she goes somewhere else, there is not as much history. So she doesn't have issues. (Unless she spends a lot of time there - like her cousins house - then things start to creep up). She also holds it together better around others (maybe out of embarrasment or not wanting to cause problems). For example, for weeks, she could not drive on two of the streets that lead to our house. Our friend was driving her somewhere. I warned my friend (who, by the way, actually is quite supportive), but she thought with all of the other kids in the car my daughter wouldn't notice. My daughter acted fine the whole time she was with them, but as soon as she got through the door after getting home, she stripped and ran into the shower. My daughter said she couldn't stop thinking about it the whole time she was out. (Of course my friend didn't see that part, so she was saying, "see, she was fine, we just did it...."). And don't forget, there are so many kids who hold it together at school and only have issues at home. My daughter has issues at school. While she may become preoccupied with her fears, she doesn't explode or have rages. She saves that for home. There have also been posts either here or on OCDandParenting about children improving when they go on vacation. Personally, I'm hoping for that as we head to FLA in a couple of weeks. It would be nice for all of us - especially her - to have a little reprieve. You are right, it does get frustrating and confusing. You are not alone. Kara

I had a similar experience, except mine was with a nightmare. I dreamed I was on a high, very steep roof and felt like I was about to fall off. I just wanted someone there to catch me. I woke up just as I was about to fall and thought, this is what my daughter is feeling all the time. I need to be there to reassure her that she either won't fall of or that I will catch her if she does.

I was just having this conversation the other day with my brother-in-law. Our daughters symptoms improved for about 4 days after she had blood drawn for the strep titers and Cunningham tests. He compared it to leech therapy as well. She also was having a lot of bloody noses, which, strangely enough have stopped since we started abx on Tuesday. Hmmmmmm.

HI, My dd7 was diagnosed with OCD in December. At that thime her throat culture was negative. In March, her ASO was 200-400. Her Anti DNAse B was 450. Both of these are slightly above normal. She did have confirmed strep two years ago. I understand it is best ot have her titers done again so we can see if there is a change in one direction or another, but when is the best time to do this? We just started Zithromax Tuesday after getting back very high Cunningham test scores. She is on a five day treatement dose and then will be on prophylactic at least until we see another doc in June. (Our pediatrician is not well versed, but I feel thankful he is listening to me, the test results and this board (thanks Buster for the Q&A - I brought it to him and he thought it was very reasonable and well written). Does it make more sense to test her if/when her symptoms are better and expect to see a decrease in the titer levels. Or should I retest if/when her symptoms are exacerbated? Does it matter? Thanks, Kara

Hi Matis Mom, How are you making out on the Zith? Any improvement? We got positive Cunningham results on Friday and are starting Zithromax today. Kara

HI, What kind of test should I request for family members to see if we are carriers? I imagine a blood test. Is it the anti d nase b and aso? Throat culture doesn't make sense to me. Is there another strep blood test I am not aware of? Thanks, Kara

Thanks for your reply. We are in Salem, MA - 15 miles north of Boston. I'm going to say she started exhibiting her OCD symptoms early fall - lots of questioning, " will this make me sick, does that person have the swine flu, etc. It became crystal clear at the end of November when her hands were raw with hand washing, she was holding her saliva and she couldn't get dressed because she was afraid of germs on her clothing. So in the 6 - 9 month range.

Amy's post about rashes triggered this post. She mentioned her child was havinng more and more bloody noses. My daughter has been having more frequent and severe bloody noses as well. I've never read that this is a sign or symptom of PANDAS, but am curious is other PANDAS kids get them a lot as well. I imagine it could just be seasonal, too. Thanks, Kara