Mary M

On this eve of Thanksgiving I must simply say, THANK YOU! You have all made such a positive difference in my family's life. When we struggled, you cared, when we wept, you dried our eyes, when we needed information, you shared, when we felt lost with nowhere to go, you shed light on our darkness, when we felt all was lost, you cared...when we found a PANDAS doctor, you cheered, when we saw the little glimmers of success after a steroid burst, you reassured us, when we finally saw improvement from IVIg, you celebrated with us. I may have only met a small percentage of you in person but each and every one of you will always be in our heart. In gratitude and with hope for healing for all, Mary from Michigan

My friend, Thank you for posting....hope for healing for all!

My dd had these symptoms...so, yes, seems PANDAS related to me. Mary from Michigan

Dedee-I know the question in this post was about SSRIs but I wanted to share that I have a friend whose son has lyme. He is in his late 20s and he has verbalized that the treatment for his lyme was worse than the dysfunction from the lyme. He opted to forego further lyme treatment due to the herxing. I'm not at all suggesting foregoing the treatment but I am simply sharing that even for grown ups, who had led perfectly normal lives prior to a lyme dx, the process toward healing can be quite painful and difficult. For this young man, so painful that he gave up and has chosen to live with lyme. Finding the right balance of treatment meds is the ultimate challenge. I'm so sorry things are so challenging right now... Mary from Michigan

Our experience was that improvement post IVIg (we have done 2) is along haul...weeks if not months. It is extremely difficult to be patient after IVIg.

Maybe it was worriedmom? She posted some good little stories with one liners. So happy to hear about school starting...so proud of you! Mary from Michigan

Dd went GF Feb 1...the success has been so noticeable to her that she chooses NOT to eat gluten.

It was an very good segment. My girls were happy because it lasted longer than 30 seconds. They were able to cover quite a bit in the time they had.

We were homeschoolers by choice...long before PANDAS reared its nasty little head. After suffering with PANDAS our dd wanted to go to school to be "normal". We sen ther to school. She ended up at Dr K's for another IVIg. Would that have happened anyway? Who knows. So when she was fairly stable after IVIg #2 she returned to public school and when the level of illness increased in the schoo in October, she asked to return to homeschooling becuase she could feel her PANDAS symptoms again. So we homeschooled her and the symptoms diminished without another IVIg. We have always been very active in the homeschool community so she was always exposed to things (infections and education!) but at least as a homeschooler her infectious exposure was a bit lower in the homeschool scene than in the PS scene. It is a difficult decision, to know what is right for each child at each point in their life. The good thing is...you can try something and if it doesn't work you can try something else. Mary from Michigan

The journey may be difficult....but your nurturing mothering under the most difficult circumstances is beyond words. Thank you all for being such an inspiration to me on this journey! Mary from Michigan

Our dd definitely had spitting as a symptom during exacerbation. Whether it was a tic or some other manifestation of this rotten little disorder I do not know but she has only spit during extreme exacerbation. Mary from michigan

For us, frequent urination was a biological symptom that I can only imagine was related to the inflammation in the basal ganglia (either directly the function of the inflammation within the basal ganglia or perhaps a disruption of the basal ganglia communicating with or even pressure from the inflammation on the hypothalamus). My PANDAS dd not only had the urge to go but urinated in copious amounts all day and all night. Mary from Michigan

http://www.nanotech-now.com/news.cgi?story_id=44990 Mary from Michigan

We have a pool and use the salt system. Our PANDAS dd spent 2 full summers in the water during recovery from exacerbations and IVIg and we thought the pool was most therapeutic. We can not compare it to chlorine as we have always had salt. I do have a NON-PANDAS dd who reacts (rashes, hives, redness, eczema, etc) in every pool that is NOT salt.

My dd's complementary Dr (MD from U of M (Michigan) and utilizes multiple other resources) has her on magnesium supps...we are reaching the third month of about 11 individually chosen supplements and return next week for a follow up. I am compiling my comments based on our observations but I have been amazed at the positive response/function since beginning this regimen. All during a period of time when dh was hospitalized for strep pneumonia and dd and I both were sick with a massive head cold for 2 weeks...and her function has been fairly stable...that was not the case in the past. So, in our case, I do feel the supplements are indeed helping. But I think it is imperative to find a Dr to help you sift through the many supplements and choose specific supps based on blood work/urine. I do not think this is a one pill fits all type of regimen. But other than IVIg (which was worth every penny)...this regimen is paying for itself in daily function.

My dd went to Middle school following her first IVIg so she entered this new environment fresh...and no one in the building really new her prior status. She was functioning so well that the school opted to move her to advanced placement classes after about a week and half in Sept. She was, as was your son, an all A, positive citizenship, student. Then, when the next major exacerbation hit...she could not read, could not write, could not complete tasks that were...just weeks before...simple, could not maintain balance while walking...the school was shocked and amazed at the change. So yes, other children do present with similar changes. It is challenging, to say the least. Fortunately, our school based her grades and the following year's placement on her functional time not her period of dysfunction during exacerbation. They had obvious evidence to support their decisions and we had a Medical 504 plan in place.

After such a long journey, it is nice to see that your ds has had success. Please keep us posted as to this most recent infection and its effects.

Our dd was "worse before better" post high dose IVIg #1 and IVIg #2. Could what you are seeing be the "famous" turning back the pages? The piano element struck me as during exacerbation my piano playing dd could not make music of any kind, simply could not coordinate her fingers to play and then 6 weeks post IVIg #1 sat down and played beautifully. It was quite remarkable...and interesting that two kids could share such a very specific experience of this disorder.

Dr T put our PANDAS dd on biaxin "just in case what she had was mycop" due to a horrible cough.

Peg-you are so strong and courageous and you are such an advocate for Allie.

Thank you for sharing your story...it is so helpful to hear how about the many paths of PANDAS.

Dedee, So sorry to read your story...we met at the meeting in Indy. Recently, our dd started a full range of supplements based on blood work and urinalysis with a MD who also specializes in holistic medicine. We are now just over 3 weeks into the supplement regime, continuing on prophy dose abx, and we are seeing quite positive forward movement in function. So, perhaps finding just the right supplements...oh, and dietary changes (the testing suggested which foods to avoid) along with abx could bring some future relief...but, as we all know...our kids deserve relief immediately! So, the LLMD may be a great next step. Mary from Michigan

Tracie, What wonderful news. We are getting close to the one year mark for IVIg #2 and I, too, am afraid to say anything for fear that it will just come crashing back...but the improvements have been slow and steady, they have continued day by day over the past year. Mary from Michigan

My PANDAS dd complains regularly about joint pain. She's been tested for lyme and JRA. The testing always comes back normal and yet the joint pain remains. For my dd, it is indeed a PANDAS symptom. And a lingering one as so many of her symptoms have dissipated in the past 2 years with daily abx and two IVIgs. Mary from Michigan

My dd was much older than yours and the urine output and the ability to control it during PANDAS exacerbation was tremendous. It is very discouraging for the child as they truly can not control the amount or the feeling of having to go. Abx did not seem to have an effect on this symptom of PANDAS for my dd. IVIg #1 seemed eliminated the urinary frequency symptom entirely but it returned after illness and was not as quickly alleviated after IVIg #2.