Mary M

Emerson, All three of my kids (ages 12, 14, 16) were diagnosed "clinically" with strep by our ped Nov 18. All three tested neg on the rapid as well as cultures. All three improved on abx. The tests are not as effective as we'd like them to be. Frustrating? YES! I hope you are feeling a litle better each day.

What a bright and amazing young boy. So important that he shared his big secret with you. Perhaps he might qualify for the NIH study?

I think it would be helpful for you to be cultured for strep and have titers drawn. My dh had no symptoms of strep but elevated titers and it took months of abx to return his titers to a normal level. My PANDAS dd spent 2 hours at a new friend's house this week end and the friend's brother was sick in his bedroom (yeah--we didn't know about that until afterward). PANDAS dd never saw the boy but she was a PANDAS train wreck the rest of the week end even though she's current;y on a treatment dose of augmentin 2 x per day...yes, unfortunately, your kids could be reacting to you. I'm so sorry, this is so hard.

Thank you for your responses. I have asked because I want to recommend the Cunningham test to a family who is questioning PANDAS but just isn't sure. Since it is expensive, I wanted to learn if others, besides us (our own experience with the test results for our dd totally confirmed what we thought must be PANDAS and the results arrived in my inbox the same day as our intial consult with Dr K-who confirmed PANDAS clinically). I just wasn't sure if our experience was common or not. Thank you, Mary

May I ask: Given that the Cunningham tests are not currently used as diagnostic tools...but you chose to have them performed for your own purposes-- If you had the Cunningham tests drawn for a child you suspected as having PANDAS did the CAm KinaseII and/or antineuronals 1) CONFIRM your personal observations about PANDAS or 2) REFUTE your suspicions of PANDAS? I appreciate your responses. Mary

Thank you for sharing. I have wondered if there is more going on in the bodies of so many PANDAS children. Your story certainly confirms that. May you find help and healing...may we all, Mary from Michigan

Wornoutmom- Dr K specifically asked our dd (you know all about her-teehee) about her reading. On May 26 at the initial consultation she told him what she had been reading. On June 13 she explained that she couldn't read any more. I had observed this decline through March April and May. But Dr K asked dd specifically about her reading. This is a symptom of PANDAS whether there is an article or not. And my oldest dd just suggested we simply write an article and provide it to you for support for your IEP--LOL. If it were only that simple. All this anecdotal stuff, although helpful, reassuring, and supportive (yes, we too have to rewind movies to be sure we didn't "miss" anything) really needs to be compiled into a comprehensive list for diagnostic, treatment and school accomodation purposes! Mary

Browneyesmom, I painfully remember the days of violence and rage. The trip to the Children's Hospital will forever be etched in my memory. You are not alone...even though you feel desperately so. This forum will become your strength and your guide. You story sounds so similar to ours. Many weeks and the five weeks following IVIg were very difficult in our home. We, too, as one of the other posters mentioned were able to create an environment that was minimally invasive for our dd at home while her brain tried to heal itself. I often used my body to restrain dd's aggression. It was sorely ineffective but there is little else to help. Physical restraint, at times, seemed to only intensify our dd's rage while at other times gave her some support. Each moment needs to be evaluated for safety, security. No one is better qualified to do this than the child's own parents....and believe me as much as I believe that, I often felt inadequate to determine what to do. When you are in the midst of it...it is hard to imagine this can ever get better...but there is hope. IVIg and abx are effective. The brain just requires a tremendous amount of time to heal. It has suffered such an assault and needs time to heal. Healing will come... With hope, Mary

We have established a Michigan PANDAS support group. You are welcome to become a part of that. I'm sure wornoutmom will get you the info but if not, PM me and we'll get you connected. Mary

Alyssa, Thank you for sharing your insights. I wish you well as you journey away from PANDAS and into a fulfilling life. My dd12 has already declared that she will not have children as she wouldn't want them to have PANDAS and will adopt as there are emough suffering kids in the world...I find it profound that you, as an adult, share the same feelings about having children. May your path be one of beauty and light, Mary from Michigan

PANDAS has been described by so many on this forum as a roller coaster. Please know it is a long, tedious roller coaster. i say this not to disillusion you but to help you understand that the ups and downs are to be expected (as difficult and challening as they are). Don't give up...time, lots of time, and patience, lots of patience will tell... Mary

The financial burden of PANDAS is such a tender topic to our family. We have discussed this at length in our home. Thank you for sharing your thoughts, Vickie, and spurring on further discussion among us. The issues you brought up weigh heavily on us all, I am sure. Food or function is not a choice families should have to face. Mary from Michigan

Have you had the rash swabbed and tested? My dermatologist swabbed and tested for everything, including strep just from swabbing the skin. Our dd had a perianal rash at age 2.5 and it tested positive for "multiple strep pyogenes" at that time. Topical biaxin (I think it was biaxin--that was a long time ago) and oral augmentin treated it. I'm going to toss this out there for what it's worth. I have had excema all my life (it has come and gone for varying degrees of time). It is typically on my hand. When dd was at her worst with PANDAS my dh and I slept (hah-lay awake waiting for the next bizarre PANDAS event to occur) at opposite ends of the house to cover front and back doors. My excema disappeared (mostly stressful horrible time of my life and NO EXCEMA!) When my dh's ASO and AntiDNAse B titers came back elevated he was placed on augmentin...NO EXCEMA on my hands while he's on abx. Curious? Yes.Substantiated in medical lit? No. But my hand says there is a connection between my excema and strep states in my home...And yes, I did have my excema biopsied for strep. It was negative.

Our dd was diagnosed with scarletina rash after being on augmentin (1440 mg, then 875mg)for almost 2 months. Our ped indicated that it was a possible strep release, that the abx had finally found strep somewhere in her system and the strep was being purged in the form of the rash. Dr K did not bat an eye at this when we explained it to him nor did he offer a different opinion. The ped ruled out an allergic rx to the abx and felt very confident that the rash was scarletina. Mary from Michigan

Joan, I so remember feeling just the same way. There are no words to help in the midst of PANDAS crisis. It is unrelenting torture for you and your son. You are not alone, though. I will keep you safe in my heart as healing comes..because healing will come, it will. If you need some homeschooling resources, PM me. We have been homeschooling for many years. Mary from Michigan

Dilated pupils is on the list of PANDAS "symptoms" You can view this list at http://www.webpediatrics.com/pandas.html\

On numerous occasions, we've seen nearly a 360 degree turn in symptoms 40 minutes after a dose of augmentin. We also saw a strep-scarletina rash erupt after being on Augmentin for nearly 2 months. Dr called it a strep release. Don't recall getting more sleep during exacerbation but each child is different. I look forward to more posts from you about restful, wonderful sleep. Sleep can make such a huge difference in EVERYONE'S life. Mary from Michigan

Thank you for all you do!

PANDAS/PITAND seems right. My dd did not test positive for strep on a rapid or a culture during her first major exacerbation. She also did not have elevated titers at that time. During second extreme exacerbation she did not test positive on a culture or rapid BUT did have elevated titers...no illness...well other than PANDAS. Hope it helps to know others fit a similar presentation, Mary from Michigan

So, at first this might not seem PANDAS related but what if somehow this is why some of our children suffer from "the pain of wearing clothes, the sound of talking, whispering, music, sensory issues, etc". I do NOT mean to imply in any way that our kids have had a stroke but perhaps the inflammation in the basal ganglia, which communicates with and lies quite near the thalamus, results in some pain and sensory processing issues that are in some way related. The only bad news is they seem to know less about Thalamic Syndrome than PANDAS. I work with a nurse who was just diagnosed with this so if anyone has any futher information she'd be very grateful to learn more. http://en.wikipedia.org/wiki/Thalamic_syndrome http://www.strokesafe.org/resources/thalamic_pain_syndrome.html http://www.centralpain.org/ Mary from Michigan

Hi Gage's Mom, Welcome...your son sounds so much like my daughter, your life so much like mine. We are all in the same stormy sea and this forum is our lifesaver..it buoys us when the seas are rough, educates us when the storms abate and anchors us in support throughout. What to do (I wish we knew the best options for everyone but each child responds differently to so many "treatments"): Overall: A PANDAS specialist is your best option. For sleep: Valerian Root helped us a little with sleep. To help reduce inflammation: ibuprofen was helpful for my dd Antibiotics are invaluable for us. Keeping a written log was so helpful to me (a burden at times, but a fabulous tool). We did opt for IVIg and that has also proven extremely beneficial. No words can truly express what a PANDAS family experiences...and few words are empathic enough to express my sorrow for your family...but this forum will help you through the stormy seas. Mary from Michigan

Yes, I was definitely stressed about it when I finally did notice that it was coming on (Wednesday night). But I'm definitely not as scared as I used to be of the symptoms themselves, I'm more stressed about missing out on something because of them... so hopefully your daughter might get more comfortable with the possibility of symptoms as time goes on. Emmalily, Missing out on things..that is such a common thread. My dd12 acts as though she'd like to do something or participate in some activity but then stresses over it and opts out. And I think, like you, she stresses over missing out too even when she makes the choice to withdraw from the event. I am so glad that you were able to maintain through this particular round of illness. This shows some amazing progress. That in and of itself should really help to keep you positive on good days and not so good days. Mary from Michigan

I'm all for 50000 kids properly treated for PANDAS and improving every day! With this group...the sky's the limit!

Thank you. My dd12 recently stopped taking her daily dose of ibuprofen. I have been worried about the side effects. If she needs to return to regular ibuprofen use again I will be sure to add glucosamine to her regimen as well. Has anyone had any anti-inflammatory success with the natural alternative phytoprofen? Mary from Michigan