Mary M

That's an interesting question...one I have not yet had to face with my dd but would echo that a decision about reading Saving Sammy would need to be individualized for each child. There was a time when I would leave Gary's website up on our computer in hopes my daughter would happen to look at it. I do think that it is very helpful to understand that you are not alone in any illness or crisis situation....we all have this forum. But what do our children have to ensure that they do not feel isolated and alone in this? I keep thinking that a forum for our kids would be helpful too...but it would have to be safe and that is a major internet dilemma. Mary from Michigan

Thank you for sharing. It reassures me to know 1) that healing is in the future for all PANDAS once proper treatment has begun and 2) that you can glean so much from your own awareness of the symptoms. May I ask....when you notice a cold or illness coming on, do you get scared and/or more anxious as you await the possible eruption of symptoms, even before the symptoms actually surface?? I think, perhaps, that is what my dd12 recently experienced. She was sick the week before Thanksgiving (first illness since IVIg)and she wouldn't share it but I think she was afraid of a spike in symptoms, even before any symptoms were actually present. Mary

I don't know if this article has been posted on the forum or not... http://jcn.sagepub.com/content/early/2010/11/17/0883073810378534 I can't get the whole article to appear. The above is just the free abstract. If you want to read the entire article email me back at mmcrombez@sbcglobal.net and I will forward the article to you. Mary from Michigan

I also contacted them and got no reply... Mary from Michigan

Our dd12 was in extreme exacerbation for 5 weeks post IVIg. Only then did things begin to improve, very slowly. She has had only 1 IVIg. She is now 5 months and 10 days post IVIg. Mary from Michigan

You never cease to amaze me, Peg! What you are doing for Allie but also how you are helping so many others learn to do for their children...and doctors for their patients. With hope that things will continue to move in a positive direction, Mary from Michigan

Strep can be found in many places (not just the throat) and the skin is just one area that can harbor strep. For what it's worth, my daughter's only documented positive strep test in her life was from a perianal culture due to an awful diaper rash. Your Dr can test for it... Mary from Michigan

I would like to wish everyone on the PANDAS Latitudes Forum a very calm and pleasant Thanksgiving. In our home, we have much to be thankful for....but mostly I am thankful for the support and compassion we have received from all of you. I could not have endured this PANDAS journey without the contacts we were blessed to be given through all of you! In Thanksgiving for hope and continued healing for all PANDAS children and families, Mary from Michigan

Joan Pandas Mom, I think of you so often...You have worked so hard to get to this point. To finally see some improvement is just such a blessing! May you continue to see successes every day... With hope, Mary from Michigan

Your dd's story sounds strikingly similar to my dd's age 7 1/2 PANDAS episode. She did not have elevated titers yet was experiencing scrupulosity and wanted to die. The pain in a parent's heart when their child cries out for death...the fear the child must feel... My daughter also exhibited extreme emotions--sorrow as well as what could only be described as anger yet was something so far beyond anger. The range of behaviors among PANDAS is wide. Thank goodness you found this site and the support that it will bring. I'm pleased to hear you're seeking out the other PANDAS family in KY. It would be so beneficial to find a doctor who will prescribe antibiotics ASAP. Mary from Michigan

Thank you Emmalily. Posts like yours are so valuable to me as a parent of a PANDAS child as you can verbalize what my child can not. I vividly recall my dd's loss of ability to read. She had become quite a voracious reader in the year or two before her second exacerbation last year. And then reading actually became a solace to her as she lost her ability to do other beloved activities (play the piano, play the bass, do puzzles)...and then, painfully, her ability to read was sucked from her as well. I remember her explaining it to Dr K. He specifically asked about her reading and she said she used to read but now she just couldn't any more. She has just recently (at nearly 5 months post IVIg) been able to listen to her IPOD again so audio books would be a great supplement to her reading (which she is thriving at once again). It pains me to see and hear about the losses that PANDAS kids face in their day-to-day function. Thank you, Emmalily, for your insights! Mary from Michigan

Well that is good news. To see such positive changes is truly wonderful! Mary from Michigan

Donated in thanksgiving for all this forum has given my family...the donate page is simple and easy. Thanks for posting the need, I had no idea how this site was funded. In gratitude, Mary from Michigan

Thank you for posting. Two years...and health continues. That is so reassuring. Your message to the parents is so important yet so hard to make real. Thank you for allowing us to learn from you and have hope through you. May your precious child continue to be well. Mary from Michigan

We've been noticing the same in our PANDAS dd. She can't exactly say it like you can but being able to tolerate what everyone else defines as "nothing" but for PANDAS is crushing sensory input is defintely a huge step! Hurray for you! Mary from Michigan

I can't offer any practical help with the 504 Emerson but I'd like to congratulate you on, yet again, taking initiative and advocating for yourself. You are moving mountains, not just for yourself but for all who will follow. Thank you! Mary from Michigan

It will get better with the help of PANDAS docs and the support of this forum. Yes, this is hard, very hard. Prayers are coming your way...you're on the right track. With hope, Mary from Michigan

Emerson...I wish so much for you and you will make it through this...you have before. Your amazing capacity to see who you are, know what you need, and seek out what you want is such a testament to who you truly are, especially underneath all the infection-triggered garbage that takes over sometimes. Your ability to verbalize your "crazy adventures" as you put it is such a benefit for all of us as we watch our children suffer through the same things you've described. As if being a teenager isn't rough enough...then you pile on the PANDAS and things really get challenging. I'm so glad you write about it on this forum... cyber hugs, from one of your cyber moms! Mary from Michigan

Oh Tracie and Doug, Words are not sufficient. My heart cries for you...

One more stressor to add to your life. It is so wrong that some docs won't listen long enough to understand that we parents really do understand the proper way to treat our children/families when PANDAS is the predominant feature. Can't the on-call doc call your regular ped for approval? In our dd's practice the partners all defer to our ped but will order what she verifies verbally by phone. Even my dh's internist provided abx when his titers came back elevated prior to IVIg. He's on his second round of abx as his elevated titers persist.

Emerson-I'm so sorry you are experiencing yet another symptom but assured by the posts above that this is a symptom experienced by so many others. I think the very fact that you can identify your symptoms, explain them and express your concerns about them to this forum is a major step towards successfully overcoming this. You are so self aware and show such strength!

Joan-I can so relate to the door slamming. Our dd12 is 3 months post IVIg and her door slamming has not gone away. Many other improvements but that slamming...I jump out of my skin with every slam. Your ds has been affected for so long...it seems logical that it will take a long time to see improvements (I tell myself this every minute of every day). I am contempleting a second IVIg based on yesterday's behavior flare. If your ds still taking abx? My dd's symptom flare seems in direct relation to the time since her last dose of abx.

Our dd12 had high dose IVIg (1.5mg/kg) over 2 days in mid-June. We can empathize with your worries, fears and basic condition of household function or dysfunction as is the case for those of us living with PANDAS. Our dd's sleeping and eating issues were the only symptoms that had near instantaneous improvement post IVIg. All other symptoms increased after the IVIg and we did not see improvement until after week 5. From that point through now she has had steady and continuous improvement across the board. We have had a few "dips" (all associated with someone in the house having a cold) but the depths have not been as deep as during exacerbations of the past. Yesterday was challenging but she had not taken her 500mg abx. Is your child still taking a prophylactic dose of abx? The daily 500mg dose of abx for our dd is the glue that holds her together. As she moves past the 24 hr mark she gets progressively more symptomatic until she takes the abx. Please know we are all here for you...yes, this life is hard, on all of us...our PANDAS child, our other children, our spouse/partner, ourselves...

1) Your insurance co would not approve it if they did not consider it a valid treatment...just consider how many here have not received approval and have paid out of pocket. 2)Do not feel guilty, you need to take care of your health. 3) We have two unrelated friends who have both been treated with IVIg for immune issues over considerable periods of time...one had her treatments over 25 years ago and hasn't required them any more for decades. This is not a new treatment...and it has been proven to be effective for many immune issues. 4) Re: fixing you to fix him...I have nothing but anecdotal evidence BUT...when all 5 of us were tested for strep (after begging and pleading for months and finally simply stating that since we were paying so much for IVIg it seemed cost efficient to check everyone for strep so that our dd didn't return home just to be living in a strep zone) we discovered that my dh had elevated titers. While he was on abx, MY eczema disappeared. When his 10 day course (that's all we could get the first round of abx) were over...MY eczema reappeared. When his titers were redrawn 6 weeks later, his titers were still elevated and I still had eczema. He went back on a bigger, 30 day of abx and voila MY eczema went away again. So perhaps IVIg may be helpful for everyone in your household.

We, too, believe our dd receives a "treatment" benefit from her abx. She is 3 months post IVIg and we have noticed that since school started increasing her abx dose on a challenging day brings significant improvement in behavior and disminished tic and OCD interference. I have read anecdotal reports of this effect repeatedly on this forum. Dr K has prescribed the prophy dose of abx for our dd for one year post IVIg. He has called in treatment dose rxs for us when we have asked, which we did last night as a matter of fact. But is there a scientific body of literature to explain this effect? Is anyone reseraching what we are all observing? Mary from Michigan