Mary M

Curious, my dd has spent time upside down. We, too, always attributed it to her gymnastics. No SSRI's for her, yet so perhaps there's more than one explanation? Our dd's sensory issues are extreme , that leads me in the direction of a sensory connection.

Hang in there...our last vacation was a disaster at first but once she got settled things improved.

Understandable--every post sends my heart racing as I read about each and everyone's challenges, each post response brings up a dozen more questions and worries. But without this forum I'd be so lost and confused and I wouldn't have the strength to continue to fight for my dd's health and well-being. My wish----that we can each have some peace from this...somehow, some way.

Kudos to your son for his bravery and to you for having to put up with a not-so-happy-ex if needed.

My dd's titers were rising on abx. Dr K said something about the titers could be high for a while (no time frame beyond a while). I'd start abx if it were my child. We had our whole family tested this week with the intent to start anyone with elevated titers on abx ASAP.

peglem--your story...there are no words...to have her cuddle and have hope...what more can any of us ask.

Oh my I am so impressed with how you handled that. I would have been a blubbering idiot. The analogy of diabetes was pure genius. Thank you for how you have helped us all!

You have come to the right place. Everyone here will try so hard to be supportive and helpful. Sounds like you've done your research and have a plan.

Oh, I didn't want to read this post. We are having IVIg next week. But I have been trying to read old posts to get an idea of what to expect and many posts seem to indicate no change or worse until 3.5 week mark. Since we haven't been there yet I am not the best person to post but that's what my reading here has taught me. Maybe one more week adn you'll see a positive change...I know, another week just seems unbearable right now...at your house and mine.

So awesome that you were able to quickly niop this in the bud. The wisdom you will glean here onthis forum will support you through the goodtimes and the bad. Thanks for sharing your positive story. We allneed to hear the good ones regularly.

How you have the energy to continue amazes me...but kudos to you for your efforts and persistence.

My ped called after I read your post. Our experience yesterday made me quite concerned about this exact issue. I explained my fear to our ped and she said if ever someone comes or calls that they should be directed to call her immediately. That as my dd's dr it would be her responsibility to explain. That took some of the weight off my laden shoulders. Hopefully, it can for you as well. BTW-I have the most amazing ped ever...this phone contact was her 3rd today to check on us since our harrowing weekend. She called numerous times yesterday too. She is off on Mondays and Tuesdays, just to put it in perspective. She also emailed me today. I know many of you deal with challenging Dr situations. There are docs out there who believe in this and are trying very hard to help us all.

I wish I could have each and everyone of you over for a "Thank you for your help summer BBQ". Without all of you, I don't know how we'd have made it through the last few days. DD is still struggling, raging but now rages are shorter in duration and there is less violence. And, yes, taking her for yet more bloodwork for Dr K yesterday was explosive. How we all manage through these episodes amazes me...so many of us with such extreme cases...I'd like to invite some researchers to come live here and watch this...maybe then someone could help us all.

, popcorn caught in throat, ch,ch sounds What a great description, now I know how to describe dd's latest tic sound. Does everyone else's child change tics...they seem so transient, one tic comes, then goes and a new one jumps in its place. Is that common?

Can't tell you how much I fear this...how will the system understand if the specialists don't. If they spent just a few days in our homes watching how this unfolds they'd be floored. Have the explanations handy, the medical file all together...oh, I'm so sorry for you.

It's posts like this that will help us all through the next couple of minutes/days/weeks...whatever we can get.

From the website: So important since we're going next week... "Dr. Kovacevic uses Gamunex from Bayer."

I agree, especially with my dd's 166 CamK..and if you extrapolated the numbers in Dr Cunningham's research to reflect the markedly smaller # in the SC subset wouldn't the tail for SC go much lower than the table shows? The neurologist over the week end who saw my dd in the ER had no problem treating her if she had SC but that PANDAS dx was just too iffy for his taste.

This bug that's going around is awful and as PANDAS moms it's only made worse by our already messed up sleep schedule. I feel for you...I wish I had answers. Please know yo are not the only one who had this stomach bug and are sleep deprived. On an aside, I have to admit...I wondered if Dr K was the archetype for the ER writers when they created Dr Kovac. I mean the name is a shortened derivation. Seems a little more than coincidental....

She took a valerian root pill tonight. She didn't like the smell/taste but I told her she must take it for a wile to see if there is an effect. If you don't have much of an effect with one capsule, try 2. My 100 lb daughter does well with 2 450mg capsules. If it works for her, I'll bet she'll take them voluntarily. The relief from symptoms can be pretty dramatic. Thank you, I was wondering about the dosing. We'll jump to 2 if needed. I hope she gets some relief soon. She did have some balanced times today so we are grateful for those moments.

I bought her peanuts a week or so ago when I read an earlier post in which you recommended peanuts and peanut butter. She likes peanuts so it shoul be a good fit. She was eating them when I bought them originally but wouldn't eat any today. But I'm going to have peanuts everywhere...in bowls on tables, in the car...I am willing to try anything. Thanks for the suggestion!

Calmed down? Well, some better moments, still challenges but our flu bug has disappeared and so I am hopeful that we'll continue to see improvement. Dd is taking ibuprofen, her antibiotic and we started valerian root tonight. She also now knows that Dr K has responded and has her scheduled for IVIg so perhaps that will help too. Our ped is awesome...and I truly mean that. We did not call her before we went to the ER Friday night. We did call her before we went Sat morning...and dd was in such exacerbation that the ped heard it all through the phone. She called us twice while in the ER..of course, there was no cell service where we were so we didn't know she called. At the 14.5 hour mark (11:30 PM) I called her for advice. I left my # with the nite answering service and our ped called within minutes. She believesin PANDAS and is trying so hard to help us. She advised us to be sure that we were d/c formally, not AMA as the staff of the hospital was suggesting repeatedly. Our ped called again this morning just to check on us...and is now in email contact with Dr K who is working hard for us even though he is not in the country. How amazing is that man!!! She just sent me an email...we are in good hands with her but she doesn't know how to do what Dr K does. Thank goodness for both of them and all of you one this forum.

She took a valerian root pill tonight. She didn't like the smell/taste but I told her she must take it for a wile to see if there is an effect.

I emailed Dr K just now thanks to all of your support to do so. I know he is out of the country in Croatia so I honestly didn't want to bother him but I appreciate that several of you here on the forum recommended contacting him. I believe my ped would do anything Dr K suggests. Our ped is so supportive of this diagnosis and was so appalled by our treatment in the ER at the world reknowned Children's Hospital of MI. During our 15 hour stay our daughter wasn't even offered food. I had to go to the cafeteria and buy her something to eat. Later, when they figured out I bought her food in the cafe they said she would get a menu to order food. That only happened when after 10 hours we requested a menu. Thankfully that was 45 minutes before the food service closed. I'm pretty sure it was Nancy who had a horrible ER hospital experience. How many of us are trying so hard to help our chidlren and then have to suffer at the hands of the medical community? The food thing was just the tip of the iceburg for us.

Amazing and frightening really...that the mom and family work so hard to guide the doctors toward understanding the root cause rather than just treating symptoms. We can all relate to the herculian effort you have made on your child's behalf. Thank you for sharing your story...it will continue to motivate me. May your son's journey to recovery this summer be quick and as painless as possible.