peglem

I'd boost the zith- better safe than sorry! Those blips make my heart sink- very difficult to just do nothing.

Good points! I wonder where Dr.N got the raised titers criteria? I know this was mentioned in Swedo's study participation criteria, but wasn't an either +swab or titer evidence? I also wonder if Dr.N "rules out" PANDAS based on negative titers, making some patients believe they do not have PANDAS, when they actually do.

Who is this mystery emailer?! I am so lost. D: Check your PM

Thanks, Everybody, for celebrating with me. I'm definitely feeling the love! But I have to say, I take very little personal credit for this. For years and years I pushed and tried anything and everything to get help for my child...and I went through this period of time where I was furious w/ God for not miraculously healing my child. But for all my efforts (we're talking 10 years here!) nothing I did worked and she got worse and worse. It was only when I made peace with God, admitting that I was powerless and "agreeing" to just follow this journey wherever he wanted us to go, and accept whatever was in store for us....That's when things began falling in to place. My anger dissipated and the journey led to ACN (before PANDAS had its own forum and most of us were posting in tourettes/tics). Its only been the last year or so that anything has been effective, and that coincides exactly w/ the my spiritual journey, So, I'm giving the credit to "a higher power." All I did was try to follow his guidance. Okay, I'll give myself a little credit- it was very hard to give up control- big struggle for me, but that's it. Everything else just unfolded the way it was supposed to. I know there are some people here who are not believers, and that's okay- just hope I didn't offend you with my beliefs.

Okay, PANDAS MESSIAH, definitely a better pseudonym! I'm confused! (wish that feeling was more unfamiliar!) Was the email sent by the famous, self-proclaimed authority?

Well, thanks for straightening that out for me! No, interest in joining the email list- she irritates me! I respect that she shared her experience and brought attention to PANDAS. Just feel like her celebrity status is overdone and her experience is overgeneralized. Anybody ever seen that website "SHUT UP ABOUT YOUR PERFECT KIDS!"? Its done by 2 sisters who both have children w/ disorders- its kinda funny.

I'm confused! (wish that feeling was more unfamiliar!) Was the email sent by the famous, self-proclaimed authority?

Actually, I stole that from her pediatrician.

Augmentin (not XR) was tried many times back in the early days when we thought it would be enough just to do a course of abx when she tested positive for strep...it was not effective, either in eradicating the strep or reducing symptoms. But, we've never been on it long term. (14 days max) It was also the abx she was on post tonsillectomy (10 days). It does, as I've mentioned before, give my daughter raging, vag-on-fire yeast problems, so we are unlikely to go on it long term ever. But, putting up with that in combo w/ the rifampin for 10-14 days is worth the results we have seen from it.(small miracle) This leads me to believe that one of the things "broken" in my daughter's immune system is the part that signals destruction of cells that have been invaded. At any rate, that pretty much sums up our experience w/ augmentin. On your other question, XR vs reg, I would think the XR would be better, just because you have less "down time" with low abx levels in system.

We are 10 days out from Allie's 3rd IVIG (I'm only counting the high dose ones, which we've been getting every 4 weeks). We don't really have a baseline to measure improvement against, since this started so young, so we really don't know what to expect as far as improvement. But, we no longer feel that an exorcist would be a reasonable course of action! With her anxiety so greatly reduced, I've been thinking I need to start working on overcoming some of her issues. But, I've been afraid to confront her fears because I've become habituated to the monster that used to emerge. Well, we were having a pretty good weekend. When Allie was taking a bath Sunday, she poured cups of bath water all over the floor- LOTS! I got huffy and made her help clean it up- She does know better and this was ordinary mischief, not compulsive. So then we had a bunch of wet towels to put in the washer. But, the washing machine is something that Allie has been deathly afraid of (we have not been able to do laundry while she's home for years!). Well, I decided it was time to deal with it. She got upset when I told her she'd have to help wash the towels. I told her I knew she was afraid, but she can't let fear get in the way of doing stuff she needs to do and I'd wait until she was ready. It took her about an hour. When we got the basket of towels to the machine- she immediately unplugged it, slammed the lid shut, and opened the dryer to put the towels in there. So, I gave her the soap to put in the washer, then plugged it back in and started it filling. Every time she reached over to unplug it, I handed her a towel to put in. Once the load was in and washing, she was beaming with pride! It was wonderful to see her, and guide her in overcoming this fear. I'm sure it will take more loads to completely extinguish the fear, but I know we can do it! I need to figure out a way to do this with elevators, which is even a greater fear (just seeing them, we don't actually ride in them!). I've got to find an out of the way elevator that is seldom used. Her eye contact has always been very poor. Today on the way to school (ESY) she was playing eye-contact games in the rear view mirror and would laugh everytime I made eye contact with her mirror reflection. But also, she's just doing eye contact all the time! Another really big deal (to us anyway) is that she is making sure she has our attention before she communicates with us. This is new. It has been so frustrating all these years, with her being nonverbal and communicating silently, to be unaware at times that she was communicating. She touches us now and waits until we look at her before she starts. These are huge things that happen, usually unnoticed, in infancy and early childhood. You sure do notice when they don't happen until your child is 15! We still don't know how far she can go and how much we'll get from recovery, but I think God has great things in store for her! She is looking so healthy and is so happy. I am so freaking amazed!!!

Oh, but this IS the place to vent. For me, at least your vents are valuable, because they give me insight into what my daughter experiences and she cannot really express it (w/o beating on me!) And, uh...there's a Judge Judy marathon???? When, where? I love that show, but seldom get to watch (maybe its a mom thing) because the time is not good for me!

My guess would be, if you say melatonin did not help you, is that it was the valerian root that does the trick! Did you ever take valerian root by itself? Allie does valerian root and melatonin every night. The melatonin gets her to sleep and the valerian keeps her that way! Although last night....ugh, lets not talk about that!

So, Announcement?

I hope you didn't have to pay per spider! Wonder how she got those spiders to do that?

good point. Maybe it would work to have age range categories: infancy(< 1yo) early childhood (1-4yo) early school age (5-8, or K-2nd grade) etc.

How are his bowel movements? Could be C.difficile?

Have you considered that there may be more going on than just PANDAS? Lyme? Have you tried other abx?

Has he used other abx that have been more effective? Please let us know what the doctor says!

Both walgreen's and CVS pharmacies have "minute clinics" in some of their stores- you could maybe go there, or urgent care?

My child always did really well on zith, but never did the liquid. Did your son get worse while on it, or just not better? Could it be yeast?

When my daughter used to get the 250mg tablets of zith, they were just white- manufactured by, I think, Pliva. Her 500mg tablets have a blue coating-probably because they are so much bigger, need the smoothness to help with swallowing

Have you used them before? Are they accurate/easy to use? I never got a positive- only ran about 3 tests and my daughter got into it and dumped the test liquids, so I don't know how accurate, but I think its the same test the docs office uses. I don't know how good I swabbed though- would think a really good, gag the heck out of you swab would be important.

Here's one place they are available: http://www.cliawaived.com/web/Strep_A_Test.htm

My daughter's pediatrician thinks this is what was happening w/ my daughter- especially since she was getting strep and exacerbations w/ dental work, when she cut teeth, and with tonsillectomy. It seemed like the strep from the cells was being released whenever there was oral tissue damage. I think we've cleared her carrier state, but have not really taken any chances w/ tested to see if we have.

I can tell you that I taught for 14 years (mostly Kinder, but @ 4 years of older kids) in a low SE school, and in hindsight, I can see many cases of probable PANDAS kids. Wish I could go back and contact some of those parents about what I know now. Most ended up w/ psychiatric treatment and were treated by the schools as behavior problems. Particularly, the group of kids who were born the same year as my PANDAS child was rife with subtle and not so subtle neuro symptoms. I can tell you having a classroom full of 5 year old PANDAS kids is not fun! I wonder if there was a particular strain of strep going around that affected them, or was it that they were all in the group who were born the 1st year that newborns were vaxed w/ HepB on the day they were born? That was my last year teaching kindergarten, so I don't know if the next group was as bad...But, that same group in 4th grade was still having the same sorts of problems.