qannie47

I agree, I bet its a combo....Good Luck Tomorrow!!!

I finally got copies of all my ds records from peds doc. On 3 different blood labs, about 1 year apart, his Lymphocyte % were low each with EVERY time with high WBC counts. Most recent from Childrens's a week ago still waiting on. Example: 3/2103 During an episode WBC 16.7 > range 4.5 to 11.0 Neutrophil 15.0 > range 1.8 to 11.0 Lymphocyte 4.4 > range 10 to 50 When I read up on Lymphocytes, it talked about low Lymphocytes can inhibit WBC from doing their "thing" in fighting off infections. It also stated that low Lymphocytes put a child in a vulnerable position to getting sick easily. Does anybody have any thoughts on this. To me it is indicative to an auto-immune issue....Yet nobody every pointed this out to me.

I can see that my letter may have sounded harsher then reality. My intent in sharing this was really a relief that my "mom" radar was not off. After 3 episodes, I feel like I have developed this weird intuitive ability to read my ds's energy: Pandas/chaotic energy vs End of episode/calm energy...So when I kept sensing calm energy more and more with recent days passing, I was becoming confused that this was not spilling into his school days as in past remission of symptoms. It just wasn't making sense...I felt like my radar was starting to jam. 1 + 1 was not equaling 2 this time around. Something was off. When my ds made the comment about losing his support, my AHA was, now it makes sense. While he was at first distressed after I gave him a truth, it opened the door for him to talk about his feelings that he was apparently having. As we talked, his distress quickly turned to comfort and trust because he now knew that his support was not going to go away. Pandas or no Pandas. At the end of the day, he is still 7 years old, on the high-strung side of the fence, and certainly does not need to be perfect. Today, he had his best day in school that he has had in 3 weeks. Yes, this was a gamble, it could blow up in my face. I certainly hope not.

I had a horrible "rebound" reaction to melatonin. I remember it working really well for a couple of weeks, but them, "bam", I suddenly felt like my skin was crawling. The worst part is that I became wired and then I could not fall asleep at all. I quickly stopped the melatonin, (it was the only med/supplement I was on), and it took about a week to feel better. Now I use benedrill for sleep, or I might suggest advil/nighttime for sleep.....I am so sorry you are going through all of this. I hope you find some relief soon. To watch our children go through this is just so hard. Hugs to you and your child.

I sent this letter to my DS school today....I am still doing steroid burst, I WANT THE LAST 30% recovery... You might recall that during our meeting last Friday, I was a bit surprised that Hoover was not experiencing the same improvement for the last week that I have seen at home. Over the weekend, I saw much more improvement. While I still saw lengthy times of motoric driven movements, I also saw an impressive gain in self control, reasoning ability, and diminished tantrums. I saw the light return to his eyes. I essentially saw glimpses of my "old ds" again. I was so sure that today was going to be a good day at Hoover. Then the call came about his day and I was truly stymied. Mainly, because this just did not fit the pattern of past episodes. In the past, once I saw a continued, sustained, progression out of his behaviors at home, it spilled over into the rest of his life. Then at bedtime, we had a very interesting conversation...I picked up where I had left off in our earlier conversation about his personal power and good choices. At one point, he said, "But mom, what about my Pandas?". I replied, "DS, your Pandas episode is over". He asked, "It is?", "Yes", I answered. He then asked, "Did you tell Mrs. F and Mrs. S, and Mr. S?". "Yes" With that he started to cry. "NOW NOBODY IS GOING TO BE NICE TO ME AND HELP ME AND GIVE ME BREAKS!". He was truly distressed. As mentioned, while I have in the past seen negative behavior patterns become a knee jerk habit, especially after a longer, intense episode, they usually subside pretty quickly once he is thru with an episode. However, I think I have figured out the missing piece of the puzzle this time around. I think DS, while at the tale end of this episode, is feeling more stable, I don't think he is 100% yet and he does not feel secure enough to let go of the support you all have given him. In other words, I think DS for the past week has been purposely perpetuating it, for fear of losing this support. It now makes sense that I saw improvement at home, but not at school. I don't think it is all about "privileges" for him, I truly think he is not ready completely ready to lose the support yet. I went on to explain to DS that the support he was receiving was not just because of his Pandas. I explained to him that all of you care about him very much, and that is why everyone has reached out to help him. I also explained to him that the support will always be there for him, and that he does not have to have Pandas for you all to care about him. Now this, is more indicative of the DS I know. This makes sense to me. Tomorrow morning, I will remind him about our talk. I will remind him of your continued support, and that he does not have to have Pandas to gain it. I do believe that DS is at the end of this episode, I would put him at 70%, from at home behavior. I am still seeing the motoric movements mainly,and short lived bursts of mood liability, so there is room for improvement. If I am right, and if our conversation hit its mark with DS, Hoover should now experience the same improvement. It may be baby steps for him, because I think he has used it as a crutch, but as he sees the continued support, and he continues to heal, maybe we can put this episode behind us all. Please let me not be wrong again!

Okay, what specific Lyme tests should I ask for, and do you recommend using our peds doc, (he supports Pandas), or go to Lyme specialist? Any in Chicago?

We have not tested for Lyme/co-infections....but I think now is the time. In the back of my mind, I have always wondered about this bite he had on his back that was the size of a small golf ball, about 2 years ago, about 6 months before his first Panda's episode. At the time I thought it was an over reaction to a mosquito bite. He is fair skinned so he usually had impressive inflammation from a mosquito bite, but nothing like this before. His uncle, around the same time, rented a farm house in the middle of nowhere, (20 miles east of Rockford, IL). There is lots of woods, fields, cats running around, etc...My children, being two boys, loved it there, and they went often that first year especially. Would a tic bite produce such a reaction, without the typical bulls eye ring? Also, is Lyme in the autoimmune category?

Thanks guys...I feel like I am going crazy.....this helped a lot.

I have never used motrin/advil to treat his pandas symptoms.

I am starting to question if my ds is dealing with Pandas this time around. His first episode fit the criteria 100%, and I can definitely say that he responded very well to his IVIG>100% remission for 12+ weeks. But this latest episode? No strep, no positive response from abx, which, btw, according to what I have read, after IVIG, future episodes should not be as bad or long in duration. Otherwise, what is the point? I digress. While I do feel that his prior episodes (before IVIG), fit the bill, I am starting to wonder this time around. There is no infection to be found on any level, (even though he has had exposure). Yet he is waxing/waning all over the place, almost like a fast cycle of bi-polar. It is one step forward two steps back...THIS WAS NEVER APART OF HIS RECOVERY BEFORE, in the past, once he turned a corner, it was a continual progression forward even if there were some bumps along the way. And this constant motoric movement w/mood liability/rage, along with age regression-baby talk/declining emotional milestones...he just seems so stuck in it. He will start a steroid burst on Tuesday, but I honestly don't know what to expect at this point. I am not even sure why we are doing it because from what I have read/heard, any positive effects don't even hold. I am wondering if perhaps his first couple episodes were Pandas, but now this is just his high-strung disposition morphing into ADHD run a muck or some other horrible psyche disorder. Any opinions?

Thanks for sharing...a breath of fresh air.

Does it seem remarkable in any way that Tics are now emerging 1 1/2 years later, after IVIG in June, after 12-14 weeks of sheer bliss?

Is die off considered a good thing? I have always assumed that die off was bad bacteria dyeing off....so possible better days ahead?

Rowingmom, there are a lot of similarities between your dd and my ds...but I guess I should not be surprised.....I just have a feeling that this new verbal tic is not going away so easily...ugh

My ds has exhibited motoric driven tics, and yelled out like a bird in past, but never any rapid, over and over. Today, as if things cant get worse, he is making this squeaking sound over and over....it is not twenty times in a row, but it seems uncontrolled, I don't know, definitely repetitive....I just don't have any experience with tics in any big way.... Could somebody explain when I would consider this a true verbal tic? I just cant believe this....

I was a hopeless insomniac for most of my life...I have found that benedrill will lose it's affect over time because my tolerance level would increase, that could be happening with the some of the other meds as well. I too have just started 5htp with my pandas/ds, I really like the idea of serotonin boost. I don't think the body would build a tolerance but that is a guess. pr40: I have not done the 23&me test for my ds, but I think I am going to. Do you think the dopamine issue with Pandas kids is the result of too much or too little?

I think ds7 is possibly wax/waning out of 3 week episode. Because of the wax/waning, the school is perceiving this that ds is choosing to act out, so more behavioral based. They feel that he has control all the time... While I get that there is always a behavioral component, (I think a long episode can result in some habits), I am having a difficult time trying to explain that there is fine line for ds when he is "able" to make good choices, and when he is "not able" to because of what is going on with him internally.....problem issues: verbal disrespect, impulsive calling out in class, anger.... Anybody come up with a good way to explain it? The school is really trying, and has been good, however, I think if they only embrace the behavioral component, that could open the door for some not good stuff...

Yeah, my ds had his first 2 episodes before we even heard of probiotics....so I think it supports the idea that infections are the biggest culprit. That being said, I also get how too many or the wrong probiotics can exaserbate the problem. The complexity of this disorder seems to be the biggest problem.

This forum has an uncanny way of seeping into my mind and sharing my exact thoughts. WE HAVE RAN OUT OF BABYSITTERS WITH RECENT PANDAS EPISODE..NOBODY WILL RETURN OUR CALL....anyway, now that I got that out of my system...I have ran out of ideas for babysitters as well. The problem seems to be that the ones qualified charge 25 and hour.

Interesting...I was thinking maybe I would cut my ds back to every other day...plus, had a thought..the other day at Walgreen's, when I had a question about probiotic, the Pharmacist mentioned that Many doctors now prescribe them with abx...did anybody every link infection>probiotic>symptoms? I think we tend to link infection...a stretch, but I am open to anything at this point.

I did it!!! (I'm a little behind the times with computer)

thanks rowingmom

Interesting....I know I removed Kefier from my ds diet a couple weeks ago, thinking it was the blame for latest episode. What is missing is understanding what brought these tic/ocd behaviors on in the first place for this girl. She ended up on all these supplements for a reason. I assume she was not always on probiotics. I guess I'm not sure if I buy that probiotics can be blamed for origin of pandas/tics/ocd. It makes sense that they can aggravate these issues, but this article seems to imply probiotics as the root cause, and by removing them all of this child's problems went away.

Things that jump out at me. Fatigue: it always has an impact on Pandas children. Second, you mentioned that this is his first organized sport. I remember making the gymnastic's team in 8th grade....hormones raging, a lot of pressure from first experience on a team....a lot of pressure... I was a mess.....and I was just a typical teenager. I say don't panic just yet...We whom have already gone through so much, sometimes overlook the obivious...just typical age appropriate behavior/reactions. We have all been programmed to look under the microscope because of what we have all been through. Been there, done that. The upswing of that is that this is how all of us have gotten our kids healthy, and stayed healthy. So perhaps he is just being a typical 8th grader....I hope this does not sound unsympathetic, because that is not my intent. I think on our best days...we all hope for typical...Breath...and best wishes.

where is the signature line?