qannie47

I have posted now well my ds has done after tonsillectomy. I mean so well. For 3 weeks, he was even calmer then his normal baseline. Similar to what we experienced after IVIG...Yesterday I saw the motoric movements reappear. From the time he awakened. No mood changes, tantrums, obsessive thoughts, unreasonability that usually accompanies a flare. But as I kept my eye on him, I noticed that his legs never stopped moving once all day long. Not once. I have been waiting for a flare. I was told to expect one. However, I expected it to happen within days of surgery. Not 3 weeks later. Because he is only 8, I always try to give a flare the benefit of the doubt because let's face it, 8 yer old boys can look a little nutty on any given day....but this is a flare. Do any of you have any idea why a flare did not happen right after surgery? 2) Should I just go ahead and start the higher dose of abx before this gets worse? Of course, these stupid O bands still haunt me. When I looked up RLS....many ms patients report rls in childhood, and some think this is an early symptom of ms....

One good reason that makes sense, is that if you hang around long enough for the results and you get the iep and the school is not meeting your/needs, I believe you can request a different school, and yes, the district has to pay for it. My only concern is this can all take awhile, and your ds may have to be stuck in a school for too long that is not working for him.

Ok. That is encouraging. True, Chinese eventually turns into English from past experience.

Pandas reactions can occur several days to weeks after a strep infection. Your aso seems to point to strep involved in some way....The body, from what I understand, can have strep and sometimes cure itself, hence the negative strep, buy positive aso's. Your aso's are signifigant in my opinion. I assume the 24 hour culture came back neg? How about the sinus, ear? It seems to me that strep is involved obviously. Your sudden onset is also highly suspicious. Stay on this path of speculation. Early dx of Pandas is important.

"Some may have had their tonsils removed but can still have problems"...."The immune reactions go away when you deal with the tonsil issue." This is not making sense to me. It seems to contradict itself. Can someone explain what I am missing?

I just love this forum. It has provided so many "OPRAH AHA MOMENTS". My ds, whom is non-pandas, his brothers twin has had a long history of stomach pains and constipation. It just so happens that he is a little on the adhd side of the fence, and can be irritable. About 3 months ago, I started giving him 5HTP. It has helped his focus and temperament in a pretty big way. Amazingly, 80% of his stomach and bowel issues have disappeared along with his improvement. I never made the connection. Very interesting indeed. The 5htp had no impact what so ever on my Pandas child, which is whom I bought it for in the first place.

I sometimes had a headache for 4 weeks straight..and when it subsided, it was only for a day or two. But mainly, I always had a headache...I was young and without great insurance, so I did not go that route. My pain ended up being from 2 separate whip lash injuries that I never knew existed from 15 years prior to onset of headaches. Except I did not know that I had a whiplash injury. I chalked it up to gymnastics, or an older brother who used to slam me against the wall. When the Chiro took the xray, and walked back in the room, he said, "When did you get the whip lash?" I of course gave him the deer in the headlight look...So that was how my treatment started. 1 week later" 50% reduction on headaches...2 weeks" 75% reduction 3 weeks: NO HEADACHES. I followed a 1 time a month regime follow up for 1 year. I have been headache free for over 20 years. Well, that kind of headache....Now it is rare and sinus related... but not the same kind.

My issue with 23&ME is that I don't have the science background...I'm afraid that I will get these results and they will look Chinese to me. Or else I will try to supplement myself and make big mistakes. Can the layman make sense of the results and put them to good use?

I am smiling for you! We all know how good it can feel to see positive changes! You will find as you navigate Pans/Pandas that each episode can be unique onto itself. Eventually, you should start to connect the dots and find some form of pattern....that takes some time, but it will bring some sense of control to the situation. I am glad that your child seems to have responded so quickly!

Just thought I'd share my experience with Lipoic Acid. A couple of weeks after starting this supplement, I noticed some facial/vocal tics in my ds. Then I ran out. Days later I saw his tics start to dissipate. Weeks later, I finally ordered some more and started him on it again. With in 24 hours, he started ticcing again facial/vocal. Stopped supplement. Tics stopped. Conclusion: lipoic acid for whatever reason caused tics in my son. He is not a "ticcy" child, except for flares and then it is more gross motor: endless karate chops and arm flailing... So I share this because if it caused tics in him, it would probably be a disaster for any child whom has ongoing tics.

One more thought. Most of the flares that my ds experienced took several weeks to completely resolve. For example, his last big flare in Sept. lasted 4 weeks and it took another 3-4 before he was 90 -100% back to baseline consistently.

Are you sure this is not muscle related or coming from your back? Your description sounds so much like the headaches that I used to experience. My neck was so sore and it went straight to my temples. My temples would get so sensitive that it hurt to even touch them. Truly my whole head hurt. I lived on 20 Tylenol a day. Not to smart. It was a chiropractor that helped me by giving me neck and back adjustments. Ten years of pain went away in 3 weeks.

I just looked up sided effects from Azith...rash should be looked at immediately. I checked two different references. He sounds fine based on your other descriptions, but to be safe I would call.

I would guess that based on your lab results that increase in abx is not necessary. Is he still flaring? That is almost more important when making the abx decision then titers. Remember, Conference feedback suggest us not chase titers. If he is 90-100% back to baseline I would not increase abx. However, if he is still struggling, I would increase abx.

Thanks! I sent this to our school social worker whom has become a believer through experiencing my ds.

Yes. In fact, when my ds had his last bad episode last fall, when I called his teacher to inquire if Strep was going through his classroom, her reply was, "OH! I was diagnosed with Strep last Friday!!"..grrrrrrrrrrrrrrrr

signed

I think that all psyche issues come from something/a physiological cause. I think Pandas has finally caused the medical community to ask just that question. I think that you are on the right track, asking all the right questions.

Every child is unique somewhat, but here is what I do. When I see Pandas symptoms, I usually give him 2-3 days to see if it is just a popcorn flare. If he is symptomatic on day 3 I go to the abx. If he is out of the box crazy on day 1 or 2 I go right to abx (that only happened once and you know your own childs level of crazy). Dr K does not recommend motrin because it can hid symptoms and fuzz up the read on where a child is at during a flare. For example, one time I decided to use motrin. Sure enough, he was great on it. Kept it on it for 5 days. Then Dr. K shared his opinion on motrin and when I took him off of it, he went to over the top crazy as soon as the last dose completely wore off ten hours later. It was then that I realized that I should have put him on abx days earlier and we could have maybe shortened his flare and not hide it with motrin. That being said, I do think motrin has its value. If your son is on abx, and you feel he really needs some extra help for a day or so until his flare gets under control, I think that makes good sense. Otherwise, I know longer use motrin in place of abx. I have found increasing tryptophan in the diet helps...milk, eggs, turkey

I I must say, for my highstrung twins, I don't think I would be able to get them to sit in front of a computer for 1 hour a day, let alone 6. Too Linear, not enough human contact. But I love the idea of home tutoring!! If you can get your district to pay for it, I say go for it. Plus, with a home tutor, I bet that because of the one on one instruction, much will be accomplished in a shorter timeframe and I bet that his school time will be cut in half, if not more. That might be good for your ds. Especially since he is on the bright side of the fence, his academics might really jump and even put him ahead of the game.

I know what you mean about the Pandas anxiety. Maybe they will come up with a new "Stress anxiety disorders for adults....induced by Pandas children" Ha...On a serious note, what has helped me a lot after my ds has recovered from a flare and doing well is accepting the reality that he will have another flare. I have no control, or not a lot over that...It helps me to enjoy one day at a time and reduces the pins and needles feeling of "oh oh..is it staring again?" Living like that is horrible. I tell myself, yes, he is going to have another flare someday, and we got through the last one, we will get through another one.....It's all I have to hang my hat on at this point....

Does he have a history of sensory issues? or is this new with the ear infection?

I know what you mean. I myself have thought about stopping the abx. For my ds, I have not seen it stop flares from exposure or simple infections. That being said, I do know that it the abx does keep the immune system from going out of wack and also has an anti-inflammatory effect. All the experts do seem to want our kids to remain on the abx even though they are doing well for several years. So I guess because of their expertise, I will keep my ds on the abx as recommended.

Thanks for sharing Poetmom! It is wonderful to hear older cases and see their outcomes! Gives the rest of us such hope! Cheers to NO PANDAS'S SIGHTINGS!!!!

HI Ophelia! Glad to see you pop up! I have been wondering how you were doing!