kferricks

He is a very nice man and he WILL listen to you. He will also ask a bunch of questions so he gets all the info he can., I am so thrilled to here that you are going! I find it best to write down all behaviors that I can think of, and then I write a list of everything that I want to mention or ask. (I literally read off the questions to him lol) Good luck and prayers are comming your way for the both of you.

Thanks I am going to check out the help topic. Oh I read the book.. I have someone local who is calling me tomarro. She has chronic lyme and sees someone in PA. Do most of the pandas/lyme kids stay with thier panda doc and see both , or do most take a break from the panda doc until they have the lyme under control?

I am in South Western PA. My Pandas doc is in CT too. Hoping I don't have to travel as far... when was your child diagnosed? My DD is on Biaxin at the moment.

So, how do I go about finding an LLMD? Do any PANDAS moms have thier doctor treating it, or have you found another doc? help?

Thank you so much for posting this! We so badly NEED to hear the successes! Thanks for the hope, I am so happy for you and your son.

Usually at our lab all I have to do is sign for them to send me a copy. What kind of tests?

I had the shots for myself when I had Rhuematic fever, the only place I could tolerate it was on the back of my hip. But, now you can get a prescription to completely numb the area before hand.

I know what you mean. I was stunned at the cost. We just did ours yesterday. Hoping that our ins will reimburse us at least a little. Wondering if anyone ready this has UPMC ins?

I just want to thank those of you who posted your successes. We need to hear it.

I hope your son does get treatment. Whatever it is, I'm just praying to get my child well. (Like everyone else) It has been 7months since this kid has been in school, played with a friend or anything. Contamination fears suck because it emcompasses every single thing. Her biggest fear is one little girl who goes to her school is contaminated...hence, the school, kids, busses, pencils etc are all contaminated. Since she has flown backwards, instead of an 11yr old it is like having a frightened 4yr old. and I want to cry everytime I see or hear it. For her loneliness, sadness, and frustration at not being able to do hardly anything. she can't even walk outside into her yard without feeling contaminated. I know, we are all there but I just want to go foreward and gain some sort of life for her. did'nt mean for this to turn into a whinning post....I tend to do that alot. lol

I have to agree that it is a Pandas symptom. Never had a problem with ODD before her sudden onset. It is much easier with my child also to give her time to do things willingly. I've also started repeating what she says to me when she is really upset. It works! *a tool I learned from here* Thanks folks.

That is wonderfull about your boys. I was not aware of others treating thier Pandas kids with homopathy. How long did your son have Pandas before you started treating? Was he sudden onset? I will check your web site out. Thanks.

Doc thought she would be up to at least 80% at this visit. She had been progressing rather quickly begining with the prednisone and abx in Dec. Untill last visit when he changed the abx and added another round of pred. She flew backwards and he was concerned and ordered Igenex, and put her on Aug. So, now I'm left wondering Pandas, lyme, both? I guess we will find out eventually. I have read up on the lyme, it scares the bejeepers out of me more so than Pandas. I really don't want to have to go down that path. I also read the Cure Unknown...funny, I picked it up right before our trip to the docs and when I read it, I thought to myself,boy that sounds alot like me. So of course, that alone had my mind racing, now I'm wondering if the kid has it and if she got it from me. I'm glad we got the Augmentim, thats what I was hoping for, I never dreamt that he would bring up the lyme. Jodi

Since the first day of school, but in hindsight, she was showing worrys a couple weeks prior, but it all seemed like normal stuff. She did improve in Dec. meaning she could walk from room to room by herself and a couple improvements up to 50%. Dr. still thinks she won't need IVIG. But we will see after next Monday what he has to say. Thanks for asking.

she does'nt make antibodies for strep or pnemonia. We "think" she had a strep infection when this all started, so I was not sure how to answer that question.

My child has: Lyme Chronic infection Chronic Strep SIGNIFICANT IMMUNE DEFCITIENCY No known current infections What group is you child in? Group 1 - my child only reacts to strep. other illnesses do not cause exacerbation Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy) Group 3 - my child reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baseline Group 4 - my child exacerbates, but we cannot tell what the tirgger or pattern is with the exacerbation. Group 5 - other presentation (describe) If you had a Cunningham's test - what was the Cam K, and which anti-neuronals were elevated?NO TEST What symptom group would you put your child in: tics only ocd only tics first, and ocd came later ocd first, tics came later completely balanced How many symptoms do they have at baseline? (list them next to the appropriate group below (see reference list below) N/A - they don't exacerbate - its always pretty bad one 2-5 6-10 obsessions, compulsions dialated pupils, urinary frequency reassurance questions nightmares separation anxiety emotional liability 10ALSO SENSORY ISSUES ACTUALLY AT BASELINE SHE IS COMPLETELY WELL ADJUSTED KID WITH NO OTHER PROBLEMS.. How many symptoms does your child have in exacerbation? (list them next to the group below) one 2-5 6-10 10+ obsessions, compulsions, add/adhd, dialated pupils, urinary frequency reassurance questions, regressive behavior, rages/tantrums, insomnia, nightmares separation anxiety, decline in math or handwriting, depression, extreme irritability, emotional liability, or other. sensory What is your current treatment, and how is it working? Please note if your child had ivig or PEX prior to the treatment and what the results of that were. Omnicef and pred worked for awhile and then she was just put on Azith and pred but not much help there, we went backwards instead but she could've been exposed to something in the process... so Yes and I don't know.

what is NAC? and what are the epsom salt baths suppose to do? I'm game for anything that can help with the ocd. Kara, I so feel for you with the ocd and contamination. AT the begining of all this, we cloroxed our whole house literally and was washing everythng all day long. But, we also informed her that hospitals use clorox cause it kills all germs and you can walk on it a millions times and the clorox is still working untill you reclorox and that is why hospitals use it. Really did work for the most part. I also kept a spray bottle of bleach and would do a quick spray in the sinks so that the smell would remind her that it was clean... I hope your family can find some relief soon.

I have seen ERP work on so many kids & teens. My DD went to a specialized clinic 4 days a week for 2 1/2 hrs. It did not help her because she was in a major exaboration for months. Before I knew she had P.A.N.D.A.S. She was just too sick. But, it really helped me and DH. We learned how NOT to get sucked into her new OCD. We were already involved in so many rituals that I just could'nt do 1 more..I was done, but her OCD just kept mutating into another form. The ERP helps the kids become numb to the bad feelings associated with whatever there OCD is. They made a separate page for each TYPE of ocd. bad thoughts, just right, contamination, anorexia etc. On each page numbers 1 - 10. Put on as many as they can think of for each number with 10 being the scariest for them. You start off with the easiest, so that they can easily see that they can succeed and build confidence. You give each item a fear # from 1 - 10 with 1 being just a little scarey or annoying. The kid takes a piece of paper and writes what the exposure will be, and what they feel the (#) level of fear will be. The exposure starts as soon as the kid takes the paper and beings to write and should be done at approx the same time every day. The only talking or interference should be you asking what is your fear # now? So say the fear is writing with a pen. You would put the pen infront of him and just let him look at it and sit with those feelings until they come down at least two #. Then it is over till the next day, same time. When the beinging # is at least 2 lower than the previous day, move on to touching it, repeat, then move on to holding, then drawing a line etc. It does take a long time but with each thing mastered no matter how minor, it builds thier confidence. Just don't let him go up the later too fast or they may take on too much and end up at the begining. Also, make sure you have the time before starting an exposure. Most of them often last around 45min.... Hope this helps,

My DH and I were tested and his titers were almost as high as my kid, and I was high for M.pnuenomia. DH was put on abx. My oldest DD and grandchild just moved back in so they are gettingj tested too.

German, Irish, Italian, Spanish, American Indian, English All American Mutts! lol

We got DD up to 50% in Dec with pred and Omnicef. Was wonderfull. Jan she went up another 5%, not much progession. Middle Feb, was put on another pred and another abx. and we got her lab work redone.Within a week, she flew backwards... Well, titers are up a little higher and the M.Pneumoniae IGG are up even higher! @ 4.07 ref range .90, and her C3D immune complex is now up to 87... So, that leaves me guessing as to what happened. Exposure to step and myco? I don't think march 14 can come quick enough! Any thoughts? Advice?

sure wish you were going on the 14th!

That is the hardest when your hopes go up and then you see her backslide. I'm curious, how long was she on the steroids? Was it just a week? Has she only started backsliding t he last two days? I'm only asking because in Dec. we did a steroid taper and at the end of it she backslid for only 2 days and then started forward again. Is she also on abx

You are awesome! I'm sure those parents will show up here and possibly get the help they need.

Shadowtails - sorry for the backslide. I am wondering when you changed meds and if you contacted Dr. B about the backslide? He is usually pretty good about problem solving these things. Do you use an antifungal? Probiotics help to keep good bacteria in the gut, but they do not remove yeast. You may need an antifungal and a probiotic. You may also need a different antibiotic. I would let him know you are having problems. It may take him a couple days to get back to you, but it would be worth it. I'm kicking myself in the butt right now wishing I would have called him sooner. I did'nt call right away because I was hoping that it was a short backslide and then progression like last time. He is off on Fridays so I will be calling at 9am sharp tomarro. All she is on are: prednisone and azithromycin.