eljomom

Well, when I brought in drawing samples for her, she got it:) My daughter is a drawer, not much of a writer, and to be honest, I don't know many 6-7 year olds who's handwriting is well-developed enough to say it's "good" or "bad." Plus, her name is all of 3 letters long---all easy letters. Not much in the way of a writing sample. AT the same time, I am glad she looks closely into things, but I do worry that there are some infectious or immunological issues she might not be seeing or addressing, as it's just not her area of expertise.

I am again paralyzed with what to do next. We saw Dr. Latimer twice. First time, not sure pandas. Second time...pandas. Said daughter was too young to meet DSM for Tourette's (she's 7)--and it doesn't ususally start with ocd at a young age of 4 or 5, then explosion of tics, etc. While I think Dr. L is a good neuro, she is NOT an immunologist, etc... Tested for Lyme. Igenex says "negative." Dr. Harris (at Igenex) ran the 30-31 epitope for IgG and IgM---both were negative. So the ++ on the one test was really a negative, and he said it means it must have cross-reacted with a virus or another bacteria. Said he couldn't say she had Lymes. At the same time, many Lyme parents have said to see LLMD. We haven't tested co-infections either. Someone else said to see a pediatric Infectious Disease doc--that they "get" Lyme and pandas. Was given the name of Dr. Keim in Northern VA. Pretty sure they will follow CDC guidelines. BUT......would it be good to see him to maybe see if there is something viral causing the + bands (cross-reacting) on the Igenex WB?? What would you do for viral issues causing pandas?? Also, want to def. rule out LYme before trial of steroids. We are going to get another opinion from Dr. Lavenstein at Children's NoVa outpatient center---runs movement disorders clinic (neuro.). PRetty sure he'll say it's Tourette's/ocd. Then there is the whole issue of pandas/pitands being an autoimmune disorder in the first place. Which would mean it would be helpful??? to see an immunologist??? And even an allergist, because there's a chance that food sensitivities could be at play here, causing inflammation. Oh, or yeast Finally, there are docs like Dr. Leckman and Murphy---ped. psychiatrists---who get tics/ocd/anxiety/hyperactivity. And finally, having just switched to a high deductible (very, very high!!! $6000 in network, $12,000 out of network)---this is all out-of-pocket, so bopping around from doc to doc for consultations, like i could have done 6 months ago before switching insurance, is not an option. I have to have my ducks in a row. Not to mention, risking giving my daughter something else to worry about with all the visits to the doctor, who is already afraid that when her sister reaches in the cereal box with her hands, she could get sick from her and die. I really, really needed to put this all out in writing--thanks for listening. And any input on priority here---would be great! I'm going crazy, not knowing where to start...and not wanting to be on months of waiting lists once i do!

For what it's worth, when I first started on the forum, the Cunningham test was THE test to have --- do it, right away, etc. and it will tell if it's PANDAS or Tourette's/ocd. This was this fall. So we had it done. Dr. Latimer was not "sold" on pandas, even with a CamK of 168 (high pandas range) due to my daughter's handwriting not being horrible. She wanted to see anti-neuronals. AT that point, her antiD1 was 4 times mean, and she said that tics were likely her most troubling issue. Again, very true. Even Cunningham (I've spoken with her), when asked what these numbers mean, will say "We just don't know." So not to be negative about the test, but just not sure even Cunningham sees it as diagnostic??? It sounds like you are seeing improvement. I'd trade that for the Cunningham results any day of the week:)

Forgot to add, I refused to say "okay" for her to swallow her liquid vitamin (I should explain this ritual: she takes a little sublingual B6, Zn, Mg and you're supposed to hold it under your tongue for 10 seconds. So she would put it under her tongue, and count hmmm, hmmm, hmmm to ten, then look at me and mumble hmmm????, and I'd say "okay" that she could swallow it. It didnt' dawn on me till last week that it was a ritual, until I told her she could swallow it without asking me, and she said "no I can't...you have to tell me its okay." The next day, I when she did her thing, I said "you know you can swallow that without me telling you" and she got wide-eyed and wouldn't swallow....kept looking at me and motioning for me to say it, but I didn't. She finally swallowed it, but said "next time I'm not going to swallow it until you say okay." So next day, same thing....looked at me "i said, i'm not going to say it, and looked the other way". She Swallowed it!!! I said" see you can do it"---and she said "no i can't." next day, same thing, but didn't even ask me. I gave her high five, but she wasn't really into celebrating. Again, she's not about talking about it. Also, we had another tooth freak out today. Last one was a couple weeks ago, front tooth dangling for days on end, driving her crazy. Finally, I said it's got to come out, and we had an entire day of crying freaking out fits, her shaking ,etc. super scared. Repeat today. I nipped it in the bud though. She came to me in tears saying the tooth was really bugging her. I was tender and validated her, but after about 15 minutes of her crying, etc. and me telling her to try to play and she'll forget about it.....I said "hard way or easy way?" She knows that drill from other things in the past, like dental appt.s, fillings, etc. Easy way is you cooperate, hard way is you don't cooperate, but it still happens. Pulled that sucker out. She cried, I tried to console her, but again, not receptive.

Gosh, I am just now seeing all of these wonderfully helpful replies! I guess I forgot to click "watch topic" so never got any e-mail notifications:( So thank you all for your input. My daughter is more on the "not want to talk about it" realm. Even if she gets hurt, or really upset, she retreats away from anyone who wants to console her. With the eating, I've just noticed that over the past couple weeks, she will not eat meat, even mac n cheese (a favorite), just will eat things like mandarin oranges from a can, or christmas cookies. And no water. Period. Says it's gross. Only wants milk, and I"m still not sure milk is not part of her issue with tics (I know, longshot....). She will be starving, and then when I give her something, she won't eat it. I ask her why, and she says "i don't know." or "i just don't want it." I ask why, but get nowhere. She also, whenever I pick her up, looks away and says "your breath..." even if I've just brushed my teeth. Part of me wants to just give in and let her live on chocolate milk, but i just don't know. To top it all off, my husband STILL thinks all this is "just a phase" and she'll eat when she's good and hungry. I notice she's more tired---probably from not eating. Thanks again for sharing---I will look up those books. Wendy

I finally got a copy of "What to do when your brain gets stuck." A few people on here have mentioned it. It is a great book--love how it explains OCD. My daughter just turned 7---she's a "young" 7. I'm thinking it might be a bit over her head. ARe there any people who have used it for little ones? Any other books like that which might be better for youngers? I thought I heard something about "Up and down a worry tree" or something along those lines at one point, but again, not sure what ages, and if it deals with ocd. A couple concerns too---I fear a bit that there are so many concrete examples that they might plant seeds (or more worries) in her head??? Like give her more ideas and ways to obsess and compulse. Also, her main issues are with germs and food. So the ERP, would the child have to force themself to eat? I'm a little confused with this one. She also has the clothing issues, have to stretch all armpits of shirts, etc. How do kids "get used to" clothes bothering them? Thanks!

So this is why I start to wonder.....maybe it's just Tourettes??? Tourette's tics get worse with illness. Yet in our case, things got bad, but never got better. It does make me wonder.... ....and I know I risk this being taken the wrong way, but putting this out there, just because I worry about it. Some people say (and a couple pandas docs say it too) that if you go to an LLMD, you WILL be treated for lyme, and you won't come back, because it's a loooong process. At the same time, maybe it's the same with the "pandas" docs---you go, get diagnosed as pandas, and if treatment works, great, but if not, maybe it really wasn't pandas??? I truly mean that in no harsh way--just my own uncertainty, even after seeing a top pandas doc. It's so "gray". Just like Lyme. All tests can be negative, and it's still Lyme. Maybe my daughter just has a really odd case of early-onset ocd, with tics appearing later, and the illness tipped the boat over and threw her into full on Tourette's. Just don't know:(

I am trying to wrap my head around the 4 anti-neuronals too. I understand cam K can be elevated by other things, but the antibodies are different??? When dr. latimer saw my daughter's, she knew right away that tics were her main issue based on the high anti-D1 antibodies. Anti-D2 was normal. Still wondering how this differentiates TS from pandas. Also, I doubt the auto-antibodies are directly strep related, because my daughter was having major tics (still is) and there was no strep recently leading up to it---just a high fever for one day (NOT STREP) and some STAPH impetigo was running around the house too.

So if cunningham's camK shows that there is an autoimmune issue going on, why are my daughter's immune workups normal??(not sure how over-the-top thorough they are, but according to Dr. T, who ordered labs, they are "normal"). I also don't understand why, after the fever in June, and the tics went from 2 or 3 to over a dozen, have not lessened at all?? Not sick, likely no underlying infections---I truly believe this---did Augmentin for a month, thought maybe a little better???? (not sequencing the tics all in a row), until son got stomach bug last week. He's better, and her tics are getting more in number and frequency. We also switched to Zithromax last Thursday, and she has had even more tics in the past few days. My oldest came down with a bad respiratory infection a couple days ago too. But my pandas kid---not sick. Just really really ticcing. What's the point of antibiotics if she's reacting to viruses? Is zithromax making her worse? Should we have given Augmentin more time?? Why is there no cycle in the tics going away after any illness is gone...this has been months and months....

PacificMama---so antineuronal antibodies can cause the cam K to rise??

I am getting ready to place an order on amazon, and wondered if the "Natural treatments" book by sheila rodgers on amazon is the most recent edition? thanks:)

As far as Cam K and how long it takes to drop after strep---I don't know. IN our case, cam K was 168 NOT HAVING HAD strep recently---in fact it was done 3 months after the fever that set symptoms in high gear, which they STILL are. All titers (run twice) have been almost nonexistant. We believe strep may have been LOOOONG ago, like a couple years, when the ocd started. Wish I'd known about pandas then, and not just chalked it up to quirky germaphobe issues:(

It's interesting--our results are similar--not exactly the same. But what I've noticed is the numerous PANDAS kids who are testing "31++". IT's the same band...same number of +'s. Very interesting.

Yes, the **83-93 was IND on one of them. I am just weary of going the LLMD path and being "forced into" Lyme....it's heavy duty treatment, and I would want to be certain what we are dealing with. I know it's a "clinical diagnosis"- but what I don't understand it that the symptom list is so long, you could go in with anything and be called Lyme. My daughter has NO fatigue, aches, pains---JUST the mild ocd, major tics, hyper and sep. anx.

Fixit---I don't know, but I would call Igenix (got number online) and ask to speak to Dr. Harris. You don't have to pitch a fit or anything to talk to him---I called a couple days ago--the main number--and just asked if someone could help me understand my daughters results. They put me through to his voicemail, and he called back later that day. Left another question the next day, and he left a reply on my answering machine.

Just got back from another visit with Dr. L. Confident that my daughter is PANDAS and not TS. So we are switching to zithromax from augmentin (did 30 days on that without much improvement). Then after 30 days may do a steroid taper. She said zith. was originally created as an anti-inflammatory, but they found it also worked as an anti-bacterial. That being said, with my daughter's recent Lyme results being "negative" but suggestive of further studies, I am afraid that if there is an underlying Lyme, the zith. might cause a herx reaction. I really don't know what this is, but thought I read it somewhere, and I'm worried about it. ANy thoughts on this. We are having Igenix run the band 31 confirmation test, and then Dr. Harris (at Igenix) said if that's negative to move on.

Just got back from another visit with Dr. L. Confident that my daughter is PANDAS and not TS. So we are switching to zithromax from augmentin (did 30 days on that without much improvement). She said zith. was originally created as an anti-inflammatory, but they found it also worked as an anti-bacterial. That being said, with my daughter's recent Lyme results being "negative" but suggestive of further studies, I am afraid that if there is an underlying Lyme, the zith. might cause a herx reaction. I really don't know what this is, but thought I read it somewhere, and I'm worried about it. ANy thoughts on this. We are having Igenix run the band 31 confirmation test, and then Dr. Harris (at Igenix) said if that's negative to move on.

Hi Jodie- Are you talking about Dr. T in NJ? or an immunologist or lyme doc? does he still do steroid tapers??

Hi Jodie- Can i ask what your sons symptoms were?? My daughter has NO joint pain, headaches, etc....JUST the ocd/ major tics/ hyper and sep. anxiety. My fear is that what I've heard is LLMD's basically are totally tunnel-vision lyme---if you go to one, you WILL be treated for Lyme.

Forgot to ask, but anyone know of a doc who is versed in Lyme (pediatric), but who is not "everything is Lyme?" Does that make sense?? I know the list of Lyme symptoms is very long, and includes almost every symptom one could ever have. We are on the PANDAS/Tourettes/ocd path, and trying to figure it all out. Igenix says "negative" but many of you said I should see a lyme doc based on her results. We live in Warrenton, VA, which is about 40 miles west of DC. Thanks again...

Can anyone explain the CD57 result of my 7 year old daughter's Igenix test....I posted earlier, but didn't get any replies about this part: CD57 NK Test "Lymphocyte count is above normal limit, test results may be compromised." CD57 NK Cells Absolute CT 243 "Lymphocyte count is above normal limit, test results may be compromised." CD57 NK Cells (% Lympho) 5.40

EAMom--she wanted to run the Igenix and wait for antineuronals. Said they mean more to her than Cam K. It's funny, as we were discussing her history, she was talking about getting the dog tested, etc. Then she saw Eva, and the few minutes she was with her, Eva didn't tic!!! Then she had her draw a butterfly and write her name. She said that her handwriting and drawing aren't horrible, and that pandas kids have horrible handwriting. Didn't RX abx. Said we could talk after she gets results. I talked to Dr. Cunningham, who said abx would be worth trying based on her high CamK, and so I e-mailed Dr. L, who said sure. So we've been on Augmentin for almost 4 weeks. I thought about 5 days ago that her tics seemed maybe less. Not as much stringing them together, and more of the mouth, tongue, eyes (facial stuff) and arm stretching. But yesterday was worse, and today has been through the roof! My son woke up today with horrible stomach ache, threw up, and has had diarrhea all day. It's a stretch, but could that be causing any of this? IF so, what are abx doing, since this is viral??

tpotter---who is your pandas doc?? dr.latimer was not convinced pandas with a camK of 168, ocd for two years, a few tics this spring after pneumonia, then sudden onset of over a dozen tics after a high fever in june---and still ticcing like crazy. got the antineuronals too...can send to you if you might be able to explain...thanks.

EAMom---I keep seeing this written, "This test is pretty good at differentiating PANDAS form non-pandas tics" but I have yet to have a doctor confirm this. Can you please explain to me?? I can send you my daughter's results if that will help...thanks!

Sorry to keep asking questions, but doesn't Igenix use a different criteria than CDC? I mean, they are BOTH listed as negative on the IGenix results---Igenix negative AND CDC negative.