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eljomom

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Posts posted by eljomom

  1. 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.

  2. 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 :wacko:

     

    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!

  3. 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:)

  4. 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.

  5. 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

  6. 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!

  7. 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:(

     

    Eljomom, we are in the same position with our ds12. We often wonder the same thing...why all the tics? He does have some OCD, but main issue is tics. I had this same stuff as a kid and it took several years for my tics to diminish. I don't know the explanation. I have read where the bad auto-antibodies are really sticky and hard to clear out of the brain. Ds had pheresis back in January and this helped until he got swine flu in Feb. And his tics do increase with colds and viruses, so this is symptomatic of PITAND as well.

     

    Kim might be right, could be Lyme or another co-infection. We are still considering Lyme testing and know of a Lyme doc in NC (3 hrs away from us). Ds has had many tick bites over the years, but did not develop PANDAS until he got strep in March of 2009. So, it still does not make sense to me because he had absolutely no PANDAS symptoms until strep. Maybe strep is intracellular like is mentioned here a lot? He's been on Augmentin a couple of times, Pen VK and is currently on Zith, 250 per day...after 6 weeks of 500 per day. You would think any infection would be cleared by now. I find it very frustrating that the doctors can't pinpoint how to individually treat our children with PANDAS. We are not sure what to do next. I guess Lyme testing (and possible treatment) will not hurt anything but the bank account, b/c it's not going to be covered by insurance from what I understand. But I don't mind paying out of pocket if I knew it would help. I have not found a doctor yet that can assure me that treatment "xyz123" will help with his tics.

  8. 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.

  9. 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....

  10. 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:(

  11. 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.

     

    Brian:

     

    These results are similar to what we got. You're the 3rd person I've seen who's results were so exactly similar to my sons. It's very puzzling all these PANDAS diagnosed kids now are being diagnosed and are improving with Lyme treament. I'm so grateful for the parents who have shared what they've learned. I think in a year or two we'll be able to look back and it might be more clear, but for now we're all just in the thick of it.

     

    I've been sitting with our results a while, trying to find the energy to move forward. It's hard when your child is so much better. I teeter between just being so grateful for the improvement he's made and knowing I have to keep looking for answers for this now that I have this info. After consulting with our doctor, we have chosen to re-test. Band 31 can be cross reactive with EBV which we know he has,and other viruses leading to false positives, so we are doing the 31 band specific confirmatory test. This "should" confirm if the positive result on that band is indeed due to lyme or something else. If you find a good LLMD in Michigan, please PM or email me as we are probably headed that direction as well...

     

    -Rachel

  12. 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.

     

    I agree with Wendy...it might be wise to seek another opinion from an LLMD. Also, check out this statement on the Igenex results: Presence of only one double starred band or INDETERMINATE double starred bands in a negative report may indicate clinical significance. Therefore, we recommend testing with another method and/or retest in 4-6 weeks. The confirmatory 31kDa test doesn't address other bands.

     

    Didn't you have a IND **83-93 band?

  13. 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.

     

    is there such a test for band 39?

  14. 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.

  15. 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.

  16. Hi Jodie-

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

     

     

    Had a wonderful session/visit with Dr T last weekend precisely for the explanation reason. He explains so well to DH and that really helps to keep DH on board. He had very similar interesting points on autoimmunity as well. Overall we are so focused on boosting up the immune system we forget we need to keep a very close eye on things so as not to over boost it. Overboosted or over efficient immune system as we know can come with its own set of problems. I know from bitter experience.We were very immune conscious with Ds at 3 yrs of age due to his delays and the immune system went turbo and caused his Vitiligo. DS already had the vitiligo polymorphisms and this just helped trigger it and PANDAS too.

    Anyways very nice article- thanks Elizabeth.

    Jodie

  17. 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.

     

    Eljomom

    Its a hard decision and tons of info to digest. We were on the PANDAS path too as were many moms here and my DS still reacts to strep. It took 3 months for me to accept and pursue the possibility of lyme.Thanks to the persistence and suppport of so many wonderful moms here.

    I did heavy duty Igenex testing for my DS- complete coinfection panel and complete lyme panel and over a thousand dollars later Igenex ruled everything negative. We had many IND band and Bartonella was equivocal meaning = 1:20.

    I was overjoyed, relieved, our local DAN doc also an ILADS member (NOT LLMD)said it was all negative and done.

    But DH and I decided to keep our appointment with Dr Jones and it was the BEST thing we could've done for our DS at this point.

    See, the equivocal for Bartonella was because Igenex testing doesn't go further than that. Dr J sent blood to another lab that goes further and DS's Bartonella titers were actually 1:245 which is pretty high. We started treatment and for the 1st time in 6 years I've seen my DS emerge and begin his journey towards healing.

    Please, review all the info, read "Cure Unknown". Lyme is sickeningly political. NJ has lost several good LLMDs to insurance bullying or their affiliated hosp bullying to follow CDC stds and pretend chronic Lyme or coinfections don't exist. Some very good LLMDs have gone over to the "dark side" to maintain their affiliations with insurance carriers and hosp.

    Its worth checking out. Lyme is a clinical diagnosis ater all. Not trying to push towards Lyme at all. I don't think anyone would but its worth checking as a rule out and checking how its supposed to be checked out not just lab work, a good LLMD.

    Jodie

  18. 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...

  19. 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

  20. 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??

  21. 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.

     

    The Cunningham test is still in the "research" phases, but she has an open trial, and it is definitely becoming quite well accepted by many of us PANDAS folks. For my family, it made the final differentiation between bipolar and PANDAS (we also ruled out bipolar by trying meds that didn't work,) but the doctor finally accepted PANDAS and treated it as such, because of the Cunningham test results. I am very glad I did it, and spent the money, because now we are as certain as we needed to be to go in the PANDAS direction, and are getting him the help he needs.

     

    The test costs $400, but it is a donation (to the OU Foundation,) so it is tax deductible, and the end cost is considerably less.

     

    Personally, I'm very glad we did it...it cleared up any doubts in ours and our doctor's minds.

     

    Good luck, and keep in mind that you might have had PANDAS, and that's the cause of your tics.

  22. 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!

     

    I would just give her the abs. But, you are right, you might not notice a difference after 5 days. You could also add on some advil, that helps.

     

    For us, tics were the last symptom to go away. Mood/ocd improved first. But, everyone is different.

     

    Also, would it be possible to get your 6 year old throat cultured before starting the antibiotics? A neg. test doesn't mean she's not going to be helped by the Azith. But, a positive test would be a clue to make sure she clears (is neg.) 3 weeks after the last Azith. dose.

     

    Also, consider a Cunnigham test in 2011 when the lab reopens. This test is pretty good at differentiating PANDAS form non-pandas tics.

  23. 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.

     

    You've got a lot of catching up to do with regards to Lyme politics and how CDC established guidelines for 'reportable' Lyme cases...... You have a negative result on the Igenex due to the fact that your child is not meeting CDC reportable 'status'. Two recommendations: read Cure Unknown, purchase the documentary on Lyme 'Under Our Skin' for $34.00 http://www.underourskin.com/store_home.html.

     

    Also, here is an on-line video link that gives you a brief overview on Lyme from ILADS website.... Dr. H does discuss manifestations in younger children briefly (he is our Dr.) http://www.ilads.org/lyme_disease/lyme_videos_1_d.html

     

    Here is another three links discussing WB results.

     

    http://www.latitudes.org/forums/index.php?showtopic=10804&pid=91617&start=&st=#entry91617

     

    I did refer two wonderful Dr.'s in DC area via PM but unfortunately I don't think there is anyone closer.

     

    -Wendy

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