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Posts posted by eljomom

  1. T.Anna-

    I am sorry for your frustration...I totally get it! I am wondering if you would mind sharing with me what brand home strep kit you ordered?? I have one that has never shown positive, yet kids have been positive at doctor. Also, it will go to positive if it sits too long......anyhow, I really need to order a new kit, as our insurance deductible is $6000 and I am paying over $100 each time I take one of my 4 kids in for strep tests!!

    Sorry to jump in on this post......I really do "get it" as we have had VERY similar situations.


  2. I was told by 2 neurologists (Pandas-knowledgeable), and a doc at NIH, that tics are tics. They are caused by dopamine issues. What causes the dopamine signaling to be a mess is the issue....be it autoimmune/inflammation/neuro-imbalance due to "tourette's"---Cunningham test looks at anti-dopamine 1 and 2....Steroids have potential to makes tics worse be it pandas OR tourette's. Whether it will or not seems to be up to chance.

  3. My dd is a ticcer....we have not tried steroids due to the fact that they can make tics worse. This was told to us by 2 neurologists. I hear numerous reports here of them making tics BETTER, so hopefully you will seem them lesson as you taper. We were just to afraid to do anything to make them worse.

  4. Thanks Karen! That makes me feel better. But she took 1 1/2 tsp. of Keflex....now is about on same dose of Omnicef....one time a day as well??? Maybe it's stronger so don't need a higher dose??? Oh jeeze...now I'm worrying:(


    So afraid she will tank again...


    I am opposed to Clindamycin. I know I see a lot of docs using it here, but I took it one time years ago and by the second day, my diarrhea was so bad I said I'd rather stay sick than stay on it. Also, my mom took it for a dental issue, and fought c-difficile for over a year from it!!! My oldest had c-diff as a 2 year old...not something I EVER want to deal with again.

  5. Hi everyone-

    I have not posted in quite a while, but do read posts and pray for you guys and your kids.


    My dd8 has Pandas (Pitand) and has for a few years. She is never 100%....always some variant of tics, but not always flare-like (not aways frequent and as numerous, OCD, sep anxiety, night terrors, adhd, etc..) So we have just kept her on a prophylactic antibiotic (Keflex) for the past year and a half.


    Last night she said her throat hurt a little, and she had a little fever (like 100-101). Not acting sick (which I notice she always seems more "normal" and pleasant WHILE she is sick with a fever.....it's the aftermath). One of her sisters has had croup for a few days, and spiked a fever last night. I don't take them in often, but did today. Older sister has pneumonia!!! DD8 has strep. Even while on Keflex. The doctor (didn't see our regular ped....this one didn't know much about treating...) said she wanted us to stop the Keflex for 10 days and do ammoxicillan. I said I thought amox wasn't great for strep, and she said we could try Omnicef (which is what she put my older dd on for the pnuemonia). I asked about Zithromax, but she said it's her "third line" treatment. Our regular doc (and Dr. L) don't like Zithromax at all for strep (we live in Virginia.....maybe resistant strep??).


    Just wondering if Omnicef is likely to work? It's a cephalosporin, just like Keflex, which she was on prophylactically, and still got strep. I sure hope so.



  6. Just saw this quoted in another thread I think by fightingmom, and she mentioned that it had been discussed. It was sort of a holy $h1t moment for me in some way, even knowing that there are plenty of PANS kids without titers being high. I can't find where this was discussed, but am curious if there is scientific literature or anything (even someone who talked to a pandas doctor...) that explains this theory. Makes me wonder if dd really DOES have subacute strep hiding in her tonsils, and has for so long (causing chronic symptoms) but no longer gets high titers???



  7. thanks peglem for the explanation. i almost feel defeated sometimes, especially when hearing Swedo say it can become permanent. I don't care if it's tissue death or permanent pathways, permanent symptoms means permanent symptoms.


    P.Mom---I hope I didn't offend you. I appreciate the success stories too. I just keep looking to find one with a kid with tics, ocd, adhd, who went undiagnosed for a few years, and who is triggered by viruses too, who has become chronic...and who got 100% remission for a substantial period of time. There really is nothing prophylactic to do for Pitand (viral triggered), although we still are on Keflex once a day just in case strep is an issue, as it was one time with no symptoms other than increased tics and night terrors added to the already chronic state.

  8. Not to sound trite here, but P.Mom, can you explain the difference between "permanent damage" and "pathways can be permanently altered?" I'm not seeing any difference in the two statements. If the brain isn't damaged, per se, but the pathways are permanently altered.....and the symptoms/outcome is the same, what's really the difference? Don't mean to be a Debbie Downer, but can't quite wrap my head around this.


    Also, it's so wonderful that your boys are doing so great. Some of us, however, do not have classic strep pandas, and it makes our journeys much more challenging. Not from the perspective of being gut-wrenching for US parents to deal with, but from a treatment perspective.

  9. Shannon aka Mommy----I would like to hear how your visit went with Dr. M and what her treatment plan is.


    I have to say that I can relate to this post completely. I also am still not convinced that the changes won't be permanent. Dr. Swedo says after 3 episodes it can become irreversible. I live in constant fear of this, now after being chronic for a few years, yet not "severe enough" to treat with IVIG.

  10. Hi abbe-

    I know how you are feeling, but the abx never dramatically improved my dd's tics. I hope you will get answers from Dr. T, and that you will post his response. I can completely relate to the question you asked: " is it that he is never going to get better since I waited so long to use antibiotics." I still ask that every day of my life.

  11. JAG10---sorry to hijack this, but wanted to hear more about what dr. k told you about "missing the sudden onset." I thought he was a firm believer in IVIG for pandas, even chronic cases??? We have been chronic, likely due to no sick visits for 2 years, and then the biggie with the onset of tics suddenly. I didn't see the germaphobia/ocd as "sudden onset" because i had no flipping idea about pandas. just thought it was a phase of ocd.



    My problem with the "sudden onset" parameter has always been that it is so problematic for the under 5 y.o. children. This spectrum of illness needs to be looked at without taking ANYTHING for granted. The lower age limit is set at 3...why? because you can't get strep younger than 3? How certain are scientists about that? What about all the chronic ear infections in toddlers, they can't communicate what is going on with them! Then you add in the "normal" periods of terrible Two's and Three's.... it's a mess to figure out. My 2 y.o. nephew had strep for months. My SIL only kept taking him back to get "re-swabbed" because of my girls. He no longer had strep symptoms, but was still positive. It took 4 different courses of abx for him to get rid of strep and then they finally pulled his tonsils. He's 3 1/2 now and has never had a solid bowel movement his entire life. Her pediatrician keeps telling my SIL she's not worried about that?!?!?! What is wrong with these doctors!!!!!


    My dd12 had a dramatic worsening in 3/2007, but that is when her condition went chronic. I was definitely concerned before that, so I guess I missed the sudden onset, that's what Dr. K told me. My dd had sky-high anti-DNAse B titers and elevated ASO. At first I thought that definitely meant strep, not sure of that either. Lots of speculation that DNAse B can rise due to other infections.....Again, how do you get to the bottom of all this when you can't take for granted that "common medical knowledge" even about lab results is actually accurate???


    Why is the medical community so worried about parents chasing the wrong path with abx and blood tests, but not so worried about chasing the wrong path with years to find just the right psych med? It's Pandora's box that they don't want to open. Shame on them! Shame on them all.

  12. patric--how long had your ds had symptoms prior to IVIG? Can you share what doc did IVIG with a child with predominantly tics and not debilitated??? Thanks!


    Hi again,

    Sorry so brief last time, but I was on way to work. My ds8 had ivig almost a year ago now. I wouldn't say he was constantly debilitated, but had mostly motor and vocal tics, some mild OCD, bed wetting, and separation anxiety.


    He was diagnosed last spring and our pandas doc highly recommended ivig, so he had it in June. Within a few weeks we saw a huge improvement which kept improving over time. Honestly I feel it was one of the best decisions we ever made as it gave us our son back!

    He was at 100percent untill he caught pneumonia and then we saw a rage flare, but we treated with abx and he was fine.

    My husband and I decided that we would not wait until he was severely debilitated to treat him as his quality of life was not all it could be and we are very happy we did the ivig. I would not call it a cure as he still has flares after illness, but it is treatable with abx. He also did not have Lyme or co infections which I think can complicate things, but not sure.


    Anyway, I know this is a Debatable topic on the forum, and I can only tell about our own experience. I am sure everyone has different experiences or feelings about the subject.

    Best of luck to you and your family!

  13. Gosh--I'm so sorry to hear this. Are you reporting to the NIH so they know that their protocol of 1-2 IVIG will likely NOT be enough?

    We have not tried meds for ADHD yet, but dd doesn't like school (and we homeschool)---she just doesn't like having to sit and focus on things (unless of course she is interested in it, which is Typical for adhd kids). I think you could ask 100 people here, and anywhere, and find that what works like a dream for 1 kid is a nightmare for another. I know it's cliche, and us pandas parents don't tend to do well with cliches or ambiguous answers, but I think it will just depend on your child.


    Interesting about adhd unrelated....I felt that dd's first signs WAY BACK were a bit of hyperactivity....pre-"pandas"---or was it????????

  14. I just happened to click on a link that someone posted in a thread about the corinth girl being treated for Lyme. It was Columbia's website (where I believe Brian Fallon is....he's a lyme specialist who researches neuro. lyme, etc..). However, I am seeing these statements AS THEY RELATE TO PANDAS/PANS/PITAND, and not necessarily to Lyme...


    So I am going to paste a few statements that were in the Frequently Asked Questions sections---these were replies from Columbia. It got me thinking some things...which I will elaborate on after the quotes:


    "The cause of the psychological symptoms in Lyme disease is unclear. It is clear that patients with acute Lyme disease who develop new onset depressive symptoms or irritability or cognitive disturbances often show a remarkable improvement when given antibiotic therapy. If the psychological symptoms persist or if the initial symptoms are severe, it is very important to consult with a psychiatrist to evaluate how best to treat these symptoms apart from the antibiotic therapy. When symptoms continue even after a repeated course of antibiotic therapy, this could be due to the fact that an activated immune system results in a change in neurotransmitter functioning. As a result, the altered neurotransmitter function may contribute to ongoing depressive symptoms, even after the immune system is no longer activated. Treatment of the psychiatric symptoms at that point would require anti-depressant or anti-anxiety medications or psychotherapy."



    I find this interesting. Maybe that's why some of our kids get better when treated right away with abx, and others go chronic. MAybe since the immune system was activated so long that the neurotransmitters functioning is "changed" and no amount of abx will help. Maybe these are the kids who really DO need a "start low and go slow" dose of SSRI's???



    Okay, next quote:


    "A blood test may be positive for several reasons. First, the positive test may indicate that the person was infected previously by the agent of Lyme disease and the immune system mounted a successful attack which resulted in the long-term production of antibodies against the agent of Lyme disease. That's why tests can stay positive for months to years, even when active infection is no longer present. "


    I often wonder about strep titers, and how some kids' stay high for so long, even after long abx treatment. Also myco p, etc.....

  15. patric---how long had your ds had the tics?

    was he debilitated? who did IVIG?


    Hi Eljomom,

    My ds8 presented with almost constant vocal and motor tics. The ivig has helped tremendously! Now he only has very slight almost imperceptible tics after an illness, which doesn't usually start until 2-4 weeks AFTER the illness is over. Otherwise he is tic free. I do think his being young helped IMO.

    Best of luck:)

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