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KimDeL

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Posts posted by KimDeL

  1. Hi,

    could anyone who responds to this also let me know if their child had a steroid burst b-4 IVIG and how long b-4. Also, what was the results of the steroid burst.

     

     

    My son who is 9 (will be 10 in late July) had a steriod burst last month and we are doing IVIG this coming week. Tics are his biggest problem. The steroid burst - we saw results on the second day, but not with the tics. On the second week after steroid burst, his home room teacher emailed me regarding the decrease in his tics at school, we also noticed it at home.

     

    Linda

     

    Hi Linda - Is your son having the IVIG done with Dr. K? Tics are my son's biggest problem as well. I've read some information that plasmapheresis is better when tics are the chief issue, and IVIG is better if it's OCD as the major issue. Have you read anything about this? Kim

  2. We used IVIG for my son at age seven. He was diagnosed SC/PANDAS. He had mild OCD, but our primary motivation for IVIG was to minimize tics. He'd spent the prior year undiagnosed and misdiagnosed--being prescribed amoxy repeatedly, which had only made the symptoms worse. IVIG was very effective. Not a miracle. But the difference was immediate and dramatic for him. IVIG results lasted about two months. He never received a burst. That was not an option offered at the time (he had IVIG about six years ago). He was treated with strong antibiotics in advance of the treatment--then given bicillin injections on release. We did not know of Dr. K. IVIG was ordered by a local pediatric infectious disease doctor. We were with a major health insurance carrier. The diagnosis used on all papers submitted to the insurance company was "rheumatic fever variant". The doctor requested approval in advance of the IVIG. Insurance company did not respond. Morning of procedure they finally faxed back a form letter indicating they don't provide approvals, that all procedures were examined case by case after being submitted. We'd been forewarned it might not be covered. My son was released early the next morning. The following day a letter arrived from the insurance provider (shame on Anthem--now Wellpoint) indicating my son had been canceled from our policy retroactively four mos, citing we'd not revealed an existing condition. My son had a strep infection prior to the policy, that hadn't resulted in SC. His doctors and we appealed and lost. Our state insurance ombudsman said there was no case, unless my son was disabled or dead, even then there was a waiting list. Our lawyer said there'd only be a case against the insurance company if my son was disabled, dead, or lost a limb on account of the insurance company's decision. Our cost per IVIG out of pocket is about $9,000 all inclusive.

    Hi boychildsmom - How is your son doing as of today? Would you considering IVIG again? KimDel

  3. Hi, Kim:

     

    We had IVIG in October with Dr. K. Our son was 12 at that time. Saw dramatic improvement for first 3 weeks, more gradual improvement for next month, things stagnated in month 3, then he caught an infection (sinus) and things started downhill in month 4. Now, 7 months post-IVIG, he's had his 3rd major exacerbation and we're back in the "nightmare zone." Original symptoms (in Summer 2007) were tics (motor, no vocal), joint pain, muscle weakness, emotional lability, cognitive impairment. Symptoms after August 2008 exacerbation were more classic PANDAS: violent overnight explosion of OCD contamination fears, urinary frequency, wildly dilated pupils, separation anxiety, anorexia, worsening motor tics plus a new vocal tic. Third exacerbation has been mostly OCD (but severe) plus worsening of tics.

     

    We were supposedly pre-approved by our insurance co, using Dr. K's diagnosis and procedure codes. However, 7 months later, they still have not processed the claim (and we had to pay up-front in full... ouch). Don't know why: every time I call them, I get a different story.

     

    Have to try something, so we're going back to Chicago on 6/11 to do IVIG Round 2 with Dr. K. (Have spent 6 months trying to get a local doc to order it for us here in SW Michigan, but no luck, and we've given up.)

     

    Hope that helps. Don't mean to be discouraging: a number of folks on this forum have experienced permanent improvement after IVIG. Our son just wasn't that lucky.

    Hi Worried Dad - Thanks for your reply. I'm sorry to hear the IVIG wasn't successful your first go around but hopefully this next time will give your son much better and last results. I really hope so. Keep calling your insurance company every day and ask for management and get names each time you call. I wish you the best of luck. Please keep us updated. Thanks! KimDeL

  4. We are having the IVIG with Dr K in about five weeks. Son is eight now (65/70 pounds), we did a steroid burst around christmas with a 80% reduction, continued a low does just after, bringing improvement to 90%, but it wore off quick. Tried steroid burst again in March, almost no result that time. Still working on the insurance part of it, cost will be about 10k. I will post results after the treatment...

    greeneyes - good luck with the IVIG - I wish you the best. To your knowledge what exactly is the steroid burst used for? Is it a marker for PANDAS and if your child's symptoms get better your child truly has PANDAS or IVIG will work better? Steroids in general will make so many things better while you're taking them and shortly afterwards so I'm not educated on exactly why the steroids are given for PANDAS. If you know please explain to me. Thank you and again GOOD LUCK. Please let you know how things go. Kim

  5. KimDel-

    I just posted a comment on this thread about the peeling hands, but then went back and read your initial post.

     

    Your son was on 5 days of Zith, a week later peeling on hands with a positive strep, then was put on Amoxicillin. It very well may be that the Amoxicillin is not getting to the strep and he still has strep. This would definitely explain the peeling on his hands which could be from strep. The 5 days of Zithromax was probably not long enoughh to erradicate the strep. Would your doctor be willing to switch to Zithromax today?

    Colleen

    Hi Colleen - I took my son to his pediatrician on the 18th and he is now on Keflex for 10 days to be followed by Penicillin. I let you know how that goes. Thanks for your reply. Kim

  6. How many of you have used IVIG for their child's PANDAS? What was the age that your child received IVIG and the outcome? Was your child's main issue tics, OCD or TS? I've read a lot about Dr. K but has anyone had the procedure done by anyone else? Also, is IVIG purely experimental for PANDAS meaning the insurance companies will not cover any of the cost? If so, has anyone had their doctors go to bat for them and get the insurance companies to okay the procedure and cover it? I greatly appreciate any information you can give me. Thank you!

    Hi. We've done IVIG for our 7 year old son. It has helped alleviate many of the symptoms PANDAS caused, but has not completely taken care of the problem. We definitely saw improvement (miraculously so at first) and then had an exacerbation a couple months after the first IVIG. I'm glad we did it as it has definitely helped, but I wish I had gone into it with a clearer idea that it was going to give us benefits, not necessarily a complete cure. Our son had TS, tics, OCD, anxiety, ADHD, rages, meltdowns, and all kinds of other PANDAS fall-out. We are only a little less than 4 months out from that first IVIG infusion. So, I'm assured we could still see additional healing. This is just our situation. Other people have said that the IVIG was a cure for them.

     

    We consulted with Dr. K, but did not do our IVIG through him. I asked him in our consult whether it was necessary to come to him in Chicago for the procedure and he assured me that it was not. We did basically follow his protocol, but did it here at home with a visiting nurse service. By having it here at home, the bill for that first visit with 25 grams two days in a row was "only" $5500. Our DAN! doctor ordered it. Dr. K has been wonderful about answering my email questions even though we only did the intial phone consult with him. We did receive insurance coverage for the IVIG, but did not mention the term PANDAS to the insurance company. It was called an autoimmune disorder and we sent labs to their nurses for review.

    Jena - Thank you. I certainly wish the best for you and your son and hope that you continue to see benefits. My son is 11 1/2 and I'm under the understanding that the older the child the less likely for a full recovery but I'm keeping the option open. Best regards. Kim

  7. How many of you have used IVIG for their child's PANDAS? What was the age that your child received IVIG and the outcome? Was your child's main issue tics, OCD or TS? I've read a lot about Dr. K but has anyone had the procedure done by anyone else? Also, is IVIG purely experimental for PANDAS meaning the insurance companies will not cover any of the cost? If so, has anyone had their doctors go to bat for them and get the insurance companies to okay the procedure and cover it? I greatly appreciate any information you can give me. Thank you!

  8. Hi KimDeL, wow, there's a lot in here... I wasn't sure what med was for what symptom from the post.

     

    You mentioned Zoloft and Clonadine but was this for treating the tics or was there some other condition being treated?

     

    Has your doctor ruled out Kawasakis Disease?

    http://www.aocd.org/skin/dermatologic_dise...is-disease.html

     

    I agree with P.Mom here that what you might be seeing is just the response to strep and it doesn't have anything to do with the medication. Of course there could be a cross reaction.

     

     

    I can say that in our case (i.e., with our dd) our symptoms are pretty time driven. We see the following:

    • dd is on propholaxis antibiotic
    • we observe a ramp in separation anxiety and some defiance
    • we culture sister and sister comes back positive for GABHS
    • we treat sister
    • at 5-7 days after starting treatment, dd has a vocal tic and movement/measurement rituals
    • two weeks later movement/measurement rituals disappear
    • we culture sister and sister comes back negative for GABHS (i.e., we check that we cleared sister)
    • one to two weeks later vocal tic disappears

    so full cycle is 3-4 weeks until we're back to baseline.

     

    So checking on your chronology:

    • He had a sore throat and azithromycin was prescribed.
    • You had increased peeling/tics a week later
    • At three weeks from starting azith (2 weeks from completing) you took him to the doctor and
    • a throat culture came back positive for strep -- i.e., strain was not stopped with azith

    Right?

     

    Has he ever been on steroids over the past 2 years?

     

    Three weeks ago he got sick (sore throat, fever). He was on a five day course of antiobiotic (Zithromax). One week after that his hands peels and tics greatly worsened. I took him to his pediatrician, he had no signs of being sick. I took him because his tics were worse, his hands were peeling and we are trying to get to the bottom of whether it's PANDAS related. His pediatrician took a throat culture and it tested positive. Titer level hasn't come back.

     

    Regards,

     

    Buster

     

    Buster - Sorry I forgot to say that the Zoloft and Clonadine are being prescribed by my son's pediatric neurologist to see if it could help with tics, some OCD symptoms. So far no luck. I am seriously hoping an antibiotic of some sort will help my son.

  9. Hi KimDeL, wow, there's a lot in here... I wasn't sure what med was for what symptom from the post.

     

    You mentioned Zoloft and Clonadine but was this for treating the tics or was there some other condition being treated?

     

    Has your doctor ruled out Kawasakis Disease?

    http://www.aocd.org/skin/dermatologic_dise...is-disease.html

     

    I agree with P.Mom here that what you might be seeing is just the response to strep and it doesn't have anything to do with the medication. Of course there could be a cross reaction.

     

     

    I can say that in our case (i.e., with our dd) our symptoms are pretty time driven. We see the following:

    • dd is on propholaxis antibiotic
    • we observe a ramp in separation anxiety and some defiance
    • we culture sister and sister comes back positive for GABHS
    • we treat sister
    • at 5-7 days after starting treatment, dd has a vocal tic and movement/measurement rituals
    • two weeks later movement/measurement rituals disappear
    • we culture sister and sister comes back negative for GABHS (i.e., we check that we cleared sister)
    • one to two weeks later vocal tic disappears

    so full cycle is 3-4 weeks until we're back to baseline.

     

    So checking on your chronology:

    • He had a sore throat and azithromycin was prescribed.
    • You had increased peeling/tics a week later
    • At three weeks from starting azith (2 weeks from completing) you took him to the doctor and
    • a throat culture came back positive for strep -- i.e., strain was not stopped with azith

    Right?

     

    Has he ever been on steroids over the past 2 years?

     

    Three weeks ago he got sick (sore throat, fever). He was on a five day course of antiobiotic (Zithromax). One week after that his hands peels and tics greatly worsened. I took him to his pediatrician, he had no signs of being sick. I took him because his tics were worse, his hands were peeling and we are trying to get to the bottom of whether it's PANDAS related. His pediatrician took a throat culture and it tested positive. Titer level hasn't come back.

     

    Regards,

     

    Buster

     

    Thanks for your reply Buster. Kawasaski's disease has been ruled out. Your chronology is correct. The azithromycin did not cause any increase in tics when my son was taking it but shortly after taking the Amoxicillin it was like nothing we had ever seen.

     

    He has not taken steroids in the past two years - why do you ask, I'm curious? Thanks again. KimDeL

  10. This happened with my son....about 4 days into the Keflex for strep, his vocal tics and behaviors that he had increased dramatically. This was not contributed to the Keflex, it was just the antibodies spiking at that time from strep....we continued with the Keflex and everything waned slowly over time to just about 0 symptoms. I am not saying that Amox. is not your problem, just that I think many times when a PANDAS child waxes or wanes due to their immune disorder, whatever the child is taking at the time it happens is given the credit for the worsening and improvement.

     

    Your child has possibbly had PANDAS for a few years, and now had a positive strep test....this is what happens....the tics, ocd, etc., spike dramatically......and many times this happens regardless of antibiotics, especially if your child has haad PANDAS for some time.

     

    When you say your childs hands are peeling, do you mean excema? My sons excema, which includes some peeling, always gets worse with PANDAS flairs.

     

    Hi P.Mom - Thanks for your info. No it's not excema, it's only the bottoms of his hands and his pediatrician and pediatric neurologist seem to believe there's a correlation between the peeling and tics.

  11. My 11 year old son has had chronic tics for 2 1/2 years along with occasional vocal tic (sniffing). He currently takes 75 mg. of Zoloft and 1/2 of Clonadine in PM and 3/4 of Clonadine, 3 Fish Oil, Mag./Calcium, Vit. E in AM. PANDAS has been suspected for some time. A little over 2 1/2 years ago his hands and feet peeled, he had slightly elevated titer levels and two weeks later he had rapid onset of neck jerking tic. Over the past 2 1/2 years he has had periods of being tic free (about 2 months) only for the tics to return and new ones added. The past year the tics haven't gone away but at times his hands will peel at which time the tics will get much worse.

     

    Three weeks ago he got sick (sore throat, fever). He was on a five day course of antiobiotic (Zithromax). One week after that his hands peels and tics greatly worsened. I took him to his pediatrician, he had no signs of being sick. I took him because his tics were worse, his hands were peeling and we are trying to get to the bottom of whether it's PANDAS related. His pediatrician took a throat culture and it tested positive. Titer level hasn't come back.

     

    Because we have been dealing with this so long and different things have been tried we decided to try 10 days of Amoxicillin followed by at least 30 days of twice daily Pennicillin.

     

    Within hours after receiving the second dose of Amoxicillin the tics were at the worse in 2 1/2 years and the vocal tic that he hadn't had in months returned. The vocal tic used to be only in the morning but now is constant and happens every 5 to 10 seconds. I waited 4 days and discontinued the Amoxicillin. I will speak with his pediatrician tomorrow when the office opens. My question is has anyone else experienced this? I've read that quite a few people had had good luck with Keflex and Azithromiacin. Please give me your thoughts.

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