qannie47
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Posts posted by qannie47
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Spoke to Dr. Lectman. He was wonderful. I asked him what the purpose of his phone call was and he said, "I understand that you have been talking to our researcher at Yale and that you have some concerns about IVIG, and I would like to talk to you and perhaps answer any questions you might have. " I was stunned....He called because he cared...Anyway, he was really nice. He took the time to explain why there are so many "unanswered" questions about this disorder. I questioned him about Dr. K's claims that Ivig is a cure and that I have found contradiction in my research. He said that Ivig is considered to be a very promising treatment for these kids, and yes, there have been cases that there has been complete recovery after just one treatment or two. He did go on to explain what a mixed bag of nuts it is, and that because it is rare, the clinical trials usually involve few children and unfortunately that has made it more difficult because you really need to see consistant, repetitive results to really come up with "hard" evidence to show effectiveness of treatments as well as understanding the etiology. He was really nice and said that he knew Dr. K personally, that in fact he just had dinner with him. He said, "Dr. K knows more about treating kids with ivig more then anybody. He is a brilliant man and I would tell you to go ahead with his treatment. If I had a kid with Pandas, My money would be on Dr. K in helping him". I asked him if he is doing an independent study, he said no. That what he is doing is that he is involved in the screening of potential kids for these trials. He felt that another issue that the studies have had is that perhaps some of these kids in the study were not "true" panda kids. He felt, that this would explain the "mixed" results. So he now personally screens these kids on some level. I talked to him about my son and he felt that he did meet the classic criteria and that we are on the right path. That made me feel good in the sense that he gave me some hope back. Anyway, just wanted to share my conversation with all of you.
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HI, there is a site, Webpeciatrics.com that gives you the diagnostic guidelines for Pandas. If you have not already seen it, I highly recommend it. When you read it, and you find that it applies to your situation, then you are probably on the right track. The one big criteria that needs to be met is the "abrupt onset", as in overnight. One day your child was basically normal, the next day all broke loose. Good Luck
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Hi. Have any of you ever heard of a Dr. Leckman? Yesterday I received a voicemail from him out of Yale. He said that he wanted to talk to me about my son and his IVIG treatment. He gave me his direct line and asked me to call him today. I googled him because I did not know who he was. He seems pretty impressive and a big player in the Pandas arena. I am not sure where the conversation will lead and what he wants. One of the researchers that I have been in contact with must have spoken to him about us. It looks like he is doing an independent study in conjunction with the current NIMH that is in progress now. Anyway, any feedback on him?
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Great post Norcalmom. Spot on. I must say, as difficult as this disorder is to wrap your brain around, when I read examples about the cycle and how Pandas presents itself, it is so uncanny. Still sends chills up my spine.
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p.s. How does one pm? and is my inbox the thread? Yes, when it comes to computers I am retarded.
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The surgical center recanted it's quote after I told them I could not find anybody else who paid that price....they said, "that is why we don't like to give examples". Huh? I said, "I did not ask for an example, I asked for a price ". Whatever.....Anyway, in the end, the new prices are as following...$5.000 for ivig $1,800 for facitlity use $2400 for Dr. K. Grand total $9,200...We are paying out of pocket and have decided to give it a try...We must. Perhaps Matty will be those few that never relapse....It will be done in June...
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I called the surgical center back regarding price...They now quoted me $5,000 for ivig $900 each day in center and Dr. K's fee...Grand total $9,200. We are going forward with it in June. Perhaps we will fall into that % of kids that never relapse.....prayers....
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My Matthew is in a moderate episode, and has been for awhile. This time around his mood fluctuations/temper tantrums/defiance/now swearing....is just terrible. He has a twin with sensory issues who feeds off this..ugh. I am stuck somewhere between empathy for his Pandas and high frustration in regards to these behaviors. I feel I can't just let him have full run with it, but yet....I can see that the kid has not ability to reason or compromise at this time. He is not responding at all to time outs, positive reinforcements, other consequences....Do any of you have any tips or insights as to how to keep this child in check on some level while we weather this storm? We are falling into a negative rut...the entire household.
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Thank you so much for all your replies....I just stumbled upon this forum last night and I have to say wow, what a wonderful forum. The threads have been insightful and informative. Clearly, you all know your stuff and are truly dedicated to the needs of these Panda kids, yours as well as others. I was lead to believe that IVIG would cure Matthew, at least we had a 80% chance, so with other stuff on my plate I did not do the research as I should have, I now can see. Once again, thank you for all of your clearly heartfelt replies.
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Hi, My Matthew has had 4 episodes now in a year. Each one unique onto itself. Matthew's 2nd episode sounds like your ds's recent one...It was milder and slow to come on. I guess that because we got him on antibiotics right away, that short circuited the response and made it less severe. Perhaps that is what is happening with your daughter. I was told that each consecutive episode can present itself differently from prior episodes.
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- Thank you for your responses...I see that perhaps IVIG is not the cure all that I have been lead to believe...I am now confused as to why Dr. K was not more specific about what I should expect regarding lasting results of IVIG. I double check his website to make sure that I understood correctly, and it does in fact tout "long lasting, and complete recovery' from IVIG. I just sent him an email. Also, I have not had my child tested for Lyme....I never even heard of the correlation...I am going to ask our pediatrician to run the test. I am surprised that Dr. K did not order this test. qannie47
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Please Help. We are working with Dr. K and just recently found out that IVIG may not be covered. I was quoted $15,000 for the first day and $12,000 for the second day from the center that it will be performed. My son is only 7 and he only weighs 50 lbs. I have searched all over the internet, including this forum, and it appears that NOBODY has been asked to pay this high of an amount. Something seems amiss...If anybody could shed some light as to why we are being quoted such high fees? The center is currently out of network for bluecross and if we have to absorb that 30% it will be crushing...particularly if the first treatment does not work.....HELP qannie47
So lost! Now what?
in PANS / PANDAS (Lyme included)
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I am so sorry that you are going through this. I read your post and I can feel your pain. When children are in the grips of this, I think the most difficult part is not knowing if there is a light at the end of the tunnel. I know that is how I feel. I unfortunately, like the docs, have no great answers for you in respect to when it ends. However, sounds like you and yours are overdue for a goodnight's sleep. I might get some flack for this, but a pediatrician friend of mine said that every once in awhile, when it has really hit the fan, I can give my child a dose a kid's benadrill at night to help him sleep. I know this sounds like your drugging your kid, and "isn't that bad?", but as she conceded, "You must eventually sleep, if you don't get some sleep, it is only going to make the situation worse for all involved". something like that.....so when my son is just off the wall, his brother, father and I have all just had enough, I give my son Benedrill to sleep...without guilt.