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Dr. Kovacevic


bmom

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I found a doctor that talks about treatments for PANDAS. I know that Dr. Murphy is a specialist in this area, yet I am wondering the treatments that she does. Does she use antibiotices, steroid bursts, or IVIG? Dr. Kovacevic talks about treatments for this in the form of antivbiotics and different things. For those that have seen Dr. Murphy did she talk about treatments such as these?

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I have been in touch with Dr. K NUMEROUS times, and have had phone consults with him. I really do believe he is the best at dealing with PANDAS. Dr. Murphy is also well respected, but, I don't believe she goes further than antibiotics. I do know of cases where (I spoke to one Mom personally), he has cured, yes, I said it, PANDAS.

Kelly

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Hi,

Do you know where he is located? I am still not even sure if my son has PANDAS (depends on which dr I talk to). I do know that his tics have increased this week and he is having a hard time writing his letters and numbers (wants to write them backwards). I have been sick with the flu all week and am wondering if the two are related. I have had him on a strict diet according to his IgG results and am disappointed by this recent surge in tics. I am starting to get so frustrated. I hope this passes soon as he is doing some testing for private school admissions in less than 2 weeks.

 

Thank you,

tlk

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Yes, IVIG. There are several documented cases where IVIG has resulted in lasting resolution of symptoms. I spoke to a MOM whose son had IVIG after first episode of PANDAS, 6 months later, when titers seemed to just stop coming down. They opted for IVIG (Dr. K), and now 2 years later he is still symptom free, has had No flairs, even with illness and exposure to strep SEVERAL times. The NIMH even used IVIG with great success and stated these kids had lasting benefits, I really don't understand why it is not more widely recognized and used. I posed this question to the NIMH nad have not received an answer, yet, when I asked other questions, they either called or e-mailed me. I believe that since this is "new" and controversial (why, I don't know), doctors are afraid or not quite sure what to do. Yet, IVIG is safe and widely used for other immune disregulation illnesses every day. I have looked into everything and many doctors, and, if need be, (and I pray not), Dr. Kovacevic will be the doctor we go to next. Dr. Murphy is definitely a good bet, but, from what I have heard and I have "talked" to her via e-mail, she only uses antibiotics, and, some kids need more than that. It also seems to me that if your kid has a negative strep titer, she automatically rules out PANDAS. By the time my kids got their titers ran, their symptoms were almost gone, and their tests were negative, but, they are still PANDAS. The titers need to be drawn when they are in active episode, otherwise, the titers are not much help. Also, Dr. K realizes this, and he also acknowledges that other illnesses and viruses can cause PANDAS, (PITANDS), and he checks for these titers as well, which I believe is highly important. PANDAS is not so cut and dry, check for strep titers, and if negative, no PANDAS. The diagnosis involves much more and several other factors and illnesses.

 

Kelly

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Just to make sure that you have all of your information correct; When you say that IVIG is safe, are you sure that is completely a true statement? I am a RN and I can tell you that all invasive procedures risks. We did consider trying to find someone to do IVIG for our son if the antibiotics did not work. However, I had great reservations, and would have only done this as a last resort. I understand that many have children who are suffering greatly and in that situaton I would certainly consider it, but to say that it is without risk is a misconception. I have seen many "safe" procedures result in devestating outcomes though this is often times not discussed or documented. I am certainly not telling anyone what they should or should not do. As I said, we considered it as well. I am only saying, you should make informed decisions. Good luck to all.

 

Dedee

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Thanks for your post regarding IVIG. I did not state that it was without risk, because, there are certaintly risks involved, and every parent would be made well aware of them if they considered this route. It is generally considered a "safe" procedure, as in, lets say a tonsilectomy. (just to give a reference, not that they are the same) Yes, both carry risks, but, both are considered routine and generally safe procedures, but, both can sometimes have a negative outcome. I would not consider this as first line treatment either, but, we would consider it if the other treatments failed and my child was suffering. I do not believe there is any chance a parent could even get IVIG for their child without being completely informed by their physician on the risks it involves... no physician would administer this treatment without the parents being completely aware of everything and then consenting. It is widely used and can really benefit a PANDAS child when the situation warrants it, and, I believe we should all be aware that this treatment does exist for your child if all else fails.... making parents aware of the possibility was my intention.

 

Kelly

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in the early stages of our sons illness we talked to our local children's hospital about IVIG treatment - and they were absolutely opposed to it saying there were too many risks. Had my son continued to be as sick as he was at the beginning and not responded to antibiotics I would have pursued it in the states if needed - but was glad not to have had to. I was always glad to know there was another way to treat him if he did not get better - but was concerned about the risks that are involved. I have read over the years several stories where the IVIG was life changing for PANDAS kids - and they recovered very well.

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