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Dr. K and IVIG


P_Mom

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Well, lying in bed thinking when I woke up this morning (I told you I think too much).......I started to wonder about WHY DR.K likes IVIG over PEX and only offers IVIG, saying it is more effective, etc. Why? When the Sue Swedo's studies, Dr. Latimer, Dr. Cunningham...the big names, say PEX is better, but, IVIG can also help.

 

Could it be because DR. K only has access to IVIG (and not to PEX) at Oakbrook Surgical Center??.....being it is not a hospital and PEX is a more "complex" procedure??? Would he still choose IVIG over PEX if he had the choice? I am really not sure....just something I thought about. I know we all want to be completely, correctly informed about everything...just a thought and I could be totally wrong. I am thankful for Dr. K one way or the other....and I do know that IVIG does help many kids.

 

Kelly

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Kelly,

 

I just completed IVIG treatment with Dr. K and returned from Chicago yesterday. He is associated with several hospitals one of them being Loyola and would have access to PEX if required. I asked him very specifically about his preference of IVIG over PEX. He said that the risk of infection and reaction to PEX is greater and he believes the results are similar with IVIG (My father-in-law is a Urologist and told me similar). Where they have had difficulties with certain children is when they've gone undiagnosed and treated for years. Some of these kids need several IVIG treatments. He is also said he is getting ready to publish his findings of treating of children for the last 10 years along side the Mayo Clinic and John Hopkins (not sure of his relationship with those particular hospitals) sometime this fall or early next year. It is my understanding that they are considering changing the name PANDAS to something else because the name PANDAS has been so negatively received by the Medical Community. I understand he's been discussing this issue with Susan Swedo. His hope is to broaden diagnosis, standardize treatment, etc. so any Dr. is willing treat appropriately. NPR was there interviewing him while we were receiving treatment. I have a feeling the tide is about to change regarding PANDAS.... keep the faith.

 

I feel very blessed to have been able to receive proper treatment now. Within 48 hours of treatment our sons remaining tics have disappeared... coughing/clearing of the throat and eye blinking. He has been very hyper but happy almost manic with mood liability and uneven pupil dilation but from what I understand from Dr. K this is all part of the recovery process.

 

Sorry, I lost my prior post. It was a little more detailed but I am short on time this morning

 

 

Well, lying in bed thinking when I woke up this morning (I told you I think too much).......I started to wonder about WHY DR.K likes IVIG over PEX and only offers IVIG, saying it is more effective, etc. Why? When the Sue Swedo's studies, Dr. Latimer, Dr. Cunningham...the big names, say PEX is better, but, IVIG can also help.

 

Could it be because DR. K only has access to IVIG (and not to PEX) at Oakbrook Surgical Center??.....being it is not a hospital and PEX is a more "complex" procedure??? Would he still choose IVIG over PEX if he had the choice? I am really not sure....just something I thought about. I know we all want to be completely, correctly informed about everything...just a thought and I could be totally wrong. I am thankful for Dr. K one way or the other....and I do know that IVIG does help many kids.

 

Kelly

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Well, he seems to be the most experienced doctor with PANDAS...and I do think that he confers with doctors all over the world for this, so he probably has some good reasons why he favors IVIG over PEX. It could be as simple as IVIG only being the local treatment choice at the time he bagan treating PANDAS, he saw good results, and is of the mindset, "If it is working, don't mess with it."

 

P.Mom, I believe there is probably some truth to what you thinking when you consider all doctors...they are somewhat limited by the policies, procedures, equipment and drugs that are available to them at a hospital. If not happy with treatment, seek a different hospital affiliation and see where that takes you.

 

It seems Georgetown has no qualms about PEX. A rhumatologist I saw at Hershey Medical made PEX out to be a very dangerous procedure, that only an irresponsible doctor would try...it was kind of laughable...I just shook my head...we were heading out the door anyway....

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Well, we are working on an appt for pex at Gtown with Dr Latimer. She is open to either treatment, but does feel pex slightly edges out ivig in results. She says that they have been doing pex for years and years for neurological issues. There is a team at Gtown that basically does it every day, it is pretty routine for them. The hematologist at Gtown also seemed to prefer it to IVIG as far as side effects go.

 

I often wonder if some docs don't treat pandas, because they have nowhere to refer them to. Also, if Dr. K has access to pex. I mean, hospitals may do pex- but if they are not believers in pandas- they may not do it for that. I believe Dr Latimer was head of neurology at Gtown, at some point- so she has a lot of contact and carries weight there. She has put together a pandas team there!

 

Unfortunately, our kids our ginnypigs (sp?). Regarding the other post- hopefully when our kids have kids- we will really know what works!

 

I will keep the forum posted.

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Pixiesmommy (I think) posted that Dr. K. thought PEX worked better for the tick-y PANDAS and IVIG was better for OCD-ish PANDAS. So, if you have a study where most of the Pandas patients are recruited from tourettes groups(more ticky vs. ocd), then PEX might appear to be superior.

 

I would say, that IVIG was a pretty smooth process for our dd (and no sedation like for PEX). She did have flu like symptoms for 2 days afterwards, which were helped by tylenol/benedryl. It sounds like with both IVIG or PEX, recovery takes time, once the procedure is done.

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I was lying in bed this morning analyzing the same thing: PEX vs. IVIG.

 

After reading these posts I agree that Dr. Latimer and Dr. Cunningham favor PEX and Dr. K as well as our immunologist favor IVIG. I keep visualizing sitting around a table with all of them and listening to them debate this issues along with the issue of how long to take antibiotics.

 

Anyway, please refer to my post a few days ago titled How IVIG works with Autoimmune diseases. I need to find a similar article for PEX so I can better compare. Our immunologist feels that IVIG is superior because it builds up a weak immune system and modulates an overactive immune system. I do think that if I had a child older than 13, I would do PEX first followed by IVIG second. With a younger child, who does not have low IGA, I think I would just do the IVIG, which is what we are doing. This is just my thoughts to myself as I lay in bed thinking all night long!! It appears that both treatments are successful right now. I know Dr. K says that he has an 80% success rate with IVIG with one treatment. Does anyone know what the success rate is with PEX?

 

I guess this is just like any other disease where the treatments are so varied. We have a friend dealing with breast cancer and she just went to 4 doctors and got 4 different treatment plans!! I now understand how frustrating this is for her.

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Kayanne...thanks for your reply....I wasn't pondering that question because we are unhappy with treatment....we no longer see Dr. K....we see Dr. Latimer now, and she offers both. It is just when you are considering one of the treatments, you, of course, want to do what is best. Then, I just start to think about all sorts of stuff....and I was just wondering why these docs differ.........wouldn't it be nice if they all agree?

 

I understand how each treatment would have a benefit over the other....it just stinks not having a concrete answer.

 

I no longer personally believe either is a permanent cure, I felt that for a while now, and then to hear Shelly James daughter had a relapse after 3 years post IVIG, that did it for me.......someone made a great statement recently....

 

If these treatments were cures, you wouldn't have the need for antibiotics to prevent future strep. How simple...how true.

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Kayanne...thanks for your reply....I wasn't pondering that question because we are unhappy with treatment....we no longer see Dr. K....we see Dr. Latimer now, and she offers both. It is just when you are considering one of the treatments, you, of course, want to do what is best. Then, I just start to think about all sorts of stuff....and I was just wondering why these docs differ.........wouldn't it be nice if they all agree?

 

I understand how each treatment would have a benefit over the other....it just stinks not having a concrete answer.

 

I no longer personally believe either is a permanent cure, I felt that for a while now, and then to hear Shelly James daughter had a relapse after 3 years post IVIG, that did it for me.......someone made a great statement recently....

 

If these treatments were cures, you wouldn't have the need for antibiotics to prevent future strep. How simple...how true.

 

I wasn't thinking that you were unhappy with Dr. Latimer...I was just making a general statement...because in my limited experience in trying to get help...I was so disgusted wth CHOP...that I wasn't going to even consider seeing Dr. Josphine Alia because she is also with CHOP. We were afraid it was more of an institutional policy for these kids to be put on psych meds....and Dr. Alia is a ped. psychatrist.

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Kayanne.....good point about certain doctors being limited on what is available to them. I don't believe that having hospital access automatically makes you have accessibility to all equiptment/procedures.

 

A mom (I try not to use specific names) told me she asked Dr. K specifically why he does not use steroids for longer periods like Dr. Latimer does....and she said that Dr. K's response was that Dr. Latimer is a neurologist....and that she can do these things....and that he is just a pediatrition..and that he could not because he could "get in a lot of trouble,".....but that he understands why she does it!!

 

Like I said...I heard this second hand, but, the Mom is a VERY reliable source!! I cautiously post things I hear second hand.

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I have to say, this whole thing is giving me a headache today.

 

What stories do we have from this forum? Lots of kids here have gone to Dr K. Has IVIG worked for them? I always feel when researching posts, that they have IVIG and later are back with more issues. Is this because it just takes a while to heal?

 

Do we have any PEX stories? I have a neighborhood mom that says her daughter had pex, and 10 yrs later has never had another issue (she was such a believer that when her son contracted pandas recently, she went straight for pex). Of course, there is another mom who I think many here know, her daughter ended up having pex twice, and still a rough road. She is a teen now, and doing well.

 

I am thinking of starting a thread to ask people who are one plus years out from IVIG and PEX to respond. Are they still here?

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dcmom...didn't mean to give you a headache! ;0

 

What I think it boils down to is that each kid is different............maybe it depends on how bad they got it...how long.....how old they are.......deficient immune systems...etc. What works for some...won't work for others....we have seen it already regarding antibiotics. Good idea about the new thread!

 

EAMom......correct me if I am wrong because it has been a bit since I read the study Swedo did....(but I did read it numerous times :) ), but, didn't she have more ocdish patients than tic-ky patients? I think in her study, Pex had greater overall improvements in all areas over IVIG ...even with the ocd kids.

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I truly got the impression from Dr. K that PEX is a risker intervention and it was nothing other than that for him. But, again that is coming from a mother who has just completed IVIG two days ago and praying I made the right choice. AND, believe me, we will consider the alternative of treatment PEX if the IVIG doesn't produce the results we are hoping for our son.

 

I'd be curious to know what Dr. Latimer perceives to be the risk to be of PEX over IVIG.

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SF Mom.....believe me, I am truly, truly, hoping and praying for everyone on here...whether you got IVIG, PEX, steroids, antibiotics...whatever......My hope is whatever you choose, it works. I just think a lot and then sometimes go crazy posting for a day....then I get quite for awhile....this is a posting day for me!! (maybe that is not a good thing :)

 

I obviously don't know what Dr. K is truly thinking...or what he has access to....I do believe he is doing his best to help these kids with whatever resources he has....I know he cares! He has been a blessing...I am not trying to discredit him.

Just covering all the angels...that is my nature. (obsessive maybe?) :angry:

 

I was writing out bills today (yipee) and was listening to music...and a song came on (don't know the name, but, it was a Christian station) and it was talking about "making it through another day." My mind went back to the onset of this with my younger son and how I was barely making it through another day....really, there were days I just wanted to run away......and got so low at one point, I thought to God....maybe if I just could die it would be good...I can't deal with this pain...WHAT IS GOING ON WITH MY SON!! WHERE DID HE GO???? (I would NEVER do anything stupid...just fyi) Listening to this song, thinking back, and then thinking about everyone in the thick of it right now...I just broke down and sobbed. I am with all of you in this fight!

 

Latimer mentioned it was less riskier because you are not adding (can't think of a better word right now) anything to them with PEX. I didn't really ask many questions about it.......I'll ask more when I speak with her next.

 

All in all...they both seem to work....and carry their own unique risks.......although worth it if it helps your child.

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You know I'm jet legged and overwhelmed with the daily tasks and worried for my son. BUT, the one thing I do know is Dr. K was very, very comforting to be around and hear his perspective. He is truly committed to figuring this out for everyone. I also got the feeling that there are a lot more people working with him (more than we will ever know) to help him publish his results so its widely treated. I believed him when he thought IVIG was the right answer for my son...... even when he explained the lack of success he has had with TIC presentation. He did clarify that the tough cases had gone untreated for a while and PEX sometimes can be the better solution. He also admitted he didn't understand the relationship with the weak immune system 'yet' and the role of immunization. We need to keep presenting him with the failed STREP PNEUMOCOCCAL ANTIBODY TITER results. He also spoke about the 2 specifics cases that are now re-experiencing symptoms after IVIG over three years ago... He did not mention any names but he is reconsidering the current prescription of antibiotics for 'only' one year post IVIG. He is definitely listening and open to all perspectives.

 

I'm also conflicted about posting the following story because I don't want to discourage anyone from pursuing PEX or making any decision without consulting with their Dr.'s first about the risks. BUT, a good friend of mine, sister with a rare autoimmune disease almost died after PEX it deplete her system so much she was given her last right... Thankfully, she recovered but its taken a long time with a lengthy stay in the hospital. AND, even knowing this information I am still considering PEX as a possibility for our son if need be. AND, I am sure someone could come up with a similar story about IVIG and its consequences.

 

Anyway, grateful we have a choice between two options. I'll do anything to help my son beat this disease.

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