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OCF Conference this Friday


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Thanks for all who posted with great info. on here. I wish I could have gone.......maybe next time.

 

 

Buster......I am curious....you said Murphy stood by "only antibiotics" to treat PANDAS.....can you explain her reasoning???

 

 

THANKS TO ALL!!

 

 

p.s.still waitig to hear back from Pepsi about the grant....they told me no news is good news....so, it looks good!~

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Buster......I am curious....you said Murphy stood by "only antibiotics" to treat PANDAS.....can you explain her reasoning???

 

I don't want to speak for Buster (couldn't come close if I tried).

But I think it was Dr Nicolaides who stood by the "antibiotics only" treatment. Dr Murphy was at the conference, but she wasn't part of the PANDAS track. If he's referring to the doctor who co-presented with Beth Maloney, that was Dr Nicolaides. She didn't speak against IVIg or pex per se, but stated the abx only was her protocol. I presume because she has had positive experiences with this. I can speculate that because she's a developmental pediatrician, she doesn't have experience with the other treatments. But she was present for both Dr L's and Dr K's presentations and perhaps now has some food for thought. She was the only doctor who said that she needed an above normal ASO or anti-D Nase B titer to consider a Pandas dx (she felt anti-D Nase B was more reliable). The other doctors didn't feel this was a requirement and that the sum of other clinical symptoms would be persuasive. They also felt other infections besides strep could trigger subsequent episodes, so they didn't spend much if any time discussing titers, since they often see kids after they've been sick a long time and they probably aren't seeing the child's first episode.

 

It's also possible Buster attended Dr Murphy's presentation or spoke with her. So I will wait for him to chime in.

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just from my impressions on this . . . i believe it was in Dr. Leckman's talk that Dr. Murphy was in the audience for. he seemed to have just noticed her in the audience and drew attention to her. she seemed a little reluctant to speak in that setting. i believe he asked her when/if she orders IVIG and she stated she had never prescribed it. that she works with abx only. there wasn't more elaboration than that in the presentation. perhaps someone else had a more in-depth conversation with her.

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The word "cure" wasn't used. Dr K defines success as 75% improvement of symptoms at 3 months post treatment.

 

No one said anything with absolutely certainty. They all admit too much is unknown. They could only speak from their personal experiences. They all seemed open to new ideas backed by research and were respectful of each other's protocols. But for anyone hoping for one solution, one "answer" - that wasn't there and probably won't be for many years.

 

The one disappointment for me was that at both AO and IOCDF, the doctors defined successful treatment outcomes in terms of months, a year at the longest. I suppose that that's a long horizon for a research study or even for a doctor who may not see patients once they get better (unlike a GP who may see you in good times and bad for many many years). But as a parent, it's hard to define success they way they do. I'm shooting for 100% forever. Or at least 100% most of the time and 95% the rest of the time. I think that's where the "grass roots" efforts of parents comes into play. We all know that if we expect mediocrity from our kids, that's what we get. If we expect 100% effort, we're more likely to get that. So we have to keep expecting and asking our doctors to strive for 100%, even if all the unknowns still have to be worked out. That's why there's a "race for the cure". Survivor rates, remission rates go up for those disease where patients refuse to settle for less. But we've got a long way to go.

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Thanks! See, that is what bugs me about Dr. K (although, don't get me wrong....respect and am thankful for him!!!!!)......what he said at the conference is a far cry from what it says on his web site....and from what he told me in person. (just a month or so ago, again, actually. CURE!)

 

Sorry......everyone knows by now that the cure thing bugs the booger out of me. It leaves someone like me with kids that are doing well, about 95% on average, but, who still flair with illness and drop to about 80%, then, so far, pop back up to 95%...well...... it just keeps me thinking ........if one IVIG will CURE them and ease my worries about another bad flair or progressiing symptoms..........but, then if it doesn't and this is as good as it gets, why put them through it............anyone follow me?

 

I know, I know.....there is no answer to this!

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just from my impressions on this . . . i believe it was in Dr. Leckman's talk that Dr. Murphy was in the audience for. he seemed to have just noticed her in the audience and drew attention to her. she seemed a little reluctant to speak in that setting. i believe he asked her when/if she orders IVIG and she stated she had never prescribed it. that she works with abx only. there wasn't more elaboration than that in the presentation. perhaps someone else had a more in-depth conversation with her.

 

Ah, my bad. I wasn't at the Cunningham/Leckman presentation. I was unsuccessfully trying to get my son to participate in a kid's OCD workshop at the time.

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But as a parent, it's hard to define success they way they do. I'm shooting for 100% forever. Or at least 100% most of the time and 95% the rest of the time. I think that's where the "grass roots" efforts of parents comes into play. We all know that if we expect mediocrity from our kids, that's what we get. If we expect 100% effort, we're more likely to get that. So we have to keep expecting and asking our doctors to strive for 100%, even if all the unknowns still have to be worked out. That's why there's a "race for the cure". Survivor rates, remission rates go up for those disease where patients refuse to settle for less. But we've got a long way to go.

 

Agreed!

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Thanks! See, that is what bugs me about Dr. K (although, don't get me wrong....respect and am thankful for him!!!!!)......what he said at the conference is a far cry from what it says on his web site....and from what he told me in person. (just a month or so ago, again, actually. CURE!)

 

Sorry......everyone knows by now that the cure thing bugs the booger out of me. It leaves someone like me with kids that are doing well, about 95% on average, but, who still flair with illness and drop to about 80%, then, so far, pop back up to 95%...well...... it just keeps me thinking ........if one IVIG will CURE them and ease my worries about another bad flair or progressiing symptoms..........but, then if it doesn't and this is as good as it gets, why put them through it............anyone follow me?

 

I know, I know.....there is no answer to this!

Yes, I totally get you. That's why it took us nearly 2 years to decide to do IVIG. I remember early on saying "no way" to prophylactic abx. IVIG and Pex were out of the question. We've now done all 3. What the final tipping point was for us was that we weren't getting long periods of 95%. We'd get 100% briefly and with one wayward sneeze, it would all be blown away again. It was like a brief glimpse of sunshine during a long cold winter. It just wasn't enough.

 

We are 4.5 weeks out from IVIG. Last week was bad. We had one day that was as bad as it was during the worst period 2 years ago. When I spoke with Dr K at the conference, he was of course thrilled to hear this. But then, he wasn't the one who had to keep two kids and a husband from killing each other for that day! But on a bright note, this morning, DS was extremely social, happy and alert. He started camp today and at noon, I popped in (it's next door to where I work) and he told me he was fine and ignored me because he was too busy playing and interacting. he hasn't been like this in a very very long time. Dare I hope?

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We are 4.5 weeks post ivig with Dr K too. I am glad to hear your son is doing well at camp today.

Today is not good for our ds. His voice fluctuation is up and down he is having major word retrieval problems. I have to decipher everything he says to me. He is totally unmotivated and is laying down all the time. A few days ago a couple of friends of mine said that he was conversing with them and that they had never talked that way with him before. He greeted our guests at the door the other night too. Now he is just awkward and goofy all over again. Now how do I go about drafting that 1 month progress report to Dr K??

 

Dear Dr K, It was good and now its bad again, Sincerley, johns(frustrated!)mom.

 

Sorry to be such a doubting Thomas. I will just try to keep positive like DH who thinks everything is just fine!

 

GRRRRR!

 

 

 

Thanks! See, that is what bugs me about Dr. K (although, don't get me wrong....respect and am thankful for him!!!!!)......what he said at the conference is a far cry from what it says on his web site....and from what he told me in person. (just a month or so ago, again, actually. CURE!)

 

Sorry......everyone knows by now that the cure thing bugs the booger out of me. It leaves someone like me with kids that are doing well, about 95% on average, but, who still flair with illness and drop to about 80%, then, so far, pop back up to 95%...well...... it just keeps me thinking ........if one IVIG will CURE them and ease my worries about another bad flair or progressiing symptoms..........but, then if it doesn't and this is as good as it gets, why put them through it............anyone follow me?

 

I know, I know.....there is no answer to this!

Yes, I totally get you. That's why it took us nearly 2 years to decide to do IVIG. I remember early on saying "no way" to prophylactic abx. IVIG and Pex were out of the question. We've now done all 3. What the final tipping point was for us was that we weren't getting long periods of 95%. We'd get 100% briefly and with one wayward sneeze, it would all be blown away again. It was like a brief glimpse of sunshine during a long cold winter. It just wasn't enough.

 

We are 4.5 weeks out from IVIG. Last week was bad. We had one day that was as bad as it was during the worst period 2 years ago. When I spoke with Dr K at the conference, he was of course thrilled to hear this. But then, he wasn't the one who had to keep two kids and a husband from killing each other for that day! But on a bright note, this morning, DS was extremely social, happy and alert. He started camp today and at noon, I popped in (it's next door to where I work) and he told me he was fine and ignored me because he was too busy playing and interacting. he hasn't been like this in a very very long time. Dare I hope?

 

 

 

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Thank you for all your posts. I really enjoy reading everyones takes on the OCF Conference. Between AutismOne conf and OCF conference some families will find some hope and treatment. You rock!

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Thanks! See, that is what bugs me about Dr. K (although, don't get me wrong....respect and am thankful for him!!!!!)......what he said at the conference is a far cry from what it says on his web site....and from what he told me in person. (just a month or so ago, again, actually. CURE!)

 

Sorry......everyone knows by now that the cure thing bugs the booger out of me. It leaves someone like me with kids that are doing well, about 95% on average, but, who still flair with illness and drop to about 80%, then, so far, pop back up to 95%...well...... it just keeps me thinking ........if one IVIG will CURE them and ease my worries about another bad flair or progressiing symptoms..........but, then if it doesn't and this is as good as it gets, why put them through it............anyone follow me?

 

I know, I know.....there is no answer to this!

 

 

Our dd had her first IVIG with Dr. K 4.5 weeks ago. We had several discussions with him regarding the expected outcome and he specifically told us at that time that he is looking for 75% improvement in 3 months but has seen better than 90% improvement on occasion, although I would expect that there is a huge variation in each parents assessment of what 75% improvement is. He continued to say that if she is at 75% in 3 months, he would like to see continuous improvement over the next 6 months (9 months total) but that we should not expect her to reach 100% in 9 months. If she plateaus at 75%, we may have to do another IVIG. I also believe he also told us that 87% of his patients achieve 90% in the 9 months. I don't ever recall him saying anything about a cure and in fact, he said that only a relatively small percentage truly achieve 100% permanently while still in their adolescence. I know this sounds discouraging but when our dd was unable to function from hour to hour without going into extreme rage, living at 90% with occasional OCD symptoms would a blessing, as long as it doesn't interfere with daily life. Would I like to see her at 100%? Absolutely. And I am hoping she eventually gets there, even if it requires that she outgrows this when she is an adult.

 

I also got the impression from our consults with Dr. K. that he doesn't believe that abx is the answer. However he did prescribe Augmentin 500 1x/day for at least 6 months after the IVIG and indicated that she would probably be on it until she was an adult (21). I got the impression that he wanted the abx in her system when and if she was exposed to strep (or another infectious agent). The abx is a preventive precaution and not part of the therapy.

 

I am sorry that you got a different impression from Dr. K. He has treated hundreds of kids with IVIG and if it truly was a cure, he would have said that everyone treated improved to 100% and all of the other doctors would believe the same. This is not the case but he believes, from all the cases he has had, that IVIG is one of the best hopes.

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Thanks! See, that is what bugs me about Dr. K (although, don't get me wrong....respect and am thankful for him!!!!!)......what he said at the conference is a far cry from what it says on his web site....and from what he told me in person. (just a month or so ago, again, actually. CURE!)

 

Sorry......everyone knows by now that the cure thing bugs the booger out of me. It leaves someone like me with kids that are doing well, about 95% on average, but, who still flair with illness and drop to about 80%, then, so far, pop back up to 95%...well...... it just keeps me thinking ........if one IVIG will CURE them and ease my worries about another bad flair or progressiing symptoms..........but, then if it doesn't and this is as good as it gets, why put them through it............anyone follow me?

 

I know, I know.....there is no answer to this!

 

P Mom - I am totally with you... my son does fairly well between exacerbations... he is happy and functional. I understand that IVIG will not remove exacerabations... so I am having trouble justifying it in our case. I need to talk to the doc more about this. It seems IVIG is really helpful for families who cannot get their kids into remission otherwise... but if you are able to go into remission and be functional without IVIG... is there a point to the treatment? Will IVIG reduce the number of exacerbations he has? That would be a reason to try it... I am still somewhat on the fence in our case.

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