Getting Desperate

[mama2alex]

We're now considering flying out to see either Dr. Trifiletti or Dr. Latimer. We are in California and up to now, we've tried to handle this ourselves without the benefit of an "expert," but I think we're now at the point where we need more help. I'll write some details below for those interested in reading, but I'm looking for input on this decision. Has anyone else flown cross country to see an expert? Any thoughts on which doc (you can PM me)? How is it working with either of these doctor from another time zone?

 

We've considered Dr. Kovacevic, but I know that he will recommend IVIG. I'm now not so sure that IVIG is what our son needs, given the very limited and short-lived success of his IVIG last month. I need a doctor who really knows the ins and outs of this, and can consider all treatment options. I also need someone who can tell me definitively whether this is PANDAS - I have one doc here who thinks it's Lyme, but that doesn't quite make sense to us.

 

Our son had sudden-onset OCD in June. Started 125mg of Azith in August with some improvement. Soon after we tried 5 days of prednisone, but stopped after 3 days due to side effects. Saw a dramatic improvement once we stopped the prednisone, which only last about a week or so - he got worse again with a virus. We've upped Zith to 250mg, then 375mg and now on 500mg daily. We did IVIG on Dec 8 and 9th and we saw some improvements starting week 3, but again he relapsed with a cold. In some ways, he seems worse now.

 

I think this has been going on for a long time, possibly since he was a baby, and his case seems difficult and complicated. The doctor at Stanford agreed to give us IVIG after diagnosing a Specific Antibody Deficiency to S. Pneumoniae, but after the first IVIG they told us they'd made a mistake in reading his lab results and he doesn't have an immune deficiency, so they are not going to give us any more IVIG. And the doc said he doesn't know that much about PANDAS, so they can't really help us.

 

Any thoughts? Please help - we are getting desperate! I'm so worried that we are never going to get him back to where he was last Spring.

[tantrums]

I believe Dr. T has stated he would do phone consults. Might give you an idea if the trip would be worth it for you. Or maybe he could give enough assistance over the phone to save you the trip?

[EAMom]

The doctor at Stanford agreed to give us IVIG after diagnosing a Specific Antibody Deficiency to S. Pneumoniae, but after the first IVIG they told us they'd made a mistake in reading his lab results and he doesn't have an immune deficiency, so they are not going to give us any more IVIG.

 

Wow, really? That's quite a turn-a-round. I wonder if you should see Dr. Boubolis (immunologist in Ct) in addition to either Dr. T. or Dr. Latimer. Dr. T. seems more "available" than Dr. L.

 

How long has your son been on Azith 500mg? And how much does he weigh?

 

How about trying Augmentin?

 

Have you ever lived in a Lyme-y area? has there been tick exposure?

 

Have you checked other family membes for strep (carriers)?

[Suzan]

I wonder if you should see Dr. Boubolis (immunologist in Ct) in addition to either Dr. T. or Dr. Latimer. Dr. T. seems more "available" than Dr. L.

 

I think that's a good idea and a trip to see both Dr. B and Dr. T maybe could be coordinated in the same trip (I sometimes wish we had done this). I know Dr. T is not one to jump right away to IVIG unless he thinks it's necessary and does look at all other options first.

 

Susan

[sf_mom]

I wouldn't rule out Dr. K.

 

Its true, sometimes one IVIG treatment isn't enough and the very reason you were attempting to get monthly IVIG. The 1/2 life of donor antibodies is 21 days (right when Alex got a cold and had raising titers again). If IVIG isn't going to work Dr. K says it fails the first try and there is absolutely no improvement!!!!!!!! If its going to work you see improvement and you did (have faith in that), it just wasn't enough to keep it going in the right direction. I'm so mad at LPCH right now..... you know they are not returning my calls or providing me with Romy and Bena's lab results. I am meeting Margo tomorrow morning to see if I can't get her assistance in securing those results.

 

First, I'd switch to the Saving Sammy dose of Augmentin to see if that brings you immediate relief while you explore all your options. At this point, it can't hurt. I have a few other ideas for you when we meet next.

 

 

 

 

 

 

We're now considering flying out to see either Dr. Trifiletti or Dr. Latimer. We are in California and up to now, we've tried to handle this ourselves without the benefit of an "expert," but I think we're now at the point where we need more help. I'll write some details below for those interested in reading, but I'm looking for input on this decision. Has anyone else flown cross country to see an expert? Any thoughts on which doc (you can PM me)? How is it working with either of these doctor from another time zone?

 

We've considered Dr. Kovacevic, but I know that he will recommend IVIG. I'm now not so sure that IVIG is what our son needs, given the very limited and short-lived success of his IVIG last month. I need a doctor who really knows the ins and outs of this, and can consider all treatment options. I also need someone who can tell me definitively whether this is PANDAS - I have one doc here who thinks it's Lyme, but that doesn't quite make sense to us.

 

Our son had sudden-onset OCD in June. Started 125mg of Azith in August with some improvement. Soon after we tried 5 days of prednisone, but stopped after 3 days due to side effects. Saw a dramatic improvement once we stopped the prednisone, which only last about a week or so - he got worse again with a virus. We've upped Zith to 250mg, then 375mg and now on 500mg daily. We did IVIG on Dec 8 and 9th and we saw some improvements starting week 3, but again he relapsed with a cold. In some ways, he seems worse now.

 

I think this has been going on for a long time, possibly since he was a baby, and his case seems difficult and complicated. The doctor at Stanford agreed to give us IVIG after diagnosing a Specific Antibody Deficiency to S. Pneumoniae, but after the first IVIG they told us they'd made a mistake in reading his lab results and he doesn't have an immune deficiency, so they are not going to give us any more IVIG. And the doc said he doesn't know that much about PANDAS, so they can't really help us.

 

Any thoughts? Please help - we are getting desperate! I'm so worried that we are never going to get him back to where he was last Spring.

[chodnett]

I agree to try the saving sammy dose of Augmentin XR. My daughter has had complete success with it. She is herself again after being gone so long. Press on for the right help.

[mama2alex]

I believe Dr. T has stated he would do phone consults. Might give you an idea if the trip would be worth it for you. Or maybe he could give enough assistance over the phone to save you the trip?

 

This is a good suggestion. Maybe we'll schedule phone calls with a couple of doctors and then decide who to go to (and whether we actually need to travel).

[mama2alex]

The doctor at Stanford agreed to give us IVIG after diagnosing a Specific Antibody Deficiency to S. Pneumoniae, but after the first IVIG they told us they'd made a mistake in reading his lab results and he doesn't have an immune deficiency, so they are not going to give us any more IVIG.

 

Wow, really? That's quite a turn-a-round. I wonder if you should see Dr. Boubolis (immunologist in Ct) in addition to either Dr. T. or Dr. Latimer. Dr. T. seems more "available" than Dr. L.

 

How long has your son been on Azith 500mg? And how much does he weigh?

 

How about trying Augmentin?

 

Have you ever lived in a Lyme-y area? has there been tick exposure?

 

Have you checked other family membes for strep (carriers)?

 

He's been on 500mg for about 2 weeks and weighs 63 lbs. The Augmentin might be a good next step, before traveling, as several have suggested. This seems to have worked for a number of people, so at this point it's worth a shot. Dr. Lloyd talked me out of it at one point, but I think we're past worrying about rare side effects and I think we could get the prescription from another doctor we're working with. We've never lived in a Lyme-y area, but we've been to places and it's certainly possible to get it in CA. But he's never had a tick (that we know of) and we've never seen the bulls-eye rash, so we've been very skeptical about this theory. That said, we trust the doctor who's saying this, and Alex tested positive for Bartonella, which can be a co-infection with Lyme. We've been checked for strep, and neither of us are carriers.

[mama2alex]

I wouldn't rule out Dr. K.

 

Its true, sometimes one IVIG treatment isn't enough and the very reason you were attempting to get monthly IVIG. The 1/2 life of donor antibodies is 21 days (right when Alex got a cold and had raising titers again). If IVIG isn't going to work Dr. K says it fails the first try and there is absolutely no improvement!!!!!!!! If its going to work you see improvement and you did (have faith in that), it just wasn't enough to keep it going in the right direction. I'm so mad at LPCH right now..... you know they are not returning my calls or providing me with Romy and Bena's lab results. I am meeting Margo tomorrow morning to see if I can't get her assistance in securing those results.

 

First, I'd switch to the Saving Sammy dose of Augmentin to see if that brings you immediate relief while you explore all your options. At this point, it can't hurt. I have a few other ideas for you when we meet next.

 

As always, these are all good points. We may consider another chat with Dr. K to get his take on all this. I do think trying Augmentin XR before flying anywhere is good advice. We are just so tired of doctors who can't help, don't care to help, or can only partially help. California NEEDS a PANDAS EXPERT!!!

 

I can't believe LPCH isn't calling you back! They didn't call us back for two weeks before finally admitting they'd made a mistake reading his labs. I'm not impressed. Remember what I said about getting their lab results - you don't have to wait for the doctor to give them to you.

[nevergiveup]

Mama2Alex,

I would start with two phone consults one with Dr B the other Dr T. I would get a second opinion on the sad diagnosis from Dr. B especially since your son has had serious pneumonia. One study published in Immunology mag discusses a. SAD case where the child had panda like symptoms and they came back three weeks post ivig until after the third ivig they were resolved. I would talk with Dr. T about the lyme factor and get his opinion on next steps. My dd didn't start to see improvement until about 6 weeks post ivig and then it was very saw tooth. She deterioated again and her cam kinase rose 4 months after ivig. She started monthly ivig for CVID in November and we have seen best improvement now after her third one. Have you done the cunningham tests? I think this may help if you see the east coast docs. Also did the ivig help at all with ocd, a lot find it helps with ocd, chorea, and adhd but less with tics.

 

Very curious as to how the labs were misread. What type of response did he have after the pneum vaccine? It doesn't make sense, how could that be misread by the doc?

I also went through a very hard time with my local docs until I finally left for an expert. Its well worth having a doctor who completely understands this illness, has seen hundreds of kids with the illness, and will know if your son is being diagnosed correctly. Not to mention the peace of mind you will have when you talk of your childs symptoms and they say, "oh yes we see that a lot with these kids" instead of looking at you with a blank stare like my local docs did. I also wouldn't rule out seeing a lyme expert in your area for a consult also.

[sf_mom]

Oh you should see the e-mail I drafted and sent this morning!!!!

 

Hmmmm, I got an immediate response (within 45 minutes and prior to 8:00 a.m.) from both the Dr. and the nurse coordinating. They are sending the results and meeting with us on the 28th. I'm not necessarily doing this to secure treatment for my kids..... they will get treated on way or the other. I'm pursuing them so they don't turn away any more kids because as the word of PANDAS spreads and there is further documentation of success they will have no choice. I think it is horrific the way they treated your family.

 

-Wendy

 

 

 

I wouldn't rule out Dr. K.

 

Its true, sometimes one IVIG treatment isn't enough and the very reason you were attempting to get monthly IVIG. The 1/2 life of donor antibodies is 21 days (right when Alex got a cold and had raising titers again). If IVIG isn't going to work Dr. K says it fails the first try and there is absolutely no improvement!!!!!!!! If its going to work you see improvement and you did (have faith in that), it just wasn't enough to keep it going in the right direction. I'm so mad at LPCH right now..... you know they are not returning my calls or providing me with Romy and Bena's lab results. I am meeting Margo tomorrow morning to see if I can't get her assistance in securing those results.

 

First, I'd switch to the Saving Sammy dose of Augmentin to see if that brings you immediate relief while you explore all your options. At this point, it can't hurt. I have a few other ideas for you when we meet next.

 

As always, these are all good points. We may consider another chat with Dr. K to get his take on all this. I do think trying Augmentin XR before flying anywhere is good advice. We are just so tired of doctors who can't help, don't care to help, or can only partially help. California NEEDS a PANDAS EXPERT!!!

 

I can't believe LPCH isn't calling you back! They didn't call us back for two weeks before finally admitting they'd made a mistake reading his labs. I'm not impressed. Remember what I said about getting their lab results - you don't have to wait for the doctor to give them to you.

[EAMom]

If he's only been on 500mg/day for 2 weeks I'd give that another 2 weeks before switching to Augmentin. That would also give you another 2 weeks to see what happens with the IVIG your son did get (since recovery can be saw tooth).

[mama2alex]

Thanks for your support NeverGiveUp. He did start to improve some in the third week after IVIG, but then caught a bit of cold and backslid. School started back up at the same time, so there was stress involved as well.

 

I have no idea how they made such a mistake. The doc said he accidentally read the pre-vaccine titers. Out of 12 serotypes that they tested post-vaccine, he is at 3.0 or below on 4 of them. 4 of them were 20 or above. and 4 of them were between 3 and 10.

 

 

Mama2Alex,

I would start with two phone consults one with Dr B the other Dr T. I would get a second opinion on the sad diagnosis from Dr. B especially since your son has had serious pneumonia. One study published in Immunology mag discusses a. SAD case where the child had panda like symptoms and they came back three weeks post ivig until after the third ivig they were resolved. I would talk with Dr. T about the lyme factor and get his opinion on next steps. My dd didn't start to see improvement until about 6 weeks post ivig and then it was very saw tooth. She deterioated again and her cam kinase rose 4 months after ivig. She started monthly ivig for CVID in November and we have seen best improvement now after her third one. Have you done the cunningham tests? I think this may help if you see the east coast docs. Also did the ivig help at all with ocd, a lot find it helps with ocd, chorea, and adhd but less with tics.

 

Very curious as to how the labs were misread. What type of response did he have after the pneum vaccine? It doesn't make sense, how could that be misread by the doc?

I also went through a very hard time with my local docs until I finally left for an expert. Its well worth having a doctor who completely understands this illness, has seen hundreds of kids with the illness, and will know if your son is being diagnosed correctly. Not to mention the peace of mind you will have when you talk of your childs symptoms and they say, "oh yes we see that a lot with these kids" instead of looking at you with a blank stare like my local docs did. I also wouldn't rule out seeing a lyme expert in your area for a consult also.