had appt w/ immunologist today

[peglem]

Okay, the immuno appt. was strange, but good.

 

When we saw him 2 years ago, I felt like he thought I was a crazy woman- TMI, as in too much internet. We were sent away with no results...told she was all good and it was implied that we should just accept that she's autistic and there's nothing can be done about it.

 

Today, was like, "Oh, I have an associate in this office who is treating a few PANDAS kids with IVIG. I'll talk to him and see what he thinks. Let's run some tests. Low ASO/ antiDnase don't necessarily mean there was/is no strep infection. Let's check and see if she is maintaining immunity." He called Allie's ped. and after talking to him, said that the rheumy, the ped, and he would get together on a treatment plan. He thought that it made sense to do plasmapheresis 1st and then follow up w/ IVIG....if we can get the rheumy on board with it. 'Course, 1st he wants to see how her labs come out, so nothing definite yet. But I feel like, if the labs come back showing nothing, I can at least say- well you know something is going on here, help us figure it out.

 

Yesterday we saw the rheumy. I'm getting the impression that word IS getting out in the medical community. Compared to the reaction I got 2 years ago from these same specialists is like night and day. The rheumy still seemed a bit reticent- used the "controversial diagnosis" line...but I think after reading the Cunningham stuff, the mouse model paper, Swedo's PEX/IVIG trials, the paper on the 4 adult cases treated w/ PEX, and talking with the immuno-maybe he'll come around! Oh, he said he'd call Dr. Cunningham, too.

[mom md]

Can you post the Swedo PEX/IVIG trial and the 4 adult cases paper. I don't seem to have those in my file and I would like to add them. I got the "controveral" diagnosis line too from the pediatric infectious disease doctor, but she seemed interested in reading Cunningham's paper. We are seeing a new neurologist at some point and I want to show up armed and ready! I did laugh when I read your statement about a mom that spends too much time on the internet...I get that look too sometimes and I have a medical degree! I think it is hard when you show up to a specialist and come with all the knowledge we have and they get a little defensive right off the bat. I have yet to meet a "specialist" beside Latimer that knows more than I do on the subject which is hard. I think if we continue to come with papers, etc they will listen. I am SO glad you feel like someone may be able to help!

[peglem]

Here's the Swedo paper:

http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf

 

and here's the 4 adult cases- this one was done in Turkey:

http://www.turkpsikiyatri.com/en/default.a...icle&id=592

[sf_mom]

It must feel so good...... way to go and don't let them reverse course PEX with follow-up IVIG.

[peglem]

It must feel so good...... way to go and don't let them reverse course PEX with follow-up IVIG.

Well, I don't see how I could stop them from reversing...I'm dependent on them and the insurance company for treatment, and they are not dependent on me for anything. This is not a done deal yet, but I'm glad it is being considered by them...a step in the right direction is worth celebrating!

[sf_mom]

Celebrate!!! Good Times.............. eeeeeeeeeeeeeeehhhhhhhhhhhhhhhhhhhhhhhhhhhhhh (that is me screaming in excitement on your behalf). Now, I'm sending a prayer that it will happen.

 

-Wendy

[peglem]

Celebrate!!! Good Times.............. eeeeeeeeeeeeeeehhhhhhhhhhhhhhhhhhhhhhhhhhhhhh (that is me screaming in excitement on your behalf). Now, I'm sending a prayer that it will happen.

 

-Wendy

Thanks Wendy!

[peglem]

Okay, the immuno appt. was strange, but good.

 

When we saw him 2 years ago, I felt like he thought I was a crazy woman- TMI, as in too much internet. We were sent away with no results...told she was all good and it was implied that we should just accept that she's autistic and there's nothing can be done about it.

 

Today, was like, "Oh, I have an associate in this office who is treating a few PANDAS kids with IVIG. I'll talk to him and see what he thinks. Let's run some tests. Low ASO/ antiDnase don't necessarily mean there was/is no strep infection. Let's check and see if she is maintaining immunity." He called Allie's ped. and after talking to him, said that the rheumy, the ped, and he would get together on a treatment plan. He thought that it made sense to do plasmapheresis 1st and then follow up w/ IVIG....if we can get the rheumy on board with it. 'Course, 1st he wants to see how her labs come out, so nothing definite yet. But I feel like, if the labs come back showing nothing, I can at least say- well you know something is going on here, help us figure it out.

 

Yesterday we saw the rheumy. I'm getting the impression that word IS getting out in the medical community. Compared to the reaction I got 2 years ago from these same specialists is like night and day. The rheumy still seemed a bit reticent- used the "controversial diagnosis" line...but I think after reading the Cunningham stuff, the mouse model paper, Swedo's PEX/IVIG trials, the paper on the 4 adult cases treated w/ PEX, and talking with the immuno-maybe he'll come around! Oh, he said he'd call Dr. Cunningham, too.

 

Quoted myself from Nov. 3rd. Somebody from the immuno's office called today. They got her lab results back (just the stuff the immunologist ordered, not the rheumy's -those went to him) This was not the doctor- she was delivering his message, so its frustrating if you have any questions, because she can't speak for the doctor. So, she said there were no results that proved an immune deficiency, but those pneumoccal titers are low again (we did 2 vaxes 2 years ago to get an acceptable immune response), and he'd like us to redo the vax. AAAAARRRRG. For old folks, they do this vaccine about every 10 years....so shouldn't she have maintained that response for at least 2 years? She's still showing protection levels of tetanus titers though (and that vax was @7 years ago). Anyway, I asked what if I didn't want to revaxinate, since its only been 2 years since the last vax...she couldn't answer for the doctor (I should have been nicer, but some frustration crept into my voice), so I have another appointment on Dec. 1st to discuss this with him. I'm worried that I'm going to get blown off again!

 

Sorry I don't remember which of you has immunologist relatives, but any advice from anyone would be great! I need to know what I'm talking about by the 1st of december!

[mama2alex]

I'm sorry - this must be so frustrating! I think it's NeverGiveUp who's father is an immunologist.

 

First of all, don't take the nurses word for it (or even the doctor's) - have them give you a copy of all the results. If they push back, tell them you have a right to a copy and will pay for the copying costs. Then look at all the numbers carefully and ask some questions here if you need to. Many of us have learned to read these lab reports out of necessity.

 

Second, has your daughter had repeated infections? Sinus, ear, lung, etc? A history of this can support the argument that she has an immune deficiency, without it I think they have a weaker case for the insurance co.

 

My son failed his s. pneumo titers as well, and we decided to revax a month ago. We did this because he's had 6 pneumonias in 5 1/2 years, plus repeated ear infections, so we were highly suspicious of Specific Antibody Deficiency. We just got the results back yesterday (although I haven't seen the numbers yet) and the nurse said he made a "very poor" response to the vaccine and she would start the paperwork for monthly IVIG. We were assured before we ever got the vax that if he failed the post-vaccine titers, there would be no revaxing. So I can't understand why your doctor did it twice the first time! Then to want you to give your daughter a third dose of an essentially adult vaccine in two years?! I think this is ridiculous. We've read that adults are only supposed to get it every 5 years. Can you get another opinion - just on the immune deficiency portion of it? Then if they are willing to treat with IVIG you can talk about PANDAS and possibly starting with a higher dose.

 

We called an immunologist in Omaha, NE who was recommended by one of the mom's here. He was willing to do a phone consult with me after I faxed him our lab results and was very helpful. I can send you his info if you're interested in talking to him. It's so frustrating - all these immunologist work differently and many of them think giving a vaccine to a kid who already has immune problems is no big deal.

 

Good luck and keep us all posted on how it goes.

 

Jennifer

[nevergiveup]

Peglem,

I agree with Mama2Alex. Get a history, one sheet piece of paper of every sinus infec, resp infect, antibiotic scrips given over the last 6 years or so. Also there is no reason to revaccinate. See a different immun doc if you don't get anywhere. If your ped is on board that is very helpful and helps the immun doc justify treatment. YOU need infection documentation. Even with a dad as an immun doc, my pediatric immun didn't really take notice until my pediatrician called and said this kid is sick all the time.

I think you are almost there. My doc had the nurse call too, after I said no vaccine and my pediatrician called it was all worked out. My father said my daughter had to have vaccine and to just follow the procedures. My immun doc said she didn't agree with my father. So find a new immun doc if this one doesn't budge. Where do you live, maybe someone on this forum can recommend someone.

 

 

Mama2Alex,

Try to get largest dose possible for SAID. The higher the dose the more effective the IVIG's are for PANDA symptoms. Coco was getting a low dose 200 mg per kg. My kid gets 500 mg per kg. Both are way below PANDAS dosage. Dosage is key to help eleviate symptoms. Are they saying a 6 month trial or lifetime? With a six month trial they tend to do higher doses (than normal) because they are trying to alter the immune system. The IVIG's will really help with pneumonia and overall health of your son. I am very interested in dosage so please let me know what they are thinking. Also there is a study in Allergy and Immunology showing one case with remission of "PANDAS like symptoms" after 3 SAID IVIG infusions. I am not sure what dose was used on that, but PANDAS symptoms reappeared every 3 weeks so dosage was too low. You may want to check on that. I am currently trying to get my dd dosage higher. They are measuring before and after each IVIG to see how much she eats up the globins, and if they are "eaten" rapidly then she will start getting higher doses. Just an FYI.

[peglem]

Thanks, NGU. My pediatrician has spoken with the immuno. The problem with a list of infections is that the immuno is convinced that my daughter is "just a carrier" of strep, so those + strep tests are meaningless to him. Before we saw this immuno, Allie's ped. ran blood work for IgG subclasses, and the other Ig's. She was low in IgG4 and very low in IgA. Her total IgG was low as well. The immuno did not rerun those. I'm going to call her pediatrician tomorrow- although getting a call through those nurses is quite a task!

I just looked at Kurlan's paper on intracellular strep, which hints that strep carriage may not be benign. I sure wish there was something more definite.

 

Okay, this is going to work out....yes it is, it will, really.

[EAMom]

I just looked at Kurlan's paper on intracellular strep, which hints that strep carriage may not be benign. I sure wish there was something more definite.

 

You mean Kaplan's paper (dh gets these guys' names switched too...it must be the K).

 

Ed Kaplan: WHO Strep expert/Univ. of Minnesota

Roger Kurlan: PANDAS naysayer neurologist

 

Peglem...I'm keeping my fingers crossed for you!!

[peglem]

OOPS! Yes, you're right- it is the K. Then there's Kirvan, too!

[Buster]

You mean Kaplan's paper (dh gets these guys' names switched too...it must be the K).

 

Oh, I don't have them confused -- only their names. One has a place on a dart board (joke)

[mama2alex]

Peglem,

 

Just want to clarify that I (and I think NeverGiveUp) were not referring to Srep A infections when we said to compile a list, but to ear, sinus and lung infections (such as pneumonia) that would support the low strep pneumoniae titers in giving an immune deficiency diagnosis. Has your daughter had recurrent sinus, ear or lung infections? These are caused by streptococcus pneumoniae bacteria, which I understand is not "strep," just has the name streptococcus in it for some reason (this is what one immunologist told me - very confusing).

 

I agree you should try one more time to work this out with your existing immunologist, but move on if they aren't helping you.

 

I can't believe your daughter has low IgA, IgG and IgG4 and they still won't give you a diagnosis and treat! What more do they want??

 

Hang in there. You can push this through and get her the treatment she needs.

 

Thanks, NGU. My pediatrician has spoken with the immuno. The problem with a list of infections is that the immuno is convinced that my daughter is "just a carrier" of strep, so those + strep tests are meaningless to him. Before we saw this immuno, Allie's ped. ran blood work for IgG subclasses, and the other Ig's. She was low in IgG4 and very low in IgA. Her total IgG was low as well. The immuno did not rerun those. I'm going to call her pediatrician tomorrow- although getting a call through those nurses is quite a task!

I just looked at Kurlan's paper on intracellular strep, which hints that strep carriage may not be benign. I sure wish there was something more definite.

 

Okay, this is going to work out....yes it is, it will, really.