PANDAS and immune issues

[shjames]

Hi,

 

My daughter was sucessfully treated for PANDAS about 3 yrs ago (w/Dr. K), and I thought we were through this nightmare called PANDAS. Unfortunately, after a year of continuous sinus infections and upper respiratory problems, she has relapsed as of last month.

 

A lot of new research has been done since she had her IVIG, and we're planning on returning for another round of IVIG w/Dr. K ASAP. However, I was wondering if I should have her immune system tested, and explore the possibility of long term IVIG (say monthly), especially in light of the fact that she NEVER seems to be well! Her pediatrician brushed off my concerns about her constant illnesses, so I can;t get a referral from her. To add to the issue, we recently moved to a new state (NM) and don;t even have a pediatrician here yet!

 

I'm confused and uncertain about how to go about this, what tests should be done, how do I know if she's a candidate for monthly IVIG, and how do I find a good pediatric immunologist? I would be willing to travel anywhere to get to a good immunogist, so feel free to suggest anyone. Am I on the right track here? My mommy intuition tells me we should check out her immune system, but I don;t know what to think anymore.

 

Thanks so much!

 

Shelly

[mama2alex]

We are seeing Dr. Roger H. Kobayashi in L.A. a week from tomorrow:

 

http://allergynebraska.com/index.php?title...3d5d6b601ff9d7a

 

I found him through another mom on this forum. His regular practice is in Omaha, NE, but he also occasionally sees patients at UCLA where he is a clinical professor at the School of Medicine. He looked through my son's labs (which were drawn by his pulmonologist after his 6th pneumonia this summer) and recommended I bring him in to be seen by both him and his colleague, Dr. Stiehm, at UCLA's Pediatric Immunology Clinic. He seems good so far, but we haven't met with him yet and heard his diagnosis. My understanding is that Dr. Stiehm is one of the leading immunologists in the country.

 

My son had very low pneumococcal titers (he's fully vaxed with Prevnar) and there was some issue with his Diptheria titer. Other parents here have talked about deficiences in IgG subclasses, and possibly other indicators, I can't remember.

 

Here is a link to the subclass info from the Immune Deficiency Foundation's website. http://www.primaryimmune.org/publications/...pats/e_ch10.pdf

 

I think a lot of parents on this forum are discovering that their PANDAS kids also have diagnosable immune deficiencies. If your daughter never seems to be well, that's definitely cause for investigation.

 

One more thing - I believe you need to do the immunology testing before you do IVIG for it to be accurate.

 

Definitely follow your mommy instincts! Every time I've ignored my own intuition and listened to a doctor instead, I've regretted it.

[FallingApart]

Shelly, How old is your daughter?

 

I agree with the other posters on definitely testing for immuno issuees. Especially if you will be poking your daughter for any reason anyway. Or, when you do the IVIG, ask the doc to write to draw extra vials of blood to be drawn. That way you will have the blood that was drawn prior to the IVIG if you desice to run a test at a later time.

 

I have a 3 yo daughter that has had IVIG 2 times. The infusions were 35 days apart which is why I am starting to think immuno issues.

 

I'm so sorry to hear that this horrible situation has returned for you. How is your daughter handling it? Does she realize what is happening?

[shjames]

Shelly, How old is your daughter?

 

I agree with the other posters on definitely testing for immuno issuees. Especially if you will be poking your daughter for any reason anyway. Or, when you do the IVIG, ask the doc to write to draw extra vials of blood to be drawn. That way you will have the blood that was drawn prior to the IVIG if you desice to run a test at a later time.

 

I have a 3 yo daughter that has had IVIG 2 times. The infusions were 35 days apart which is why I am starting to think immuno issues.

 

I'm so sorry to hear that this horrible situation has returned for you. How is your daughter handling it? Does she realize what is happening?