I attached below a copy of the email I sent to David’s pediatrician, Dr. Crosby (who is *amazing*–she’s been very supportive over getting the answer for David over the years–)

From her email, it sounds like David’s recent blood work is further confirmation that he has what I have…whatever that might be–

Begin forwarded message:

From: Tara
Date: August 3, 2013 7:20:03 PM PDT
To: Dr. Crosby
Subject: Re: recent results

Dr. Crosby,

Thank you very much for emailing me to let me know about David’s blood test results. If you fax them to me at 323-xxx-xxxx, I can make sure that David’s results get sent to his other physicians.

David’s CD4 count sounds like it just confirms that he has the same deficiency as I do (and David’s sed rate too)….my CD4 count hovers at the bottom of normal/below normal all the time, which is not good. I think that’s a big reason I have so many health problems–I don’t have enough tcells working to do the job properly.

Dr. Puck actually tested David for HIV when we were in her office, but of course it never hurts to test him again. I’ve been tested so many times, in part because I think it’s very similar to the disorder that we have (but ours being genetic in nature). But our failure to mount an elevated wbc/low cd4 has overlays with HIV.

(That’s why I’ve been tested so many times–doctors by instinct recognize the deficiency. I was very frustrated when I first got very very ill, why so many doctors would think by intuition that I could be so sick that I could have HIV, but then when that test was negative go back to thinking I’m healthy.)

That’s part of what made me realize I had something very rare–all of these doctor’s can’t possibly think I could HIV unless something is seriously wrong–clearly, the answer is just going to be more complicated than HIV 🙂

Thank you very much for taking the time to email me!! Hopefully, the complement 2 test we sent to CHOP will shed some light 🙂

Thanks again for everything–

Warmly,
Tara 🙂

On Aug 3, 2013, at 11:31 AM, Dr. Crosby wrote:

Hi Tara,

I will mail you David’s most recent lab results. You may then want to send them on to Dr. Puck or I will if you would like. If you can pass on their office contact info, I will get the labs to them.

Anyway, his pneumococcal titers are higher. His sed rate is 20 this time which is still consider OK but higher than in the past. This number is nonspecific and can fluctuate a lot. You probably have your own experience with sed rates.

His CD4 cell count is on the low end though not super low so I do think we should repeat that in a couple of months. He has had so many lab tests done in the past but it is probably worthwhile to test other things at that time like an HIV just to be thorough. I cannot recall if any of the specialists have tested that in the last few years. I know I have not. I have a feeling his CD4 count will go back to normal range on its own and this is all just part of what we are dealing with with his immune system.

Lauren Crosby, MD, FAAP

La Peer Pediatrics

8920 Wilshire Blvd. Suite 620

Beverly Hills, CA 90211

Tel (310) 652-5004 FAX (310) 652-7195