This is a copy of the email I just sent to David’s pediatrician, who is a very kind and thoughtful physician.

She is also on a weekly news show in Los Angeles now, so she’s become extremely busy–and it’s such a testimony to her commitment to her patients that she stays on as David’s doctor too. Many doctors would brush us off ‘I don’t have time for this case anyone’, but she understands how hard it is for us to start again with new physicians. Most people just don’t believe it until they see it for themselves, and she’s already seen it, and that took a lot of time. I’m very grateful to her for this.

(In David’s case, ‘seeing to believe it’ was his bronchitis and pneuomonia infections that happened if his sinus infections weren’t treated with antibiotics. She waited to see a few times if he could fight those infections off himself. Most new doctors would force David to go through all of this all over again–‘do you really need daily antibiotics?’. It’s safest for David if he sticks with doctors who know him too.)

Hopefully, good things will come out of this visit to San Francisco…at the minimum, that our blood gets sent to a few good places– 🙂

Begin forwarded message:

From: Teddy
Date: February 8, 2012 6:22:25 PM PST
To: Dr. Cr
Subject: Dr. Puck visit went very well 🙂

The meeting with Dr. Puck in San Francisco went very well–her fellow is *amazing*, and he’s genuinely intrigued by our case. I guess he’s a hematology fellow, but is currently working with her. He was extremely helpful.

Dr. Puck wants to start at the beginning (as most immunologists do), and she ordered a set of all of the basic tests for David–Ig, pneumococcal levels, and even HIV.

(Considering I’ve been tested countless times for HIV, I think that was unnecessary, but I told her that was fine with me if she wanted to…she is a scientist first, I guess…)

I explained to her that I expected the tests she ordered to come back normal, but that I understood it was laying the foundation. I find it disappointing, considering the time and expense to go there that we’re starting by redoing most tests that we’ve already done, but that’s just how doctors are…they need time to think about our case for a little bit. They’re just not going to do a lot of crazy things on a first visit– 🙂

In a nutshell, I explained to her how David has had numerous sinus infections, that consistently turn into bronchitis and pneumonia if left untreated (notably without a fever), and that since starting daily antibiotics, his skin infections have almost gone away completely, and his pink eye infections have been greatly reduced as well.

David is having breakthrough infections, most recently last week, but the culture was negative so it was most likely a viral sinus infection.

She mention if breakthrough infections continue to be a problem, to consider IVIG. I told her we’ve already been discussing it with Dr. K in Los Angeles.

For the next step,

she’s looking into sending David’s blood to Correlegan lab in Boson, to be tested for the NEMO mutation.

Dr. Puck said her office can probably get Blue Cross to pay for part of the test, since the NEMO test is expensive.

Overall, the appointment went well–much better than UCLA. When she asked me about whether or not I was going to go back to UCLA, I told her ‘any doctor who tells me I’m too healthy to have something seriously wrong with me, when I just told him I have over 2,000 pages of medical records, can not be my doctor.’. She seemed to appreciate that–

The fellow particularly liked my spunk…people either like it or they really don’t. It’s really just coming from the wear and tear of being ill for so long (and my frustrations along with it), which compassionate people understand…you’ve been on this journey with David and I for awhile, so you’ve seen a lot yourself, but it still amazes how many new doctors really want to label it as something not that serious…as if I was just bouncing into their meeting full of energy, when I really just feel like crawling into a hole most of the day–

In David, it’s not that serious (yet), but that’s why I want to solve it now, I explained to her. This way, David can avoid the more serious (and expensive!) complications that will develop as he gets older.

Hopefully, Dr. Puck’s office will help for awhile…even if they just order a few of these very specialized tests, I’ll be happy. It’s definitely going to take going back and forth to San Francisco though, so we don’t get pushed to the bottom of the to-do list–

(As much as I have the energy to, anyway 🙂

Thanks again for everything–and I’m glad everything has been going well for you!

Warmly,
Teddy

On Feb 6, 2012, at 10:49 PM, Dr. Cr wrote: