Labs from Cincinnati, strange Wiscott -Aldrich, abnormal CD40

I found part of what of what I was looking for—the abnormal Wiscott Aldrich.

Noah had one like this as well, but we did rhe second time the lab blocked out the neutrophil result—that’s why it was blocked when you pulled it up.

The reason the lab did that, is because they were annoyed that I had called them asking what this result could mean (I don’t think they like direct calls from patients…). I mean, the woman was really annoyed. I thought if was kind of spiteful they just blocked it out when I sent blood the second time…people can be really petty sometimes 🙄.

I never asked about these CD40 results, and I’ve completely forgotten about it…forgot to even mention it to people over the years…not sure what that means…

There’s of course the slightly low natural killer cell results in there too. That’s part of the frustrating problem—nothing that jumps dramatically off the page, which is why I feel like these are more like just clues than the actual answer—

I’ll find Noah’s WA first results as well, the one that was similar to mine. You saw the blocked out one in your office. Thanks again for everything.



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Dr. Butte is amazing :)

Dr. Crosby,

I’ve attached a copy of the email I just sent to Dr. Kachru—Dr. butte was amazing. I had so little expectation for Noah’s appointment (I usually run bad at UCLA),

it was such a breath of fresh air that Dr. Butte knew or had heard of all of the people we’ve seen (Jean-Laurent Casanova, Dr. Jennifer Puck in San Fran, Dr. Eric Hansen at the NIH) , and he even studied at CHOP (so he was particularly annoyed when I couldn’t remember the doctor who oversaw our study over there :)…it was weird experience for me to give a doctor the ‘best of’ medical highlights over the last twelve years and have the doctor know everything or everyone I was talking about.

Dr. Butte also had good suggestions for immunologists in Canada, but he said Toronto or Vancouver were the best (and only) places..I kind of already sensed that, but the problem is Ottawa is so cheap and my cousin lives there, but there is literally nothing going on in Immunology in Ottawa…it’s a hard call…if I have to make it right now, it would depend on what Noah’s godfather could buy…Ottawa is so much cheaper…

(Hopefully I’ll just get this business off the ground then it won’t even matter cuz I’ll be here for the long haul anyway 🙂

Thanks again for everything. I frustrated him a little because I couldn’t get all my details straight (I couldn’t sleep all night cuz I was so nervous I’d oversleep and miss the appointment…so I was a little loopy…),

but Dr. Butte definitely got the message that there is something seriously wrong and he seems like he’s going to make a genuine attempt to get to the bottom of everything…

All that’s all I ever wish from a doctor, ever, my entire life—to try their best—god knows I don’t expect the answer (even though I keep hoping), I’m just grateful for the effort 🙂

Hopefully, this will save Noah from a lot of the suffering me and the rest of my paternal family tree endured for years—hopefully Noah will get fixed in time so he can lead a normal life, then can do great things with his brilliance besides spending his life chasing down experts 🙂

Thanks again for everything—

Tara 🙂

Begin forwarded message:

From: Tara Leigh
Date: January 8, 2018 at 10:49:28 AM PST
Subject: Dr. Butte is amazing 🙂

Dr. Kachru,

Dr. Butte is amazing. I was so nervous about this appointment I ended up staying up all night (so I was a little frazzled when I was talking with him…’um yea, had that, and that, ugh, forgot that detail’ 🙄), but thankfully he could see through the madness and got the message that there’s some kind of underlying major dysfunction.

The main point I wanted him to understand, is that Noah’s medical story isn’t as severe as mine so far—*however*—Noah’s story echos exactly what I went through in early childhood, but Noah has always been a few degrees *worse* than me—

(For example, I had a lot of sinus infections and uti’s growing up as a child, but never to the point I had be on daily antibiotics like Noah, and I’ve also always had chronic constipation my entire life, but never to the point I was hospitalized like Noah or had to take daily Miralax like Noah—)

Everything is a little shade darker…hence why I’m really hoping to get the answer…maybe we can save Noah before the worst of the storm even begins 🙂


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The more I read on that colectomy group on Facebook, the more I think doctors really don’t understan d the complications that can occur from that surgery….

This poor patient posted today about all of the problems she’s having with her pcp and ER doctors in general, it reminded me of what life was like for me ten years ago so this is what I posted…

It’s not easy learning how to best communicate with physicians (and this is something I’m still working on myself…), but I’ve learned a lot of important lessons the hard way, that’s for sure…


The reason you’re having problems with your pcp and the local hospital is because they’re scared. You need to try and find a local GI doctor who is willing to take you on—try to find the nerdy kid who really loves medicine—those are the best chances when you’re having strange problems. In the meantime, when you talk to your pcp and the local hospital, try to keep it distinct and limit how much you talk about your overall medical problems, meaning keep your dialogue with them specific to the moment.

For example, “I’m having severe constipation which started two days ago, and now my pain level is much worse”, or, “there’s a new pain in my lower right abdomen that started this morning and gets worse when I move like this”.

Doctors say they want the entire medical history, but really they don’t. They just want to know what brought you to see them in that moment, and you want to be assessed if your current problem is an emergency or not.

Most doctors are not fully educated on the complexity of all of the various complications that can occur from any kind of digestive system surgery (that’s why specialists are so important 🙂, so try to keep your conversations with any ER doctor specific to what’s going on with you in that moment that’s *new* or different. All they can do is order imaging studies and bloodwork, that’s pretty much it, and that’s what you want them to do anyway. Use as much medical lingo as you can too. It helps to speak their language back to them with a cool and calm voice…it helps them process the information as well.

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Child dies of complications from the flu

The flu is really bad this year…I was really really scared for about 24 hours when Noah was sick and in the hospital. I’m so used to having the more serious health problems, it hadn’t ever occurred to me that I could lose him…

(I’m so focused on the idea that they will solve it and Noah will have a normal life, I don’t even know what I would do if he died of an infection before we got the answer. I would never forgive myself.)

The good thing that came out of it, was that Noah’s flu inspired me to get back on the horse and do whatever we can do to try and solve this and get the answer. Noah would start feeling a little bit better with some IVIg (and it definitely would help him gain some weight—IVIg is actually an off label use for anorexia—), given how sick he was last week, it made me start to really think about it…maybe just a low dose…

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I keep having dreams there’s no hope

I keep having dreams there’s no hope. First dream (a few weeks ago), you told me never to mention his name again in your office (I was too embarrassed to talk about it.) The second dream (just a few minutes ago—I just drifted to sleep and then had this super vivid dream—),

I was pleading my case to wife (Jodie—weird I know—), I was trying to explain how rare my case is and how there simply isn’t another doctor who is willing to help me get the answer (and god knows I’ve tried to find one).

In the dream she listened with a ‘I don’t like you and I ‘don’t have time for this’ kind of face, but I felt she had a tinge of compassion even though she didn’t want to give me any.

This is what I took away from the dream: even if I’m right, and once upon a time he did care, and once upon he did think about me—and in the dream I even pointed out the phone call in 2011–

but what I got from the dream is that his entire inner circle doesn’t want him to help me, so even if let’s say he thinks about it from time to time, that wall is too strong.

They didn’t go to medical school, so they definitely don’t care about weird cases and they sure as fuck cant understand why there isn’t there isn’t another doctor because unless you’ve lived with a rare disorder, there is no way to understand the hell patients like me go through and how rare it is to find any doctor willing to help us.

So such that it is…

And even weirder about this dream? Peter said I was asleep for only a few minutes. I think the same episode of Blue Bloods was even still on (my new favorite show), but the dream was so clear…felt like an hour…

I pleaded my situation…my son…”will you please talk to him on my behalf?? Please?’

And such as it is.

You know I’m not going to live through this neck infection. Dr. Pitchon is starting to think the infection is gone (he didn’t say it but that’s what I’m sensing), but he’s wrong— it’s still there.

What that tells me, is that it means if all of Dr. Pitchon’s years of experience tells him that this infection should be gone by now — and I know for sure that it isn’t —

That means this is the one.

That’s why im so desperate to try and get this business set up for Noah as fast as I can…trying to get the framework built, so Noah can come home from school, make products, send them to Amazon, etc…the hard part is getting it all started…

Perhaps the dream was my last plea too. Perhaps the dream was just there to remind me his life is so different from mine sometimes I forget a strong support system is a double edged sword…you have to make decisions to make them happy too…since I’ve never really had that kind of family support, I often forget there’s that side of it too…

Thanks for everything.


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28 December, 2017 05:47

Rita Kachru

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“Are you sure you’re qualified to do this?”

I just changed Noah’s saline bag in the middle of the night, and as I was doing it, he woke up in daze and asked me,

“Are you sure you’re qualified to do this?”

Well, um, considering I’ve done changed bags to IV tubing and connected over a thousand times on myself, I’m not sure what more I’d need to do to become more qualified (I even wore gloves, wiped the IV entrance with an alcohol pad, etc—),

but Noah’s right in some ways—

It’s scary to do it on your own child—I must have checked ten times everything over before connecting it all back together, even though I could’ve probably done it in my sleep—

But it’s just not the same when you’re doing it for someone else—especially you’re own child—

Since I was up (I’m starting to get a bad headache—might be coming down with Noah’s flu 🤢),

so I decided it was best to keep the drip going on him, and I figured it was about done and i was right (there was less than 100c in the bag he had hanging). If Noah wasn’t so underweight I wouldn’t be so nervous, but because he’s so skinny I don’t want him to be without continuous fluids until he’s past the worst of the flu…

(It’s not dripping super fast, just 60cc/hour, but enough to keep him hydrated for sure—)

His cough was bad again tonight. It finally subsided after he felt asleep, but he couldn’t stop coughing. He insisted he didn’t want me in his room with him, so we compromised by keeping his door open, and I could hear his coughing from my bed.

Since he threw up the Tamiflu, Noah wanted to me to call a doctor and ask them about a different antiviral, but it was late Christmas Eve and I thought the worst was over and he just needs to ride it out now anyway. I told him he could take the Tamiflu again but just eat first this time, but you know Noah—no way he wanted to take it again—

So we had to have a little talk about when to bug your doctors//picking and choosing your battles. (I admit I’ve terrible about this myself sometimes :),

but Noah should learn from the mistakes I’ve made, and google sometimes is everyone’s friend 🙂

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