Forgotten Antibiotic Could Save the World From Deadly Superbugs

I guess we can only hope they’ll keep discovering new drugs 🙂

http://www.newsweek.com/antibiotic-deadly-superbugs-793342

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Thank you very much Dr. Crosby :)

Dr. Crosby,

I’ve been reading all of these horrible stories about the flu this year, and I just wanted to thank you for taking Noah’s health seriously when we were in the ER, even though others wanted to dismiss him. After learning more about this H3 flu, I really believe the shot of Rocephin Noah got in the ER as a preventive measure might have saved his life.

I’ve often told Dr. Sherman, sometimes on my case we just have to do things based on instinct—combined with what previous history have taught us about my case—and we may never know ‘for sure’ the answers to some questions, but the victory is that I got to live another day.

(On the morbid side, sometimes I’ve even said ‘if I died it would easily prove I was deathly ill’, but alas the goal is to sound the alarm bells, so that I get medical action and don’t die—and thankfully I’ve been helped many times—and still counting 🙂

I know it was nothing we’ll ever be able to ‘prove’, but I know Noah was the most dramatically sick he’s ever been to date so far, and I strongly believe that shot of Rocephin helped avoid the secondary bacterial infections he was almost guaranteed to get given our immune deficiency, if you hadn’t acted on his behalf. That’s why I’m ready to have him start low dose IVIg…it was a wake up call that playing with infections isn’t a game, and he’s had one too many breakthrough infections this year…I don’t want to wait and it’s double pneumonia and he’s resistant to lots of antibiotics cuz he’s been taking them for years. It’s time to start the IVIg and ease up on the antibiotics…

Thank you…thank you very much. I was just telling Noah he will live a long time, he just needs medical care to do it, and I want to thank you again for being there for him for his first major crisis.

Warmly,
Tara

(‘Major crisis’ meaning it would have been much worse without action—I have no doubt about it. Thank you. 🙂

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25 January, 2018 06:49

http://original.lovetalkfusion.com

Rita Kachru

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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.

Warmly,
Tara

tarabloodresults2010.pdf

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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—

Love,
Tara 🙂

Begin forwarded message:

From: Tara Leigh
Date: January 8, 2018 at 10:49:28 AM PST
To:
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 🙂

Warmly,
Tara

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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…

https://www.yahoo.com/news/san-bernardino-mom-warns-parents-041339682.html

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