Writing it all down to get it all out

SO! More adventures in the land of Leo. If you follow me on Twitter, you can probably skip most of this. It’s just more of the venting. And maybe slightly more explanation than I give in 140 characters. Times a thousand, since that’s roughly how many tweets I spew out after each and every doctor’s appointment. But! Spoiler?

I am done trying to figure this out with the doctors. Just … I’m done. I mean, unless it gets really really really bad again. (OMG PLEASE DO NOT GET REALLY REALLY REALLY BAD AGAIN.) They are providing none help. Every improvement we’ve seen in Leo has been by MY research and experimentation. I feel like a gigantic wang for saying that, but it’s seriously true.

Well, either that, or he has slowly slowly healed over time and I had nothing to do with it. But I wouldn’t suggest suggesting that to me, because I’m cranky. All I eat is oatmeal and tears. And not even tears anymore, because who knows what’s in those. Probably fluoride.

Anyway.

HAHAHAHA. I just typed up the whole story! Over 1000 words’ worth! Then I tried to read it back, and I just couldn’t. Maybe I just needed to write it all out beginning to end or something? Closure? Who knows. What I DO know is that none of you needed to read that. Well, maybe some other woman who is googling around the whole internet trying to figure out what’s going on with her baby might need to read it, but I already deleted, so I AM SO SORRY CRAZY LADY. If you come over to my house I will tell you the whole story and make you a nice pot of water and peas or something. Maybe we’ll add salt if we’re feeling fancy.

I’m just so ready for this to be over, you guys. This has been the most frustrating and drawn-out experience of my life. I honestly and truly cannot think about other things! Well, when he’s doing badly. When he’s doing WELL, I’m all LA LA LA WE HAVE FINALLY FIXED THE PROBLEM!

You should see my reaction when he next has a bad diaper. Oh, it is not pretty, you guys. It is not pretty at all. And then I do the super healthy thing and take it out on everyone around me.

But we’ve been sans (visible, anyway) blood in the diapers for over three days now. I added back a few vegetables that should be low enough in the salicylates for him to tolerate them. I might start some digestive enzymes soon to see if that helps him at all. I don’t suspect we’ve seen the last of the blood, but I do know what I have to eat to make it go away again. I figure I’ll keep pushing the boundaries of what I can eat and maybe by New Year’s I’ll be able to eat something crazy! Like plain chicken!

I just know I’m done going to doctors and saying, “I’m pretty sure I’ve figured out what is irritating him and I’ve stopped eating it and now he is doing better. Do you think he will outgrow this?” only to have them tell me they’ve never HEARD of what I’m telling them is going on.

Look, I will admit, I don’t think he has a TRUE salicylate sensitivity. I think salicylates irritate the GI tract, and I was ingesting dairy and soy and whatever the actual allergen was that initially caused the allergic colitis, and then we loaded him up on salicylate-laden ranitidine syrup (peppermint flavoring? salicylate PARADE) and it did a bunch of damage. Damage that has slowly but surely begun to heal over the last two months. I think removing those irritating foods from my diet has done him WORLDS of good. I’m not trying to diagnose him with some rare, ridiculous, zebras-not-horses disorder. Mostly I’m telling the doctors this because I think there’s a chance it MIGHT help other women breastfeeding babies with allergic colitis. Hey! Look into food chemicals! They might be continuing the irritation!

Really. That’s ALL.

But instead, they just tell me they’ve never heard of it. Then they forget about us the second we walk out the door. And then another woman walks in with the same problem, and no one can tell her what is wrong, because that thing they’ve never heard of? THEY WOULD HAVE JUST HEARD OF IT IF THEY HAD BEEN LISTENING.

(I’d like to add that our general pediatrician DOES think I’m onto something. Or else he is just familiar with my brand of crazy and knows I won’t shut up about this and is nodding along politely. I don’t really care which it is, I WILL TAKE IT.)

I don’t even know where I’m going with any of this. I guess I needed to get it all out. Put it out there on the internet, however NOT SUCCINCT it may be, just in case. My little ribbon on the internet for salicylate sensitivity awareness.

I do want to thank each and every one of you who has listened to me vent about this, either over Twitter, or IM, or the phone, or email, or in person — you have all held me up through this, and I would have crashed and burned long ago without the encouragement you’ve given me. I KNOW it is all I ever talk about anymore, and I cannot wait for the day this is just some awful, awful memory that I can look back on and through the fog of hindsight can determine I was probably overreacting and overthinking and overdoing and overtrying and overeverything. Ing.

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18 Comments

Filed under Little lion man, Motherhood uncensored, Probably too serious

18 responses to “Writing it all down to get it all out

  1. Diane, you poor poor poor poor poor poor thing. Hang in there. You are AMAZING.

    • Ditto, ditto, ditto.

      WIth your analytical ability and research skills, Diane, you probably know more at this point than any physician with whom you’re dealing. They spend (and I am not kidding) about 2 days in medical school dealing with nutrition.

      But you? A total, total rockstar.

      • And I completely understand that, you know? Like, I get that they aren’t going to know about every weird thing that walks in their office door. I just feel like, if you get a kid for whom the regular course of action is not working, MAYBE you might do a little research? Instead of just continuing to tell the mother it is probably the dairy in her diet?

        Or. OR. Okay, they don’t have time to do all that. They are overworked and the medical system is broken. I get that, too. But then they need to have some respect for the parents who pick up the slack and do that research. I think it has to be frustrating to be a doctor nowadays. When our parents took us to the pediatrician, they just mostly did what the doctor said. If this were happening with Leo in 1983, like it happened with my little brother, there would have been no internet and virtually no way for me to do more than accept elemental formula and the doctor’s explanation. So it must be OBNOXIOUS having people come in there all haughty with information they scrounged up on the INTERNET. But! Every once in a blue moon, I think we get it right.

        Sorry! I’m ranting right at the choir, aren’t I? Thank you so much for the vote of confidence!

    • When this is all over, I am stalking you and your amazing ice cream parlor. Oh, and smooshing your new little baby. NEW BABY SO SOON.

  2. I don’t know how you’re doing this. I often think of you when I’m nursing my baby. Stress eating is pretty much the only thing getting me through this two-kids-and-a-job slog. You’re amazing!

    • Thank you, Jessica! I miss the stress eating. I guess I don’t miss the 25lbs. I’ve lost, though. So that’s the only silver lining I’ve found. This has certainly made me forget that snacking is an option. If I’m hungry between meals? OH WELL SO SAD FOR ME. I’d like to think this will be a permanent overhauling of my eating habits and terrible relationship with food (it is comfort! so comforting!) but I know as soon as this is over I will be eating everything in sight. I think about pizza no less than eight hundred thousand times a day.

  3. I’ve told you before he’s lucky to have you. And I know you went through things like this before but seriously, imagine if it were this bad and you were a first time mom having a hard time trusting your instincts? I can’t even imagine.

    You’re an amazing mama Diane and dammit I wish I could hug you (and hold the baby because really, let’s be honest.)

  4. You totally impress me! I’m not sure I would be able to live on such a simple diet, even though I’m such a huge breastfeeding advocate.

    Also, Eloise recently seemed to be lactose intolerant and it took nearly a month – 6 weeks of no dairy for her bowels to get back to normal, and that is an 18 month old who has a much more developed GI track, so you might be on to something!

    Hope this continues to improve!

    • People keep telling me they couldn’t do what I’m doing, but they could! And you could, I know you could and you WOULD if it were the best thing for your baby.

      Thank you for the info about Eloise! I’m certain that he is just being incredibly slow to heal. And honestly, it may just be that the low-sal diet started right around 6 weeks after we stopped the Demon Zantac. I’ll know more as I start adding things back. Most likely, we’ll never really know for sure. He’ll probably outgrow (oh please oh please) a lot of this. Now that I look back, both my girls got fussy on bizarre foods that weren’t really ALLERGENS. Like, with Isla, if I ate almonds, she got really gassy and fussy, but I could eat some other nuts just fine. With Violet, I couldn’t drink soda, even non-caffeinated. All the things they reacted to were high in salicylates. Did they have salicylate sensitivity? No, but I just think high-sal things are far more irritating.

      ANYWAY. TANGENT THERE. Thank you for telling me about Eloise, because that confirms for me that this is going to be a Process. I do hope she’s feeling better!

  5. Michelle

    Hi, I haven’t read your entire story because this entry was linked on twitter, but I just wanted to tell you that my son was having bad diapers (you know) starting at 2 months and I tried everything – dairy, soy, nut free, etc. Nothing helped. It was so frustrating! We went away for a weekend trip right before our GI appointment and all of the sudden, it was getting better. WTF right? Well…I wasn’t drinking flavored water. Up until then I had been CHUGGING water flavored with MiO. And guess what? My son can’t tolerate the chemicals that are in the MiO. So…what I’m trying to say is, chemicals DO cause an issue – my LC had never heard of it, the ped and GI were both mystified, but once I stopped anything with food coloring and those kinds of chemicals in it, he was fine. So rock on with your bad self, you are doing an amazing job for your kid being an advocate and doing what you know is right!

    • Oh my gosh, thank you thank you THANK YOU. I can’t even tell you how great it is to hear from another person who experienced something similar. I mean, I’m SO SORRY you went through it, but I feel a little bit less like a crazy person just knowing, you know?

      Can I ask how old he is now and if he has any problems with food?

  6. Jen

    oh girl. I cannot even imagine. You are a rockstar for sticking up for your baby and yourself- doctors be damned. They don’t know everything, that is a fact. I hope things continue to improve and that soon- VERY SOON!!- this is all just a memory. oof.

  7. Can I please reach through the internet and hug you??? I had no idea this was going on because I am a bad twitter and IM friend these days. I’m totally sending you loads of love and support. And screw general medicine. YOU know what is and isn’t working for little man. 😦 Love you TONS.

    • You are NOT a bad ANYTHING, Colleen! You are a busy lady, and I know you would have been there in a second if called upon. Thank you for checking in and for the support and hugs. I love you, too!

      • You are just an amazing kind of awesomeness. Seriously D – you keep doing what you need to be doing for Leo. And write about it. GET IT OUT. This post will help another mother in the future. She’ll be up late one night searching the interwebz for help and she’ll find you. Until then, tell me what I can do FOR YOU?

  8. Baby(food)Steps

    I sooo feel your pain… my baby (now almost 3) is still severely intolerant to salicylates… she is now being evaluated for mitochondrial disease… I think the 2 are related…. where did you find a Dr. to diagnosis the salicylate sensitivity– I have been looking for one!
    http://babyfoodsteps.wordpress.com/2011/07/25/s-is-for-salicylate/