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Oct 25 2008

Not a unicorn, but a gnome. Damned gnome.

Well, despite the fact I was told I wouldn’t get the results of A’s endoscopy for two weeks, I now have the results of A’s endoscopy. Got them on Thursday afternoon, as I was driving back from a quick 24 hour trip to Nebraska. The height of fun is getting a call from your son’s doctor on your cell phone while you’re zipping through northeast Colorado (which, if you’re not familiar, greatly resembles the surface of the moon. But less scenic. And with poorer cell phone coverage.). So I was trying to have a medical conversation, on a phone that kept cutting out, with two other people in the car.

You know, I’m just gonna cut to the chase here. I’m angry. I’m angry and I’m sad and Mama Bear has fucking had it. I’m starting to tear up again. Thankfully I’ve stuck the boys in their rooms for naps; A, according to him, was up at 2:22 am this morning and never went back to sleep. Seven years. Seven years I have somehow known that there is something about A that defied description. And so we’ve seen doctors and OTs and therapists and have spent untold hours and money trying to help him. And I feel like I am the one feeling my way through the dark. Tom is there with me, but I’m the one leading. No doctor has taken my hand and said, “Jen, I agree, there’s something going on and I’m going to help you. Follow me, we’ll do this together.” Instead, I’ve been flying blind, consulting Dr. Google and following one thing to another to another, trying to figure out what.the.hell. is up with my son. I’ve been referred from one doctor to the next, and all of them have been trying to treat the symptoms, not the cause. And that has been the whole problem.

A doesn’t have celiac, as I suspected. That’s cause for relief I suppose. But the endoscopy and biopsies indicated that he has eosinophilic esophagitis. Yeah, try saying that three times fast! From what I’ve been able to learn, it’s a food allergy in which the esophagus becomes irritated and swollen. And, in talking to the doctor while on the surface of the moon driving through northeast Colorado, I learned that there’s no cause. I learned that from him because I specifically asked what causes this. Right. It’s a food allergy reaction, kids. The whole point behind the endoscopy was to find the cause behind what’s causing the issues. And, instead, the doctor wants to just treat the symptoms. Again. He even said that the protocol used to be to do a skin allergy test, but we’ll just skip that and go straight to treatment. And I went along with it, because that’s what ya do.

And then last night I went to the birthday party of a very dear friend of mine. Our boys are all about the same age and temperament, so they get along….and she and I share a deep need appreciation of red wine. Another friend of ours was there as well and she and I got to talking. I mentioned in passing that A had had an endoscopy and there was something funky with his esophagus, and she rattled EE right off. Her son has it, but they caught it several months ago, when he was still a toddler. And she shared with me the name of her son’s doctor, who is a specialist in EE here in Denver. One of the best, she tells me. And his is a team approach: nutritionists, allergists, pediatric gastroenterologists, all working in tandem.

Hope.

I consulted Dr. Google again this morning, reading everything I could about EE. A doesn’t have any of the overt symptoms, this was just caught because of the endoscopy/biopsies taken, looking for something else. And then this phrase jumped up and bit me in my memory banks:

Infants with EE don’t want to breastfeed or take a bottle, and may frequently spit up and arch the back, a sign of pain.

This.Was.A. And I had to hide from the boys and cry. I sobbed, apologizing to baby A, that I didn’t do enough to help him as an infant. That I allowed colic to be the answer, that I accepted that he was low on the growth chart, that I wasn’t insistent enough with doctors to get answers sooner. I sobbed, apologizing to myself of seven years ago, that it wasn’t me, it wasn’t that my body couldn’t nurse. And all the overwhelming emotions of having a newborn who wouldn’t nurse, who wouldn’t sleep, who cried inconsolably, came flooding back and drowned me.

First thing Monday I’m calling the EE specialist. I’m not going through with the prescription A’s gastro doctor gave him at this time. I’m doing something unusual for me: getting a second opinion. And we are going to treat the goddamned cause this time, not just the symptoms. If that means everyone in the house has to drop entire food groups, then so be it. If it means I have to close my business (because it’s home-based and involves food with common allergens), then so be it. I’m done. My poor son has suffered long enough. Long enough to not realize that it shouldn’t be this way. Mama Bear is going to cry some more this weekend, then put on her big girl panties and get over it.

And a note about privacy. When I first started this blog nearly 3 years ago, I began writing for the sense of community. And through blogging, I’ve met so many other women with challenging children. We support one another, cry with one another, cheer with one another. And I never would have known about them if I hadn’t shared my story, my son’s story. When you have a challenging child (and in my case, a challenging gifted child), you feel very very alone. Finding others in similar situations is soul-saving. This is why I’ve shared so much of my journey here. Somewhere there may be a mom at the end of her rope who consults Dr. Google and finds this post. And feels less alone. And has a new path to explore, one that may actually have an answer at the end of it. So while I do have my son’s privacy in mind, and will protect it with every bit of my being, I do know that extending a helping hand can do more for a mom than anything else.

That said, I should probably go call my mom and fill her in on all this before she reads it here and freaks out.

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  1. karen (Pediascribe)

    Glad you have an answer and a doctor to turn too. (((hugs))) I, too, have experienced loads of mama-guilt. It’s never a good feeling.

  2. Cathy

    Wow–I so hear you on this post. I’m so, so glad you’ve found a way to treat your son’s condition. It’s like a major, frickin miricle when you can finally figure out WTF to do to help your son!! And I understand the privacy issue too–I don’t want to ruin my son’s life via my blog, but then again, it’s so great when you can meet others going through the same thing. Hany in there!!

  3. Dawn on MDI

    I have some news for you – you are not expected (by ANYONE but yourself) to know every obscure medical ailment that might befall infants. Children do not come with directions or instructions. And when they are wee and small, they don’t have words to tell their adults what is wrong. We all do the best we can, make educated guesses, and occasionally mistakes. We overlook things that have happened all along because, well, they have always happened. You are not at fault for A’s not feeling well. You have advocated for him to his pediatrician and a phalanx of others, and now you have found a resource that sounds promising. Good. For all of you.

    Be angry if you like now, but not at yourself. Be angry at the doctors who don’t listen. Be angry at the doctors who treat symptoms instead of causes. Be angry at them because they are lazy or stupid or they don’t know and are too proud to admit it and refer you to someone who might. Their egos have interfered with your child’s health, and truly, his childhood. Yell at them if you like, but give yourself a break.

    You are a young mom, doing the best she knows how without multiple advanced degrees (I’m guessing here) in child development, pediatrics, and gastro-intestinal disorders affecting children. You’re a mom. With gut instincts that (male) doctors have been ignoring for centuries. Trust your gut. Keep plugging. And when you get to the other side of this, sit back, put your feet up, pat yourself on the back and watch A play in the yard with his brother and friends.

    And know that even childless people can tell a good parent from two thousand miles away and through a computer.

  4. melissaz

    Good for you on getting that second opinion. I’ve been there and I know how hard it can be to find answers about your kids.

    Hang in there and best of luck!

  5. Robin

    I’m sorry. It’s really hard to get news like that about your child.

    You know, I’d never heard of EE – until last week, when one friend announced that her two year old was just diagnosed with it – and the other friend announced that her HUSBAND had just been diagnosed with an incredibly severe case. It took them until he was in his FORTIES to figure it out, and even then only because of an injury that landed him in the ER. Sigh…

    No one gives enough credit to a mother’s intuition. No one.

    Give A a big hug from me, get that second opinion, and then take a deep breath and a big glass of wine. After that, you and the doctor can TOGETHER figure out what is the best way forward for A.

    ((hug))

  6. Lisa

    {{{hugs}}}
    Dawn pretty much said everything I wanted to say (thanks, Dawn!) so I’ll just send hugs!

  7. Mama Zen

    Oh, honey, I’m crying for you! Don’t crucify yourself for what you didn’t know. Apparently, the doctors didn’t even know!

    I’m so glad you were able to find an option that gives you some hope. Let us know how it goes.

  8. G

    My nephew used to vomit uncontrollably as an infant – especially after eating, and when he was growing up he would often cough and spit up while eating. Their solution to the coughing was “take a drink of your milk!” and it wasn’t until he was 10 that they finally found out that he was allergic to dairy! He had even been tested for food allergies but for some reason it didn’t show up positive until he was 10. Now it’s been 2 years since he stopped drinking milk and he doesn’t cough or spit up anymore. Talk about guilt!!!

  9. RC

    I understand the anger at yourself, but you have to direct it at the cause and not at yourself. Little Dude was in misery his first six months. That is why he didn’t sleep and why he spit up all of the time. That is why we couldn’t set him down.

    Nobody thought of the dairy allergy, since children who are breastfed “shouldn’t get the dairy allergy.” Aak.

    Good luck and I hope this new team of doctors is able to get you moving in the right direction to help your son. I know we’ve had to use Dr. Google a lot to figure out the true scope of the dairy protein allergy, and we still occasionally mess things up, but yes, this is why I put everything I can out there, besides as a way to scrapbook – I’ve relied heavily on the advice and experiences of other folks, other moms, so if someone needs help and my blog provides them with comfort that they aren’t the only one, then I’m glad to have done it.

  10. michelle

    wow girl! I wish I could say something to make you feel better besides “I understand how you feel”. But that’s all I can think of. I wish an abundance of energy on you to keep going forward. I know it is tiring and frustrating. Mine was 10 before we found the “cause” to our issues and even then, so much damage had been done that it is hard not to beat up on yourself. But try not to go there. He’s a tough little guy if he’s anything like you! And you are right about sharing your story…I know one person for sure that this can benefit. I’m going to mention the “EE” to them.

  11. mrsvierkant

    (((Hugs))) “If onlys” the root of many tears for many moms. My thoughts are with you.

  12. denise@EatPlayLove

    Wow, amazing how the universe works. I hope the new team of specialists help you through this.

  13. cursingmama

    So glad you finally have an answer – or at least a path.
    Good Luck –

  14. Jamie

    I’m sorry. Sorry for the pain, anger, regret, loss of time, etc. Just sorry. It’s so hard.

  15. Christina Shaver

    I feel your pain. All parts of it. You know that. And if you need anything, I’m here.

    Good luck with your specialist. Lucky that you found someone who could make a recommendation.

    Please keep us posted. I’m sure you will.

  16. jennie

    I have a love hate relationship with dr. google, but the mom guilt is just horrible. one day at a time….

  17. Heather

    Thanks for sharing your story. I know someone out there will find it and it will help them. I know the online community can be wonderfully helpful, but I’m so glad you found a person face-to-face that is obviously going to be a great source of support and information for you.

  1. Thursday Thirteen: Things I’m going to do today « Never A Dull Moment

    […] going to work on the unholy amount of paperwork involved in A’s appointment with the eosinophilic esophagitis clinic. Seriously, it’s […]

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    […] them to enjoy, before they think they’re too cool to enjoy them. A has his appointment at the EE clinic on Tuesday, so I’ll be freaking out sorting through all the info from that. I’m playing […]

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