Manana Banana

parenthood after dealing with male factor infertility and multiple IVF cycles

• Home

A “Little” Update March 13, 2009

I just wanted to follow up a little on my last post and some of its comments. First of all, I have gone back and deleted a couple of paragraphs. I have been advised/instructed not to blog about a certain issue. I hate, I mean hate, being told to censor myself, but whatever. I’m too exhausted to argue at this point.

If you read my original post (or any of the comments) you’ll know what I am referring to. I will keep you posted in a vague way. I’m just not going to spill my guts on the subject at least until it’s resolved. We haven’t gotten any phone calls or knocks on the door yet, so we’ll just have to wait and see how it plays out. We’ll get though that just like we’ve gotten through everything else.

Ok, onto a couple more points. I did fail to mention that I didn’t have a problem with the attending physician we dealt with during our stay at National Jewish. We didn’t have a horrible experience with everyone there, and it wasn’t everyone who chose not to believe us.

The attending physician never once said that Adam didn’t have an issue with foods. He was the one who suggested the Neocate only trial in combination with the 24 hour pH probe that led us to figure out the whole Neocate thing. We’re grateful for that. Unfortunately we dealt with the physican’s assistants more than him, and they were not helpful at all. Plus, the attending was not present for that last, horrible meeting, so the allergist who we had never met and who had such strong and differing opinions from us took center stage. So, it wasn’t all bad, but it certainly wasn’t all good.

Now, onto my comments about the comments on my last post. First of all, I appreciate everyone’s support more than I can possibly express. This whole process has been so hard. So freaking hard. Your support holds me up.

I will admit that it’s hard to hear people’s opinions when they differ from mine a great deal. However, I am open minded enough to read, listen, and ponder. Now, onto my thoughts.

No, Adam’s issues with foods are not just because he’s been on a limited diet for an extended period of time. We starting giving him solid food at 6 months just like everyone else does. He had problems from day one. And it’s not just an issue of solid foods themselves, he has always reacted to the proteins in my breastmilk, too.

And yes, we’re close to the situation. And yes, we’re more sensitive to it all, but that’s because we’ve lived through what he’s lived through.

I wish I could express what it’s like to watch Adam react to a food. It’s not just him having a bad night. Or him having weird poop one day. It is night and day. If you could have seen what he was like last weekend and then seen what he was like after he did the 24 hours of Neocate only you wouldn’t believe the difference.

It’s so hard to have a child who is so miserable that all he can do is scream. Sunday afternoon we had to just pop him in the car seat and hit the interstate, because it was the only way we could get him to stop melting down. And then by Tuesday afternoon, after we had pulled the barley and applesauce, and let his system calm down on just the Neocate, he was a happy little boy, running around the hospital, laughing and having a great time, even with a darn tube down his nose and throat.

It’s more than just one thing with him. It’s not just that his cheeks flare up so badly they look windburned when he’s reacting and they’re completely clear when he’s not. It’s not just his mood. It’s not just his sleep, or poop, or reflux, or any one thing. We’ve watched time and time again a complete list of symptoms pop up when he’s reacting.

So, yeah, I disagree with the allergist 100%. There is something going on with Adam at a physical level. Cellular mediated intolerances/allergies do exist. They are not something that parents make up. They are mediated by something other than IgE, so they don’t show up on a blood test, but that doesn’t mean they don’t exist.

I will admit that I watch for food reactions more than a parent with a kid who doesn’t have food issues does. That just comes with the territory. I want nothing more for him to succeed with food challenges, though. That has always been my goal for him.

And while I plan to elaborate on the breastfeeding/weaning topic later, I do have a couple of points to make on that subject, too. Yes, I did not want to have to wean Adam. Especially cold turkey like that. I will be the first to admit, though, that I think the switch from breastmilk to Neocate is a very good thing for him.

It’s important for him to have a base nutrition that his body doesn’t react to. There were too many variables with the breastmilk even with me on a very limited diet. And there’s definitely a chance that he was still reacting to something in my breastmilk even after I had eliminated so much. The Neocate gets him to the ever important baseline.

So, while I have grieved, and continue to do so to some degree, over the end of breastfeeding. And while Adam has definitely been going through a transition to a life without nursing, I know that the benefit that the Neocate will provide him is huge. If I could lactate Neocate, I would. Since I can’t, this is the best we can do right now.

Phew. So, that’s that. You can see why I threw those quotes in the title of this post.

So, what now? We added barley back Tuesday evening after Adam was done with the probe. He’s doing ok with that, so onward we go. We’re not adding back the applesauce since that’s the suspect food. We started trialing bananas today, and we’re keeping our fingers crossed. He likes them, and I so hope this will start us out in the right direction.

I really do think we’ll have some successes. I sure hope so. I really think there’s a good chance that there was something left in my diet or something in Adam’s diet (applesauce?) or both that he wasn’t tolerating. We know that if Adam’s reacting to one thing it can appear that he’s reacting to others when he’s really not, like with the Neocate. It’s just his system going haywire. The hope is that’s what was going on and now that we’ve got him a non reactive base of Neocate that things will start looking up. I guess we’ll find out soon enough.

• Posted in : our main man
• Author : amanda

• Feeds

• Full
• Comments