Lizzie's Journey

Tuesday, June 16, 2009

Immunology Testing

So yesterday was our first visit with immunology. We're not convinced that Lizzie has an immunity problem, but the doctors have decided that we need to rule out immunity issues before moving forward. She technically meets the requirements to be at significant risk for Primary Immunity Defficiency (PID), which include multiple infections, resistant infections that have required hospitalization (as well as 2 pic lines) and recurrent chronic thrush.

While all those factors would generally point you in the direction of PID, there are a lot of factors that would lead you the opposite way as well. The big one being that she is growing and developing so well. She's never had failure to thrive and even through all of her surgeries and infections, she has continued to stay in the top 75-80% on the growth charts. Her infections have been well controlled and relatively easy to treat, and her anatomical defects could also be responsible for many of her problems. As for the thrush, I'm at a loss there, but the constant antibiotics for two years could still be playing a role in her yeast problems.

We were unable to see the immunologist that we had hoped for at the Children's Hospital, so we had to settle for an allergy/asthma specialist that also does initial immunity testing. Too be honest, I was a little concerned about not seeing an immunologist, but our peds assured us that he could run the initial testing needed and we could move forward from there. If the tests come back with abnormal results, we can see another doctor if we need to.

So yesterday was the big day, and most of my fears about not seeing an immunologist were validated. :( The nurse started asking a few allergy related questions, and I let her know that allergies were not a significant issue. She was obviously confused so I told her we were there for immunity testing. She simply said, the doctor will be with you in a minute and walked out. A few minutes later, the doctor came in, asked 2-3 questions and began reading the chart....you know the one he has had for a few weeks... the one explaining why we were there. Grrrrrrr....... A few minutes later he says: well lets see if we have what we need to get the blood work done. They asked how I thought she would do for the blood draw, and I explained that she was used to blood draws and that it would really not be an issue for her. Just tell her that the butterfly (needle) would bite and it would hurt for a minute then afterwards she could have a sucker. We've been down this road a time or two ya know?

Well, apparently they were not equipped and seemed uncomfortable, which made me uncomfortable and we decided that we should go to the lab and have it drawn. The doctor agreed and explained that they would take some blood, check for immunity issues and then meet with us in 2 weeks for the results. In other words, I spent an hour for them to tell me NOTHING, ask NOTHING, and do NOTHING. They were completely unprepared despite the referral. All I got was the "she looks really healthy, so I don't expect there to be any problems, so that's good news" comment before we left. Really? Is that your expert opinion? You don't think we've heard that before? We heard it before her first surgery, before her first pic line, her second surgery, her MRI...... the list goes on. What a completely ridiculous thing to say! It's not like we showed up just for fun. We've had two seperate doctors recommend this as our next step.

We finally made it to the lab (late... thanks to terrible directions from the receptionist) and of course Lizzie did great. Not a tear in site. The butterfly bit her, they took 5 viles of blood, she got a sucker. What an amazing little trooper! The nurse was also fabulous!

So now we just wait 2 weeks to see the doctor again. I can hardly wait (yeah, that's sarcasm you're hearing). Maybe he'll have some more wonderful words of wisdom. I hope that he is right, and that everything is fine with her immunity system, but only time will tell. Waiting for these results is not nearly as stressful as some of the others have been, but maybe that's because we're not expecting much from this testing, at least we hope not anyway.

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Monday, March 9, 2009

Can we talk (whine) about yeast?

I'm cross-posting this here and in my "old" blog, so that I don't lose my history when I move the site over.... (just in case you find this twice :P)

Lizzie has really been struggling with yeast infections over the last 6 months or so, and too be honest I’m losing my mind. I just feel so bad for her and so frustrated that I can’t “fix” it. The last few infections started as thrush, and then a few days later she shows signs of a vaginal infection. What toddler (unless breast feeding) gets thrush at almost two?!?! I’m sad to admit it, but this is one of those things that I’m a little less natural minded about. Yeast is no fun, and I just can’t stand to see her uncomfortable ya know? The first sign warrants a call to peds and a Nystatin script. It’s just a battle I can’t win naturally thanks to those pesky antibiotics. But I’m working at changing that. Will I be successful? Who knows, but what can it hurt? I’ll still run for Nystatin, at that first little blister, but it certainly can’t hurt to try and stop it before it gets to that point.

Over the last few months, the yeasties seem to be getting more aggressive. The infections come closer and closer together, and I am starting to see the effects on her health. For one, she is always uncomfortable. How sad is it when “my booty hurts” is one of your kid’s first sentences? LOL Another concern is that her immune system seems to be affected by the constant infections and constant antibiotics. She just seems to always catch one bug after the other.

So what am I going to do other than whine? I’m embarking on a new adventure, and yeah, I said embarking, and I’m calling it an adventure. The goal…. basically overhaul her diet. It’s overwhelming… abnormally overwhelming to me for some unknown reason, but it’s almost Spring and Spring is the time of new beginnings. Not too mention that the garden is calling. It so much easier to eat healthy when you can pick it fresh. It’s the nature of the beast.

Lizzie has pretty much always been on a pretty low sugar diet but now it’s time to do the limbo… how low can we go? Her yeast is obviously worsened by it, but I don’t feel comfortable cutting fruit out of her diet. She’s becoming such a picky eater, and fruit is our fall back guy. When she won’t eat anything else, he saves the day. So the goal will be to eliminate all of the other sugars that we can (without losing our minds in the process) and slowly cut back on the fruit and see if there is any change. Wish me luck. I’m a little more concerned about mutiny from the men in the family than I am Lizzie! The boys like their sugar!

The next step is probiotic consistency. I give her probiotics randomly when I remember, and when we can afford it… which reminds me I should get on line and find a cheaper probiotic! But I digress… I need to be consistent and keep better journals of both the foods that she eats and the probiotics so that I can be more scientific about the results. I mean what is the point of doing it if you can’t figure out if it’s really helping? We were actually told by both peds and uro that probiotics were basically a waste of time and money because the antibiotics will kill off any good bacteria, making it a moot point (is that how you spell moot? Really?). After doing some research on my own, I still feel that if dosed at the right amount, at the right time, there is a chance that it may be beneficial not just with yeast, but also her immunity issues and constipation. So what can it hurt?

As for the yeast issue itself, I was a little surprised to find out that not as many kids deal with yeast issues as I would have thought while on prophylaxis for VUR. Maybe it’s just the people I know LOL, but in most of my “groups” it’s not been a big issue. I think I just assumed that it was pretty common.

My theory (which is worth a hill of beans) is that she has a major yeast overgrowth due to the constant high doses of antibiotics she received that first year (like 10 rounds). We have never been able to eliminate the yeast because it was followed by a constant low dose abx. I’m worried that unless we can find a more natural way to control the yeast, she may be battling it for years to come.

So that is the new project. We’ll see how it goes, and how she tolerates it all (along with the rest of us). We will be making some other adjustments in her diet as we learn more, but for now, high fiber - low sugar seems to be the goal. Sounds yummy huh? I know your just waiting for your dinner invitation….

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Lizzie's Journey

Name: Wen

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