Lizzie's Journey
The waiting game is over,,,,, or so we thought
I never know what to expect with Boo. If anything, I’ve learned to expect the unexpected, but sometimes you’re still blind-sided. It just happens, and today was no exception. We were anticipating excellent test results from Lizzie’s most recent blood work. She’s been infection free for a while, and the initial testing was optimistic. Both of her doctors seemed pretty confident that the results would be good, and we had immunology just about crossed off of our list when… we got the curve ball. Lizzie’s immunoglobulin numbers look good, which is great. Her T cells and B cells are both making cells and responding to some infections, but apparently her T cells are not functioning as well as we had hoped. Once again Lizzie is odd man out. Her T cells are not making any response to Candida, which is highly unusual without the presence of certain conditions (which she doesn’t have). This would explain the thrush and yeast infections, but we still aren’t sure why it would be happening outside of those conditions. Chalk it up to another 2% that Lizzie is a proud member of! Lol! So our first step is to have some more testing done next week to see if we can find some more definitive answers. The last test was done with cells in a petri dish, so this time, they will test her skin directly, and she will receive a “patch” that she has to wear for 3 days. This will test how the cells in her body actually respond to the candida. She will also have yet another blood panel to retest her latest results. After that we will move on to the vaccination titers which I am still not happy about, but I am now at least comfortable doing because I know that they are necessary. So how do I feel about it all? Not really sure yet. On one hand, I’m excited to have a wonderful doctor that listens, explains it all and is willing to look for answers. I can’t say enough about how important that is. I’ve always felt like all of Lizzie’s issues are connected, and I think this is one more step in connecting them all. I truly feel like one day we will find the answer. On the other hand, I’m so frustrated. I’m really tired of taking my baby to be a pin cushion. I’m tired of doctors not having answers. I’ve talked to dozens of doctors, done literally hundreds of hours of research, and I know less now than I did when she was 6 weeks old. I’m tired of my baby being “special”. I’d give anything for her to be boring, dull even…. And then I’m reminded of how blessed I am. I have 2 amazing children, both of whom are happy and very healthy considering. No matter how frustrated I am, that’s a pretty big wake up call. It’s like a dear friend of mine said tonight “You’re entitled to the pity party every now and then, you even deserve it. Just don’t ever let it cloud your blessings”. What encouraging words. I do get tired of being the rock, I won’t lie about that. Sometimes it helps just to say “this sucks”. Cause guess what? It does. It’s not fun to see your little one go through so much. But then you pick yourself up, say a big fat thank you that it’s not worse, and move on. If it ends up being a true immune deficiency, Lizzie will be put on another medication to control it. Not our favorite option, but yeah we’re pretty thankful to have the option. Modern medicine is both amazing and frustrating. My goal? To find a balance between the two. Yeah, God’s definitely determined to teach me patience. Labels: immunity testing, immunology, patienced, t cells, Update
Good News and Good Docs
Today Lizzie saw her new pediatric immunologist, and I'm glad to report that the visit went really well. I never know what to expect from a new doctor, and let's be honest, it doesn't always make for a good day. We've had some initial test results for a while now, with no clear explanation of what they mean. For those of you who know me, you know that it's been driving me nuts!!! Super crazy, so I was really hoping for a good doctor who doesn't mind 1000+ questions. Instead, I got 2 great doctors that welcomed the questions. Thank you Lord for teaching hospitals! lol! The doctors didn't get copies of all the right labs, but if I've learned anything along our journey, it's to be over-prepared... so I had a copy for them. :) They went through the labs with me item by item, and explained what each one meant. The good news, is that because she is growing and developing so well they feel like her immune system just needs some time to "catch-up". She has spent so much time on antibiotics and anti-fungals, that her system is just overworked. We are pretty convinced that this is what is making her T cell numbers low, and not an actual deficiency, but we are doing a few more tests to be sure. Speaking of tests, more good news... I think we made the right decision in waiting to do the vax titers. We are redoing the original labs to see if the numbers are still low, but since she has been off of all medication for 8 weeks now (which also means she has been thrush free for 8 wks! woo-hoo!) we may see a rise in her numbers. They are also doing some kind of test to check the actual function of the T cells. As long as the T cells are functioning well, it doesn't matter if they are lower than normal as long as they are not significantly lower. If this test comes back with good function, than we don't have to do the titers at all, which would mean no extra vax'es. Which makes me one happy momma! So overall great news. It's not definitive and really not anything we hadn't heard, but now I understand it and feel comfortable about where we are going. Sometimes that's just as important as the answer. It certainly takes a lot of the worry out of it. We get the test results in 2 weeks, and hopefully we can take immunology back of the list. This will also mean that we are doctor free until December! You heard me right, NO visits scheduled until December, when we see urology again to discuss the take down of her vesicostomy. It will be a nice break before she starts testing again, and I'd say she deserves it. ;) Labels: antibiotics, immunology, t cells, Update
Round And Round We Go
Today's immunology visit did not go quite as I had expected. I was pretty confident that all the results would come back normal, so when they didn't I was a little blindsided. Too be honest, I'm still not sure what to think, but mostly because no one has told me what any of it means. Unfortunately, due to a scheduling problem, the doctor wasn't even there today. Needless to say, I was seriously annoyed that I had just driven over an hour to discuss test results with a doctor that wasn't even there, but for the sake of being polite, I will keep those thoughts in my head. :) Instead I saw the nurse practitioner, and as nice as she was, she really didn't have many answers about the tests. She showed me the test results, and explained how some of the results came back lower than expected. I expected there to be one or two items off, but was surprised when there a quite a few low numbers, some of them significant and some only slightly lowered, with about 25% of the numbers below normal - which also means 75% were normal... :) see that silver lining? lol Apparently low is better than high, which is good, but I still don't know what it means, and she either didn't know, or didn't want to discuss it with me since she wasn't our doctor. She called the doctor who said that he did want to see us, and that we needed to do some additional lab work. He had mentioned from the beginning that we might be doing more testing, so I'm not sure if it is because of the results or in addition to them. After she spoke again with the doctor, she said he wanted to run some new blood work today to test her titers, then give her 2 vaccines, and re-test her titers after 2 weeks. We worked out a compromise so that we would do labs today, and then I could have her pediatrician give her the vax'es on Thurs. Then we would come back for test results and re-testing in 2 weeks. This way, I have some time to research, and it also gives me a chance to discuss it with my pediatrician before we make a decision. We also see our urologist Thurs morning, which is a bonus, so I can discuss it with him as well. As many of you know, I am not a huge fan of vaccines, and because of Lizzie's constant illnesses the first year, we are on a delayed vaccination schedule. So you can imagine my lack of enthusiasm for this method of testing. I will absolutely do it if it needs to be done, but I can't take the word of one doctor that I can't even get in to see... if you know what I mean. I need to know what giving a vaccine to her if she is immunocompromised might mean. I need to at the very least understand it, and at the most just be ok with it. So now it is time for lots of research, and time is a big factor... which stinks. I hate to be rushed. If any of you have done any medical research online, you know that Dr. Google is full of gloom and doom, and you have to be careful how much you read. It takes time to navigate through it all without being totally overwhelmed, especially when you are as clueless about a subject as I am this one. I just didn't expect to be here. And now that I am, I have some catching up to do. At this point, we really know nothing. We don't know what the tests mean, or how concerned we should be about them. She's only 2, so her immune system is still developing and may still make some adjustments (especially now that we are off the abx) or we could be facing something more serious. We just don't know right now, and man that is hard. I think that is always the hardest part for me.... the not knowing. My imagination is sometimes much harder to live with than the truth. I long for the day that we can say X is what is wrong with Lizzie, but I also have a lot of fear about what X will be or what it will mean for her future. The good news is that she is still growing and developing well, and that gives me all the hope in the world. She is a healthy, happy little girl, so I still feel really confident that in the end this will come out with positive results. Maybe it is just God's way of teaching me a little patience ;) Labels: immunity testing, immunology, Update
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. Labels: immunity testing, immunology, infection, thrush, vur
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Lizzie's Journey
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