Anyway, we had two pretty important Doctor's appts, which I'll talk about in a minute, and lots of follow ups. Most of the follow ups, consisted of going to the Doctor weekly to check her kidneys. (She became really good at going potty on her potty chair, which will hopefully make potty training easier.) Now we are down to only monthly, and have only two more times to go and her kidneys (thankfully) seem to be unaffected by the purpura. (The nice thing about it is that I have almost all the girls caught up on well child check-ups and vaccines. When we switched to monthly, I started taking another sister with me each time. )
Her first important Doctor's appt. was the allergist. They pricked her back 9 times, testing for allergens. The first prick was a negative control (aka nothing.) The second was positive control. The other things they tested her for were: two kinds of dust mites, cow's milk, soy, nuts, strawberries, and bananas. Everything reacted, including the negative control, which was strange. And to be honest, we didn't really get any clear answers. They pretty much told us that she wasn't really allergic to anything, but she was kind of allergic to everything. Um... okay? They said we should just be careful when reintroducing these foods back into her diet. Apparently, the nuts reaction was the worst. I later read that skin prick allergy testing is not very accurate, especially not in children under 2. It almost felt like a waste, as it doesn't even prove that they won't have a very serious reaction later.
I continued to watch her diet with these (and other) foods. Here is what I have discovered. She isn't allergic to strawberries, bananas, or peanut butter. The foods she has reacted to are: soy, cow's milk, fish, shellfish, and nuts. So far, none of the reactions have been serious, thank goodness!! The reaction to soy was to soy milk, which caused her severe bloating and sulfur burps. The reaction to fish and shellfish was a few hives, which was also the reaction to nuts. With cow's milk, it seems as if she only reacts when she has it in large amounts. She seems to tolerate cheese, yogurt, sour cream, etc. However, being 1, she drinks a lot of milk, so whenever I put her back on the cow's milk, she has a reaction. After being hive free for about a month or two (while still eating cheese, yogurt, and such), I tried cow's milk again. Then she developed a terrible cough. Just to be safe, I pulled her back off the milk and it went away. I'm not sure if that was a reaction or just a coincidence, however, I plan to try again in a few months. For now, she drinks rice milk but eats regular cheese and other cow's milk products and seems to be okay with those. I haven't given her any fish, shellfish, nuts, or soy milk lately, as these are all pretty easy things to avoid with a one year old. She will most likely out grow any allergies that she might have.
In the middle of all this, I had a really nice heart to heart with my pediatrician. She actually had the day off for a funeral, however, came in to talk to me. We talked for 45 minutes!! It meant a lot to me. I told her exactly how I felt about the whole thing- the things that frustrated me with how she handled things and the things I appreciated that she did. I cried, of course, but it made me feel a lot better. I also asked for an EpiPen, which she gladly gave me. (We now have a EpiPen set, which includes 2 EpiPens and a trainer, for practice.) It made me feel so much better, and at ease, to have it, just in case.
The second important appt. we had, was to go to Seattle Children's Hospital. We went up to see a Pediatric Endocrinologist and a Pediatric Orthopedic Doctor (they were both really great!). The first thing they did was bone scans (x-rays) on her entire body. When we went to see the Doctors, they said they couldn't find any other breaks on her body, which meant that we could rule out all bone diseases that would affect the rest of her life. They went on to say that they thought it was all related to just how low her Vitamin D was. And that they expected her to make a full recovery from all of her problems. I can't even begin to explain how amazing it was to hear that! Both Grant and I felt such relief!! In fact, it made me cry all over again. Afterward, Calyssa had to have some more blood drawn. Only this time, they got it on the very first try!! It was awesome! She barely even cried!! How nice! (The blood results showed that her Vitamin D was up to 23, which still isn't good enough, but is slowly getting better. The very bottom range of normal is 30 and I think it can even go up to 100. So they uped her dose to 1000 iu's. And told us that 15-20 minutes in the sun can give her 10,000-20,000 iu's! Also, she was anemic again! Ahh! So we have to really be on top of the iron supplements every day.)
I have to say that it was very surreal for me to be up there, at Seattle Children's Hospital, and to see all the families who are all too familiar with the routine of it. It was really hard to look around and see so many families dealing with serious illness (or worse) in their children (especially with just how close we came to all of that.) I couldn't help but feel extremely lucky that our visit would be limited to once and that our baby was going to be okay. And yet, it somehow seemed so unfair that not everyone would have it that easy. (During all of this, our girls had two friends who were diagnosed with brain tumors, one of them cancerous. This family is still watching their daughter suffer through many painful treatments.) It is so hard to understand why we miraculously didn't have to go through that and yet, other people do. If I have learned anything from this whole experience, I definitely feel that I have more compassion and empathy for families who have to go through serious illness (or even serious allergies) with their child. I couldn't even handle it for 2 days and can't even imagine how much harder it would be to have to handle it for any longer than that. I pray for these families, and hope that someday I will be able to help in some way.
I am incredibly thankful that Calyssa is going to be okay and that all of her problems are curable! Cause I am so totally in love with that girl!!
4 comments:
Wow, what a relief that she doesn't have anything more serious! I hope the food allergies will get better with time and that she continus to do well with all that you're doing to help her. Here's hoping for a healthier and less stressful year ahead!
I am so glad you have figured this out! Jakob is allergic to all tree nuts (if you remember) and had to be retested at 5, which is more accurate. Stick it on your list of things to do again in 4 years, just to play it safe. He was also allergic to milk with the same symptoms as Calyssa. He was okay if he only had a little, but too much caused a reaction. He outgrew that allergy. Thank goodness. Hope you are easing back into life!
good news! she is so cute & precious, i'm glad she'll be okay! <3
Thank goodness!
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