Monday, November 12, 2012

Makenna Update

Just wanted to post this picture of the kids in the bathtub... got puffies for them for the bath and they LOVE the bubbles!

Well this weekend we took the girls to Indianapolis to spend it with Aunt Jarilyn and go to Makenna's follow up appointment with her GI doctor at Riley Children's Hospital. Overall went pretty well. More pics of the weekend to come. But for now, this will be just about Miss Makenna!

So we met with her doctor and went over some questions we had. Josh was able to be at this one, his first one, so that was nice that he got to meet the doctor. And the doctor got to see the other two of the triplets. The great thing is, he knew which one was Mak. I suspected he would not be so sure, but he walked in and said something about all three being there and then pointed at Makenna and said I recognize that face, that is who I need to see. So that was a plus and why I LOVE this doctor so much. He takes the time to listen, to research, to CARE! Took us four doctors, but we fond the right one.

We talked about a few things. One of which being what is causing the "fructose" reaction that is so much more powerful than any of them, even the Lactose that she has 0% enzymes to digest. He is still unsure as to why. Thinks it could be the fact that she is intolerant to ALL sugars, but it is absorbed differently than the sugars tested, so there just isn't enough research out there to figure it out with a book or even an experienced doctor like himself. He thinks she could possibly just have a bad case of Malabsorption when it comes to Fructose, but again, we don't know for sure. So he wants to bring in an allergist friend of his. But he is going to discuss it with her first to make sure it is something she is interested in, possibly has experience with before we go see another doctor who can't or wont help or listen to us. He is also going to email a few other doctor friends to see if we can find someone that may know more about this then him or want to take an interest in figuring it out. He asked, what will we do different if we do find someone who knows... maybe nothing, maybe just continue doing what we are doing, but at least we will know. Or maybe we will figure out something that is wrong and there may be another treatment that can help her be better. So it is worth a shot. Even to get a second opinion, his suggestion. Just to get another perspective on it.

We also discussed her Zinc levels. We have tested it three times between two different doctors and all three times it was borderline low, but not low enough to consider something wrong. But... it could just be because she ate something with a lot of Zinc in it that day and she was at her highest peak. And he also said if you ask some doctors she would be lower than borderline. I think her level was like 61 maybe and 62 is the lowest of normal. And some doctors think anything below 70 is too low. I could be wrong on numbers, but those are the numbers sticking in my head. So he wants to put her on Zinc for a month and see if it helps the reactions and minimizes them. But we have to be careful because it could effect something, but I can't remember what. So one month should be okay and we will go from there.

I asked about medications, since she can't tolerate most due to the sugar in them, specifically sorbitol or fructose. He said we will just have to make sure we tell the pharmacist or doctor to get a prescription without if we can.

We talked about the Hereditary Fructose Intolerance test she had done and that it came back negative. He agrees with the Geneticist and no further testing for that is necessary. It would just be too risky for her and not worth it since we would just continue doing what we are doing. She would most likely have other symptoms or there would be something in all the tests we have taken to lead us in that direction, and there is nothing, just the rash and mood swings that come with eating Fructose and other related ingredients.

When we found out she was Lactose Intolerant, 0% enzymes which is extremely rare - we decided to cut it out as much as we could and give her Lactase enzymes in milk and anything that contained too much dairy. And doc thought she would be even better. But it seems like she is worse ever since we started. So after talking with the doctor and Dietitian, we decided to just go back to what we were doing and let her have the regular milk again. I think we just need to be careful and not let her overdue it. We are still unsure if it is that or if it something else, we just don't know. Could have been anything.

As for growing out of it, no way to know for sure. Since she was born with it, probably not... but maybe.

He checked her over and everything seemed fine, so that was good.

I am sure there is more, but I can't remember!

So he wants me to call him in a few weeks to make sure he did not forget to email his doctor friends and if he did get them to see what he found out. I guess we will go from there then. And we go back in a few months for another follow up appointment.

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