Monday, September 10, 2012
Makenna has a diagnosis!
Well we finally got some answers about Makenna. It is worse than we thought. The doctor himself called me, it's always been the nurse so I knew something was up. He started off with... Well, the Endoscopy came back great, no Celiac or Crohn's and looks good. However, her Sugar Analysis came back extremely abnormal. He said her Lactose enzymes are at 0%, so she is Lactose Intolerant, worse than most. And all her other sugars are below the "below normal" range. For instance... glucose to fructose is at 22.6% and low is 25%, they want it above 25%. He named off a few others, waiting on the official paperwork to get the numbers right.
So now we have to cut out as much Lactose and all other sugars as much as possible. I am not really sure what the long term effects will be, we meet with him in November to discuss more as well as a Dietitian. So I guess for the next 2 months, we just try to figure it out and find a way to live with this.
I asked why is she so sensitive to Fructose, he was not completely sure but I am assuming it is because it is the hardest sugar to digest. He said when she eats it, it just sits in her colon and does not go anywhere, causing bacteria... which is probably what causes the rash. And then it makes her very uncomfortable, bloated, constipated, diarrhea, major mood swings, rage. Now we know why she changes like a flip of switch when she has a bowel movement.
We have to keep her on Vitamin D and Calcium, possibly Probiodics. That was rough finding something for her that did not contain sugar or lactose. But found a vitamin shop close to work that had something we can give her. Plan on putting all the kids on a multi vitamin that she can have too. And thanks to my friend Leah, I think she found us something that will work for ALL of them, including Makenna.
We just got the fructose thing down, took us 9 months, and now we have to do ALL sugar, including Lactose. What?? Really? She has been drinking Milk and eating Mac n Cheese forever. How did we not know? No answers for that, but when you look back and think about what went on when she was an infant... she was losing her bottle about every other time, constantly hungry, moody, crying all the time. Well, now we know. I just wish the doctors would have listened to me then and done the tests then, but just brushed it off. It's sad it took 3 different doctors to find this diagnosis. The kids Pediatrician is awesome, love her and will always go to her, but the GI doctor in town should have at least ran a few more tests instead of saying... "Well it sounds like you self diagnosed her." Just makes me so mad that we had to drive 2 hours to find a doctor who would take the time to listen and figure it out. Thank you Dr. Vanderpool and Riley Childrens Hospital! The allergist we saw had no clue, but he did try.
It was very hard the first few days, I was in tears. I had no idea where to start or what to do. I decided to try the FODMAP diet, but then regretted it later. From what I found, it is suppose to be for those who want to cut out Lactose and Sugars... I think. So thought it would be perfect... not so much. She reacted to something, Blueberries, Orange Juice, Crackers, I don't know. I should have known better though, only try ONE food at a time. I did some research and discovered Lactase Drops. Put them on Ice Cream or in Cows Milk and it reduces the Lactose greatly, of course we still have to watch out for the sugar, but hey, we got that down... for the most part! Prefer to talk with the doctor about it first though to make sure we use it correctly.
So that made me feel a little better and hope to give it a try soon. We decided to just continue what we were doing since it was working, most of the time - sometimes it wouldn't work and we had no clue what was causing her reactions - but maybe it was Lactose. So we will just have to cut back on that also and hopefully we can get this under control and make it better for Makenna.
She is doing GREAT. She understands for the most part and does really good doing what I ask and only eating one serving of each food item at a meal. Snack at school is going good. She does not mind having her own snack while her sisters and other kids get something else. I am so proud of her. I am just sad for her because of all she will miss out on, really sad and wish I could take it away.
We can do this...we have to do this. It will be a huge struggle, but with my parents and Josh's parents support and help... we can keep her happy and out of pain.
We will slip up I am sure, but having it happen on occasion will be much better than having it happen every other week. I just can't do it. She is uncontrollable and I am so lost when it happens, I just don't know what to do with her or how to handle her. It's scary what can happen to her and if I can keep it from happening, then I will do my best to make sure it doesn't.
So wish us luck and hope to have a "better explanation" soon once we get the info from the doctor.
And just in case you don't know exactly what is happening... (this is from what I understand after talking with the doctor and research)
Everyone needs enzymes to digest sugar/lactose. The enzymes break up the sugar to be able to digest it. If you don't have the enzymes, or they are low... then your body struggles to digest them and causes many problems. Mak has NONE to digest Lactose and very little to digest Sugar. And hopefully the Lactase Enzymes that I found will provide her with the enzymes she needs when she does eat Lactose. As for sugar, well glucose/dextrose is the easiest sugar to digest and from what I understand that is what the enzymes break it down to be (could be wrong), so when we give her dextrose (smarties for instance) it helps pull the "bad" sugar through her body. But we have to be VERY careful not to overload her on it as it can cause Hypoglycemia. Unbelievable how many ingredients and other foods fit in the "bad sugar" and "lactose" categories that we have to keep out of her diet. There is probably over 24 different ... common... ingredients found in many of the food we eat every day that she can't have. So we just have to do the best we can and try to figure it all out!
Posted by Megan at 8:03 PM