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The last year since diagnosis has been super hectic for me and my family. We have been going through a lot, so I have been trying to journal some of the major events that have been happening. Someone at my work recently told me that I should write a book about my crazy life. I kind of thought the same thing, that is why I had been trying to record some things. So tonight I wrote about some of the latest things that have been happening with Brennen's diabetes. The following is my "jornal" entry:

February 15, 2012

Since I last wrote, a lot has happened. Abby decided she was going to be willing to watch Brennen, but I had gone out that Friday and scoped out the neighborhood daycare centers and decided to put him in the local Horizon Activities Center since this way I knew someone would always be available to watch him. I would never have to call off work simply because the babysitter was ill or on vacation (Heidi and Abby already had two weeks planned to take off in the near future.) I choose this particular center because the assistant director had firsthand experience with Diabetes. She has a 10 year old daughter who was diagnosed shortly before my little Brennen was. Although she has no experience with an insulin pump (her daughter prefers to take injections) at least she understands the disease process which makes me feel better about the whole situation.

Brennen’s first day at “school” as we like to call it, he experienced a low blood sugar after gym time. I attributed this to the increased activity and told the daycare teachers we would work to adjust his insulin delivery rates. He ended up having to stay home the next couple of days because there were some forms that needed filled out by his doctor since he is diabetic that the daycare had been previously unaware that they needed. Brennen is the first child the center has had with diabetes. Luckily my dad was able to help me out and watch him for those couple of days while I was at work or school.

That Thursday my dad called me at school because Brennen’s sugar had gotten dangerously low. He said he was acting completely normal other than saying he was hungry, but when my dad checked his sugar so he could eat, it read 39!!! He gave Brennen a juice box and rechecked him in twenty minutes, but Brennen’s sugar was only up to 50, which is still very low. (Brennen’s normal range is 100-200.) Brennen’s sugar just would not go up. I got home and suspended his basal rate of insulin for a period of time, but it took a total of 3 hours just to get him up to 80, which is low, but not as scary as 39 or 50. Eventually I was able to get him in range, but that was not the last resistant low blood sugar we would have to deal with. The next day he was able to go back to daycare, but they called me at about 12:30 saying he had eaten lunch, but at naptime he fell asleep really quickly. They checked his sugar and he was back into the 30s again. They checked his sugar several times over the next hour and had given him three juice boxes and cake gel frosting to try and bring his sugar up, but with no luck. By this time, he had a tummy ache from all of the juice right after lunch and his sugar was still low. I turned off his insulin for a half hour and he lied on the couch resting. No luck. His sugar was still 50. I decided to call his endocrinologists office for advice. This had never happened before and I had no idea what was going on. They told me to turn off his insulin for an hour, and not to bolus him for any food he might eat Friday or Saturday. After an hour of having the insulin off, nothing had changed, so I took it upon myself to leave it off for two more hours and vowing that if his sugar did not go up within that first hour, I would call his dad and tell him I was taking him to the Cleveland Clinic Emergency Room. Luckily his sugar went up to 100 an hour later so that never had to happen.

Over the weekend, the boys were with their dad, but I filled him in on what was going on and he took great care of our little guy. On Sunday he tried to give Brennen some insulin (just under 50% of what was suggested he have) when he ate. His sugar quickly plummeted from near 400 down into the 30’s again! So insulin was avoided for the next two days until we were able to get an appointment with the Nurse Practitioner he sees for his diabetes.

On Tuesday, we went to see his Nurse Practioner at the Cleveland Clinic. She did a thorough exam and asked us all about what had been going on with Brennen’s sugar levels lately. She downloaded his data from his pump so she could analyze it for any trends we might have missed. After reviewing the data she was unable to find anything either. She decided to have us lower all of his basal rates even more than I already had on that previous Thursday in order to hopefully avoid these crazy lows. We also changed his insulin duration from 2 to 3 hours so he would essentially end up getting less insulin. I just could not figure out what might be causing this to happen! She then explained to me that people with Type 1 Diabetes are more prone to having/developing other autoimmune diseases. My heart dropped. The three most common of these are Thyroid problems, Addison’s, and Celiac’s. She said his symptoms were not consistent with a Thyroid problem, but the other two may be of concern. Most likely Celiac’s. I don’t know much about either one, but I do know if you have Celiac’s you must avoid wheat and be on a gluten free diet. Just what we needed, a more strict diet than that of a diabetic child! So, we ended up having to get fasting blood work drawn, which is always a treat with a three year old! They drew blood to test for all three diseases plus for his fasting blood sugar and A1C, since in a few days it will be his one year D-aversary. This blood work should be performed once a year anyway. Now, we just have to wait and see what happens and pray for the best. It is so nerve wracking as a mom though to wait on something so important about your baby’s health. I just wish I could take all of his illness, the finger sticks, the pod changes and needles, highs and lows, everything away from him and endure it myself. He is just a little guy who has had to mature far beyond his years. He is the bravest little three-year- old I know! I love him SO much! Currently waiting with our finger’s crossed! Wish us luck!

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Comment by samsmom on February 15, 2012 at 7:53pm

Good luck with the tests -- I hope they come back negative! My daughter does have hypothyroidism, which was diagnosed right after the T1. We've been living with this for a year & I still feel overwhelmed. Did the nurse say maybe Brennen is still producing some of his own insulin, so that is causing the lows?? I'm not much help with all this really, just wanted to say keep writing.

Comment by Ann on February 15, 2012 at 11:14pm

I hope you get encouraging results from the tests, too! A word of caution about the celiac test: if it comes back negative, that doesn't mean that he doesn't have celiac or that he's not sensitive to gluten in other ways. I know this because I have something very similar to celiac and so do two of my children. For the three of us, we're fine as long as we avoid gluten. If we eat it, we start to have problems and within a day or two, we're not doing well. Fortunately, we don't have to be hyper-vigilant about gluten, which many celiacs must, so if there's a trace amount in a bit of food, it's okay once in awhile. Eating a whole plate of pasta, though, isn't good!

What I mean to say is that you might want to try Brennan on a gluten-free diet for a week or so and see if it makes a difference for him.

Comment by MariaCDE on February 16, 2012 at 6:43am

Wow,hats off to you and Brennen. Ann's comment about the blood test for Celiac is correct. It has to be high for the blood test to be proof positive of a diagnosis. If the blood test does not confirm it, (You won't like what I'm about to say) the only way to really confirm this is though a biopsy...BUT I really doubt that your practitioner is going to recommend this. A less invasisve approach mentioned above, of eliminating wheat and its derivatives, is usually the best route. Before you start doing that though, just observe (don't say anything to him) his behavior after he's had wheat-containing products...does he complain of a belly ache, cramping, constipation or any combination? If you do, let your HCP know. If it turns out that this is confirmed, it is, yes, a complicated diet. But there are so many more gluten-free foods available now in the supermarket than there was just 5 years ago. I'll be saying my prayers for your family and Brennen, too! Hang in there, Mom!

Comment by Sophia'smommyLori on February 16, 2012 at 12:37pm

I hope your tests come back negative and I hope the lows are just due to his pancreas kicking in a bit :) I can so relate to wanting to take this all away from them and just have it yourself. These sweet, little angels have to go through so much. Good luck and keep doing a great job taking care of Brennen!! Lori


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