Warning – This post is over 2300 words. It is also not funny. It was a hard post to write. I appreciate you reading it – maybe after you read it you will read the prior post and consider supporting our JDRF walk. Not trying to belittle the importance of this post by plugging for donations – the opposite.
Those that know me or have been following my blog know that I have two children with diabetes and a third child, Middles, that has been showing signs of developing diabetes and has been taking part in TrialNet to study the progression of the disease over the last 18 months.
In June I received word that Middles had failed his last Glucose Tolerance Test via TrialNet. His pancreas was not able to produce enough insulin to keep his blood sugar in range during the two-hour test. I shared my thoughts about his failing pancreas HERE.
Prior to our trip to the Children With Diabetes Friends For Life conference in July I had not been able to get him in for a confirmatory GTT. I had been watching him closely and checking his sugar periodically to keep him safe. While I had caught a number of elevated blood sugars (230s-250s) his body was able to correct itself within an hour or so. I had also caught a number of “low” blood sugars (50s -60s) but food corrected those.
We attended the FFL conference July 9-15. At registration the wonderful conference volunteer asked me how many green bracelets I needed. Adults and children with diabetes all get green bracelets. Those that do not have diabetes get orange bracelets.
Seems like an easy enough questions right. I had two kids with me that were already diagnosed so I should ask for two green bracelets. I must have taken too long to answer because the volunteer went on to explain who would get a green bracelet. I had been before so I knew what the green bracelets meant. Still I stood there unable to answer this ‘easy’ question. The volunteer seemed concerned. She reached out and touched my hand and as she did so I realized I had tears slipping down my cheeks. I jerked my head rapidly, somewhat like a dog would do to get a fly off its nose. I was doing it to stop the cascade of thoughts that had paralyzed me.
I told the wonderful volunteer 2 green bracelets. She asked “are you sure?” This of course lead to more leaky tear ducts. I explained that I have a third child that is on the verge of a diagnosis. Her beautiful face could not hide the sadness she felt for me and my boy. She patted my hand and said “I’m going to give you one of each for your son, you can decide when you’re ready.”
I can decide.
If only that were the truth. I know she didn’t mean that I could decide if my child had or didn’t have diabetes. She only meant which bracelet to use that would keep my son safe while at the conference. She (the volunteer at registration) is a wonderful soul and her kindness did not go unappreciated.
I put the orange bracelet on him. I had a number of reasons. First he hadn’t been diagnosed yet. Second, this could be his last conference without diabetes so let him have the orange bracelet for this one last conference. Third, my husband, bless his sweet soul, was/is having a terrible time acknowledging the fact that we will be 3 for 3. He already gave up his dream vacation in Hawaii to take us to the conference; I’m not sure he would have tolerated a green bracelet on Middles.
I brought the green bracelet home. I don’t know that I meant to. It was still in our registration envelope. But here it is, still pristine, not worn. The green bracelet that means diabetes. Thankfully at Friends For Life it means the Norm. It means you are never alone. It means you have friends for life even if you only meet them once.
We had a fabulous time at the conference. My Middles did continue to show signs that a war was raging in his body. He was tired. He was cranky. He was starving. He was overly emotional. I checked his blood sugars daily but hadn’t caught any above 250, although he had a few in the 50s.
Why in the 50s? Because he is experiencing reactive lows. His pancreas can’t entirely keep up with his carb intake so his sugars go ‘high’ (200s) and his pancreas freaks out and goes into overtime making more insulin which in turn causes a low. This BTW is why his A1C is 4% (as of June 7th – it is likely higher now that I have seen so many numbers >250).
This is why an A1C alone should not be considered a diagnosis tool if it is within normal range. It is an average. The average blood glucose of a person with an A1C of 4% is 68mml. My boy is in the <80s more often than any other number – fasting, 4 hours post meal, middle of the night. However 2 hours post meal he is in the 180-250 range so his pancreas says “oh shit” and kicks out more insulin than is necessary to correct the high. Reactive Hypoglycemia.
Reactive Hypoglycemia is a chronic disease all by itself and is not always a precursor to diabetes. People with reactive hypoglycemia have to drastically change their eating habits to stay healthy. PWRH usually need to eat small low carb meals every 2-3 hours.
I do not believe my Middles simply has Reactive Hypoglycemia. His sugars are too elevated after a meal. My Sweetstuff had the same symptoms in the 6 months prior to her Type 1 Diabetes diagnosis. By the time she was diagnosed she was showing tell tail signs of diabetes including excessive thirst and urination. Middles does not exhibit those symptoms in a consistent way – they vary.
Basically because of his participation in TrialNet we are catching his diabetes very early.
It is my hope that we can start taking action now to preserve his remaining insulin producing cells and extend his honeymoon phase as long as possible. The honeymoon phase is the time after diagnosis in which the body still produces insulin so less artificial insulin is needed. It is not an easy time since the combination of artificial insulin and irregular productions of real insulin in the body can cause frequent hypoglycemic episodes. Still – this is an important time to be proactive to maintain the insulin production in his pancreas for as long as possible.
I started this post in July. I returned periodically to read/reread and edit. Since the time I began it things have changed. I wish with all my heart that they changed for the better and it was all a nightmare. A bad dream that I woke up from to find that I still ‘only’ was the mother of two kids with diabetes.
The bad dream is not a dream. It is a very real.
On August 1st at 11:45pm I learned the results of Middles confirmatory OGTT.
He failed again this time much worse than the first time he failed.
His fasting blood sugar before the test was 99. I do not have the 1 hour and 1.5 hour blood sugar readings. Truly they matter less than the final number of 360.
He had finished the test. I had my other two children and two additional children hanging out at the outdoor shopping center in Stanford while Middles participated in the OGTT. I needed to go get the other four children, feed everyone and then we were supposed to be playing on the beach by 1pm. That didn’t happen.
Instead when the test was complete and they did the final blood sugar check both with a blood draw that went to the lab and a finger stick we didn’t get to leave. The study coordinator came into the room wearing an expression that didn’t need words. We weren’t going anywhere for a while. I did leave for a few minutes to take money to the other kids and have them take themselves to lunch. Yes I cried during the 7 minute drive from the clinic to the shopping center and the 7 minute drive back.
Back at the clinic another nurse/CDE that works with various studies and at the children’s hospital came by to help determine our next steps. I had met this wonderful soul previously via a study my daughter is participating. I don’t know if she realized how much her being there helped me. I’m not sure if she realized how much her hug meant to me. Or how much it meant that she continued to check in with me the rest of the evening and the next day – even though Middles was not her patient.
Middles and I spent nearly 3 more hours at the clinic waiting for his blood sugar to return to normal range without administering insulin. It was 94 at 2pm. We were going to leave. Not to go to the beach, we were going to a lab to have more blood drawn to check other things like, thyroid, electrolytes, c-peptide (how much insulin he was making on his own), CBC and more. The labs needed to be taken at a laboratory affiliated with our own physicians. As we were leaving Middles said he felt sick. Within minutes he was vomiting. We stayed for a bit longer. When we did leave we were not going to the lab. We were going to the ER. I don’t believe it was high blood sugars that caused the vomiting. Although vomiting for people with diabetes can indicate a very serious issue. His vomiting was likely due to not eating anything except 5 cheese sticks all day, the stress of the diabetes diagnosis and the yucky glucose drink he had prior to the GTT. Still if a person being diagnosed with diabetes vomits in front of a number of diabetes medical professionals – you are sent to the hospital.
By the time we got to the hospital his blood sugar was 84 and he showed no symptoms of diabetes so the ER staff basically said “all is good” and sent us on our way.
I spoke with the endocrinologist the following morning. She had set up an appointment for the following Wednesday to see Middles. In the meantime we were to check his blood sugar before each meal and two hours after each meal. Also – avoid all fast acting sugars (candy, soda, sweets). I have been reluctant to share that last point. Sugar can not cause Type 1 diabetes. Avoiding sugar can not reverse type 1 diabetes (or any diabetes). Middles has diabetes and there is nothing we can do to make that not be true. However, since he has some insulin producing ability we want to avoid stressing the pancreas and causing reactive hypoglycemia.
His appointment went well. His A1C is up to 4.9 which is still well within ‘normal’. The endo officially confirmed his diagnosis of type 1 diabetes. She wants to start him on Lantus, a long acting insulin but before that happens she wants us to continue to check his blood sugars for a bit. If I catch numbers above 250 we will start the Lantus. That was yesterday. The 5 days prior to the appointment I had not caught a single number over 159.
Tonight – he is 359 - one week exactly from the GTT that resulted in the same exact number. Thursdays suck.
We now officially have 3 kids and all 3 kids have Type1 diabetes.
I don’t know why. People will ask lots of questions that I don’t know the answers to. They already asked when it was ‘just’ two kids. They will ask how its possible (dumb luck). They will ask if it runs in the family (it doesn’t – no other cases). They will ask how I manage it (they will have a pitiful face when they ask – and I’ll answer some days I do better than others – I have strong, brave kids which helps).
Then there will be people who want to know more details – did I not breastfeed?, did I drink while pregnant?, did I pour corn syrup down my babies throats?, etc. These people want me to say “yes” to any and all the questions that they believe might suggest I didn’t do right by my kids, that way they can sleep better at night believing that all the things they did do right will keep their kids safe. I don’t blame these people – diabetes is scary and when there is no logical explanation it is scarier. (Just FYI – I did breastfeed for 18+months each kid, I did not drink alcohol, I did not feed my kids concentrated sugar or even a lot of regular sugar – just the normal amount most parents would deem acceptable.)
My Middles is doing great with all of it. He and I have talked about it often in the last few months and even before that. About a week before he failed his last GTT after I caught a 232 on the meter I asked him if he was scared about diabetes. This is what he said – verbatim (I know this because it was one of those moments I loved him so much I wanted to absorb him into me).
“I would be afraid if I didn’t see Sweetstuff* and Sugarboy* do everything like it was easy. I mean I know it’s not easy but they do it and they are fine and your friends* do it and they do everything they want. I’m just a little worried about counting carbs.”
*He did not refer to his siblings using their blog names – he used their real names.
*The friends he was referring to are my adult friends with diabetes that he met at the Friends For Life conference.
If right now my Middles biggest worry is about how to count carbs than that’s ok with me. He is so very smart, kind, generous and brave. He is also my most tender-hearted child and I pray with every ounce of my soul that diabetes does not make him hard.
Also change twitter handle from @momof2t1s to @momof3t1s – suckage (total state of suck).