The Green Bracelet Post

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.

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Middles wearing an orange bracelet while visiting Harry Potter (Otter) world after attending the conference.

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.

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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.

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Beginning OGTT. No idea what will transpire in the next 5 hours.

 359.

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.

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at ER – not in a bed yet. Just waiting.

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.

For now….

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Also change twitter handle from @momof2t1s to @momof3t1s – suckage (total state of suck).

 

 

 

Friendly Fire

My Middles is 11. He plays video games. In fact if left to himself he would play video games for 12-14 hours – emerging from his room only occasionally to get sustenance. He would do that very stealthy so I wouldn’t see him and remind him to put away clothes, pick up a room, or go outside to play. I’m ashamed to admit there have been days that is a true story. My day gets hectic and I “forgot” him. He is an easy kid. Never demanding and always considerate of others. But he knows that if I see him I’m going to “suggest” he turn off the games, do some chores, and play outside. It’s hard for me to make him turn off the games. He plays Xbox Live with his friends back in TX. I hate pulling him away from the friends he misses so terribly. – ok this post is not really about my sons video game addiction. I only mentioned that he plays video games so you would understand why I explained diabetes to him the way I did. Clearly I have some parenting issues regarding video games I need to work on. (I ramble for the next little bit – feel free to skip my rambling and move on to the conversation I share at the end.)

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I’m gonna try to avoid discussing my parenting issues again when I tell you that one of his favorite games to play live is ‘Call of Duty – Black Ops’. I’m sure gamers out there would agree that it is one of the best video games ever made. I personally think Mario Bros games are the best games ever made – those and Mr. Do – I loved Mr. Do. Digressing. Sorry.

My son understands military/war type stuff because of his games and some movies including ‘Saving Private Ryan’. He understands (much to my embarrassment) snipers, strike first missions, invasions, whatever. Basically he gets that there are soldiers protecting people and areas and other soldiers trying to invade, capture, kill in that area.

My Middles has lived with diabetes for over 6 years. He ‘doesn’t’ have diabetes his siblings do. He knows all of what is required to care for oneself with diabetes. What he didn’t know or understand was what having diabetes really meant in regards to his own body. I wrote a post a few days ago regarding a really ticked off cat. In it I shared that my Middles failed his last Glucose Tolerance Test. He will be retested soon. Still I couldn’t ignore the results and pretend that we may not yet again be hit with the diabetes stick.

When I got the news about his test failure I was upset. He saw me upset. I tried to play it down. Say that I was tired. Told him not to worry. He still worried. Later that day at the hotel he wouldn’t stop asking for food and since we were staying at a hotel with friends he was asking for their food too. He wasn’t asking for dinner. He wanted snacks and sweets. I kept telling him no. All week Tuesday night – Friday morning, I just kept telling him no sweets. Nothing that I would use to treat a low blood sugar. Friday I was driving him to his friend’s house where he would stay for 24 hours without me. I told him no candy, juice, or anything that says “fruit” but has to be unwrapped (fruit roll-ups, fruit snacks, fruit by the foot – what is all this crap – it certainly isn’t fruit).

Now let me just say – a person with type 1 diabetes can eat anything a person without diabetes can eat. It doesn’t mean they should – in fact the people without diabetes shouldn’t be eating it anyway. IMHO (This does not include Reese’s Peanut Butter Cups – those everyone should eat and if you don’t like them you should send them to  me).

Also let me say – eating things with sugar will not, does not, and never has – caused Type 1 diabetes. However – eating those things does make a persons pancreas work harder in both those with diabetes and those without. For a person whose pancreas is acting wonky eating things with lots of processed sugars is just like daring the pancreas to say ‘screw you’. IMHO

Getting back to shooting people.

So on our way to his friend’s house my son asked why he couldn’t have a V8 Splash or fruit snacks anymore (not that he had those things regularly but he did enjoy them while at this friends house in the past). Of course this promptly triggered the tear ducks in my eyes to begin operation ‘can’t hide anything from him’.

I explained about the test results and what it might mean. I explained he might be developing diabetes. (BTW – this is not the first time he heard news that he could develop diabetes – he knows perfectly why he has been participating in the TrialNet studies and getting the GTT tests) I told him he may have to start taking an insulin shot each day to give his pancreas a break. I was sure to use “might” and “may” often. I mean I MAY not be right. I explained how juice, candy and fruit type snacks that aren’t actually fruit at all – could stress out his pancreas.

This is our conversation – I’m sure a number of you are saying “I should have just gone to the conversation”.

Middles: I know we need insulin to stay alive. I know that when you have diabetes your pancreas doesn’t make insulin, but why?

Me: The immune system destroys all the insulin producing cells in the pancreas.

Middles: Blank Stare

Me: You have an immune system that works to keep you healthy. It attacks things that can make you sick.

Middles: How?

Me: Think of your immune system as a first line of defense. Little soldiers patrolling your body looking for enemy invaders.

Middles: Ok  (his ok was said with great enthusiasm – clearly too much video game time)

Me: So when you get a virus, like the flu, the immune system soldiers seek out the virus and destroy it.

Middles: So why do they destroy the cells that make insulin?

Me: Well I think its like friendly fire. I think a virus or something that shouldn’t be hanging out with the cells that make insulin are, so the immune system thinks the insulin cells are also the enemy. This is just an idea. A possible reason. If scientists knew exactly why then they could stop it. Lots of people are working hard to stop it.

Middles: Oh, that makes sense.

Me: Are you ok?

Middles: Yea, I’m good. Can I still have strawberry shortcake if ****’s mom makes it again? I’m sorry but it was better than yours.

Me: Yes baby. You can have it.

Middles: Awesome. I hope she makes it. We almost there?

My Middles is gonna be fine. Regardless of results of his re-test or what the future might hold. Our family will be fine. Scientists, researchers, doctors, people in the DOC – they are all working to figure it all out. Maybe a cure wont be here in 5 years, 10 years, but it will come. My Middles told me it would. He said he would be part of it. I love my kid.

Screw Schrodinger

I am not a scientist. I vaguely remembered the lessons of Schrödinger’s Cat in regards to thought process and even less in regards to Quantum Mechanics when I was briefly introduced to it in some philosophy class in college. I was only reminded of it while watching an episode of “The Big Bang Theory” (funny ass show btw if you haven’t watched. The bit about the cat is at 2:44 min)

Ok so here is where this is going – I’m sure the suspense is killing you.

Feb 2007 – Sugarboy was diagnosed with Type 1 – this was completely unexpected – the kind ‘of shit’ that blindsides you at 4pm on some idle Tuesday (from Baz Luhrmann’s Everybody’s Free to Wear Sunscreen)only it was a Wednesday morning – and everyone should most certainly wear sunscreen. Oh here is a link to Baz’s song because its awesome.

July 2007 – Sweetstuff was tested for antibodies at FFL via TrialNet – two months later we got results that said she was positive for 3 out of 4 antibodies. We didn’t pursue further testing because – well because we were scared as shit and didn’t want to put the fear on her and surely lightning wouldn’t strike twice – right? WRONG – keep reading. (I should also note that my Middles was only 5 at the time and chose not to get a huge needle stuck in his arm to be tested. We respected that. Chad and I were both tested and are negative for antibodies.)

April 2009 – Sweetstuff was diagnosed with Type 1 diabetes. Screw you diabetes.

October 2011 – While participating in a JDRF Walk to Cure Diabetes, Middles agreed to be tested for the antibodies. (I can’t recall what his daddy promised him but I can assure you he was bribed.) Up until this point the cat was both alive and dead (and this line makes no sense to you if you don’t know about Schrödinger’s cat – go back and click the Wiki link or Big Bang link). We hadn’t opened the box. Although in truth the cat was either dead or alive before the box was ever opened and not really both alive and dead. I can tell this is gonna get convoluted – stay with me.

Feb 2012 – While at a routine endo visit with Sweetstuff and Sugarboy I was told that Middles test results from TrialNet had come in. He was positive for all antibodies. Frick Frack Fruck.

Basically – we opened the box by having Middles tested. The tests showed my Middles was at high risk for developing Type 1 diabetes. That risk was there whether we knew about it or not.

What did knowing do for us? Well it allowed us to continue having Middles observed. He agreed to a blood draws and Glucose Tolerance Tests every 6 months while we considered additional studies. It also meant putting another cat in a box each time. It also meant (just realized I started two sentences with that phrase – should probably fix that but – whatever) I was in a constant state of worry. I don’t know if I’ve ever told y’all but I do have some anxiety issues. Not the kind that lead me to believe aliens will abduct me (although now I’m thinking about that) but that shit that can go wrong will go wrong. It is an illness that I should probably talk about more because I know I’m not alone. Moving on….

On Tuesday June 22nd, a week after his last GTT and blood work I got THE call. The call that told me he failed the GTT.

fasting blood sugar: 110

1 hour mark of GTT: 239

1.5 hour mark of GTT: 212

2 hour mark of GTT: 207

A1C (don’t let this fool you): 4%

Anything greater than 199 at the two-hour mark is diabetes.

How does he have an A1C of 4% you ask? Because his pancreas is in such disregulation that it doesn’t know what the fuck it’s doing. At times I would randomly check his sugars he would be in the 60s. Other times in the upper 100’s. An A1C is an average blood sugar over about a 3 month period. Enough numbers in the 60s averaged with numbers in the upper 100’s or lower 200s will give a very pretty 4% (roughly over 6% is diabetes). A1C doesn’t mean much other than the pancreas is wonky. (can I use wonky and fuck at the same time to describe his pancreas? – its like Elmo meets Andrew Dice Clay)

So Im a little messed up right now. Im not at my best – in fact I am at my very worst.

Middles will go in for another GTT to confirm – just in case something went screwy with the test. Since we were away in TX I haven’t contacted the other kids Endo yet. I was planing on switching before we left (she – their Endo – isn’t playing nicely regarding getting back on Novalog). I will call her office tomorrow and get her thoughts. Chad is in denial and man or man do I hope he is right. It’s all some big goof up in the lab. I do not want to be 3 for 3 in this game. It isn’t like baseball with 3 up 3 down with my team on top. It’s the opposite.

 

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this is not my picture. I don’t know whose it is. It is a Meme. Im not sure of the rules regarding memes. If this is your picture please don’t sue me – Im already having a bad day.

PS. My friend over at thePerfectD has been writing a post that may or may not include a reference to Schrodinger and his feline friend that may or may not be dead. I haven’t seen her post it yet. We knew we were both writing or not writing a post regarding dead and alive cats. I started a similar post to this one only I didn’t have any results. I was gonna wait for my friend to post first. But since my kid might be number 3 for me I got dibs. Still you should look daily for her post because it will likely be much better than mine and far less convoluted.

What Dreams May Come

What Dreams May Come

This morning I woke up and thought the previous 48 hours were a dream. Then I saw the mini meter on my nightstand and Middles sleeping peacefully on the other side of the bed. I so badly wanted it to all be a dream.

I continue to check Middles blood sugars first thing in the morning, before meals and postprandial. Today his numbers did not spike above 149 and he woke up at 93. He was away from me over the lunch period so I could not check and he was not comfortable taking a meter with him to a friends house. He doesn’t want his friends to know until he hears it from a doctor.

I have not allowed him high glycemic index foods. Yes I know people with Type 1 diabetes can eat the cupcake but right now I am going to try my best to limit the fast acting carbs and let his pancreas rest (not giving him insulin yet). I’m trying to avoid the spikes and preserve beta cell function.

If newly diagnosed people go through a “honeymoon” phase I would say Middles is still in the “engagement” phase. I know the storm is coming (although I pray hourly that for the first time in my entire life I am wrong).

Middles fell asleep in my arms last night while lying in my bed with me. He was crying and voicing all his fears. His last words before sniffling himself to sleep were “at least now I get to attend Texas Lions Camp.” Texas Lions Camp is a week long sleep away camp for kids with diabetes. Sweetstuff will be attending for the 3rd time this summer and Sugarboy will go for the first time this year since he is now old enough. The problem is – camp is full. There is a waiting list.

My first prayer is that I am so very very wrong.
If I can’t have that – maybe there will be someway to get Middles into camp.