Spectrum Warriors: Life Through The Autism Spectrum

Blood Work Disaster And The Waiting Game

Waiting, waiting, waiting! Our life in a nutshell with the Monkey. We waited for a diagnosis. Felt like we waited forever for him to talk. We waited and waited for services finally taking it into our own hands and moving to be closer to said services. We wait patiently for him to master new skills all the time. Now we wait on blood work to find out if he has Juvenile Diabetes (type 1). Aside from the blood test, which I will get into soon, the waiting is the worst.

Type 1 diabetes is an autoimmune disorder in which the pancreas stops producing insulin. Without proper insulin production the glucose which enters our system after eating is not able to be absorbed by the cells of the body for us to us as energy, it allows the liver and muscles to also store glucose for later use when the blood sugar levels drop. Insulin is a major player when it comes to how our bodies function. I am hoping at worst that maybe he just has hypoglycemia and that it will be something that is easily managed.

When the Monkey was born he had extremely low blood sugar and was in the intensive care unit for a day while they brought his sugar back up. This is a common occurrence in children who are born to mothers who have gestational diabetes. The kicker here is I did not. I had the gestational diabetes test done twice while pregnant because I was constantly measuring much larger but my sugar tests were normal. At birth the Monkey came out blue and lethargic, he was also weighing in at 10 lbs 7oz so was extremely large and continues to be much larger then kids his age, not in the over weight sense but in height and in stature. So if I did not have gestational diabetes then why was he born with all the symptoms of someone who did? No one seemed to know or thought anything of it and just simply said this is common occurrence and nothing to worry about. Being a new mother who was also the first of her friends to have a child I took their word for it and we moved on.

From the day he was born the Monkey has always been starving, had issues with candida which was hard to treat, and had numerous infections which lead to rounds and rounds of antibiotics. These are some of the early signs of diabetes in really young children. Around age 3 we started noticing the smell on his breath and our doctor at the time said it’s nothing but no tests were done. So what prompted us to talk to our doctor now? Well over the years these have become more apparent. His symptoms are:

1)Extreme hunger without weight gain

2)Night sweats which leave his pillow and bedding wet

3)Sweet and cloudy smelling urine

4)Sweet almost chemical smell to his breath

5)Moodiness when hungry

After speaking to my doctor she quickly sent us to have a glucose test done.

I started preparing the Monkey for the test the very next day and we had 7 days to go over every thing that would happen. I wrote him a social store highlighting the things to expect and we practiced having out blood taken. This was all good till the day actually came and all bets were off. To give him credit he tried really hard to stay brave and when he felt his anxiety climbing he asked me to count with him. I did in the end have to bribe him with the promise of a new lego box set if he would just let them take his blood. This allowed us to get the first round done.

Here is a few pics of the social story I wrote him:

hospital1

hotpital2

hotpistal3

After round 1 we went home and had a decently large breakfast. I made this a treat day breakfast so we had waffles and fruit. I did this on purpose as well because following a treat day breakfast which involves fruit and syrup is when we see the most of the symptoms in him. He thought it was great. Sure he got his blood taken but he got a yummy breakfast and the promise of a new toy.

Two hours after eating it was time to go back to the hospital for round 2 in which upon finishing he would get his lego toy as promised. We picked up my mother at her house as the Monkey insisted she come with us and I felt this would help calm him a bit. Anything to keep him happy right. Well when we got there for round to the waiting room was now filled with people which automatically sent little bells off in his head I am sure. I assumed once he got the first one out of the way and realized it didn’t really hurt that the second one would go just fine. WAS I EVER WRONG!!!! After I had my blood work done (which I was also having taken for my own diabetes symptoms that seem to be manifesting) and he climbed up on my lap the panic began and he quickly asked me to count with him. It was a million times worse then the first and it required 4 of us to hold him down so that the technician could take his blood. Worse part was he moved his arm and so the needle went in a little to far which meant he screamed the most ear piercing scream I had ever heard and I had to hold myself together not to scream at them to stop what they were doing and just run out of there with him as far as we could go. Hearing your child in pain, terrified is one of the worst feelings in the world and my heart broke but it needed to be done.

After it was all done and he had the bandaid on his arm he looked up at all of us and said: “I was so calm and brave right? I did a good job!” We all looked at each other smiled and tried really hard not to laugh but we all said, “Yep, you were so brave. Good job.” I let him have the banana popsicle that they gave him, even though I am not a huge fan of artificially coloured and flavoured foods because honestly one little treat wont kill him and I was a little frazzled.

We then bought a lego box set and headed home.

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One proud little Monkey with his lego kit and smiley face band-aids.

Now we wait.

With autism I gradually made peace with it and knew he had it way before he was even diagnosed with it. I had time to come to grips with what autism meant and what treatments were available and what the outcome might be. With the diabetes I have to tell you I am pretty on edge about the entire thing. Complications from diabetes can be as serious as coma and death. All of a sudden Autism is looking like a walk in the park.

And the wait! The wait to find out is going to kill me yet a part of me doesn’t want to know because diabetes is scary. It isn’t something we can teach him to overcome . We can’t treat it like his anxiety and expose him to scenarios and teach him how to make sense of it all. Diabetes is for life and he will constantly have to monitor his sugar levels and food intake. He might need to have daily insulin injections which scares the crap out of me and will be hard to do with him. The fear of coma and death as a complication makes diabetes a million times scarier then autism. So we wait!

 

 

Sabrina

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2 Comments

  1. My grandfather had type I insulin dependent diabeties. He wasn’t diagnosed until he was in his 30’s and the added sugar/coffee consumption made the symptoms more obvious. He was an orphan – literally, so I guess it was lucky he stayed healthy so long! Best of luck with the blood tests. It’s better to know, one way or the other. Diabeties can be serious.

    Blood work is no fun for us either. Stephen hates when they tie his arm the most. The needle isn’t even what freaks him out. We use the iphone – music and video to distract him (so he doesn’t get so nervous.) We also got a perscription for lidocaine numbing cream from the pediatrician. Stephen has blood work regularly for his epilepsy.

    We’ve learned all the tricks that work best for him, and we tell the technician right from the start. His veins collapse so they use a syringe instead of the tubes, and we start with him laying down on the table I lean over him and hold his shoulders and sing. A technician who worked at the children’s hospital before working at the blood lab taught us the laying down trick and now we ask for it even when it’s not usually offered. He stays pretty calm now and only whines for a minute – usually stops whining as soon as they untie his arm 🙂

    • We are still waiting for the results. My Monkey hates anything that breaks the skin. Blood is like the devil. He sees it and he’s done. Even if you have a scratch don’t even dare touching or looking at it because he will yell at you…lol.

      He gets worked up really easily. Anxiety is our biggest issue with him but he did try his best, bless his heart. He tried so hard to be brave. I hope the tests are negative, not only because Diabetes is scary and serious but because I can’t imagine how I would give him insulin if I even had to without strapping him down.

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