*Disclaimer: This blog was written with A’s permission. I would never betray my son’s trust like that*
It is important to know how to advocate for your autistic child who also has a serious medical condition. This is especially true when dealing with school nurses.
As most of my readers know, my 10 year old son A (really my husband’s half brother but we have physical custody of him through family court) is autistic and has type one diabetes. Type one diabetes is when the immune system attacks the insulin producing beta cells in the pancreas. Without insulin replacement therapy along with glucose and ketone monitoring, A would not be with us. It is a lethal autoimmune disease if not managed carefully. He has an insulin pump and cgm (continuous glucose monitor) and it has been working for him.
Today he woke up and his pump ran out of insulin. His glucose was a little high. My husband did a site and cartridge change for the pump. He gave a subcutaneous injection to correct the high glucose before he did pump maintenance. This is normal protocol for him. We have been caring for A for almost 6 years. He was diagnosed with diabetes when he was 2 so we have been doing this a long time. A has been out of the hospital for over 2 years with his current care plan. He is starting to become independent with his care, with supervision of course. We supervise because if he gets too much insulin, his life can be in danger.
About an hour after my husband dropped A off at school, I got a call from the school nurse. I had been trying to vacuum the dust from under our bed because we do not want to be breathing that in and the new baby is in our room. The nurse said he was high this morning and she was going to give him a correction dose. I explained to her what happened this morning.
It takes 2 hours for insulin to peak. She could have given him too much insulin to quickly and that would cause hypoglycemia. That is low blood glucose. If it goes low enough he can have a seizure and it can be fatal.
She was arguing with me! She was not there. She did not know what happened. She kept on repeating “it does not show on the pump.” Of course the correction dose does not show on the pump, it was an injection via the insulin pen!
I then asked if she tested him for ketones. She told me the ketone meter is not in there. He has a large case where he keeps his glucose meter, glucose tablets, ketone meter and test strips for each meter. “Oh there it is.” How does a nurse not check for ketones on a type one diabetic? I got so frustrated, I hung up.
Ketones are a substance made by the liver. The liver produces them when there is not enough glucose to break down to turn into energy. Insulin keeps them in control. Ketones are always tested if the type one diabetic has high glucose (over 240 mg/dl) or if the diabetic is sick. If the ketone level is too high, they have a chance of developing Diabetic Ketoacidosis. The ketone level would be so high that his blood would turn to acid and he would need to be hospitalized. A has been near death with DKA 4 times in his life, all before he came to us. He was 5 when placed with us so that should give you the horrifying truth. I am not trying to be a martyr as it is his illness but I want people to realize how serious DKA can be.
My husband overheard me yelling back at the nurse who was not listening. He called the principal of the school. He told her what happened and she is dealing with it. At the same time I called the diabetes educator at the endocrinologist office. She is the main medical professional who adjusts A’s plan of care. She mostly adjusts insulin doses as his levels change. She has always been his best advocate. I told her what happened and she called the school right away and she called me back. The diabetes educator did call to make sure they are following her orders exactly and not to deviate from it. “His parents know what they are doing and so does the child.”
Right after this I had no data on A’s dexcom follow app. The dexcom his is CGM and it pushes his glucose number to anyone who is following his dexcom account. It is able to be done by the dexcom user having their own phone. I pinged the phone using the find my iphone app on my own phone. A few minutes later it showed his number as 179 and trending down. If she gave him more insulin, she could have caused hypoglycemia and risking his life.
If your autistic child goes to school and they have a serious medical condition, do not take the high and mighty attitude from the school nurse. Not all school nurses are bad. The last 3 have been great and they have followed the diabetes educator’s care plan verbatim. There are others who think they know more than the doctor.
Always have a plan of action on what to do in this type of situation. For us, the dexcom tells us no matter where he is, the state of his health. Always keep a copy of the orders for your own records. This is in case they try to say it says something when it doesn’t.
Never be afraid to speak up. If your child needs it to keep them safe, make sure to bring it up. If you feel like you have a hard time advocating like this, seek out a parent advocate who can help you advocate for your child. If you need help with any of these things, please reach out to me. I would be glad to help if it agrees with my schedule.
For A, all his equipment for his diabetes is part of his IEP. This way everyone is doubly sure that the doctor’s orders are followed. Because the dexcom is on the IEP, A’s phone is the only student phone permitted on the staff WiFi to make sure it is connected at all times.
Report to the Health Department
So the investigator emailed me back. They need school records and the nurse’s first name. First thing I did was call the first school and and asked. They thought I had it already so they gave it to me. I emailed the investigator with this information. Then I called the new school because the old school said the would not give me the records because the new school has it. The new school will give them to me tomorrow.