Needing Help from Mothers of Diabetic Children

Bless your heart; I'm stunned the doc wouldn't test his blood sugar. I'm Type 1, diagnosed 40 years ago, and I've been on an insulin pump for the past 16 years (and doing well, knock on wood). I still remember my symptoms: I had what felt like a dry spot in the middle of my tongue, no matter how much water I drank (with frequent urination, which was classic ketoacidosis from high b.s.), and I wanted to sleep all the time. When my mom let me stay home from school, I'd awaken briefly when she left, then go back to sleep until 2 or 3pm, at age 11. I was weak and couldn't carry my books at school, and I'd have to rest on the stair landing to catch my breath. After a couple of weeks, mom took me to the doctor, and he diagnosed me right there during the office visit. Do you know anyone with a glucose meter? Have them use a new lancet, and test his sugar. If you don't know anyone, call the local drug store and see if they'll do it. On another topic, someone suggested checking the levels on his CBC, but that won't be reliable, because CBCs are taken from the vein, whereas blood sugar levels are taken from the finger (capillary). I've asked about that during my last dr. visit, and that's what the phlebotomist told me. Good luck!

A CBC does not check glucose levels. Only a chemistry panel will do that, or a finger stick specifically for blood sugar.

I'm quite shocked a blood glucose wasn't checked in the er, even with a seizure diagnosis, since low blood sugar is one of the most common causes of seizure activity. See a new doctor or go to a new er.

Get your hand on a glucometer either via a family member or pick up a cheap unit at the drugstore to have on hand in case this happens again. Familiarize yourself with it so if he has another episode you are ready to go and not trying to read instructions all bleary eyed while he's getting worse. Glucose levels are generally checked by techs, not by doctors so I could see why the doc just brushed it off especially at that point (not justifying his actions but I could see why he would brush it off if your son's condition had already improved).

Next time at the hospital, if you feel this strongly about something, don't beg for a test. Demand it. Don't let them brush you off. Blood sugar levels are quick and easy to check, it's not like you were demanding an MRI. Be reasonable, but be firm.

Hope you find some answers soon.

Your son needs medical attention! I think the ER doctors were negligent not to check his blood sugar. Type 1 diabetes is an autoimmune disease and it won't go ago. It will require Insulin to live. Sometimes people go through a 'honeymoon" phase where they make a little insulin and the symptoms can be misleading, but if they do have Type 1 diabetes then they will have to be on insulin. You can go to a store (grocery, drug, mass merchandiser) and buy a glucose meter and some strips and check his blood sugar. You don't need a prescription to get strips or a meter. Having a seizure is one of the severe effects of both high and low blood sugar and the treatment would be entirely different in each case. You need to see a capable pediatrician ASAP and have his blood sugar checked ASAP. I would not wait until you get back home.

I think part of the problem is that you are going to the ER. They are not going to do the testing you need. Their job is to deal with life and death emergencies or injuries and then recommend that you follow-up with your regular treating physician. I think you need to schedule an appointment at a doctor's office and then be real adamant about the testing for diabetes.

My niece, 13 years old, was just diagnosed. So much of what you described sounds like what she went through for 2 years before her doctor diagnosed her. She has Kaiser insurance - they do as little as they can for their members. Unfortunately, it has gone on long enough untreated that she has already suffered nerve damage in her legs and feet.

Please don't wait - call a pediatrician and get in ASAP.

C., I am so sorry that you and your son had to go through such trauma!!!

I am not trying to hurt the feelings of any medical professionals here who do actually understand Type 1 Diabetes, but my experience is that the general medical community is actually STUPID when it comes to T1D. My children and my husband all have Type 1 Diabetes and if we completely trusted ER doctors, nurses and our former pediatrician, both of our children would be dead right now. There is such lack of education, even in the medical community, concerning Type 1 Diabetes. I know this will offend many, but it's absolutely true.

Don't wait for another "episode". Go to a hospital and demand for your son to be tested. Don't buy a home testing kit! You don't have the time or the knowledge to monitor your son at home. I hope and pray that you are taking care of this today. If one doctor won't test your son, get another who will.

*Don't ask for just a finger stick. Testing for Type 1 Diabetes also involves a blood draw and a urine sample.

Finally.......my fervent hope is that your son doesn't have Type 1 Diabetes, but if he does, please feel free to private message me. My daughter was diagnosed at age 1 and my son was diagnosed at age 6.

Edit* I just read Elyse's ETA. EXCELLENT advice! I hope you don't have to do that, but please keep it in mind!!

Take him to a pediatrician where you are NOW. Stop calling your own pediatrician 3,000 miles away. Get online today with your insurance company and find their list of covered pediatric practices in the area where you are (assuming you are still within the United States) and then start calliing practices immediately and explain that your child needs an immediate blood test for type 1 diabetes.

You need to be far more aggressive with doctors wherever you end up going, ER or pediatrician. Please, please realize that one serious plunge in blood sugar could send your child into a fatal coma. We have type 1 in our family and it must be treated. I would simply plant myself at an ER or doctor's office and say, I am now demanding you test my child for diabetes.

Please do something today -- do NOT wait until his next seizure, or the next time his stomach hurts, or the next time he wakes up sweating and lethargic. It may be too late then. If you have diabetes in your family, you should know that it can be fatal. He should never be getting to the point of a seizure. I know you are scared because you're so far from home! We travel thousands of miles away every summer for weeks. But you cannot wait until you are back home to start getting him treatment if this is diabetes. If it is not -- you may have to consider going back home to start testing to find out what else is going on.

Have you been to a pediatrician (not an ER doctor)?
You should take him to a pediatrician on a regular basis.
If he IS diagnosed with a condition (seizures/epilepsy/diabetes/etc) you are going to have to work with the doctor on a regular basis and manage your child s medications.
In preparation for your appointment - record/video the attacks so the doctor can see what is going on.
He almost sounds like he had a febrile seizure and was running a high temp (along with being dehydrated).
They can spike a fever out of no where sometimes - my son use to alarm me sometimes - but if he was acting normal and the fever was gone in 30 min I learned to take it in stride.
Panicking and crying to an ER Dr isn't going to work.
You need to remain calm, cool, collected and act like you're a head nurse managing your patient.
Hard to do as a Mom sometimes but I've always managed to hold it together for my son's sake and then deal with my emotional response later on after I've handled/navigated a crisis.
Document his symptoms and work with a doctor that you see on a regular basis.
He/she will be able to work up a case history and be best able to find out what is going on.

I read this that you are on vacation not your son's pediatrician?

If so, I would call him ( even his on call dr.) and explain the situation. He can recommend what to do, where to go, and coordinate with a local physician.

As another person said, I would also video tape the episodes and document time, foods eaten, activity, etc.

I think I would start with an emergency call to your son's pediatrician or the doc covering for him if he is the one on vacation.

Or call your insurance for a referral to a local ped where you or at, or take him back to the hospital but demand to see the on call pediatrician there. Have a nurse document your requests for specific tests and a ped consult and then get a copy of those records.

Best of luck to you

ETA: if you have to take him to the ER again and they refuse to follow your Peds orders tell them you want it in writing that you requested this and they are refusing and do not leave until you have the documentation. I know it is the last thing on your mind but their treatment of you makes me so mad!

Get your doc to order you a blood kit, goodness, not that hard. You can get one through the pharmacy. Then you can take his blood sugar every few hours and get a good baseline.

He's probably having seizures due to his blood sugar dropping during the nights. If this happens again give him a spoonful or two of syrup.
Please follow your mommy instincts and get him seen by anyone that will take you seriously.
If you are on vacation for the rest of the summer maybe you can call your doctor at home and get his/her advice.

Does your doctor not have anyone else in his practice that could see your son? I wouldn't take him to a hospital unless it was specifically a children's hospital, I would be taking him to a pediatrician. I can't imagine yours went on a summer long vacation without having someone to cover his patients. Find out who that is and make an appointment ASAP.

I believe a CBC checks blood glucose levels. If his were elevated I would think the ER would have told you.

Get the CBC hard copy report from the hospital and see if your son's numbers are out of range.

Also...doesn't you doctor have a replacement /fill in during summer vacation?

Since you are so far away from your regular doctor, I wonder if an Urgent Care clinic might be able to help you better?

If they drew blood for a CBC, that should have also included the glucose level...

You should be able to get a copy of the lab work. Take that to an urgent care type of clinic and calmly tell them what has been happening.

Also, like others suggested call your regular pediatrician during the day and see what he says.