Her mouth and lips are very dry, she’s not peeing nearly as much as she was three days ago. Her pee has a strange smell to it not sweet but sort of like ammonia. She has no energy and is really cranky. She has an appt on Monday with her PCP, but if this continues I’ll be taking to er.
Her PCP is a really sweet lady, she seems genuinely concerned but has outright said that she really has no experience with diabetes. She’s pushing hard with insurance and the referral coordinator to get her to endo. What tests can she run? I’m sure if I ask her to run a specific test she will.
The tests I’ve had and others have had are:
A1c, c-peptide level, gad65 and other auto antibody testing, and maybe thyroid panel just for good measure.
These tests are usually completed by an endo, but I’ve had my kids’ pediatrician do a couple of these tests and they did it gladly knowing that I’m a type 1.
Keep pushing with insurance and the referral coordinator. Your daughter should see an endo.
Busybee
I’m not sure what insurance challenges you face, but Sacramento has always seemed to me to be the medical Mecca of the entire US west coast. There are dozens of highly qualified endocrinologists there, and every other medical specialty— so I want you to be assured that the resources you need are nearby. I know as well as anyone, and unfortunately better than most, the torment that insurance approvals etc can place on a parents life. my advice is to find a good pediatric endocrinologist in Sacramento. Between UC Davis, Methodist, mercy, and Kaiser, and countless private practices, there are no shortage of them. Make an appointment with or without insurance approval— let the clerical people worry about those details. Keep your fingers crossed that insurance will not screw you over, but they can’t screw you over near as bad as type 1 diabetes can.
Please don’t give her fruit juice, when you aren’t on insulin 60 isn’t low and it is in normal range… Under 50 starts to get hypo.
also please don’t give starches. grain cereal, pasta bread rice potato etc, till it’s sorted out.
the reason I suggest this is because she still has some insulin and this will allow her to cope the best.
Before insulin this is how diabetes was treated to get a few years… just protein fats and low carb veg
Dear mama-padi,
I know you are seeking an endo for your daughter and I understand that because she is experiencing some diabetes symptoms and troubles. You talk about her PCP and the lack of proper care, ability, and advice.
Your daughter should really be seeing a Pediatric Physician, and one who can and will refer / work with an Endocrinologist. Your insurance should have no trouble referring one that is in their preferred list.
I know you are struggling with finding answers, and others have already warned the dangers of DKA, and you are testing her. Do not hesitate to take your daughter to the ER if she is in pain, has trouble breathing, a fever, has fruity breath regardless of her ketone measure. AND most certainly if you measure the ketones are high. I am wishing wellness and answers on your kiddo and on you.
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I would add nausea or vomiting to that list.
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I am taking her in to er now. Ketones are high but her sugar is 91.
My son was diagnosed T1D in October after a sightly similar experience. He turned 3 last August. In august he started urinating often and became excesively thirsty. The blood work for his 3 year checkup happened to be around this time. The results showed glucose in urine but his blood level wasn’t high. With those symptoms and the inconclusive test we were told to go to ER immediately. Test were run and everything was normal, blood glucose was 59 when though he was still symptomatic. With no other explanation for the symptoms and normal test they said it was maybe nerves since I was expecting our second child. Fast forward a month later, my son lost weight, started complaining of stomach pain, etc. We took him to urgent care where he was in DKA. Blood levels were almost 600 when we got to the ER.
I say all that to say in the early stages blood levels can still be normal at times, which was our experience with our 3 year old. But if your child has ketones, push water and Gatorade for hydration. DKA requires hospitalization as far as I understand. Good luck and I hope your daughter feels well again soon.
My sons urine used to smell like ammonia. I can’t remember if it stopped right after diagnosis or not. It can be a symptom of diabetes, but it could also be dehydration.