I am so thoroughly confused about what is going on with my daughter. Four months ago I started to notice that my daughter (scarlette) had begun to ask for a drink about every five minutes and immediately drank the entire cup (8oz) then cry and beg for more. She also began peeing every ten minutes or so. She began to complain of stomach pain and and wouldnt eat very much. At this point I knew something was wrong, I have a family history maternal+paternal type 2 diabetes so I knew what it suggested, I brought it up to my mom (she has type 2) and she agreed and brought her meter to check Scarlettes bg it read 246. After calling her pcp, she suggested we go to ER. They took blood samples but didn’t check her bg on a monitor even after showing them the reading on my mom’s. The blood sample showed it reading 181 but it also showed that she had a low carbon dioxide level so they admitted her for metabolic acidosis. They didn’t do anything during the stay regarding the blood sugar levels they just released her pending a referral to a nephrologist. The only thing they said what that it read high because of the metabolic acidosis. Fast forward five days I get another high reading 250 pcp says to ER we go again. This time they didn’t even get a sample of blood for seven hours, no bg test nothing. Her level when they finally checked it was 167. They told us it was normal. But they discharged us with her own bg monitor and ketone strip and advised us not to come back unless bg was 350 and ketones were present. Three days later she had another 260s reading this time she had become extremely lethargic so just to be safe I checked ketones and the were in the darkest color indicating high… I took her back to the er where they agreed she had high ketones with a “higher than normal” bg. As well as a low carbon dioxide level again. But they discharged her anyway pending referrals to both endocrinology and a nephrologist. A week ago she had a water deprivation test performed i
As an outpatient procedure to check her kidney function where she had to fast for 16 hours total, her bg dropped to 58. Since this test she has been running low (60s-70s) or high 181,156,178,135, to name a few. I have been on the phone all day everyday with insurance and pcp’s patient referral coordinator trying to push a referral to endo through, it has been denied twice. Yesterday it was finally approved now we are just waiting on insurance to find a contracted endocrinologist to send her too. I don’t understand what is going on, no one has said anything other than she has hyperglycemia.
go back to the hospital, your daughter is more that likely T1/pancreatitis type stuff and is in DKA…she needs urgent care, she will more than likely be admitted. jump up and down and demand to see an endo called in.
for a child, it’s BG over 10/180 and ketones over 1.5 is a hospital trip.
It sounds like T1, why won’t they test for it? Because of insurance issues? It just takes a draw of blood. Can your PCP order it? I agree with jack16, you might need to raise a ruckus.
they should have an endo on call at the hospital. I wouldn’t wait till tomorrow or a future appointment…if it costs money, it costs money, it’s that important in my opinion
I wouldn’t give sugars fruit/juice or starches till this is sorted out, …eat leafy veg, proteins and fats
It can be very difficult navigating healthcare. Healthcare providers are not there to necessarily help you, they are there to provide a service and charge you a fee. And the ER isn’t there to diagnose and./or treat diabetes, they are just there to stabilize you, refer you to someone else and send you home.
You have gotten some good advice. What you daughter needs now is an endocrinologist. Unfortunately many endos book up appointments months in advance and will tell you to come back in June. You really, really need to communicate that this is an emergency. Don’t take no for an answer, ask to wait list, offer to go sit in their office. And I don’t know what area you are in but in my area there are many of them and I know my endo has Saturday hours. I know what would happen if you called up my endo and said my 3 year old has diabetes and just got out of the ER with DKA, please, please see her right away. You would be seen right away, my endo would make her other patients wait.
And if you can’t find an endo in your area then go back to the hospital. Ask for the ombudsmen or an administrator and explain that you were sent home twice when you daughters health is clearly at risk, that you believe the ER messed up and demand to be seen by one of the endochronology staff.
Now is the time for you to be a champion for your daughter. Don’t take no for an answer. Ask everyone for help.
ps. If you let us know what area we live in our community might be able to suggest endos that could help.
I totally agree with @Brian_BSC. DKA is very very serious. DKA can kill. Make sure she gets plenty of water, no juice. Please let us know what happens today. Our thoughts and prayers are with you.
Brian is absolutely correct. This is not routine and it CANNOT wait. A child in DKA is a child at very serious short term risk. You need to break down doors if that’s what it takes to get your daughter healthy.
We live I Sacramento. U C davis is the hospital I have been taking her, the only children’s hospital near me. The thing that has stumped everyone I is when I take her in when she has a Hugh with ketones they monitor her and ketones go down. One Dr has said that she could possibly be in the honeymoon stage. Any recommendations as far as endocrinologists around us would be great. We are prepared to pay out of pocket to see one to avoid the huge wait because of insurance.
Honeymoon is one possible explanation, and there are others. But right now the priority has to be getting her diagnosed and stabilized.
UC Davis has a large endocrinology practice in Sacramento. A large list of endocrinologists in Sacramento can be found here.
Thank you! I will start calling them.
of course it’s the weekend and doubtful anyone will be there to answer the phone. What is your plan @Mama_padi? I am very concerned, as we have actually lost members here to DKA.
Manny! 
I KNOW. This actually happened not long after I joined in 2008 I think, and it absolutely was devastating. She was a young mom to 2 little girls.
She doesn’t have ketones in her urine today i have been monitoring them consistantly.
The main thing the ER treats with is fluids- saline sometimes with glucose, most of the time not with glucose- “Lactated Ringers.” You need to keep your daughter very well hydrated in the mean time. You need to be annoying about it. She might hate you bugging her about drinking fluids, I know my kids do when they are sick, but you need to. If her blood sugar is all over the place, maybe stick to sugar free gaterade/pedialite/poweraid. Not sure if you remember the other meds they treated her with, but most of the time its just fluids and then they street you- let you go. Most people can do this on their own but with the potential risk for DKA, monitoring her ketones and BGs is the best strategy. I really do hope everything clears with insurance so you can your daughter the proper testing.
You are in my thoughts and prayers.
Busybee
can you try ZocDoc for reference to see if any docs that are in ZocDoc have availability? Not all docs are on Zocdoc and you may have to actually call them…
I didnt find any in Sacremento - did a general search , but found some docs with availability this week in Lemon hill,CA
https://www.zocdoc.com/endocrinologists/lemon-hill-ca-278219pm
Again, This is me just trying out a few options online since all doc offices for scheduling Appts are usually closed on weekends…
I am looking now thank you!
The problem we’ve been having the past two days is hydration, she has been drink water excessively but she’s still dehydrated. We are alternating between water and sugar free pedialite but her level keep dropping to the 60s. how should I correct this? I have been doing one juice box but it jumps to 170-180.
This may sound like a dumb question, but how do you know your daughter is dehydrated? What symptoms are you going off of?
For kids, a good indication is if they cry and no tears are developing thats a symptom or dry mouth is another. The reason I ask, is the diabetic symptoms may complicate the dehydration symptoms.
I am floored to no end that your child’s pediatrician hasn’t stepped in by now with testing. This seems utterly ridiculous for both of you to go through.
I am so sorry that you are going through this right now. It sounds like you are doing a great job of staying on top of this. Keep up the hard work!
Busybee