Child waiting diagnosis

Just a concerned parent. He is an 8 year old. He does have an endocrinologist appointment in two weeks. A little back ground. He got his a1c tested in December with standard blood work as he is taking medication for autism and adhd. The only concerning things that came back was slightly low vitamin D and a1c of 5.8. Prescribing doctor had us do a follow up appointment with his pcp where his blood sugar was 128 5 hours post 1/4 of a soda to take medication with. She referred us to the endo. Now he has gotten the flu and he was delirious yesterday with a blood sugar check of 389 at home. I took him to the local er and quick draw for blood work a CMP showed normal everything besides blood sugar of 400. They pushed a lot of fluids and 2 hours later he did drop down to 101 which the er was happy with but still concerned(?). I guess I am just looking support or any information that may help us while we wait on his appointment.
He has an aunt that is type 1 and a grandmother who is type 2.

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We have a gentleman in town here who has two kids with type 1 diabetes and I believe that only one of the two has autism. He swears by the Omnipod 5. That is the insulin pump with a Dexcom continuous glucose monitor (thatā€™s the reliable monitor) and that has some automated functionality. That might be a little too complicated to operate, upfront. But that might be where you are headed down the line.

I recommend the juice box podcast for now. It was created by the father of a daughter with T1. JUICEBOXPODCAST.com

Also, this community is great for questions.

Hang in there. Also, You did a great job catching the problem rapidly. That helps. When I was a kid, I lost 20 lbs before anyone thought to take me to the Doc. You did great.

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Iā€™m sorry to hear that and it does sound concerning. I would call the endo on Monday and tell them what happened and push to get him in earlier. Keep watching his bs and document so you can share with the endo.

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Iā€™ll just introduce you to Juicebox podcast with this episode (one of our members here, Terry4): #349 Terry lives in a House ā€” JUICEBOXPODCAST.com It never hurts to get to know the internet community and who you are speaking to online. There are many parents of diabetic children here.

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I am hoping so! Definitely been stressful lately.

How often should I be testing him?

If the endocrinologist does diagnose him with Type 1 diabetes (which sounds like itā€™s still an open question), request information about medications that can delay its progression.

https://www.niaid.nih.gov/research/drug-delaying-type-1-diabetes

Iā€™m sorry. This must be a very stressful time.

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I would put him on a four hour schedule during waking hours and once per night overnight. Alternatively ask your PCP to put him on a dexcom which is much better. What you are trying to do is get a record for for your endo. So far, I would call the results mixed, except for the 383 - 400 which looks like T1. The other numbers you quoted are likely small anomalies that woudl not cause much concern.

That is what i would do if he were my grandson.

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I agree that results are mixed. Heā€™s not showing the signs my sister did or others that had their littles diagnosed. So I think there is something going on, I just not confident on what that may be.

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It does sound like T1 is likely. It doesnā€™t sound like ā€œmixed resultsā€ to me, with a HbA1c over 5.4, sporadic high blood sugars, a family history, and heā€™s at a very common age for diagnosis. I was also diagnosed at 8. But the good news is that itā€™s a very slow progressive condition. Heā€™ll be in the honeymoon phase for a few years, give or take, where heā€™s still able to make his own insulin. Thatā€™s why his blood sugar did come back down on his own.

High blood sugars donā€™t do much short term harm, and his HbA1c is still ideal for a diabetic, so donā€™t be overly worried about those short forays into high blood sugars. Diabetic complications develop after many, many years of running high blood sugars. Itā€™s not having any insulin in his body that causes the really scary stuff, and heā€™s still making insulin, so thatā€™s not something to worry about. Iā€™m not trying to minimize what youā€™re going through. Iā€™m sure itā€™s frightening and possibly overwhelming. Iā€™m just trying to help you see why medical providers arenā€™t rushing, because they know heā€™s not in any immediate danger.

Weā€™re prone to run high on sick days, so itā€™s not too surprising the flu spiked him high. You shouldnā€™t see another event like that so long as the bug has passed. The best thing you can do right now is to make sure heā€™s really well hydrated, even if heā€™s peeing constantly. Thatā€™s a good thing. Thatā€™s his body trying to get rid of excess sugar. And of course, watch the carbs. He should be able to resume mostly normal eating once heā€™s on insulin, but until then take it easy on sugary drinks, breads, pastas, fruit, and sweets. Also, start reading up, listening, and watching videos on T1. Education is everything. One of my favorite sources is TCOYD. 2 of the participating Endos in that group are T1 diabetics themselves, and theyā€™re really good at presenting info in an approachable way thatā€™s easy to digest. Thereā€™s another one called Diabetes Connections, which featured a mom of a T1 child. The channel started when the kiddo was young, but heā€™s all grown up and off to college now. Sheā€™s been through everything youā€™re going through now. She also hosts Momā€™s Night Out events all over the US for moms of T1 children to get together and form a support system. Both TCOYD and Diabetes Connections have podcasts, their own websites, and are on YouTube.

His new Endo should definitely know about the hospitalization, though. They might be able to get him in sooner. Or at the very least, check in with you by phone for advice.

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I think Robyn H has a good point it could be a slow onset. Regardless, the way to get to the bottom of it is to purchase a sensor. Get a Dexcom G7 or Freestyle sensor. Both are ten day wear sensor, and both use an Iphone or Andriod app for recording the blood sugars. A ten day wear will be plenty until you see the Endo.

Now, also be sure you have a blood sugar testing device and double check highs at least for the first day.

Finally and i cannot stress this enough, if he gets above 200 and rising, get him to an ER. You must prevent a DKA, that is dangerous and if it is sustained, can be deadly.

Ask your doc if she wants that threshold to be 200 or 150, or 250, or whatever it is abide by it. 400 would scare the heck out of me, and you did the right thing by taking him in.

I am hopeful it is nto diabetes, but if it is, he can thrive, Many prayers

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I also agree with Tnyc, if he is int he honeymoon period see if the endo can buy some time with immuno suppressants. You will likely need to get to a university or teaching hospital for them to try it. If I could have gotten on more day without being a PWD, I woudl have done it. In some cases these days they are getting 2-5 years and it is getting better.

Your endo should be able to advise.

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Iā€™m sorry, I know youā€™re coming from a good place and trying to be helpful, but I donā€™t think this is good advice. Itā€™s unsubstantiated fear mongering.

It is highly likely he WILL go over 200 and be in absolutely no danger of DKA. DKA is caused by not having insulin, not high blood sugar. Heā€™s still making insulin. He wouldnā€™t have been able to recover from the 300+ blood sugars if he werenā€™t making insulin.

Well experienced T1s go over 200 all the time and donā€™t go running off to the hospital. Itā€™s perfectly normal. The American Diabetes Associationā€™s recommended guidelines allow us to spend 30% of the day over 180 without fear of complications. 200 is just over the threshold where we start spilling glucose into the urine and is not a frightening number.

So long as the child is making insulin, he does not have the same threat of DKA the rest of us T1s do. He just needs monitored.

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Getting a CGM seems like a lot to me at this stressful time. Why not just get urine strips to test for ketones?
Like most people here, I would think, I was diagnosed because I was in DKA. But, these days, arenā€™t there blood tests for Type 1 antibodies?
Iā€™d say, get the earliest endocrinologist appointment and be pushy about it. In the meantime, test for ketones (test strips available at every pharmacy no prescription required) and call the pediatrician right away if he seems not be doing well or ketones are elevated.

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I agree that itā€™s not an emergency situation outside of the incident the morning of taking him to the hospital. I did already push to move his appointment up from April to this February appointment prior to this weekend events. Due to his medication and behaviors he has been showing since October I did not feel comfortable adjusting one protocol when there might be an underlying medical condition so they agreed to get him in sooner.

The hospital did call me today to set up another follow up appointment concerning his numbers but I am assuming it is okay to wait the 2 weeks till the initial endocrinologist appointment or should I still take him to this follow up as well?

I am trying to avoid aggravating my sonā€™s fear of hospital/dr offices. As they are high anxiety areas for him without being able to fully work with him to prepare for the appointment and makes for extra hands to get the appointment stuff done. Trying to balance new information and getting him seen when needed and his other needs is difficult.
(One frazzled parent)

Hi Sherrie, youā€™ve got my sympathies too, not knowing is tough. If you want some suggestions from a T1D on where to go from hereā€¦

  1. Call the hospital and ask what is the on the agenda for the appointment because A. you need to prepare your kid and B. you already have an endo appointment scheduled and thereā€™s not point coming in if that is all they are going to say to do.
  2. Get the hospital to send the medical record of the ER visit to both your childā€™s PCP and the endo. Contact both offices and ask them to review the record and determine if an appointment needs to be made sooner.
  3. Since Iā€™m a T1D I admit all blood sugar problems look like diabetes to me because that is what I know so consider that with my last suggestion, either call his PCP and get a prescription for a CGM like a Dexcom G7. If thatā€™ll take too long because of insurance and $100 is affordable then the Dexcom Stelo is an option. I got one for my sister to try and it arrived less than 24 hours after I ordered it. A CGM is device that puts a tiny sensor under the skin attached to little device that then records blood sugar readings automatically for over a week so the endo will have some info on just how normal or not normal your sonā€™s blood sugars are. Also maybe try to avoid the liquid sugars like regular soda, juice and sports drinks till the endo appt.

I might have had a two week honeymoon period but no way my poor pancreas could deal with my sweet tooth and instead I was miserable until I was diagnosed. Glad your son is having an easier time.

-Chris

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Mention of ā€œthe flu,ā€ also makes me think T1. T1 often presents as ā€˜the flu.ā€™ It also presents more commonly at this time of year. Call me superstitious about the seasons and the weather (like every Minnesotan), but the cold snowy months produce a high incidence of ā€œkids with the flu,ā€ who are actually T1 diabetics. It triggers my ā€œSpidey sense.ā€

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You can get a lot of great support on this forum. Definitely sounds like T1. It can be hard to see a doc these days however given your experience recently and those BGā€™s you maybe could push for a fast appointment. Meanwhile check his BGs yourself every 4 hrs (or more if you are in doubt) and write down the numbers including date/time of day/and any other symptoms. The person who mentioned DKA is also correct in stating this. DKA requires immediate treatment. Hang in there. Push for what is needed.

Also, with T1 you must have insulin ā€” ASAP

I was diagnosed at 12 and am 65 this year. Thereā€™s light at the end of the scary tunnel! Insulin pumps and CGMs are better than ever.
I did go to the Joslyn Diabetes Hospital long ago and it was wonderful for training. Itā€™s a full time job at first but it gets better.