Waiting for Endo Appt

Hi! New here. My son is 5. I feel like many others think I’m worrying too much, but I don’t think so. I could use some outside people letting me know if I’m over worried or if I’m going in the right direction by pushing for answers. I’ll try to recap our journey shortly. A couple years ago we were sent to ER because of constant drinking g and peeing (o my one kidney so they didn’t want to chance an appt taking extra time). All lab work was normal at the time. Fast forward to about 8 weeks ago (we have a new pediatrician now too). He was having episodes of shakiness and pounding heart which juice and/or food helped so thought nothing of it until he had a morning that he was tripping on the stairs and crawling to the bathroom to get the trash can to puke and couldn’t get up and looked white as a ghost. After some juice and food he felt much better but pounding headache for a while. Right then I knew we needed to see dr but it was the weekend so I wanted to wait til Monday if possible. I didn’t have a glucose meter so no clue what his sugar was. My mother in law has one so she came over in the evening and checked and his sugar was 225. It came down so we monitored til Monday. His sugar was normal at dr, no ketones, and lab work all was fine. A1c of 5.2. Tracked sugar a few days but dr said she was “comfortable with it,” and left a diagnosis of hyperglycemia in his chart and said to make sure he’s eating protein and having a snack before bed.

I tried to let it go but he still complained of not feeling well at times. I just know there’s something more going on with him. Peeing tons, not sleeping well. Something was off. So I just checked when he asked or seemed off or didn’t feel well. All different Readings but three of 165, 175, 215 concerned me. After asking dr, she’s referred us to endocrinologist who wants us to track for 5 days 4-5 times a day. During this 5 day check (on day 4 today) his sugar seems to climb all day and by the before dinner check he’s anywhere from 130 to 160. The highs of 225, 215, 165, 175 were all from about that time as well.

I’m just really trying to prepare myself I guess and have someone help me know that I’m not crazy pushing for answers with these blood sugar readings. Does this seem like a possible diabetes diagnosis? Could he be in a honeymoon phase? Is there any disease that’s just hyperglycemia?

Thank you

Hi @Kmaatman welcome. You are doing the right thing keeping up with appointments and asking for several opinions. We aren’t medical professionals here, so no one can diagnose off a set of observations. I can tell you that generally, there are many many types of problems, including autoimmune diabetes, infection, inflammation, and others that can cause this but I would hesitate to google symptoms. You are already doing the right thing with the endocrinologist and that’s the very best thing you can do right now, in my opinion. Cheers and good luck :four_leaf_clover:

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Thank you. I do realize no one here can give medical advice. Just nice to know if others think I’m on the right track and to not feel like I’m “overreacting to something normal.”

Thank you for your words of encouragement. Hopefully in to the endocrinologist in a week or 2

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Hi Kim, and welcome. By all means you are not over reacting. You know your child better than anyone else. When you see signs or hear him say something isn’t right your motherly instincts are kicking in. You are doing what is right, don’t stop until you feel the situation is under control. It may take some time to figure it out but your mother bear protective instincts will prevail. If you don’t think that you’re getting the answers you need for your child, keep looking until you do. Make a journal of everything you are doing on a daily basis like; times, BGL’s, symptom’s, diet, etc. so if you have to go to different specialist’s you will have documentation of yours and your child’s path. Rest assured that no one can ever say you are doing too much when it comes to your little man, you’re his momma and he is depending on you to get answers. Fight the fight. There’s an old saying that can be adapted to this situation, what’s the difference between a mother with a child that has an illness and a Pitt Bull? Lipstick.

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Thank you. I feel like I have been fighting for him since day 1. Had to fight with GI to get a scope that gave us a diagnosis for all of those issues when he was nearly 2. Now more issues and having to fight more. Thanks for the reassurance.

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Echoing Joe and Bill — you are 100% doing the right thing by taking notes about what you’re seeing and following up with different doctors.

It was years of “well, she’s growing fine” from the pediatrician before we finally learned our daughter had celiac. But, funny, when we got the gluten out of her diet, all those symptoms I kept raising, that I had chased from specialist to specialist over the years, magically went away.

I don’t know what explains the things you’ve observed in your son, but if it were my kid, I’d be persistent in trying to find answers, too.

Hang in there!

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You are doing fine, remember “lipstick”.

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Oh, and FWIW, I got a diagnosis of “borderline hypoglycemic” as a kid. I do not have diabetes, but I had multiple episodes of what readers of this forum would probably recognize as “feeling low.” I quickly figured out it was curable with a glass of orange juice, and that I could head it off if I ate a granola bar or some peanut butter crackers before it got too bad. My mom said seeing me recover from those episodes was like watching a wilted flower get watered, which sounds exactly like what it looks like to me when my daughter comes back from a low.

Anyway, the point was that apparently there is such a thing as just hypoglycemia (or at least, I was told a lot of years ago that there is). Maybe there is just hyperglycemia, too. But you’re smart to keep at it until you get answers that make sense to you. He’s your son, and you’re doing what you can to keep him healthy because you love him. That’s a good thing. :blush: