I have been silently stalking this forum for a few months now, just taking in all the knowledge and experience that it has to offer but yesterday something happened that has me wanting to vent to people who might understand. Sorry about how long this is, it is a few months of pent-up frustration :).
Background: My 8-year-old stepdaughter was dx T1d at the end of January 2022. Her target range is set to be between 80 - 130 mg/dl. Her carb count at our house is currently 1/6 at breakfast due to what we think is possibly the Dawn Phenomenon and then lunch and dinner have been 1/7. At our house we try to keep her meals within the daily 130g so typically 0-20g at breakfast, 40-50g at lunch and dinner. My husband and I both said we want to try to keep her below 250 mg/dl, so if she begins going close to that and we have recently given her insulin for a meal, we have her drink water or we go for a walk or something to get her numbers to stabilize and go back down. My stepdaughter learned to ride her bike this last weekend, so we have been doing a lot of riding. We are currently in the process of figuring out how to adjust our carbs/insulin to account for that, so she doesn’t dip low. We feel we have a pretty good handle on her diabetes treatment and if we had her all the time that we could possibly reach the 70% in range that the dr wants. Here is the frustrating side. At her mom’s house the carbs are all over the place, we have received phone calls asking about how to calculate for a dinner that was 130g, it was some meal from Sonic with a slush. Despite our immediate red flag reaction, we help her figure out the carb/insulin ratio from the information we are given and pray that it is correct. A few weeks ago, her mom got upset at her post-diagnosed dr’s office because she needed to reschedule her follow-up for this month, and they were booked so they said it would be July before they could get her in. So, she asked my husband about it, and he suggested that if she wanted to change drs, to do some research and try some out before committing. So yesterday was an appointment with a new dr. My husband went to the appointment and what he said has us irritated. The dr asked them what they do to treat a high, I think it was regarding a specific high as he was reviewing her charts. My husband said, at our house we have her drink water. Her mom already thinks it doesn’t do anything and that Zero sugar Propel or Gatorade are better because Facebook said so. This dr told him that drinking water does nothing. My husband quickly said that he disagrees because he knows for a fact that water will help bring her numbers down. So, the dr placated him and said well I guess from a dilution aspect. Well duh. The dr said insulin is his recommendation for treating highs. The part of the information that was left out was that when the high occurred she had already been given insulin and was still rising. The dr didn’t ask much about foods out side of breakfast and said that any carb amount can be put into the pump and the pump will take care of the rest. She doesn’t have a pump yet, so to me that was him pushing for them to get a pump instead of learning how to eat correctly. He also so said he wasn’t concerned about hypos and that you should always correct 100/100. I’m hoping he is only saying that about the brief dips she has and not about hypos in general. I’ve read enough and have had experience with drs enough to know that more than likely his comments are just bad bedside manner and if he would have had full context and accurate information that he might would have stated his responses differently. Of course, her mom likes him because he essentially justified her arguments that water doesn’t do anything and that the insulin ratio are off not the kind of foods, she is feeding her. My stepdaughter looked at her dad after the dr mentioned the water and asked “then why do you have me drink water?” which I know made him furious at the dr. So, this morning, we feel that the small gain we had made at trying to get her mom to keep her numbers lower just got obliterated and we are back at the starting line. I’m not looking for medical advice, I just needed to get this off my chest and reset my emotional meter so that we can try to deal with what lies ahead with a clear mind. I don’t know if they will be switching to that dr for treatment or if she plans to keep checking drs or what, but this stepmom is seeing red flags and wants to have a few words with that dr ;).
H gave a brochure for the Camp Enders here in Oklahoma that cost $680 for her to go for a week. Although it’s a lot of money and will fall on our week with her I think it might be a good idea for my stepdaughter to be around other kids with T1d, and hopefully that will help with her fears of the changing of sensors. That one reason we haven’t looked hard at a pump because it is already a struggle just to change the Dexcom every 10 days.
Thank you for listening to this rant. My husband and I are just mentally exhausted.