Mathilda and Maverick
Member Since 2020
We are in Maryland, USA.
I'm at a loss again with Maverick. He had relatively good number for a while and managed to stay away from ketones for about 3 months but now numbers are going out the roof again and ketones coming back on a regular. I haven't been posting here for many months because it gives me so much anxiety, and as he been regulated and we had a very good specialist I've felt comfortable with our situation. Well, the specialist moved, his food in the specific taste is nowhere to be found, his BG is increasing, ketones are coming back, and I am starting to loose hope. His RBC has gone down from 45 to 36 since December, and last time he got anemic it happened very fast. New specialist wants to do a new ultrasound, have me give 100mls SubQ fluids once a week for his kidneys, and put a libre on him to closely monitor his trends in hope to figure out the causes of the ketones. She had me stop the blood thinner meds, but keep the budensonide.
Good thing is that his weight is still stabile, I have always been able to fight off the ketones with SubQ fluids.
We think that Maverick gets ketones as a response to pancreas flares. I have had a suspicion that he may be allergic to chicken- that that his IBD may have been triggered by allergens. However, for over a year he's been doing good at Castor and Pullox Organix pate Turkey flavor, which contain chicken. A few weeks back, we had to change to the chicken flavor in the very same brand, so he is currently on both flavors, but will change full-time when we run out of the turkey as we can not find it to purchase anymore. The reason we are sticking with the brand is their relatively low carbs and phosphorus (as he also has kidney issues). Now, the last few weeks he has had elevated BG and I'm worrying it's due to the food, or if he has another infection of some kind I can't pinn point as the blood panels looks pretty good.
He gets Lantus 3U BID, is it time to increase? I'd worry with increasing as his numbers are all over the map and can drop very fast. The issue we have ran into before is that he'll start to bounce. Specialist suggested the libre to be able to monitor him better so we can increase insulin, but I'm hesitant as I know wearing the libre and a onesie will stress him out more, but I also can't check on him throughout the night anymore as I don't get any sleep as is with baby and toddler.
We have the ultrasound scheduled for Monday, but I'm considering postpone it. It's a drop off at 8AM when specialist will check him and then the ultrasound technician won't be there before 12AM- Maverick will be seen then or after potential emergencies. Obviously they want him to fast, but that makes me worried as he normally eats 3 snacks throughout the night. I don't want him to go into hypo at the hospital, and I don't want him not to eat now that the BG is so high and risk DKA.
Sorry for long post, just wanted to give some background info. Any suggestions, input, brainstorming, and help are welcome, I really don't know what to do. TIA!
I'm at a loss again with Maverick. He had relatively good number for a while and managed to stay away from ketones for about 3 months but now numbers are going out the roof again and ketones coming back on a regular. I haven't been posting here for many months because it gives me so much anxiety, and as he been regulated and we had a very good specialist I've felt comfortable with our situation. Well, the specialist moved, his food in the specific taste is nowhere to be found, his BG is increasing, ketones are coming back, and I am starting to loose hope. His RBC has gone down from 45 to 36 since December, and last time he got anemic it happened very fast. New specialist wants to do a new ultrasound, have me give 100mls SubQ fluids once a week for his kidneys, and put a libre on him to closely monitor his trends in hope to figure out the causes of the ketones. She had me stop the blood thinner meds, but keep the budensonide.
Good thing is that his weight is still stabile, I have always been able to fight off the ketones with SubQ fluids.
We think that Maverick gets ketones as a response to pancreas flares. I have had a suspicion that he may be allergic to chicken- that that his IBD may have been triggered by allergens. However, for over a year he's been doing good at Castor and Pullox Organix pate Turkey flavor, which contain chicken. A few weeks back, we had to change to the chicken flavor in the very same brand, so he is currently on both flavors, but will change full-time when we run out of the turkey as we can not find it to purchase anymore. The reason we are sticking with the brand is their relatively low carbs and phosphorus (as he also has kidney issues). Now, the last few weeks he has had elevated BG and I'm worrying it's due to the food, or if he has another infection of some kind I can't pinn point as the blood panels looks pretty good.
He gets Lantus 3U BID, is it time to increase? I'd worry with increasing as his numbers are all over the map and can drop very fast. The issue we have ran into before is that he'll start to bounce. Specialist suggested the libre to be able to monitor him better so we can increase insulin, but I'm hesitant as I know wearing the libre and a onesie will stress him out more, but I also can't check on him throughout the night anymore as I don't get any sleep as is with baby and toddler.
We have the ultrasound scheduled for Monday, but I'm considering postpone it. It's a drop off at 8AM when specialist will check him and then the ultrasound technician won't be there before 12AM- Maverick will be seen then or after potential emergencies. Obviously they want him to fast, but that makes me worried as he normally eats 3 snacks throughout the night. I don't want him to go into hypo at the hospital, and I don't want him not to eat now that the BG is so high and risk DKA.
Sorry for long post, just wanted to give some background info. Any suggestions, input, brainstorming, and help are welcome, I really don't know what to do. TIA!