I’ve been reading about both procedures and they sound like their nothing special and very safe tests. The most risk (as always) lies in the anesthesia. So, if he needs to get them done, I’d rather just get it done than not and he get worse and worse. The hardest part about any illness (imho) is just not knowing what it is. Once you figure out what it is…just deal with it and keep on trucking.
I’m referring now to the biopsies…not the actual diseases…those are tricker, more in-depth and more stress, hell, and more complex to treat and deal with. But if it is, then we’ll do what must be done.
While I don’t think the tests are unsafe, as you have pointed out the anesthesia is probably the worst part. At least in adults (my wife has similar issues, but no diabetes obviously) they use conscious sedation that is much lower risk than general anesthesia. A few years ago, this was typically accomplished with Diprivan (Propofol) and Versed (Midazolam). So the anesthesia may not be as bad as you are thinking.
On the parent side, I really feel for you guys. Diabetes is plenty of suck, adding more things on top just doesn’t seem fair. Please reach out if there is anything we can do for you and your family.
On the investigative side, please let us know how the Miralax works. All of the stool looseners have very little information about how much of their product affects blood sugar, and we have stayed away from these, since our problems haven’t been bad enough to use them.
Ive been scoped twice (actually three times if you count the top end) twice with propofol once with versed… I don’t know where on the anesthesia spectrum they fall but for myself neither were a big deal at all… I’m sure I’d feel differently if it was my little kid though
He had his first 17g Miralax + 1 Ex-lax at 2PM and so far nothing notable at all as far as BG’s go. He’s been around 120 since 1PM. I’ll keep you posted if I begin noticing anything out of the ordinary, spikes and what have you.
Noticed that ingredients include cocoa powder and sugar in the Miralax, though.
On the adult side those are commonly used anesthesia drugs. They are also often used together since Diprivan makes you sleepy and Versed makes you forget. Both are great because they have a very short 1/2 life so the person delivering the anesthesia can tailor them very effectively. Not sure however, what they use for kids. Pediatric approaches to anesthesia are often quite different. The good news, is you are much more likely to get the anesthesia delivered by an anesthesiologist rather than nurse.
Yeah, the first two were in the hospital OR with a certified nurse anesthetist doing the propofol (certified nurse anesthetist are for all practical purposes anesthesiologists and are much closer to doctors than they are to nurses…) and the other was in a surgical clinic with an ordinary RN doing the versed/ diprovan combo with the surgeon supervising. As an adult I’d personally rather do something like that in the clinic because it was less fuss and costs less… if it were my child id want it done in an OR
IF I were you I’d request that a pediatric anesthesiologist is the one administering the anesthesia for the surgery if you do go that route. Our oldest son had an adenoidectomy at age 1 and had what’s called a laryngospasm, a potentially deadly complication where his throat closed up and they had to put the breathing tube back in after surgery. He subsequently had an uneventful second surgery at age 3, and our ENT said it was likely that the first anesthesiologist wasn’t familiar with some of the subtleties of anesthesia administration in the very young, whichi s why the laryngospasm occurred.
Overall, studies don’t suggest any long-term side effects from anesthesia in little ones though, so that’s reassuring.
Completely understand this right now - my daughter’s issues continue (and have added another potential symptom), and the not knowing is hard. I was reading about the endoscopy for celiac testing, and it sounded like they more commonly use conscious sedation, and the endoscopy is very quick, average of 15 minutes. I had an endoscopy (for heart, not gut) at…14? 15? Honestly, don’t even remember, it was so uneventful, though of course I don’t remember a thing from the procedure itself because of the meds (they used conscious sedation).
It’s good to have a plan in action, though. Will be praying for good results. My niece (a newborn) was recently tested for Hirschsprung, and she didn’t have it - hope the same is true for Liam!
My wife and I have decided that, at least for now, we are not going to use the Dex4 tablets any longer. Because they cause runny stools, it’s obvious they interfere with gut processes…we aren’t certain, but those tablets certainly aren’t helping. So we’ll use milk, juice and candies from now on (he likes skittles more anyway.)
Well if the loose stools are a byproduct of the hard compacted ones, and dex tabs cause loose stools, wouldn’t they actually be helping the situation? Just like miralax?
Only, they haven’t been. If that were the case, he wouldn’t have such severe constipation right now because those tablets would be loosening the stools. We believe (no facts to back this up, but we just believe) that, somehow…because there is some interference in his gut as a result of the tablets, that perhaps they are starting some domino effect that ultimately is resulting in the severe constipation that we’re witnessing right now.
Again, no facts…just a gut feeling. As with everything, it’s something we are just going to test for a few months to see if this clears up. They could have nothing to do with each other…but we aren’t so sure, so we’re just going to test until we’re certain they’re not, in any way, impacting the gut processes that should be occurring.
If we find no connection, we’ll add them back I’m sure, but since there are plenty of other “low treatments” that don’t have this side effect, we’ll just get rid of them for a while.
Claude, I just caught your thread. Pediatric GI specialists have told me that, likely for nutrition reasons, constipation in children has become a giant issue. In fact, there are even psych services that focus on constipation.
Both of my kids were on Miralax for a while, one of them for three (3!) years. As it is essentially an inert material, I do not think it should have a significant impact on BG, but, of course, diabetes is such a weird disease that it could well have in your child’s case. I am betting (and hoping) it won’t!
I looked through the entire thread and didn’t see anything about hydrating. Is he getting a good amount of water everyday? Dehydration can cause all kinds of GI issues.
We all need to get better with this in my house. He drinks milk and water, but not nearly as much water as he should probably be drinking. But try to get a 3 year old to do something they want to do and see how that goes…that’s 99% of our battles right now.
Almost everyone probably needs to drink more water.
Drinking more water is something that can help constipation.
There was a post on FUD recently about hydration. There are no set rules for how much you need, it really depends on how much you are losing, but a very general rule-of-thumb is divide your body weight in half and drink that many ounces. (Again, just a rule-of-thumb, not the same for everyone.)
Can you use something like Mio drops (I’d stick to the ones without added vitamins and other crap) to make the water more appealing without adding calories? I wouldn’t do it all the time, since you want him to be in the habit of also drinking plain water, but might be able to get some extra in that way and have it be a treat.
So, if Liam is 35 pounds, he should drink 35 ounces? I doubt we could ever get him to drink that much per day. That’s nearly 4 1/2 cups full. We’re lucky to get him to drink 1/2 - 1 cup per day honestly.
That’s nearly 4 1/2 cups full. We’re lucky to get him to drink 1/2 - 1 cup per day honestly.