hypoglycemia

[benjamins mom]

Hi. Is anyone's child having hypoglycemic episodes? If so, I'd like to discuss management of it with you. Thanks! :-)carrie

[benjamins mom]

Thanks KJ. I'm just worried about the overnight fasting, combined with the fear that he may have eaten some fructose during the day that I wasn't aware of which will make his glucose levels drop without any warning to me. He's 3 and his intake is pretty much in my control. However, as careful and strict that I am, accidental overdoses seem to happen occassionally. He wakes up in the morning enough for me to know he is alive....but he's pretty much near unconscious until I syringe the unflavored pedialyte into his mouth. When it comes without warning...when I have no idea what he ate that triggered such a reaction, I become frustrated and full of worry. He's pretty good about his diet and letting others know that he can only have his own food. Still, I worry that he will sneak something big someday at school or wherever when I'm not around, and his glucose levels will bottom out during the night and he'll have a seizure...or something worse. Do you have those fears? Do you think the big bedtime snacks with protein/fat would prevent any adverse reactions in the middle of the night even if he had something totally not allowed, like real candy?
I recently saw an endocronologist who gave me a glucometer. My plan is to get his baseline sugar level between 11 pm and midnight for a couple weeks. Am I crazy to then check his levels every night--or at least the nights after he has been out of my sight during the day-- in hopes to catch a drop in sugar, so I can then wake him up if need be to eat. I dont' feel like anyone else does this and I am 'over-reacting', but I really don't like hypoglycemic surprises! thanks!! carrie

[Benjamins mom]

Wow, KJ. Thank you so much for all of your advice!! Lots to process here....but that's a good thing! Ben is allergic to milk, but he seems to tolerate natural peanut butter, so I've been giving him that before bedtime on crackers. Of course, I wonder about the fructose content of the peanut butter, but he seems fine with it. He's been eating it for a while and his liver enzymes have been fine. I can't imagine he'd take meat or chickpeas just before bed and I don't know what else to give him. I've been incorporating more snacks in the day, but the total calories/6 is a great idea. Thanks! I've never been big on giving my kids snacks because I always found they ate all of their meals when they had minimal snacks in between, but I am realizing the importance of it now. I've never noticed any LBS symptoms before bed. He's had some bad nights sweats prior to LBS mornings...but then he sometimes sweats a lot on normal nights, so I feel like the glucometer is my only clue right now. I will watch his eyes before bedtime and see if that ever clues me into anything.

It's funny you mention calling caregivers during bad reactions...I have done the same and have even asked them to pull wrappers of a food out of the trash to read me the ingredients. Things here were minimized for a long while also, by most people not living in our house, but I have a good manage on that now. Does Coley wear a medical alert tag? If so...what does it say? God for-bid we get in a car accident, the ER docs would give him meds with sugar that would destroy him.

Thank you for your support, and encouragement. You helped me a lot!!
:-)carrie

[laurie]

Hi Carrie,
I just felt the need to jump in on this one (med-alert bracelet)
My son, Hunter, wears one. There are only 2 things listed on it right now, asthma and HFI, but I felt those were the 2 most important things.
Trust me when I say it has helped, at least as far as the hospital and doctors go. Hunter has had his since January and has had 3 surgeries since then. Thankfully, having his med-alert on his arm until being wheeled in to the operating room has made people check and re-check everything. each time they have had to change what would be going through his iv.
As far as normal everyday people, they see asthma and know what that is, but have no clue when it comes to the HFI.

As far as LBS, I haven't had that problem lately being as Hunter has had a feeding tube put back in, but I was struggling with it before hand!! It doesn't get easier when they get older (Hunter is 8 today) because they are still kids and will test the waters so to speak.
I watch Hunter like a hawk, and he's fine with me, but on the weekends he goes to visit his dad is very hard. I can't seem to get it through his dads head, or my in laws for that matter, the seriousness of the situation when it comes to what Hunter eats. They all have, and will probably always have, the "a little bit isn't gonna kill him" attitude. I noticed a difference in Hunter yesterday when he came home. Come to find out his father didn't give him one of his tube feeds, but kept the can of formula so I wouldn't know about it. Thankfully Hunter spilled the beans. I guess that's where I'm blessed, HUNTER himself knows how serious this is and he tells me when he's had something he isn't supposed to have, or in this case, that he didn't get a feed. That helps me to figure out what I need to do. I believe you and Kristen will get the same openess from your kids as they age and are able to express things better. You two are blessed in having found out about the problems while they are so young. With Hunter I had to take everything away from him. (he was just dx'd in January)

Laurie

[benjamins mom]

Thanks Laurie and Kristen for your thorough answers to all of my questions/concerns. Benjamin hasn't been formally diagnosed with anything yet but 'fructose malabsorption', so I was thinking of just putting something like 'fructose intolerant - no sugar, no sorbitol, if hypoglycemic give dextrose only' on a medical bracelet. It seems wordy, but I was worried if I put something like 'HFI' no one would look it up or they would accidentally overlook an ingredient. Laurie, I am glad to know that it has been helpful in your case and they understood the diagnosis and took the extra precautions to make sure everything was correct.

Also, Laurie...my heart goes out to you that you and your son had to suffer for so long without any answers or solutions to his problems. I do feel lucky that we figured things out when Ben was young. It does not seem fair that this is such a rare problem and that some kids/parents have to suffer for so long before they find relief. I have many friends who have gone thru med school and they all tell me that they have been taught that some things are common and some things are rare...and they are to treat everything as if it something common first. So, unfortunately, when the rare thing comes along it gets quickly dismissed and those patients end up suffering longer than they should. I will be eternally thankful to my husband's boss' wife ( a nurse) who listened well to my explanation of Ben's symptoms and suggested I research enzyme deficiencies when he was 11 months old. I came across the Univ of Iowa site for DFI and things just made sense immediately. I was solely nursing him at the time because he had these violent, week long reactions every time I gave him solid food. Thankfully he had an aversion to textures so I could only ever get 1-2 babyspoons of food into him at any one sitting. He was fine as long as he didn't have that bite of solid food, so I refused to give it to him. Since discovering that food list, we have very slowly introduced new foods and of course we have come across many bumps on our road as I learned the true meaning of a fructose free diet. Of course we are still working on a diagnosis, but, I feel like I have a good handle on what he tolerates and what he doesn't...it's just when I read about foods that I give him that similar kids can't have, I worry I am doing subtle damage to his system. He is good too about his diet...if someone gives him a cookie at a party, he brings it to me and says he can't eat it. At school, they say he announces to everyone what he can't eat. Just today my older son, who definately knows better, offered him a bite of a banana and he said no. However, like all other FI mom's out there...I worry about that independent trial of something like a snickers bar. You two have provided me with a tremendous amount of information and I feel more confident in handling the hypoglycemia aspect now. Thank you!!! Sorry for being rambly...but sometimes I just feel the need to tell my story and I know this is the place where everyone will understand me!

just one more thing....this probably belongs in a different post, but I'm wondering what type toothpaste you use. We use Toms of Maine/propolys and myrrh fennel flavor. We're out though and our health food store re-ordered the wrong one for me. I'm wondering if I can use something else, or should I make them re-order what I know works for him. Thanks again!! carrie

[Benjamins mom]

Thank you Kristen and Fred for the new info today. I think I'm good for now on things. (We'll see how long that lasts though!) Thanks to everyone for the outpouring of info to answer my questions these past few days. Wow, this is such a great site uniting such wonderful people!
:-)carrie

[Tammy]

Fred,
I find this very interesting. You mentioned in the past of a separate issue, but you never mentioned what it was. Now I'm intrigued.

By any chance do you remember last spring when I was MIA? I just said Regina was in the hosp for a different, unrelated reason. Well, that reason was blood clotting. She clotted off a main artery between her spleen and her liver. It clotted to the point of backing the blood back up into her intestines, killing part of the small bowel. Major life-threatening surgery, she was septic, 4 weeks on a respirator, 5 weeks in intensive care, etc, etc. They tried to put a "filter" in her main vein that goes into the heart. The object of this was in case a clot broke loose the filter would catch it before the heart. The main vein was also so full of clots that they couldn't get the filter in. They tried 3 times. Once on each side of the neck, and again from the leg. Her legs were also full of clots. The dr's still tell me they don't know how she came through it all.

Anyway, all is fine now but she will be on Cumadin for the rest of her life. (A blood thinner so she won't clot again) They told me that they don't know why she clotted like that but it is completely un-related to HFI. Of course, being the trusting soul that I am, I e-mailed Dr Tolan in Boston last summer and asked him about it. He resonded that he didn't know of any others with that problem and saw no connections to HFI.

Now isn't this some coincindence? What do you think?
Tammy

[Tammy]

Kristen,
I'm sure Fred and I will have more conversations on this, but for the moment, I only posted it here online. My reason being that I never mentioned what was wrong with her, and Fred never mentioned it, so what if there is anyone else who just didn't mention it? I mean, it's supposed to be un-related, right? Right. So if anyone else has any thoughts or ideas, this is the place to find out. Post away.
Tammy

[Tammy]

Kristen,
I didn't mean anything by that last post, certainly not anything that requires an "I'm sorry" by you. You ended the other post by saying, you probably shouldn't even have posted it, and I just wanted you to know that you didn't miss any of the conversation, at least not yet anyway. lol. I wrote the quick note and left for a dr apt. Sorry if it seemed curt.

You are right in that it's sometimes hard to know what to post. I certainly don't want to make things even more confusing, they are way too confusing as it is. Yet I also want to know if you, or anyone else have any ideas.

It's also not a bad idea to just keep these things in the back of your mind for future reference if the need ever arises. It could just be a coincidence, but I think it may bear some looking into it, if Fred thinks the same way. And at that point, we may well take it offline just to try and not create total mayhem. But feel free too post whatever you want. You never know where another "coincindence" will occur.
Tammy

[Chelsea]

I had another comment on the medic alert issues. For those of us with younger children in car seats, I have a huge medic alert sticker on her car seat with Dr's phone numbers as well as all the no sugars but dextrose protocol. Just a thought.