new here - do you think this sounds like HFI?

[maggie]

We were just released from a week long stay at children's hospital - my 9 month old was admitted after experiencing a second 'episode' in which I offered her pureed sweet potato, and then a couple of hours later, the violent vomiting began (over 25 times in an hour). We took her to the ER, where she stopped vomiting, turned a sort of pale gray color and fell asleep/passed out/possibly had a seizure (according to the doctor who saw her). She then developed a slight fever and had diarrhea. She perked back up after about 4 - 5 hours.

The exact same thing happened 2 weeks prior when I gave a bit of pureed squash (I think that's what it was), but at the time the doctors thought it was a virus. I waited a full 2 weeks before offering again as I was convinced it was the puree that set off the episode. And then of course when I did offer it, another episode followed. We were admitted to CHOP at this point.

Again, she's 9 months, but has never been keen at all on purees - the first few time were okay - she'd eat a few spoonfuls, but now I can barely get a dipped spoon in her mouth. And I did take note that she especially disliked fruits - pears especially. I thought it was so weird, but now realize this could be a clue.

Anyway, the doctors leading hypothesis for a diagnosis is HFI, although there are a few things that complicate matters and make them wonder - first, her blood glucose levels are recorded in her chart as being normal during these ER visits - although they believe the reading could have been taken and recorded after IV's were started, correcting any hypoglycemia.

Also, she's classified as 'failure to thrive', so they are wondering about other food intolerances as well. She's been exclusively breastfed up until now. She is now on a feeding tube on elecare formula because she will not accept a bottle and is not allowed breastmilk.

So here are my nagging questions:

does breastmilk pose any risk of containing fructose/sucrose, etc? I know it's a different sugar (I believe galactose), but can the fructose pass from mother to infant from the diet? I would like to continue to breastfeed if possible.

if the genetic test is negative, how were you diagnosed? there's talk of liver biopsies or fructose challenge, which I do not want to give permission for (the challenge, not necessarily the biopsy)

what about IV or IM medications and vaccines? according to the cdc website, many of the vaccines contain sucrose. Does this pose a risk if it's injected in the muscle? She's only had her first round of shots at 2 months (could it be just a coincidence that she started to fall off the growth chart immediately afterwards?) But she's overdue now and I would like to get her caught up but will not if there is any question at all about the safety of it.

I can't believe that I have found this forum! Very happy to have a place to chat with people who have experienced something similar.

[colormist]

Hi Maggie! Welcome to the forum!

I haven't had a HFI child, but from the documented experiences here, breastmilk should be a-okay for a HFIer so long as they don't have some other food allergy.

I've only heard of liver test as an alternative to a genetic test. They only have a certain percentage of the genetic mutations documented. Hearing her reaction to the fructose-riddled purees you've been giving her, she'd probably react the same to the fructose challenge--maybe worse depending on how much fructose. I'm really not a fan of anyone doing the challenge.

I was told by my geneticist that most (if not all) IVs do not contain fructose. As for the vaccines (and any oral medications), you have to read the ingredients. It looks like there is new concern for sucrose in meds (from the random articles I receive via email from google about HFI), so they've been documenting the more recent meds that contain fructose and putting a warning for HFI. If possible, ask for an alternative medication without fructose. I'm not sure if there would be a reaction if sucrose would be injected into the muscle.

We've made some efforts on the interwebs to get our forum out there to (hopefully) help people like you. It seems those efforts are paying off.

[julienc]

Welcome to the forum, Maggie.

First, I'm thrilled that you have doctors who are considering HFI as a possibility. So many doctors have never even heard of it, so it sounds like you are in good hands.

If the DNA test comes out negative, the biopsy would be the sure-fire way to know, and in my opinion, the best way. I would not even consider the fructose challenge.

I asked my doctors and a nutritionist about breastfeeding (when I knew there was a slight chance my daughter could have HFI from me) and they all told me that it would be okay and that fructose would not be passed through in any harmful amounts. I wish I could give you some documentation on this, or more proof, but this is just what they told me. In personal accounts from people on this board, HFI doesn't usually become a problem until other foods or formula are introduced. Generally breastfeeding has been seen as "safe".

I can't answer the vaccine question. Perhaps there are some vaccine manufacturers who do not use sucrose or fructose?? When I was in the hospital for my daugther's birth, they wanted to give me oral medicine to prevent nausea (for a c-section). They couldn't confirm if it did not have fructose, so they did some digging and came up with a different medication that was given through an IV that they were certain did not have fructose. So, I guess my point is there are options with medications, and if you get a good nurse or doc, they should do their best to come up with options. Same may be true with vaccines.

Good luck, and please keep us posted on your daughter's progress.

[Tammy]

Hi Maggie,
I breastfed my daughter and was told at the time that my liver would have taken care of any fructose that I may have eaten so I didn't have to worry about that. I think that still holds true.

Are you near Philly? Or were you taken to CHOP? I am in central PA. The doctor that DX Regina is in Geisinger, Danville. Even though that was over 20 years ago, he may have a little more info for you. He is a pediatric gastroenterologist. She hasn't seen him in years since she now goes to adult drs but last I heard, Regina was his only case in the area.

There is also a young girl in the Harrisburg area but I've no idea where she might go.

Hope you get answers soon, and if there is anything I can help with in the area, just ask.
Tammy

[charlie]

Hi Maggie
nice to meet you. My daughter was breastfed until she was 4 months old and was fine until then, all her symptoms started once I started weaning and using formula. She refused purees for weeks and only started eating once I used plain boiled rice and potato I seem to remember. she had projectile vomiting, bad colic and was very bloated for ages and it took forever to diagnose fructose as the source of her problem so you have done well for them to consider it so early. If you go on the miscelaneous section, how were you diagnosed you'll see how a few did it.
Megs had all the vaccines and no reactions but I didn't look into those as an irritant I guess it depends what is in there. Check the formula she is being fed too for hidden fructose just incase. Good luck.
Charlie

[Maggie]

good grief - I am about to cry here... it is such a relief to have found this forum and all of you who have experience with this!!! I can't begin to tell you how happy I am that you all took the time to respond...

Tammy - yes - we went to CHOP! They were really great there and I'm so grateful to them for taking such good care of my daughter.

I"m also so happy to hear that it appears that breastfeeding is safe. I really hope to get the go-ahead to try again, as she is still not accepting a sippy cup or bottle and is on the ng tube, receiving formula. The problem now is that she's been vomiting a bit during feedings and is now having diarrhea type, mucousy stools, so it appears as though she's not really doing well on the formula either, although it's supposed to be the best as far as sensitivities go. It is advertised as being fructose free, and the doctors double checked and triple checked that info.

colormist - it's funny that this forum does not pop up directly on any of the google searches I've done - I found it via the wikipedia page on HFI - there's a like on the bottom for the forum.

I'll keep everyone updated!

[charlie]

Hi Maggie,
I'm going to give you some very cautious advice here - trust your own instincts in this. I have found that my gut (scuse the pun) instincts with Megs have usually been right but because I like everyone else trust the medics and believe they are always right I haven't necessarily followed them. More and more now I listen to my common sense and we seem on the right track.
I have also found the more processed things are the more likely something wrong may slip in eg the formula milk. Was your daughter ill on breastmilk? or did it all kick in once you started weaning. The problem with weaning is they always start with pureed fruit or veg which are obviously big no for HFI therefore symptoms will kick in more. If she was OK and you still have milk I would fight to go back to breastfeeding, after all you are her mother, and see what happens. then start weaning with HFI safe stuff first.
If she is at home and you feel secure enough in your own belief then I would try breast again, obviously if she is still ill from it then stop again.
Do whatever feels right, unfortunately as has been displayed on this board little is known about this in the medical world so they tend to go by the book, not necessarily for the good of the child.
Good luck
charlie