In desperate need of Answers. PLEASE HELP!

[Alisha]

My daughter is 14months old. I live in the United States. The Dr's think my daughter has HFI. We are currently running a DNA test to test for an enzyme called Adolase B. I was told it would take 4-6 weeks. Here's a little background. My daughter was born 4 weeks early. She had no health problems besides getting hospitalized at 2 weeks of age due to low oxygen levels. Dr's never knew the cause. She developed upper respiratory infections almost on a monthly basis as a baby. I introduced solids to her (baby food, sauce, cereal etc) when she was 4 1/2 months old. She was always a fussy, irritable baby. Never happy. She cried most of the day for 10 months but she never seemed to have any symptoms of HFI. She was never an eater so she ate in tiny amounts each time, she never had any reactions to her fruit sauces. She would eat banana's, apples, grapes and oranges and seemed to be just fine besides always being fussy, hey, some babies are just born that way right?. She never vomited. She was so good with keeping food in her tummy. Though she was a preemie she was growing fine. always reaching her milestones. besides upper resp infections and being diagnosed with Asthma at 11 months old, she seemed like your normal little girl. At 12 1/2 months we introduced whole milk to her and that's when we noticed diarrhea. It went on for almost 2 months and then she catched the stomach flu from her brothers and she started vomiting and have more diarrhea, that lasted about 2 weeks. On March 4th of this month, I decided to take her to see her pediactrican. I voiced my concerns that my daughter didnt seem to be thriving weight wise and she ate very little whether that be milk or solids. As an infant, she would never take more then 3 ounces of formula at a time ( she was formula fed). Even to this day she takes about 3 ounces at a time only. The dr noticed that since last Nov, her weight had stalled. The Dr decided to run a cbc test and metabolic test and that's when OUR nightmare started (I'm crying as I write this). I got a message the next day that my daughter's LIVER ENZYMES were very high. Her ALT was 430 and her AST was 220. The normal range for a child her age was between 0-50. I panicked. For the next 2 weeks we checked her enzymes and they were up and down but never lower than 430. We've ran alot of tests. My daughter tested negative for Celiac's disease, negative for Mono, negative for lupus, negative for milk allergy, basically negative for alot of things. THe only thing that was a bit off was her protein, it was a bit high and her uric acid. Last week she was hospitalized because her liver enzymes were super elevated. Her ALT was 1400 and her AST was 1100. At first they thought she has autoimmune hepatitis then we ran and ultrasound and found out she had a fatty liver. We are now told she might have HFI. SHe's been on a fructose free diet for 5 days now and her levels have gone down significantly. When we were discharged from the hospital last Sat, her levels were 980 (alt) and yesterday it was 287. Ast was 91. I am just lost for words. I am heart broken, I am torn. There are few resources out there. I guess my question is, does this sound like HFI to you? In my gut, i feel like she doesnt have HFI. Even when her liver enzymes were in the thousands, she was walking, laughing, giggling, playing peek-a-boo with the nurses, she was never once lethargy, ill, jaundice. Since we found out on 3/4, she has never have any of the HFI symptoms besides runny stools. The Metabolic Dr is just stunned. She doesnt know what to think. OUr liver specialist thinks it's HFI. We didnt do a liver biopsy because our Ped and our Liver specialist thinks it's too invasive and we haven't done all of the tests yet. Right now, I'm overwhelmed. My husband and I are new to this. What to we give a 14 month old who wants juice, who wants crackers, who cants chips and cheetos, who craves sweets? The dietician wasnt much help yesterday. She gave me a list of things that i already found on the internet. Are there any snacks besides string cheese that I can give her (she seems to tolerate cheese fine). Can she eat french fries? Chicken Nuggets? Can she have any diabetic pudding, jello, ice cream? So far, we've been giving her rice and chicken and string cheese. that's basically what her diet consists of. I am just so torn over this. I am thankful that the Dr's dont think it's something more serious but to HFI is still very hard for me to accept. Please help me out with any suggestions food/snack wise and also if this sounds HFI at all to any of you. I am so thankful I found this board. I've been trying to be strong but this is all too much too soon. I love my baby girl and I want the best for her. THank you to all whom are taking your time to read this. I know it's long and I'm sorry. I'm just very desperate for any help i can get. Our dr's have been so wonderful but they dont seem to know too much about HFI. thanks again.

[nicoleh]

hi Alisha,
your situation is very similar to my own. my dd is 12 mo. She also only has FOUL diarrhea, plus some excessive thirst at times. I have lots of experience healing up inflamed guts and clearing out food intolerances, so it is not so overwhelming to me. We are waiting on DNA but are 99% sure she has HFI. I am also almost finished my bachelor of health sciences in nutritional medicine (I am already doing some work as a nutritionist).

At her age she really doesn't crave sweets - it might seem like she likes them but if they are not in her line of vision she won't miss them - maybe for only a couple of days she will miss juice if she's used to having it in a bottle.

Can I HIGHLY HIGHLY recommend that you put her on a modified GAPS program? (look it up if you like). it will heal her little gut much more quickly than anything else. This is what you should feed her:

-plain meat, cooked any way - beef, lamb, buffalo, goat etc. Hamburger is fine if pure 100% meat, no preservatives. Avoid pork for the moment - causes a lot of problems for a lot of people.
-plain poultry (with skin - more tasty, different nutrients) - cooked any way - chicken, duck, quail, turkey - MUST be non-basted or marinaded or anything. here in Australia most chicken is fine but most turkey is not. so check - it'll be different in the US.
-plain (non-breaded) seafood - shrimp, fish, salmon, tuna (fresh, not tinned or smoked), mussels, clams, oysters, scallops, crab, lobster. Much seafood has preservatives on it here in Aust. Ask and make sure it doesn't - goodness knows if your daughter might also be allergic to something else - mine is to sulphites.
-Make homemade stock/broth. Put some raw meaty bones (poultry is also ok) in a few litres of water and simmer for at lest 6 hours. Strain out the bones and let your little one drink this or use it to cook her meats/fish in. If you cook a fish fillet in a little of this stock, when it cools she will enjoy it for a different flavour to her regular stock drinks. Stock contains glycine which really soothes the gut plus I've recently learned that glycine helps the aldolase enzyme work better in HFI (maybe not much better, but anything is good). Try to give her a few cups of this per day. If you have really good sinewy bones, it will have lots of gelatin in it by the end. Also, you'll get gelatin in the bottom of the baking pan if you roast chicken drumsticks or wings. This gelatin is brilliant for them. Once you cool a nice, gelatinous stock, it turns into jelly in the fridge. My DD LOVES this jelly, whether it's fish or meat flavoured! I spoon it for her as it melts too quickly if they try to pick it up.

Poached and roasted meats are easier to digest than fried, but if you must fry, use animal fat, ghee, or cold-pressed extra virgin olive/nut oils. no canola, soy, sunflower, safflower, cottonseed. Any of these are very pro-inflammatory which is not what you want.

-Eggs - cooked any way. hard boiled in slices may make a nice snack. Scrambled in ghee, beaten with a little water and cooked as a flat pancake etc.

-any offal that you're prepared to cook and she's prepared to eat. liver, brains, sweetbreads etc.

If she tolerates cheese, does she tolerate milk too? There's nothing wrong with keeping her on this meat and stock only diet for a few days, except she may become ketotic due to insufficient carbohydrates. Giving her drinks of GOOD QUALITY milk (untainted; I would also always choose rBGH free if it was myself and A2 milk is less allergenic) will provide lactose which gives her carbohydrate. IF she tolerates this, let her drink it ad libitum. IF it causes any symptoms, try a lactose free milk that is just pure milk plus lactase (may just be listed as enzyme). If that still doesn't work she may not tolerate the protein well. you could try goat or sheep or buffalo milk, or she may tolerate cow's milk protein just fine if it has been denatured a bit in the cheese-making process. Omit the milk for a couple of days if necessary to see if symptoms clear. Don't use any of the non-milk substitutes - for these couple of days not having any milk won't hurt - make sure you offer plenty of stock so she gets enough water - it also contains some calcium. (but a few days without dietary calcium is no issue at all).

Just give her these foods, omitting any that you have a family history of allergies to.

After a few days of this, IF she has no symptoms, try her on these foods, one at a time:
-butter (the REAL pure stuff, no oils added, definitely no marg)
-pure cream or double cream.
-Cheese - I have no idea what string cheese is but if it isn't real, natural cheese then I'd avoid it. Real cheese (cheddar, brie, camembert, edam, gouda, swiss, Colby etc) should only have milk, salt, rennet, cultures in it. nothing else.

IF she eats a wide range of meats, seafoods, poultry, eggs, the listed oils and milk then her diet is now perfectly adequate. If she has no diarrhea, do add some PURE sodium ascorbate powder to her stock. (about 100mg/day). You can get it from Nutribiotics, PM me for where to buy online at it's cheapest.

Allow her to stabilise for a couple of weeks on this only. Then you should be able to test her gut flora by giving her some probiotic powder. if she has no negative reaction to a standard dose of this (i.e., no diarrhea, which is all you'd expect) then her flora is probably fine and she can go on to white rice, potatoes peeled and prepared according to the HFI recommendations, and other gluten free, HFI allowed grains. after that you can try gluten-containing grains.

If she fails to improve on the meat, seafood, eggs, poultry, stock diet then I would look at other conditions, not just HFI (or maybe not HFI at all). If you want to, once she has been stable for a few weeks, you can start introducing the HFI friendly vegetables - cook in stock then THROW OUT the stock that remains (or use it yourself - it's very good for you!) as we have just found out the hard way that the fructose leaches into the stock (or water) you cook in and we fed it to our DD - BAD IDEA. (and I have to wash the nappy, ew - wish for a disposable on that one).

Anyway, I hope this all helps you. please feel free to ask any more questions. My dd is also extremely healthy seeming like yours. she has no liver issues as I fed her this way from day 1 of weaning (plus she is breastfed which helps) and therefore I quickly noticed her symptoms when I introduced fruit and veg.

Good luck!
Nicole

[Tammy]

Hi Alisha
Your daughters story sounds remarkably like mine. My daughter tested negative on the blood test but was DX as HFI through a liver biopsy. Her mutation is apparently one they haven't yet found.

Regina ate everything, candy, cakes, cookies, and never once vomited or had any signs at all. At 9 mo she was hospitalized for her liver. It took another 2 years to find the problem. (You can find the long version of this if you take the time to read through some old posts) She never had any adverse reactions until after she was put on the HFI diet. Even now she doesn't react like most of the people on this site. She doesn't ever get lethargic or "brain-fogged". Her reactions are 2 or 3 days later. Diarrhea, vomiting, migraine - type headache. She also never had a natural aversion to sweets. She still loves them. Although she did have one to fruit tastes.

First thing to do now is sit back and take a deep breath. It's not as bad as it seems at first. There are many snacks that she can have. You just have to become a viligant label reader. Also take the time to read through the older posts on this board. There is a lot of good suggestions/ideas/ discussions here.

For a quick response, When Regina was small she liked puff cheese balls, potato chips, Triscuit crackers, Cheez-it crackers, SOME saltines (check the ingredients label) SOME pretzels. She also does well on puff rice cereal.

Since your daughter craves sweets, the sugar list is on BU's website. www.bu.edu/aldolase/HFI/treatment/sugar_table.htm It'll tell you what is safe and what isn't safe to use.

Jello sugar free instant pudding is a big thing with us. It's good as pudding and can also be used as "frosting" and can be frozen like a popsicle or ice cream. I also use it in cookie recipes to make chocolate cookies. You'll find a lot of recipes on this site.

If something says "diabetic" it does NOT mean it's ok for her. Most diabetic foods contain sorbitol, which is NOT safe. Neither is Splenda. Again, read the label.

Bread is tricky. Most bread in the states is not safe but a lot of grocery stores make a bread in their bakery that is ok.

What part of the states are you in? I'm in PA.

If you join this board you can also PM which is sometimes helpful.

Welcome to this board and remember - This really will get easier.


McDonalds chicken nuggets are fine. Most of the ones you find frozen in a store are not. You'll have to read the labels. Regina does fine on french fries although some have trouble with them.

[nicoleh]

I just wanted to add too:
try not to panic. I know it's scarey -we're going through the same thing right now and panicking is natural - but not so helpful. Pray if you think anyone might be listening - seems to calm me down.

The reason why I recommend these foods by the way is that for a child with diarrhea, they will clear it up as quickly as possible, heal the gut and help you see the real picture of what's going on with her. Diabetic jello may be HFI ok, but it's not healthy food and with a child that has a sick liver and other issues possibly, the last thing she needs is chemicals and additives to detoxify with that same liver.

I had allergies all my life and in the end, in order to work out what they were, I had to go down to just 2 foods, then add one every couple of days. as an adult, it was a nightmare. I always wish my parents had done this for me when they weaned me. I have done it for all my 3 babies and not only did it quickly identify issues with my older ones (that have now healed on the program I recommended) but it also possibly saved DD3's life and got her HFI (probable) identified so quickly. it's a gift to your kids - and so is a life of healthy food!

edit: just wanted to say that I wrote this message before Tammy's appeared. I didn't write it to argue with her post. when thinking about whether or not to give snacks like cheese balls or chicken nuggets or whatever, you could ask yourself whether, at 14 months, she's really going to miss them (does she even care that they exist?) and whether or not you think she will be a healthier child with, or without them, and then make up your own mind.

[Alisha]

Bad news again today. I am so lost. I dont know what's going on anymore. When my daughter was hospitalized 2 weeks ago today, her liver enzymes were in the one thoussands. Since then, we cut my daughter off all fructose and the diarrhea stopped and her levels went down to the 200's. We had HOPE. We thought we were getting closer to answers. This morning, my hopes are crushed. We took my daughter in for routine liver enzyme check yesterday and her enyzmes have gone up to the thousands again. I just sent a message to my daughter's GI specialist and our pediatrician. I need answers. If we cut out all fructose, why are her levels up again? I am so lost. She is on cheese and whole milk. she eats nothing besides meat and some rice but actually, she barely eats still. Please, what do i from here?

[colormist]

Alisha: Check the ingredients on the food you're giving her. I've noticed a lot of foods, though they seem safe, have additives in them. I've seen additives in milk, cheese, meat and rice. I've definitely seen fructose in cheese, meat, and rice.

Make sure the rice is white. Make sure the meats are free of additives, flavors, and broths. Make sure the milk is just milk (vitamin D added is okay, but the milk should only have a couple of ingredients). Make sure the cheese is just dairy. Make sure the rice is white rice (do not use the boil-in-bag varieties or the flavored microwave varieties).

She might also be sneaking food or having other people give her food. Keep a close eye on her. If she's on an IV or receiving shots, or taking medicine, or anything that enters her body, you need to make sure it's free from sorbitol, sucrose, and fructose. Dextrose and glucose in the hospital in medicine should be okay.

This is all I can think of right now. In the end, she might have something in addition to or other than HFI.

[ukbill]

I have been told all rice in the USA is treated with vitamins to avoid berry berry .. is this true ?

Because i was also told they "stick" the vitamins on with sugar!!

If hospital kitchen staff are like those in the UK please supply all your own food do not trust what is given.. also watch that any IV's that are given are not buffered with sorbitiol!!

If she is kept on a 100% fructose free then she will recover.. (sorry not had time to read all your post is she still breast fed? because I suspect some Fructose can get over the barrier into the breast milk.)

Anyway we are all rooting for you and if we can be of any help ask away! its no problems honestly..

If you need call me ++447973491339 UK mbl.. OK?

[fred]

Hi Alisha

Reading through the posts on this subject, it seems to me that your problem began when you switched to whole cows milk.

When I was a baby 73 years ago, the milk was a little different to what it is today. Not all milk was Homogenized. Most people used milk that was just pasteurized and the cream rose to the top of the milk bottle or container. When you used it, you just shook it up and the cream mixed in with the skimmed part.

When I was weaned from breast milk, they put me on homogenized milk and it made me very ill and so they switched me to the regular pasteurized type and that made me sick also.

So then the doctor switched me to canned Carnation Evaporated milk which had to be mixed with water to make it like regular milk. This was the last resort as there were no fancy formulas available in those days. I had no problem with the evaporated milk at all and drank it until I was about eight years old.

At age eight I had German Measles (Rubella) and it caused some change in my system which enabled me to drink regular milk from then on.

It seems to me that the Evaporation process must have altered or eliminated something in the milk that I wasn't able to handle.

At age eight, we did not know about HFI, only that I could not eat anything sweet either. The HFI diagnosis came with the name "Fructosemia" when I was twenty-five years old.

Anyway I thought there was something of a parallel here and you probably should talk to the Pediatrician about switching away from the whole milk to see if it makes a difference.
You could put her on 2% or 1% or put her back on the formula until she improves. It may be that the whole milk is just too rich for her.

Good luck, Please keep us posted
Fred

[nicoleh]

you could also try goat, sheep or buffalo milk. if you're unsure of purity, go get it straight from the farm somewhere (presuming that's legal in your state).

Another suggestion: at her age, she probably eats things off the floor all the time, and drinks the bath water. Vacuum floors constantly if anyone's been eating while walking around (better yet, ban the practice) and vacuum dining areas immediately after each meal.

Also, make sure you dont' put anything in the bath with her. just water! If you use bubble bath or shampoo, she will ingest it, no doubts. you can wash her hair with pure bicarbonate of soda (baking soda) - make a paste, apply, wait and then rinse off. don't risk any other kind of shampoo. (baby's hair really doesn't need washing with anything other than water anyway). also watch and remove any creams/lotions you apply to her body. I'm certain some fructose could be absorbed that way.

hope that helps!

[Alisha]

My daughter had her liver biopsy done on monday 4/8. I got a call yesterday from the on call physician and he said the liver biopsy was 'very reassuring'. I asked him what that meant and he said there was no cirrohsis of the liver and they couldn't find anything from the biopsy. He did mention finding 2 abnormalities, something about cells and a bile duct issue but he said it's not something that concerns him at the moment. This is NOT reassuring to me. I didnt even get a diagnosis. I feel like we're back at square one. My daughter went through all of that to only get no answers??? I am very upset, very confused and not happy. I sent another message to our original liver specialist (GI specialist) and was told by the nurse that the same on call Dr would call me back. We did have a very bad connection last night. I sent a message to our pediatrician asking if a normal biopsy meant my daughter does not have HFI, autoimmune Heptatis, alpha 1 and have not heard back. THis is very upsetting for me. We dont know what's wrong with her. She has a fatty liver and no one can figure out why. My daughter is not fat. She's small for her age. She's still on an FI free diet. Her enzymes have gone down to 300. but what now?

[charlie]

Hi Alisha,

I am sorry you are having such a worrying time. Sadly alot of this is a process of elimination and you do have to be patient. It depends what they were looking for in the liver biopsy, if it was an absence of Aldolase B then they were looking for HFI but there are a number of liver problems that can present themselves often it is a process of elimination and often they have to eliminate one at a time, but also to see what happens over time as other symptoms do or don't present themselves.

The good news it that the enzyme levels are decreasing and so something is working. Have you another appointment with the doctors, if so write a list of your questions as I know what its like, you get in that room and your mind goes blank.

Did they do the DNA test, the next step will be probably to wait for those results as they do take 6 to 8 weeks to come through. In the meantime continue stripping her diet right back to basics, if necessary and it is possible the best way to do this is to have as little in the house that isn't suitable for her and stick to safe foods, this may mean you following the diet for a while to help her. If you are eating it hopefully she will follow suit, but if you are sitting there munching on what she can't then that makes life harder for her. I had to do that with my daughter and actually lost some much needed weight myself as a result! Watch out for hidden fructose and sucrose, keep things as simple as possible for now, she is too young to expect colourful, extravagently tasting foods so now is the time to restrict things.

Please be patient, there are so many different things that it could be but you can only do one thing at a time so hang in there. And keep asking the medics, if necessary make sure they copy you every letter and write things down as I know how easily the brain goes to mush at this stage.

[lucky]

Hello Alisha,

I am so sorry to hear of your daughter's situation.

Undoubtedly your specialists will regroup, review, and research next steps. It is a very clinical process, and sometimes a parent/family can feel lost and not reassured in the process. Hang on. I'm sure they are working on researching other possibilities/explanations regarding your daughter's health.

Another option that they may still explore is:

*Fructose 1,6 Bisphosphatase deficiency* (FBPase deficiency)

It is known for looking very much like HFI when not in check.
Both have a metabolic connection to fructose and it's consumption.

HFI has a problem with the adolase B enzyme and potential cirrhosis of the liver. FBPase deficency does not show issue with adolase B or cirrhosis -but- can have fatty liver as one of it's symptoms. Both are connected to metabolic fructose issues, but with FBPase deficiency there is also an energy and storage issue involved.

AND... FBPase deficiency has NO general instinctual/protective aversion (smell or taste) to sweets. It is a sneaky hallmark distinction between it and HFI...

FBPase deficiency is usually investigated after tests (DNA or otherwise) have come back negative for HFI. Because -when poorly managed- it can look like it, but technically it is not...

If enough liver tissue is available, your specialists may consider a test for this also. And perhaps even GSD disorders (Glycogen Storage Disorder). One of those involve fructose issues too, I believe.

Lucky

[Alisha]

Thank you for replying Charlie. You made me feel so much better. I guess you're right. Things like this does take time. It's just so frustrating to sit back and watch your child go through all this and not be able to pin point what's going on. We are keeping things really simple with her diet, sticking with FI free foods and reading all labels.

I guess I thought that if they did a liver biopsy test, they would be able to give us a diagnosis. It's so overwhelming. We still have a few more weeks left until her DNA tests come back. Now I'm starting to think my daughter might have alpha 1. She has all the signs and symptoms too....I hope we get her a diagnosis soon. We were on a FI free diet and her liver enyzmes still shot up to the thousands. I just hope and pray that we get answers soon. Thanks for making me feel better.

[Alisha]

Lucky, thank you so much, I'll look into that (FBPase Deficiency). I need all the info I can get.

I just spoke with the GI nurse. She went over the biopsy results with me and I feel so much better. The on call physician I spoke with last eveing was very very nice but we had a bad phone connection and I couldnt get most of what he was trying to tell me. The nurse said the biopsy did rule out Alpha 1 (which I was concerned my daughter had, cause she alsoh as asthma and other alpha 1 symptoms), auto immune hepatitis and a LONG list of other liver diseases. I'm soooooooooo happy it's not any of that. We're not out of the woods yet but at least we're getting closer. I feel so much better now. So so much better. You guys are awesome....

[lucky]

Hi Alisha,

If you join as an official member, you can post publicly or send private messages. Feel free to contact me anytime. Unfortunately, we all have lots of experience -one way or another- with varying types of testing...

Just so it's not confusing, FBPase deficiency is known two ways: FBPase and FDPase deficiency. The "B" and "D" just represent "Bi" or "Di"... same-same.

If you are interested, I think there are two threads on this site with basic info to get you started.

Category: HFI Lifestyle: Younger Children (Newborn-5yrs)
Thread : New Diagnosis... not many symptoms
hfiinfo.proboards.com/index.cgi?board=Children&action=display&thread=1337

Category: Odds and Ends: Miscellaneous
Thread : FBPase Deficiency testing
hfiinfo.proboards.com/index.cgi?board=misc&action=display&thread=1209

[Alisha]

Hi everyone. It's been at least a week since I've been on here. My daughters HFI DNA results came back and yes, that was faster than I thought. Well it was negative. I was happy yet sad at the same time. I guess you can say I'm more desperate for answers than ever but what can I do? I have to go by the drs orders and schedule. The metabolic specialist informed me that even though the DNA test came back negative, we're still not ruling out HFI and we're still continuing her diet. This has been a dollar coaster. I feel like I have no more strength or will to do anything. I just wanna cry for my baby girl. I wish I could make this all go away for her. We have another DNA test we're still waiting on called Cholesterol Ester Storage Disease. I wouldn't be so concerned if my daughter wasn't listed as Failure to thrive, had a fatty liver and unknown elevated liver enzymes. My daughter wasn't FTT until she was 12 months. She was growing perfectly fine and weighing fine as a baby. This is so stressful but I just needed a place to vent a little. Thanks guys.

[nicoleh]

HI Alisha,
make absolutely certain they do the full DNA screen too hey! (for all mutations). Also, didn't the liver biopsy clarify if she has HFI or not? were you told the answer to that question?

Hang in there, I'm feeling the same as you I think. Would like to shoot off for a holiday or something - put all this on hold. but sadly, someone has to be around to feed DD!

[Alisha]

Hello Nicoleh,

The biopsy was negative for anything. I was informed that the only thing a bit off was that there were some white blood cells but nothing too concerning. I am very confused. I thought that the liver biopsy would rule out Hfi??? But I guess I was told it didn't. We only tested for a specific mutation which was the adolase b during the DNA test.

Anyhow, I think my daughter has an ear infection. Does anyone know or were in a similar situation where your child had to be given a specific antibiotic that didn't contain fructose? Cause I read somewhere that amoxicillin ( which has worked wonders for my daughter in the past) contains fructose? Please advise.

[Debra]

Hi,
I have a variant form of HFI which means that I am intolerant of fructose and fructans but the enzyme that I am missing is different from the aldolase enzyme that causes the known form of the disease. Therefore, I tested negative for HFI on the liver biopsy that looks for the enzyme activity of four different enzymes. Yet I am highly intolerant of Fructose. I eat only meat, fish, dairy, white rice and white sugar-free bread. I do not tolerate any source of fiber. I take vitamins daily and I take 1 to 2 teaspoons of MCT oil which keeps me regular on my low fiber diet. More research is needed on this condition. I hope to start a foundation this summer to raise funds for research and greater awareness of this disease.

[CHRISTI]

I know this group i from a long time ago but I would really like to know what happened with Alishas little one.....my lo is gong through the same