life worth living with HFI?

[ashley1988]

I'm asking this on the adult thread because I'd love to hear from some adults who have lived with HFI. 
I am currently pregnant with a baby with HFI. We realized this via pre natal CVS testing. 
It was suggested to me to terminate the pregnancy. Of course this is tearing me apart. I wanted to ask if your life has been happy and productive as someone with HFI. I am sure the majority are perfectly functioning members of society, but how bad is it to really live with this? Are you in pain on a daily basis? Has it majorly altered your social life or life path? Would love any and all thoughts and viewpoints. I am very against terminating a pregnancy. But I just really want to hear from anyone and everyone for insight into what life will be like for this baby. Thank you.

[antonia]

I am not sure who suggested you terminate your pregnancy due to HFI. I hope it was not a doctor or any kind of medical professional that should know better. As long as you adhere to the HFI diet, your baby should lead a full and happy life. Since you’ve caught it before birth, your child will not incur any of the physical comorbidities commonly associated with undiagnosed HFI, such as organ damage. The most difficult thing that your child might face is some awkwardness at social gatherings, because he or she will not be able to consume the food or drinks that everyone else is enjoying. And I would argue that if we empower our children with information about their condition, and teach them a little social grace, this is hardly a hardship for them. Well worth living for. The hardest part for you will be to learn all you can about the HFI diet, and how to keep your child safe from fructose, sucrose, and sorbitol in all the places that it can be encountered in life (food, medications, etc.). And if you are not a cook, you will need to learn the basics, there aren’t a whole lot of HFI safe, convenience foods to choose from. I’m sure if you research the condition further, you will find it is not nearly as grim as this person made it out to be. There are much, much, much worse cards that can be dealt than HFI.

That you’ve been told this hurts my heart a little bit. Not an adult with HFI. Mom to an eleven year old HFIer. She is my EVERYTHING. Happy and healthy since finding the HFI diet and getting lots of help from this wonderfully generous and supportive, HFI community.

[ashley1988]

Thank you both for your candid responses. Antonia, I almost cried reading your post. I really think I have been misguided. Now that your child's diet is under control, do you think that she has had any other health issues from HFI? Do you think she's suffered socially at school? Is she a normal weight and height? Any insight into your daily life would be a godsend. I don't know who to turn to. And several doctors have made this thing out to be a big scary bear which it seems it is not at all. I'm so thankful to you!

[antonia]

Ashley, 6 years post HFI diet, our life is pretty much like everyone else’s. Except, you will spend a whole lot more time preparing food than the average, modern household. I make most of my daughter’s food from scratch, and she always brings her own food to school and other outside activities. She brings her own sugar free muffin to birthday parties. Vacation accommodations do require a kitchen set up. We don’t dine out very often, and when we do we either need to make arrangements with the restaurant before hand, ask them to prepare a safe entree for her, or we simply bring her own food in. She is not in pain, unless she somehow becomes exposed to fructose, sucrose, or sorbitol. Which she has not been since we started the diet 6 years ago. HFIers have a natural aversion to unsafe sugars and sweeteners, so it is in no way a battle to get her to follow the diet. She has never tried to sneak unsafe food. She was short in stature prior to the diet, but quickly made up for lost time, and within normal height and weight range a year or two into the diet. She is bright, academically advanced for her age, and physically active. We do need to be careful about preventing dehydration, whether the cause is heat, exercise or non HFI related illness, because aside from unsafe sugars or carbohydrates, dehydration can cause a HFIer metabolic distress. That’s about it. She does everything her friends do, just always eats home prepared food and drink. She does not suffer socially due to her HFI. She makes friends easily, and has learned how to explain her condition to other people, if they’re curious about it.

Your baby has a bright future ahead. I’m appalled and pretty disturbed that you’ve been told by several doctors otherwise. I can’t really wrap my head around it. Especially since you have caught it prenatally. Your child will not suffer from HFI at all if never exposed to the sugars or carbohydrates he or she cannot process. Would these doctors tell you to terminate your pregnancy if it was known the child had diabetes or severe allergies? Because these conditions are much harder to manage than HFI. Severe illness only occurs with undiagnosed or poorly managed HFI. You will never have to deal with any of those complications. I wish you and your baby all the best ❤️

[ashley1988]

Thank you so much! I appreciate your message beyond measure and sent it to my husband, mother in law and mother to read. I think your email is life changing to us, and to this baby. Do you mind if I ask you a few "silly" questions? With the dehydrating, does this prevent her from participating in sports or gym at school? Is she not able to attend camp in the summer time with other kids? And when you go away on vacation, are you able to feel like you can safely leave her with family or a babysitter and trust that they can safely manage her diet? I'm sure maybe it was harder when she was younger. Do you think this causes a lot of stress in tour life overall and marriage? We already have one healthy unaffected 3 year old and I'm already stressed and overwhelmed! And do you need to go to specialists for liver panels periodically to make sure her overall health is okay? Are there any other long term worries you have about her long term health as she gets older and becomes an adults, just due to her limited diet and nutrition? Forgive me if these are silly questions, I just feel so in the dark. After hearing from you I set up an appt with a metabolic doctor at Mt Saini NYC to get on board with the "diet" and study up on how best to care for the child. Thank you so much. You've given me so much hope its actually quite literally life changing. Best wishes to Ashley!

[ukbill]

Ashley. Life is very very much worth living with HFI!
I am nearly 66 years old now and very keen on a full and happy life.
If your baby has the genes for HFI then yes your baby will have the condition of course.
HFI has no symptoms at all so long as you eat a safe diet.
There is a lot of really good support groups I can point you towards where mothers of HFI and those of us with the condition, can guild you through the admittedly hard few months. It is a steep learnign curve.
I cannot say that other than joining the Armed services (which would have been impossible given their ration packs) nothing in my life has been restricted by HFI.
I have travailed the world and intend to do a lot more once Corvid calms down a bit more.

Do not worry at all.
Key advantages of being HFI.
1/. We never get rotten teeth (unless we eat glucose)
2/. Our Diet is full of minerals and vitamins and except for vitamin C generally we do very well nutritionally.
3/. Diabetes is unknown in us.
4/. We mostly eat fresh home cooked foods so not eating all the chemicals and preservatives stuffed into manufactured foods.
5/. Our children grow into fit and healthy adults with no issues at all.
Keep smiling

[antonia]

Ashley, sorry for my delayed response, we’ve had kind of harrowing holiday season and start to the new year. (Mountain living can be hard sometimes.) I hope you have joined some more groups and gotten some answers to your questions. Each one of us has a different story, so you’ll probably find we all have slightly different answers to your questions. Not silly though.

I would look to see a geneticist. They can offer appropriate testing to monitor your child’s health. I would take any advice they have on diet with a grain of salt. Most doctors don’t understand the diet, and many have been given poor advice even by well respected doctors with lots of accolades to their name. Your HFI child will be healthy on a HFI diet, more healthy than most children whose diets are full of simple sugar. You’ll need to rethink what you’ve been told about traditional nutrition, and turn it on its head. Fruits and vegetables are not necessary for a nutritionally complete diet. Except vitamin C, all nutrients can be obtained from the HFI diet.

As far as sports and activities are concerned, you will find plenty of HFI athletes do exist. I would worry about that when you get there, if that’s the path your HFI child takes, learn from others what precautions they may take in their sport. For my daughter, we never leave the house without safe food and plenty of water, especially in the heat. She takes breaks whenever necessary to hydrate and refuel.

As far as child care is concerned, your comfort level with others is probably going to vary with each individual or organization. You’ll have to feel out each situation as you go. The more people you can get involved to learn about HFI the better. Have them join these HFI groups if they’re going to be a primary care giver. The more they know and understand, the more you can trust them. I really encourage that, it’s much harder if you have to do it alone.

I hope I answered a few of your questions and eased a bit of your anxiety. Remember, you don’t have to figure everything out at once. Take it as it comes.

[Stefanie (Ziba)]

Ashley,

I echo everything Antonia has told you.

My 7 year old was in the NICU and we did not know he had HFI. I gave him breastmilk and only later discovered they were giving him sugar water which precipitated liver failure. His life was in jeopardy and he was very ill until I figured out he cannot metabolize fructose. Within days of starting the HFI diet at age 18 months, his health turned around. He is now 7 and bright, happy, healthy and a super athlete. I cook all his foods especially since he is gluten and dairy intolerant, too (batch cooking and your freezer will be your best friends). You have the gift of knowledge and that will keep you from having to go through the diagnostic labyrinth that many of us had to navigate. Your infant will do well on breastmilk. Table foods will be a bit more work (the Intolerances App will help as your child gets to school age). Keep the diet simple -- meats, fish, unsweetened dairy, eggs are safe. Stick to salt, butter and black pepper for flavor. If you have questions about safe/unsafe carbs, we are here to help. As your child gets older, it will become easier. Hydration and avoidance of fasting are the keys to keeping your child healthy and getting him/her through illness/stressors.

My son is the light of our lives and I cannot imagine life without him. I lost four babies to miscarriage and believe each pregnancy is a precious gift. He is confident and tells other kids "I can't eat sugar". He is healthier than his peers who stuff their faces with sweets.

Your little one will be better than fine-- he/she will thrive!

[kp]

Hi Ashley, I’m sorry I didn’t see your message sooner. I didn’t find out I had HFI until I was in my 30s. There were times I would get hypoglycemic and had no idea why I didn’t feel well. I would say if I had known that I had HFI it would’ve been the best gift because I would’ve felt wonderful my entire life. And by the way, even before knowing about how to feel great by following the diet, my life was absolutely wonderful! The only thing I wish had been different was not knowing I had it sooner so that I could feel great at all the time. When I started the diet, it was so wonderful. All this to say, you have this amazing benefit of knowing beforehand and your baby will feel fantastic from the start knowing about the diet to follow. Even if there’s a day I go overboard with fructose (it does happen occasionally), it’s ok. I know and then I just give myself a break. By no means is it an awful thing to have. Sometimes it’s amusingly annoying but that’s about it. Enjoy your baby and feel grateful that there’s amazing technology today to keep your baby safe and feeling great with the knowledge. I hope this helped.

[julienc]

My goodness, I haven't been on this board in ages. This post breaks my heart.
I'm 46 years old and have had a very amazing and happy life to-date with HFI. I wasn't diagnosed until 30, and life became so much easier once I understood what was happening. (Full credit to my mother for never forcing food on me.) I live abroad and have traveled the world. HFI requires some finesse, but it definitely hasn't slowed me down.
I hope this story has a happy ending. Sending love.

[macklee]

Hello I am a 18 year old who was diagnosed with HFI at 9 years old. To be honest growing up wasn’t the easiest. My parents were always worried about me when I wasn’t around them. I was always jealous of other kids eating candy and other treats. And having to explain myself to new people honestly does stress me out and is exhausting. To add on to this, I am a college athlete which requires so much nutrition while training and performing but not being able to consume energy drinks or snacks does suck. But if you ask me, it definitely is a life worth living. I did suffer a few issues when I was younger but that was due to my parents not knowing what exactly I could or could not have. Even then I was still a happy child. I’m sure by now you would’ve gave birth. I promise you, it will be difficult for the child and you but we(people with hfi) aren’t too different from everyone else. I hope this helped:)