New to HFI- thankful to find you

[Chelbird]

My daughter Gillianne is 17 months old and recently suspected of HFI. Fortunately she was exclusively breastfed until 8 months old (Still breastfeeding) so her problems didn't start occurring until later.

Once solids were introduced we started identifying intolerances and suspected allergies, like dairy. Her growth slowed down and she is now FTT. Then she began having cyclic fevers. We just couldn't put our finger on what was wrong but my pediatrician and I just suspected something so she began testing. Her intial blood work came back all normal but her urine organic acids were abnormal. The specialist said it was likely bad diapers and he was "unimpressed" with her findings.

The months continued and we just didn't get over this feeling that something was wrong, so me pediatrician repeated all tests on 12/26 and her urine organic acids were even higher which the lab immediately flagged to the genetics team. 4 days after those lab tests my daughter got the flu, by day 2 she was lethargic, pale and ketotic. They admitted her for acidosis and we were immeidately seen by the genetics team (after being told it would be March until we got an appt). So her illness was a saving grace.

We did get the opportunity to meet with the nutrititionist as well but there are so many unanswered questions. Many of which I have answered tonight from reading the board, I am so thankful I found you.

We are only on day 2 of her new diet and have found it challenging as we haven't gotten the staples sorted out yet, like bread, pasta, etc. We also still have the dairy allergy to contend with which complicates matters further. They do believe that it may infact not be a dairy allergy at all but don't want to complicate the results of eliminating sugars, so we will wait to challenge her dairy later.

[Chelsea]

I am hoping the dairy issue goes away, I guess all in time. She has been dairy free since 6 months of age. She wasn't eating solids but as a breastfeeding mom I eliminated all dairy products including whey & casein. I do not intend on introducing any of them until we get some resolve with the fructose free diet.

I am a little cofused today though on vegetables and brown rice. I am getting ready to hed out to Whole Foods today and thought I would compile my list.

Beets, corn, sweet potatoes and brown rice are on her safe list and I keep reading those are not good.

Aspargus, green beans & lettuce are on her no list yet I see many people including Dr Tolans list says its okay.

I guess I have to decide if I go with the list the nutritionist gave me (which by the way has a date of 1999 on it) or I go with the other lists I have seen.

While I really got a lot of good info from the nutritionist during our hospital stay, we haven't been seen by the metabolics Dr yet only the geneticist that works with him, whom admitted this is not her area of expertise. Neither seemed overly concerned with strict elimination until we have further follow-up but as a mother I don't want to continue waiting and continue making her sick.

[Tammy]

Chelbird,
I'm glad to hear that you're taking the safe route. You can always go back if they find the strict diet isn't really necessary.

I'm not sure what list you have that allows those things. We pretty much follow Dr. Tolan's list. It has worked for us for many years. She doesn't get sick, and her liver tests always come out fine.

And like Kristen finally understood ;D, Just because this doesn't sound healthy to our old ways of thinking, this is a very healthy diet for HFI. My 23 yr old daughter rarely gets sick. Even the common cold is not something she gets very often. Maybe once a year. And since she is out of school, maybe not even then.

If you want to be absolutely sure, just eliminate everything that you have a question about until you get to talk to the dietitian again. Meats, dairy and pasta are the best things for this diet.

Tammy

[Chelsea]

Thank you both for your input. Can I get some clarity on the legumes and nuts? Gillianne has a dairy allergy so we use alot of soy products and other legumes for protein because she doesn't care for many meats. These would be very difficult for me to remove from her diet. I have no issue with the fruits and vegetables, as unnatural as it sounds, I understand the basis. Dr Tolans list approves nuts, so is that really necessary to remove? We were encourage to add almond and cashew butter to her diet because of her weight and anemia.

Is it unusual that after only 3 days of having elminated fruits, vegetables and HFCS products, I already have a happier baby?

-Chelsea

[Tammy]

I just checked Dr. Tolan's site, and I see it does in fact now say that nuts are ok. This is something that I can't answer. I'm guessing he has updated his lists. My old ones from 20 yrs ago say nuts weren't allowed. So we have never allowed them. I'm not sure when he changed his. I'm not sure if I'll change on them or not. I will probably wait awhile and see if it changes back or not. I like the old tried and true. She doesn't miss them, so I'm in no hurry to rush into the unknown.

The best one to ask is probably Fred.........Hey Fred, do you eat nuts?

[lisa]

Chelsea,
I am pretty new at this as well, but I know that we first really saw Nate have significant problems when he started on soymilk. A few other things were also happening then, so I did not originally associate the two. My list says no beans and specifically calls out soybeans as a no.

Are you feeding her soybeans right now? One thing you will notice is that each one of the kids/adults in this discussion group has things they can tolerate that others cannot. Soy products may be different/OK for her. The only meat I can get my son to eat right now is chicken nuggets. Mostly he eats dairy and bread/pasta. He used to be just fine with meat of all sorts and now has gone on somewhat of a boycott. I'm hoping it is all part of adapting and will be over soon, but we will see.

[Chelsea]

I guess the more I read the more I realize the unique effects different things have on different people. For now, I have decided to continue with nuts and legumes. Removing the fruits, veggies and processed food sugars has made a tremendous difference, so I will go with this for a bit as we adjust and just closely record what I am noticing.

We don't use soymilk because most is sweetened and the unsweetend she does not care for. She will continue on only breastmilk for now and maybe we can try goats milk ? I have kept other soy products in her diet, like plain soy yogurt.

I am having a hard time with bread though, so many of them have HFCS, honey, raisin juice or evaporated cane juice. Is there a brand or do you make your own bread?

[lisa]

I usually buy sourdough bread from the grocery store. Some french breads also do not have sugar and are less sharp tasting.

I believe Tammy and Kristen both by Matthew's golden white, but I have not been able to find it in West Coast stores.

[Tammy]

I believe Kristen uses Mathews White Bread, but I don't have it in my area, either.

I've always made most of the bread in a bread machine, but lately my local supermarket has bread I can buy. It's made in their bakery. Some french is ok and most of the heavy jewish breads are ok. Sometimes I go and they don't have any, and the next time they have 3 or 4 kinds that are ok. So just keep looking.

Tammy