Can you be tested HFI and then dont be HFI anymore?

[claudiarivas]

Hello Everyone!!
I wanted to pass by and say hello to all of those who at the time I needed guidance helped me out a lot!! and tell you a brief update on my child , carlitos,since I havent been on the board for a while now. Also, I have a question based on what has been going on with him. Can someone be tested HFI positive and as a newborn/ baby have symptoms HFI related and then not have HFI anymore?

To those who dont know my story my first born was diagnose at 5 months by genetic testing. Symptoms first started when I introduced a lactose free formula and bananas ... symptoms were projectile vomiting, lethargy ( significant)

Since He was diagnose He has been on a strict diet, which has been "easy" to follow since he himself rejects what he cant eat.( THANK GOD) and has not been sick ever since.

Now, he is four. He has eaten things that I never dreamed of him having
he has had
soup containing pumpkings
beans
regular white sandwich bread
pizza with tomatoes sauce
bbq sauce
sugar free containing sorbitol

and no apparent symptoms.
I run blood test on him ( that check his liver enzymes) twice a year and everything comes up normal

The reason I have let my guard down and let him taste somethings is to see his tolerance level, not limiting or restricting him more than I should. but must admit sometimes I am scared that it may be harming him with no apparent symptoms.
I know God has been really good to us and that HFI has not been so hard as I thought it was going to be when first diagnose. BUT my question is
Can it be possible for him to not get sick as he use to , because of the quantity he has intake, because he eats more things that can counteract the effects and his system is now more mature?

should I keep testing his tolerance level with more risky things?

Should I test him again? can it be possible that he has develop de aldolase B enzyme? ( because he definitely had HFI when he was a baby)

or is it normal for some HFiers to tolerate some level of sugar in his body?

Thank you so much for reading my post and answering it
I also want to leave my email if I can help or serve anyone, dont hesitate in contacting me [e-mail]


Claudia
Carlitos 's mom

[colormist]

Hi Claudia,
So the bad news: if you're born without the aldolase B enzyme, you can't suddenly develop the gene (without gene therapy or a liver transplant). I would liken it to being born with only one hand instead of two. That second hand isn't going to suddenly grow back without some serious medical intervention. The fact that he's still self-selecting the sugar free foods is enough evidence for me that he hasn't suddenly gained the gene as he is still equates sugar with nausea.

Every bit of sugar he eats is damaging his liver. If he does it regularly enough, he will get very ill. It might even be causing symptoms that you don't recognize, like thirst, sleepiness, lots of stinky pee, and eating a LOT of food.

As a child (and teenager) I ate all manner of things I shouldn't have and sometimes it made me very, very ill. Other times it just made me queasy. I even WANTED to eat things I shouldn't--like pizza and beans. I didn't even know those things were harming me until I removed all bad foods from my diet. Nowadays I can tell they're hurting my system.

My brother (who had undiagnosed HFI) still eats things he shouldn't, but avoids most sugary foods. I'm quite certain he's going to end up with liver or kidney failure somewhere down the line, but I can't talk any sense into him.

My advice is to stop testing his tolerance. Stick to the diet. I know it's not fun, but he's going to have moments in the future when somebody feeds him something they shouldn't and he's going to get quite sick. He's going to need a healthy liver for those bad days and two healthy kidneys to help clean up the liver when he gets sick.

[claudiarivas]

Thank you Colormist for your reply. He is sticking to his diet I dont joke around with it jajaj but I must admit that the few times he has derived from it, his lack of symptoms have me confuse. Thank you for your input I will be even more careful.
Just for my personal knowledge : what is gene therapy?

[colormist]

May 17, 2016 13:30:53 GMT -5 claudiarivas said:

Just for my personal knowledge : what is gene therapy?

I think that's where they edit an individual's DNA to prevent horrible diseases from occurring. I don't think we have the science just yet. There are all kinds of moral implications to modifying genetics. I'm not sure if this process would need to be completed during conception or if it would be possible for adults as well.

All my knowledge about gene therapy comes from TV shows and movies!