Pregnancy - Help & Advice Plse!

[ukmumma]

Hi!

I am new so great to meet you all

Basically, I have 2 kids with HFI, now 20 year old daughter and 16yr son. My daughter was diagnosed at 3yrs by Great Ormond St after years being very sick and complete failure to thrive.

We have done OK with it over the years, shes always been a bit 'flaky' and does appear to be very severely affected. When she tried contraceptives, which made her really poorly (who knows why but there you are its all a bit bothersome!)

She had a miscarriage last year (it wasn't planned but she was devastated), and is now pregnant again. We are really concerned about the impact of the HFI on the health of both mum and baby.

There is nothing on the internet about pregnancy (other than 1 very scary article I found). Does anyone have any experience of pregnancy management or advice?

Thanks so much in advance - its awful, with such unknowns!

[charlie]

Hi,

good to meet you, interesting that GOSH diagnosed it I assume when she was young?

We are under them at the moment for further investigation on my daughter so hoping for some sensible answers.

As for her pregnancy, is she on a healthy HFI safe diet? If so, as long as she sticks to that and eats little and often there is no reason why she shouldn't have a healthy pregnancy, but she must stick to it. If she has any queries on what is safe I can email you a list of safe foods and she or you can always query foods. Try to make sure the food is as pure as possible as alot of the cheaper meats etc may be contaminated with sugar.....

She probably will need to double check safe vitamins esp vit C but make sure the folic acid doesn't have any fructose or sweeteners in it. If you have any doubts try a company called G and G vitamins, their stuff is expensive but it is usually pure. www.gandgvitamins.co.uk

As for the baby, there is no guarantee that he or she will have HFI as the father would have to have it as well to be most likely to pass it on or a carrier. He may be eligable for a gene test to see if he has any of the mutations? But the best way to start if possible is to breast feed the baby then when weaning start with as low a fructose as possible and see what happens. The mother should stay HFI safe diet for as much as possible whilst breast feeding too. If not possible to breast feed then double check safe milks, I would have to pass this on to someone else to say what ones are safest in the UK - Kate may know if she pops in, or look her up on my malabsorption site as she has a little one and is in the uk.

So congratulations, I really hope everything goes well for them, but the most important thing is for your daughter to stay as HFI safe as possible. Its a shame JulienC has not been on for ages as she is HFI and has had I think two healthy kids, maybe if she pops in as a guest or anyone is in contact with her she may be your best help.
Oh and well done for bringing two up with probably what was little advise and support.

All the best

Charlie

[colormist]

UKmumma,
After I got confirmed diagnosis from my geneticist about my condition, the first thing I asked about about pregnancy. My geneticist seemed to think there would be absolutely no problem with getting pregnant, having kids, nursing, hospitals--all of that stuff, so long as I made sure to watch what ingredients were in the stuff going into my body (foods, drinks, medicines, iv fluids, etc). If it goes into your body, you have to make sure it's safe.

He also said they COULD test a child for HFI, but that it was probably easier for me to do food trials to see if there was a reaction.

[ukbill]

Green Cabbage (stems cut out) and Folic acid quick and lots of it!

Its the one danger with HFI too low Folic acid and spinabifida is the result!

[ukbill]

Sorry forgot to add Welcome to the forum

If you can post a basic list of the foods your daughter is eating then we can look at it for missing stuff

She should be fine its Vegans and Vegetarians who need vitamin supplements not HFI carnivores

All she will need is Folic acid and vitamin C providing she is eating a good mix of meats, fish and carbs (bread rice and pasta)

IF she can tolerate spinach and green cabbage that will be good and help boost the Folic acid levels.

One other thing she will have to be VERY careful of.. Sorbitol in IV fluids.. It can be lethal to us with HFI not to mention cause both extreme pain and fatigue at the same time!

Its commonly used as a "buffer" in IV pain killers.. in this case with the accent on "killers" you need to make absolutely certain any IV or pain relief is Sorbitol (and sucrose / fructose) free

If she has an epidural (I hope that s spelled right) it might contain Sorbitol.. and that could be absolutely disastrous! The thought of it gives me the shivers!

Fore warned is fore armed!

IF I can be of help let me know.

Congratulations to your daughter by the way.

She is about to discover what the word "Love" really means.

Keep smiling

Bill A.