Two children with HFI my story

[emma]

In 1994 i delivered my first child,a son,Taylor.He was a beautiful little boy ,a very bad sleeper though.At 4 months of age i started to introduce solids and baby juices.This is where our lives changed.Taylor's first baby juice was diluted with water and made according to the directions for his age.after half an hour Taylor became very limp,sweating profusively,and seemed to be in and out of consciousness.As my husband and i had no idea what was happening we rushed him to the hospital.Taylor was worked on for hours and they finally bought him around with a glucose iv.As they were unsure as to what his condition was ,we spent 2 weeks in hospital.They arranged for a metabolic specialist to perform a liver biopsy.This came back with the diagnosis of HFI.Since that day Taylor has only ever had one other attack .At 4 years old he took a sip of pepsi from a cup.He had the same reaction ,sweating,limp and unconscious.An ambulance was called and an overnight stay was required until the liver stopped swelling.Taylor is now 18 years old.He has lived a very happy life and has been fortunate to never have another attack.I have educated him from a very early age and he has learnt to improvise.I had three more children after Taylor.The next two are fine,the last one born in 2002 is an identical match to Taylor.At birth my daughter Abby who is now 10,was diagnosed by a blood sample that was taken while in the hospital and compared to Taylors ,which was held on file.It was confirmed 6 weeks later that Abby has HFI as well.We were told they were both acute,never to try fructose,sorbitol etc.Through very careful living Abby has never had an attack.Abby is a bit inquisitive ,likes to know what things taste like,and often says" i hope one day i could try that" .We were told they were the only two in our state of Queensland.I have never had help and finding this site has been so wondeful.we still see the metabolic specialist who diagnosed Taylor back in 1994,he has been a wonderful lifeline sometimes.It certainly has been a challenge for them and us,but the schools and the friends they have made along the way have all been very accomodating to there condition.Thankyou for taking the time to read my story.Emma

[charlie]

Hi Emma,

welcome on board and thanks for sharing your story. wow, what an experience but amazing that they picked it up so fast. Sounds like you have done a fabulous job bringing them up and educating them abou their diet. Maybe your older son would like to post under his own name and share his experience, or add on to yours, it may help others his age feel like using the board as so far we tend to have adults diagnosed or parents of younger children. Their experiences, how they feel about it all and especially in social experiences may help others that are guests but not joining in that age group.

Another board worth looking at as you are in australia is a very active yahoo group:
health.groups.yahoo.com/group/fructose_malabsorption_australia/
It is for fructose malabsorption but they may have ideas on products in australia that are fructose free. Just bear in mind that alot on the FM diet can tolerated levels of fructose of differing quantities whereas HFI cannot tolerate any, especially if as acute as your children.

[emma]

Hi Charlie,thankyou for your information regarding the group in Australia.I will talk to my son and see if he wants to join this discussion group.I think it would be good for him to read some of the information on here.The social experiences have probably been the most challenging.School camps,birthday parties,dates,school formals and graduation the list goes on.Thanks Emma

[robyn]

Hi Emma. I too live in Qld and have two children with what we strongly suspect is HFI. My girl is 6 and I have just had a baby who is 4 months old and showing very similar symptoms. We have always self-managed it. We were fortunate in that my MIL has this too- it has affected generations of people on her family, so in the beginning, although we didn't really have a name- we knew how to feed my daughter. As I've gone along though, I've started to do more research and I'm pretty sure this is what we have.

Can I ask where in qld you are? And who the specialist you see is? We have been wondering about looking to see a specialist and I've found one- Dr corman who is a paediatric metabolic geneticist, and I was hoping to try and get a referral to him- but if you see someone else maybe that would be better? I also noted you mentioned in a previous post that your kids drink Coke Zero and Pepsi max. Do they tolerate it ok? I've never even tried any kind of soft drink with my girl, but her aversion is extremely strong, so I'm not even sure if she would want to drink them- but it is maybe worth trying? Sorry for bombarding you- you're just the first Australian I've come across here!

Regards Robyn.

[2hfi]

Hello Robyn,im so happy to be able to talk to you about this.We live in Eatons Hill Brisbane.I am more than happy to help you out with anything regarding this .My two children who are 15 and 23 go to The Lady Cilento Hospital South Brisbane.They are under the care of Dr James McGill and at times have seen his off sider Dr Coman. We have been seeing them since my 23 year old son was 4 months old.Both my children have been diagnosed as Acute Hereditary Fructose Intolerant.If they digest anything with Fructose,Sucrose,Sorbitol etc they have 30 minutes before becoming unconscious and can end up being fatal. As far as Coke Zero and Pepsi Max are concerned yes they tolerate this well,but we have a very strict diet and there is no room for trial and error.My two are the only living people in my family who are affected by this,i have 2 other children who dont have it as well.The specialist has told us that other people years ago in our family could of had this but we will never know.I dont check this site too much as alot of it is American etc.I can give you my email address for further questions.
[e-mail] If you need any food lists that i buy for my children i can help ,also recipes and ideas.Feel free to contact me anytime.Hope this has helped.
Regards
Emma Bowden

[ukbill]

To everyone in QLD Australia I am planning on coming over to see my eldest son and family who now live in Cairns next year.

Most likely in your "spring" time.. or winter.. because my partner is averse to hot countries.. she having lived in South Africa for 40+ years and having had enough of hot countries to last her a life time (so she says)

Could be fun to meet up and exchange stories etc..

Keep smiling