2 year old with LPL deficiency

Worries of a mother and struggling with the terrible twos!

Written by Lpldmummy, published 4 months ago.

Hi everyone. I'm so happy to have found this website, I wish I had found it sooner! Our son was diagnosed with LPL deficiency at 10 weeks old after he was hospitalised for a respiratory infection.
My feelings at the time of diagnosis were both relief that it was something we could manage, as well as sadness that he would suffer with this throughout his life and fear for his health. I have found cooking for him easier than expected, although time consuming I enjoy making up recipes for him. I still worry a lot about how he will cope at school, and whether he will be ok health wise into adulthood. If he sticks to the diet will he avoid pancreatitis or will he get it anyway? Will he be bullied because he cannot drink alcohol or eat normal foods?
I also am currently struggling with the terrible twos. He is good natured, but he is a very fussy eater and refuses to eat anything they offer him at nursery. I used to be able to get him to eat his supplements in fat free yoghurts but recently he won't eat them atall and especially if I have put the supplement in them. I'm afraid to put him off his main meal by putting them in these and currently it is difficult to get him to eat anything other than toast or baked beans anyway! Any tips?! I haven't tried MCT oil yet- can I cook with this like normal oil? I usually make big batches of spaghetti Bol and other foods for him and freeze them in portions.
We have just had a little girl who fortunately did not inherit the condition. How will he cope with her eating normal foods or should I make her eat the same as him?!

Written by Lpldmummy, published 4 months ago.

3 comments for «2 year old with LPL deficiency»

Expand all ]

  • Yang | published 4 months ago | Originally written in English

    Hi Lpldmummy!

    Nice to see you here. I am a patient now in my 30s.
    I would say please do your best to keep your son on diet to avoid pancreatitis. It can be done. I doubt that he will be bullied. The teachers will usually be there during lunch time. I never got bullied for not drinking. if that happens, that means he is hanging out with the wrong people.

    Two year olds are handful. good thing is that they will get over it. If he skips supplements, that's not the end of the world.

    I don't like MCT oil so I don't know how to cook with it. They don't do well in high temperature.

    I run a facebook page and a facebook group. In the group, we have several LPLD mummies, if you are interested in talking to them, Please let me know. The webpage is https://www.facebook.com/fightFCS/ the group is invitation only, so please let me know your facebook profile so I can add you in to the group.

    I saw that you are from UK, then you might want to contact Jill, and she is running an association for LPLD/FCS patient.

    Her website is http://www.lpldalliance.org/ or https://www.facebook.com/LPLDAlliance/


  • sandyketronvowell | published 6 days ago | Originally written in English

    Twos are terrific AND terrible aren't they?

  • jill | published 6 days ago | Originally written in English

    Hi Annie-Rose,

    If you want to join the UK discussion community (a closed group on facebook) let me know your facebook profile and I will add you! There are parents on this group too (some are in both groups). Do join both - the more you are connected, the better!

    Best wishes


Leave a comment

You must be registered and signed in to leave a comment. Sign in now.