New diagnosis, need help

[heatherp]

Hi, 

My son was diagnosed based on symptoms and genetic testing.  We started him on rice and chicken, grass fed and not brined, and bone broth of the same, Saturday morning.  it is now Monday.  How soon should he be better?  His urine is no longer orange, which I am assuming is a positive.  He has reflux still and is generally crabby and is having trouble sleeping and falling asleep.  As of last night he still has acid diarrhea.  No vomiting.  Does this seem like we are moving in the right direction?  After over a year of searching for an answer, it is hard to believe we might finally have a diagnosis.  Also, are there any follow up tests that should be done?  Things to exclude?  His liver enzymes are normal so they said he is completely fine.....but?  He has been on Alimentum RTF for over a year, which has sugar in it, so I am wondering how it can be that he can just be fine.  Yes, he was very symptomatic, and is now much less so, but it still seems suspect to me that there is no damage.....thoughts?

[Tammy]

Hi Heather. It's nice to meet you and welcome to the board. Starting off on chicken and rice is the best thing to do. you will see small improvements like you've already noticed but it'll take awhile to really see the big things. Just be patient and keep on the diet. If there was any liver damage, which is very possible, the liver is an amazing organ and will heal itself with time.

What part of the world are you in? This is helpful info as many things are different in many places.

I can't help with your milk question, but I'm sure someone on here will be able to.

This diet seems overwhelming at first but it does get easier as you go. It'll become just normal routine to check labels for ingredients. One of the big problems that parents face is that they think they need to find more variety when in truth, most HFI kids like the same thing over and over. They don't need nor want the variety that parents think they should have. The next step to overcome is the thought that they need fruits and vegetables. No they don't. They do wonderful on this diet.

So take a deep breath and relax. The hard part is over - you got a diagnosis. You can go forward from here and the people on this board are wonderful at helping.
Glad you found us.

[heatherp]

I'm glad I found you, too! We are from Wisconsin in the USA. We feel lucky to have gotten a diagnosis, as it has been a long 16 months of no food really working. Breast milk didn't work, formula (with sugar in it and hydrolyzed milk proteins) made him horribly blah and sort of just existent but at least not miserable, but then it all spiraled downward with solids....reflux and acid smelling, horrid breath, acid diarrhea, suspected hypoglycemia events, school bus yellow urine with extreme output, never a night's sleep, eye tremors, blood shot eyes all the time, breathing issues, the list went on and on. We figured he wasn't severe enough to be diagnosed with anything but wasn't healthy by any means....kind of walking the middle, and waiting for the worst. The genetics were drawn after looking at family history of early liver failure and SIDS, and sure enough, we are no longer in the dark. To be honest, it was a relief to know what he had, because we knew he was getting worse and some days it was as if he was drunk...stumble, fall, all day long. We have him eating chicken and basmati rice and beef....the chicken and beef are grass fed/free range organic and are from people I know. Do you think we should take the beef out of his diet? We meet with a dietitian tomorrow...she hasn't any experience with HFI, though. I gave him one egg.....I suppose I shouldn't have done that. He also has a lactase deficiency, and I noticed in the nutrition data website it said eggs do have lactose in them...but so much other info on the web says not so. Who to trust? Well, he continues to seem better.....not eating so excessively, breath still smells bad upon waking but not all day anymore, is more alert, etc. It is good to know, though, that he will take plenty of time to get better, as he is still really crabby. Of course, maybe he just IS really crabby! Thanks for the warm welcome and thank you to everyone for all of the info in previous posts....I am devouring it! Hopefully I won't bother you all TOO much with questions as I learn!

[Tammy]

Just ask away on any questions. We don't mind at all. And once some of the others pop in and see we have a new mom on here they will also be glad to help. Claudia is a great new mom that has found answers on infants that will be of help to you.

Since he is a little older, if he likes beef it is fine for him. Basically you are looking at plain meats, pastas, cheese.

As you will see if you are looking through past posts, everyone has their own tolerance levels. Some can handle more than others. But at this point don't go looking for your sons level just yet. Just keep it very very fructose free completely. Once he has everything back under control and is doing very well, you can add 1 thing in at a time to see how he reacts. Once his system is cleaned out, you'll be able to tell pretty quickly if he overdoes it.

You will find a lot of conflicting info on the web. Even on this board sometimes we have a difference of opinion so use your best judgement. You are his best defense and you will be the one who will know best what will work and what won't. But don't let this scare you. You will learn as you go. And mistakes will be made but that is how you will also learn.

It could very well be that he also has a lactase deficiency, but it could also be that once you get the fructose out of his diet and his system, he may be able to handle lactose again. It has happened on here before. The fructose gets the whole body upset and once things clear up, so does other issues. Lets hope.

As for eggs, some people think they have fructose in them and others say they don't. My daughter is pretty sensitive and they don't bother her at all, although she's not crazy about them.

That will be something else you will learn but will never really know. When he gets sick - you will always ask yourself - did he eat something he shouldn't have? Just remember he might have ate something bad BUT kids do get sick and it might just be that he caught the flu..... He might not fell well, OR he might just be tired and crabby.... lol. You will probably learn the difference in some of these things and that is when it will really get easier. But don't let others tell you which it is. If you think one way, that is probably the way it is.

The nicest thing about this site is that you now know you are not alone. We've all been through this either as a HFI person or as a parent of one.

[claudiarivas]

HI heatherp

It takes me awhile to respond here, so if you need me to respond super quickly write me an email at [e-mail]

I understand your journey, but all I can say, is that if you have a reliable diagnosis , the worst has happened.
read my story is here on the board.

I will be sooooo happy to help you out, whatever you need and give you carlitos diet. ( I think I wrote it here, his introduction diet, if not I can send it again)
just let me know.

This board, will be of great help trust me I spent about 4 months of my life connected 24 hours to it and will be forever grateful to all of these people that helped me out, Now carlitos is 100% symptom free and happy. I seemed to know from just seeing things if he can have it or not.... so be patient you will get there.

HFI is what you make of it

so write to me , again, will love to help on what I can
btw TAMMY thanks for the "claudia is a great new mom..."comment I think you are a great mom too

Claudia