Need Opinions from All

[kkretzmer]

Hi,
We re looking for help from all of you in figuring out which of our specialists are correct! We have been told of course that dextrose is fine... but how about "corn sugar"/corn syrup solids? Our latest dietician says that dextrose is "corn sugar" so wouldnt that mean then that corn syrup (no fructose of course) would then also be ok?
Our daughter is now 8 and has severe HFI... is tube fed as well as eats what she can by mouth and is doing fabulous! I however am pregnant and looking for formulas that are safe for the new baby. Our geneticist feels that since our 8 yr old and our soon to be 10 yr old (he has much less severe HFI) have HFI that it is a high chance that the new baby will too have it and might possibly be more sever than our daughter. Since she does not want us to take any risks we need to research now what is safe and with the controversy between dextrose or corn sugar our Drs do not know what to believe now.
So I turn to the REAL experts here! We allow our daughter to eat various candies with dextrose and she does very well with that even though she still avoids most foods her intake has greatly increased in the past year. Her formula is NOT one that can be taken orally by an infant so if we can not find a safe formula they may want to immediatly give the baby a G tube as well which we would like to avoid (however no night feeds wouldnt be all that bad LOL). We have to laugh at life sometimes right?
Thanks in advance for any advice and any formulas you all have possibly thought of. BTW our daughter's HFI is so severe that even getting one small amount of sugar will put her into a comatose state for three to four days. So we really cant play around with this at all.

Kimberley

[Tammy]

Hi Kimberly,
Similac is the formula that I used and it looks like it is still safe. You can check out the ingredients here:
www.nextag.com/similac-formula/search-html
I'm guessing that breast feeding isn't an option since that would be the Dr's first preference.

Pure corn syrup is ok, IF you can find it pure. That is the problem. All the corn syrup used commercially in the states have fructose added. So if you read corn syrup on the label, even thought it doesn't say HFCS, it most likely is. We advoid all products that list any type of corn syrup.

Even though your other 2 children have HFI, it is still only a 25% chance that this new baby will have it. I would think a safe formula would be fine without going to the extreme of a GI tube right off the bat.

My daughter also gets sick with just a small amount, but not nearly as sick as yours. She also does well on the dextrose candies, and also on the sugar alcohols. She loves her chocolate!

Wishing you luck, and hoping all goes well.
Let us all know how you make out.
Tammy

[Chelsea]

Kimberely,
I have left the rest to the experts here; I am still too new to answer most of your questions. But I am a lactation consultant so if there is anything I can do to help you in the area of breastfeeding please feel free to email me directly.

My Dr's were puzzled in coming to a conclusion with Gillianne because she had never had any symptoms until 10 months old. As I really got into her history with the genetics team they finally realized she didn't have any symptoms because she had been exclusively breastfed for 10 months before solids were started. She never had formula or rice cereal or anything other than breast milk. Even when I started solids, I didn't start how they typically recommend, starting with a food for 3-4 for days (mostly fruits first) and for that I am extremely thankful. When she started solids, it was pretty much whatever she grabbed and that usually was potatoes, pasta and green veggies.

Again, If I can be of any assistance in that area I am more than happy to help.

[kerrynz]

I thought I should add my two cents worth, I have some impute you might find interesting, things I have noted and seen in the last few recent posts.

The topic of speech delay – this seems real does it not. We looked at therapy and then decided to do it ourselves, it seems to be working but you can’t hurry a snail only make the path easier.

Zanoah has clear words and quiet a large vocab. But not the ability to put a sentence together, So every day we get her to parrot after us sentences, one word at a time. an eg. Please mummy can I have another swing thanks.
Now if she says two words together we are happy, when she uses a word we put it in the proper sentence for her, the other day she said “I think I full”. It was great.

The topic Water – Is it a fish or child? She drinks plenty almost over kill, and yes the glasses in the middle of the night. I try to overcome this by giving the drink after the last snack at bedtime. So much for toilet training LOL. Plus pre school complains she always has a wet nappy.
But being two ½ years old she does like to come into our bed, I’m trying to train her when she arrives I say have the drink. [That she has already picked up, its not my thought] Then I tell her hop in and when you go to sleep mummy will put you back in your bed. If she complains I know it’s HFI and she needs milk.

Topic Vaccines – Yes we are very wary of them and as I’ve said we have done the medical paper work to stop the rest it’s called a Medical Contraindication here. We saw our first small seizure, I looked it was the HIB [pedvax and polio].

We for personal reasons at Zanoah’s birth chose of the two normal vaccines Vit K and Hep B Not to give the Hep B, we are happy because we now know Hep B is full of sugar, she was already vomiting from formula, I wonder how much damage or danger she would have been in if we gave her the shot.
I have not yet checked the Vit K for safety.

Kimberley one of the easy ways two do this is find out the brand and then go to a chemist and ask for a print out of the drug ingredients. Check the INACTIVE or filler ingredients they are where the sugars hide.

I asked myself the question How long did it take on full diet for her body to say Yeah I’m Ok. And move forward with leaps and bounds Like we are doing now. My answer a good six months on a clean diet, and the cleaner she gets the more water she drinks most days.
So don’t despair after you know it’s right let the body heal and let it’s calmness set in, it takes time.

I, because my list says no vinegar / alcohol I have not tried things like mayo and our latest when I gave her an egg, 24 hrs later she had diarrhoea and LBS 3.2. This was an explanation as to why she won’t eat anything with egg. I offered her one today and she refused to eat anything for that meal her reaction was so strong. Interesting.

If I give her a safe food, she has not yet tried. I tell her this is ok, she still will only eat half the meal, this goes on for three separate meals. [it appears as no appetite but it’s not], its just her safety button, so I still have to work on patience cause it all takes time, so don’t over look their wariness or mistake it for no appetite.

We tried chocolate and pure vanilla bean both were awful
Enjoy the journey it could b worse that’s what Zanoah’s dad keeps telling me.

Kerryn

[lisa]

Nate eats eggs and toast probably 4 - 5 days a week for breakfast and hasn't had a problem with them so far as I can tell. Some days he eats more than others, but he is always excited about breakfast in general.

Water: I think Nate drinks between 32 and 48 ounces per day depending upon his activities and being sick or not. The point about the milk at night is an interesting one. I'll try it to see if it helps. Over the last week sleeping is better. I leave a sippy cup of water by his bed and when he sleeps with his sister he will stay there most nights.

I was looking at Kristin's diet list and there were actually a couple of formulas on it: RCF Ross (Carbohydrate-Free Soy Formula Base With Iron); Similac (Infant Formula With Iron). Hope that helps.

[laurie]

first of al..........wow kimberly, congrats on the new addition to the family!!
i wish i could give some advise on anything, but i'm drowning in a pool of information that i can't seem to sort out myself......haha.
hunter diet is only milk, water, diet 7up, toast, eggs and mac-n-cheese.
i can't get him to try anything else, and it seems here lately we're back on the toilet a lot even with just these items.
he did make it through 3 whole days of school last week though, so i guess i should be thankful for that. i'm wondering if he worked himself so hard at school, not drinking like he does at home, if that's why he's been waking up in the middle of the night. (he normally doesn't get up once he's asleep)
with a sick child it's so much harder to decide what's normal, a phase or a problem!!

laurie

[lisa]

Laurie, watch the diet 7-Up. Here they have started to make it with Splenda. Diet Sierra Mist is still made with aspartame though.

I remember you saying that he liked KFC. Will he still eat that? Reason I ask is that I noticed a big change in desire to eat meat (other than Chicken nuggets) after Nate started the diet. He won't touch any of it now (beef, pork, chicken, fish) and he used to eat it all.

Hey, I just thought of something that might be a good treat (well, maybe when it is warmer). What about mixing yogurt with diet soda and freezing it into popsicles or even just freezing the soda?

[lisa]

Sorry, I need to clarify - the 32 - 48 oz is made up of milk and water together. Lately it's been mostly water/Pedialyte because he's been sick. Went to the doc today and she thinks it's a sinus infection.

Have you tried french toast? I make it with sourdough bread, eggs, milk, vanilla & cinnamon. Topping is dextrose mixed with cinnamon. Sometimes I add stevia to the egg mix and feed them to him plain. If he doesn't like the sweet, you could just omit that part.

Another thing I've tried is pancakes with cheese in them. I make a lot when I make them and freeze or refrigerate them. They are good as snacks and maybe that is something he would eat at school. (I'm supposing that he will still eat bread?) Maybe you could even cut up the ham and put chunks of that in there.

I feel terrible that he's not wanting to eat. Crossing my fingers that he gets over it soon.

[jenferg]

To All- My son also has a poor appetite, but I allow him to control his intake. I have found that fighitng with him to eat just makes it worse. I am a physical therapist for children and have hundreds of hours of training in a technique called Sensory Integration. I have noticed my son has significant tactile defensiveness. It would take a whole page to explain exactly what I am talking about. I will refer you to sinetwork.org. I think sometimes we think that our children don't want to eat because of all the GI stuff going on, but I think that the GI stuff causes tactile defensiveness and this leads to more eating problems. Hope I haven't confused you. Jen F.

[jenferg]

Kimberly- I gave my son goat's milk instead of formula as at the time i did not know that my son had HFI, but I did know that any formula I gave him made him sick. I remember when he was 6 months old, he would see a bottle and cry and refuse to drink it, even though I knew he was hungry. The doctors hated my decision, as they told me that goat's milk did not give him everything he needed. I told them that until they found something else that wouldn't make him sick, that was what I was going to give him. We live in a small farming community, and any older person I talked to told me that many kids in their day grew up on goat's milk, or cow's milk for that matter and are fine. I chose goat's milk rather than cow's milk as it has much less lactose and my son is moderately lactose intolerant. Hope this helps Jen F.