Re: Feeding suggestions please and some questions

[Guest guest]

I'm new at this also , Dakoda was diagnosed with rss, but the specialist thrg

magic Dr. H told us sga , she is the best in the field i blv. anyway he had his

second diag last month and jenn tld me about complex carbs and protein every two

hours he shld eat, starch in last feed at night, since doing this he is alot

less cranky and attention is improving , these guys on listserve are great they

will help you , I do use glucometer and ketone strips now neg almost always on

ketone strips but have found trace today but he had a bad couple of days eating

which is scary , seem like the more food we force the more he refuses but we

keep tryng and hes doing better since we been tlkng to jenn and katy and the

rest here I learned alot. You will have alot of ansers tmrw . I sorry i can't

help more, Dakoda just isnt a real big eater and never has been , now I know why

do to fact these guys can fast for long periods. which isnt good. I always

wondered why he never cried whn I tk his bottle away at

1yr , to sippy cup , now I know why. I just wish I had known sooner. Good luck

and let us know what geneticist sys about your wee guy.

Sheryl

brody1212 wrote:

Hi!

We are waiting on a diagnosis on our wee man.

He is just about 10 mths old and was 11lb 6oz a couple of weeks ago

and 62cm tall.

We had a visit to a dietician and we need to be feeding him some

more fats and protein.

I am still breastfeeding (which she acknowledged but sort of brushed

it aside).

I need some suggestions of what to feed him re: the fats and

proteins.

I will not give him meat and am not keen to put butter and margarine

in his meals.

I won't give him dairy products as some of his older siblings have

had severe dairy allergies.

I was thinking goatsmilk and goats yogurt. Maybe goat cheese as well.

Also tofu. Have tried him with lentils bit he is not keen but will

keep giving him small tastes and hopefully he will get used to it.

I am lucky that he does eat and eat lots. Mostly brown rice cereal

cooked up with dried figs (has sorted his constipation out) and any

other fruits (But I keep away from apples)and will eat kumara (like

a sweet potato) with pumpkin and silverbeet/spinach added. He also

likes muesli fruit sticks to snack on, stewed pears/prunes and he

ate some banana for me the other day. He also enjoys a biscuit if

the other kids are eating or a crust of bread or suck on a cracker.

He doesn't have any teeth or any sign of teeth yet.

It takes a while for him to get used to something but once he is

used to it he is happy to eat.

Some questions:

Are RSS children late to get teeth?

He has slept through a few nights this week and I'm worried about

the possibility of hypoglycemia. I just spoke to the pead and she

said it would only be a problem if he didn't have anything for

tea!!!! But on reading postings here it seems to be a big problem

with some kids. Is there any way to know without testing his

ketones? What should I look out for?

We are waiting for chromosome tests to come back and it seems that

is will be a few months before we are seen by a geneticist. They are

taking photos of Cajun to send through to the geneticist to get an

idea if it is RSS or not.

Anyway..any help or ideas would be great.

Thanks

~ and Cajun (in NZ)

[Guest guest]

hi heather!!

yes rss kids tend to get teeth later, christopher didnt get his first

one until 11 months. at 10 months old he should still be feed

something during the middle of the night. how is he when he wakes up?

i dont have any food suggestions since i didnt feed my son the types of

foods you fed yours, but someone else on here may have an idea. i also

breast fed christopher, but i also supplemented with formula (soy) as

well. good luck!!

jodie c

[Guest guest]

Just a little advice as your RSS child gets older (mine is 15 yrs

old). Be sure to have your child followed by a pediatric GI doctor.

One aspect of RSS in some cases is malrotation of the intestines and

lower bowel and adhesions. This can make it very uncomfortable for the

child to eat, especially solids. Also, if the child has these

problems, the appendix won't be where it's supposed to be,

necessitating an appendectomy. My daughter's appendix was on the left

side of her body under her first rib. At the age of 4 she underwent

laparascopic surgery at the urging of her GI doctor who suspected these

problems based on upper and lower GI tests (which I might add are very

easy for the child) even though the GI surgeon doubted there were any

problems based upon how he read the tests. The doctor was right and

the surgeon was wrong. My daughter's whole GI tract was a jumble. The

surgeon tried to straighten things out as best he could and that's when

he found the appendix where it was. He installed a GI tube and my

daughter still gets 95% of her sustenance from nighttime feedings. She

does eat some but we continue the feedings to make sure she is

receiving the proper amount of calories and nutrition.

I also have some advice about speech therapy to facilitate feeding but

I'll save that for another post