I Hate Hospitals

[shan]

a little bit of backround... my 2 and 1/2 year old is a celiac and is doing absolutely great on the diet and knows, so far, what she should and shouldn't be eating...

now for the FUN!! my now 10 month old(this happened a month ago) was admitted to hospital for severe dehydration and they realised that he was malnourished... they forced me to stop nursing, saying it was my fault, stuffed him with a nasal gastric(NG) tube, did a bunch of blood tests, that all came back negative, including celiac, and sent us home with the tube.

after he had it in 3 and 1/2 weeks, i weighed him (that was this past tuesday) and i was so happy he'd put on 400 grams!!! On Thursday i was seeing a top pediatric gastro, and my son pulled out his tube. the prof said keep it out. He also said put him on, which he was on anyway, gluten, dairy and soya free diet. Today, sunday a.m., i weighed him and he'd lost 250 grams!!! i came home and i sat and cried my eyes out!!

then i called my prof, and he said come in and be admitted to hospital for invasive testing... Now i'm really scared!! i don't have a social circle that i can trust my celiac daughter with, my hubby can't take off for the next 5 weeks... my dd is gonna have to be with me at the hospital, every p.m. (my hubby will bring him in his lunch hour) and I HATE HOSPITALS.

I am scared

[Nic]

I am so sorry that you are scared. and that your son is sick. I can't offer any advice except to just hang in there, this too will pass.

Nicole

[Ursa Major]

I wonder if your son is getting enough fat? Children need quite a lot of saturated fat for growth and to be healthy. I think it was a terrible idea to stop nursing (not your fault, of course). It would have been better for you to be on the diet he is on now, because gluten and dairy (and soy) will get to the baby through breast milk and can make an intolerant baby sick.

Why don't you try cooking his food with coconut oil (non-hydrogenated, cold pressed)?

I don't know why he has lost weight again, that must be scary. I am sorry you have to go through all this. I hope you can figure it all out, without your daughter getting sick as well.

[Judyin Philly]

i WISH I HAD SOME ANSWERS FOR YOU.

I can only offers prayers...maybe someone in your local celiac support group could help you out.

this is a scarey time and you need support now and local if possible.

you can go on the front of this forum and see if you can find a local support group

if your comfortable with posting where you live, others might know of friends there or of a link to a group.

good luck.

judy

[Fiddle-Faddle]

How awful for you!

Do you feel comfortable posting what city/country you are in? Maybe there is a celiac group where you are that can set up some kind of support system for you--bring gluten-free meals to whoever is caring for your daughter (and to you, if you need them), provide helpful info, recommend celiac-savvy doctors,etc.

Does he have very big poops? Because that can make a big difference in weight, especially if you weigh him right after he's pooped a big one, especially if he poops infrequently, and he's probably pooping less frequently now that he is not nursing (oh, that must have been so hard for you!).

Two high-fat foods that I fed my babies were avocados and salmon (plain, broiled, and flaked--I think canned is okay, too, though, and easier--just make sure to pick out the bones).

Good luck, and keep us posted!

[Nikki'smom]

I am so sorry you are going through this! I can only imagine how scared you are. Hang in there hopefully the drs can figure out why your little one lost so much weight so fast.

[barbara123]

This has got to be a scary time for you and I wish you and your family the best. It is so scary when you have sick children. You and your family are in my prayers...

[Fiddle-Faddle]

Shan, how are things going?

[shan]

sorry all, been stuck in prison/hospital!!! haven't had access or laptop, which i am now on!! first things, the good news, he's finally put on weight! but before you get all excited for me, it's only coz of his ng tube the first few days we were here, the hospital did nothing, saying they were doing observations!! my prof walked out on me on day number 1 coz i asked for a gluten-free/df/sf and egg free diet!!! i raelised then it would be a long uphill battle... until i found a woman, the hospital fundraiser and public relations, and she pulled strings for me!! thankgoodness for connections!!

to cut a long story short, they have decided its coz he's tongtied that he refuses a bottle and any calorie laden food, too hard for him to digest, so on wednesday they are going to do that, and then on thursday theywill send me home hopefully (PG) and see me as an outpatient!! looking forward to seeing something other than the four walls of my hospital room!!

FYO my daughter came here everyday for the first week, and then she caught some type of stomach bug, and we decided to pay someone, to look after her, take her to the park, cook, and iron!! draining on the pocket, but a relief to know she is in good hands - and since she was cooking in my house where no gluten exists...

thanks for listening to my rambling... it's good to "talk"!!!

[Nikki'smom]

Hang in there!