suggestions please

[Ruth]

Our 11 month old has been pretty ill for the past few months (chronic diarrohea with blood and mucus, lethargy, loss of appetite, horrific screaming with tummy pains in the evenings and night). We're fortunate to have a good paediatric consultant who's been carrying out various tests which have shown up that she has some form of enteropathy, but they're not quite sure what, how or why...

Coeliac disease has been ruled out, and so we've just had to start a dairy and soya free diet for the next month to see if that helps...normal NHS stuff means that we can't see a dietician for another week, but we're expecting to get some info through the post early in the week...that doesn't help us now!

I've done the usual trawl through the supermarket, and although I can find products that are dairy and soya free, they are all low fat. Our baby has been so ill for so long that she's now not even anywhere near the weight and height charts they use to keep track of growth, and so she's also meant to be on a high fat diet....any ideas how?!!!

[Nic]

I have no idea what 11 month olds eat, so please ignore anything that isn't suitable at that age, but how about coconut milk (very high fat - you can make a gorgeous 'custard' with it), nuts (I assume whole ones aren't OK, but how about adding ground almonds to stewed apple, or sprinkled on porridge) or (if you eat meat) making a very rich gravy with the fat? You could do lots of mashed veg (sweet potato, parsnip etc) with non-dairy and non-soya margarine, or olive oil. And eggs (especially the yolks) are also high in both fat and protein.

I hope some of this sparks some ideas. As I've said before, www.vegweb.com (http://www.vegweb.com) and then adding the meat back in (its a vegan website) can be a good source of ideas.

Nicola

[rebecca c]

Nic has given you some good ideas. I dont do soya or milk amongst other things and have a weight loss problem. But I am an adult so what I eat is probably not suitable for a baby. My dietician at Guys says the weight gain will be down to adding sugar and fat so putting sugar on things and adding margarine where possible. Have you got some pure sunflower margarine? - you can use this for home baking. I make nice cakes with it and rice flour. And as nic says olive oil, what about animal fats? - I havent tried this yet because I am worried about non organic fats concentrating toxins but I was thinking of trying some goose fat on my roast potatoes. Lard in biscuits would be good baby fattening food I'm sure. Maple syrup is a good one too - very tasty and not very likely to cause allergies. Apart from honey I am now out of ideas. She also said I should be eating 3 meals and 3 snacks a day, but at 11 months my boys were both still mainly relying on breast milk for their nutrition. If you are still breastfeeding you will need to watch what you eat too.

Good luck - I hope you find the cause and she gets better quickly. My first session with a dietician was very good and has helped me to feel supported and less anxious so I hope you find a good one too.

[matt]

don't be too concerned with the fat content, just concentrate on getting food into her and keeping it in long enough to do some good! the fat you can worry about later.

is she on solids yet? just liquidize whatever you have for meal and make sure you prpare it all fresh without soya or dairy. good luck with the dietician.

[Pam]

When my daughter first went seriously dairy free she was a faddy eater and underweight. The dietician suggested adding extra fat and sugar to her food but I rejected this option. I don't want her to grow up with a sweet tooth or no teeth and too much fat is unhealthy. It is far better to stick to a balanced diet.

In the end I stopped seeing the dietician and although she is slim my daughter is not unhealthily underweight. Don't panic too much about weight gain. You will probably find that once you have removed the bad foods she will start to put a bit of weight on anyway.

[ellsie]

Does she like eggs? My daughters liked french toast and you could add a little water to make it runnier before frying. Bananas,pasta with a tomato sauce with ham or bolognaisse. Also I use mayo in a lot of my food which has a lot of oil in it, just be careful as some have added milk. Helmann's original is what I use.
Good luck!

[Jazzingal]

My little cousin had the same problems that your baby has when he was a baby and i know it was dairy, Ruth i'll get the information off of my cousin and what foods she gave him etc and i will get back to you as soon as i can.

[tigerlily]

Well, neither nuts nor maple syrup are suitable for a baby of 11 months!!!

Eden has been where you are now. Yes, I agree, it is an uphill struggle initially and takes a LOT OF adjustment...but the good news is that you will get there!!!!!
Eden's dietitian has never told me anything I didn't know already...so I wouldn't put too much hope into that appt., I'm sorry to say. But she may be able to put your child on a special HIGH-FAT shake such as INFATRINI which is to boost weight gain in underweight children (due to illness). However, make sure they prescribe one that is DAIRY-and SOYA-free as not all of the shakes are. It worked wonders on Eden and children can be on them for as long as they need to be!

GOOD LUCK!!

[Ruth]

thanks for all the advice. I've managed to get a dairy and soya free margarine that has made a fairly decent sponge pudding (and the other children didn't complain). I've also been prescribed a formula called Pepti which she wolfed down, even though I was told that it would probably need flavouring. I am still breastfeeding, but the idea is that this formula will stop her needing to feed several times in the night (knackering when I'm then having to get up to get others to school and playgroup!).

But this diet seems to be having some sort of effect as Cate seem pretty perky and has begun crawling around for the first time in several months. Can anyone tell me when we would see real results though...nappies are still pretty loose with lots of blood and mucus still...or does this mean that dairy and soya aren't the only allergens?

[cnc]

Toxins take a while to come out of the system, people here experienced improvements after varying timescales, I think 6 weeks was about average.

[tigerlily]

Oh yeah, the PEPTI! It's not that bad.

Has your daughter been tested for Cystic Fibrosis? I'm just wondering about the blood in the diarrhea. Why not have a test done to determine whether there is more going on than dairy and soya allergens? The RAST comes to mind.

It took only about 2 weeks with Eden to get better after having taken dairy out of her diet. But everybody is different.

Vanessa.

[matt]

chase the doctors to make sure they have checked and tested for everything. it'll take her system a while to recover from that much. give it a while but keep the doctors on their toes.:)

[Ruth]

we've had the RAST done, but we won't get the results for a couple more weeks. The consultant said that if something comes back positive, then great, but a negative means nothing, and so will have to continue with exclusions to find out what's going on.

We had a bad night though. Cate drank several ounces of the Pepti last night instead of breastmilk and was pretty miffed when she realised that she had to go to bed! She did go to sleep, but then was up in the night with stomach cramps, and today's nappies have been as bad as they were several weeks ago.

Must admit, am pretty frustrated with the whole thing as we still don't know what's going on!!!

[cherylm]

Having lived in the land of the stinking green nappy in the past my thoughts go out to you! Took a long while for Ben to get back to normal even after we stopped the milk and soya, used to give him mashed advacado with mayo and tuna to help with the weight gain!!

[cara]

I feel for you having just read your post. My daughter, now 2 1/2 suffered from all of the symptoms you described the worst being the screaming and holding her belly. She is allegic to milk and soya with intollerance to egg. She was also tested for coeliac disease (blood test) which came back negative but at 18 months a biopsy was taken and the coeliac disease was confirmed.

So now we are getting the hang of avoiding milk, soya, egg and gluten. The most complicated part being her older brother and trying to find alternatives for her that appear simmilar to foods like yoghurts, icecream etc.

But since we have stuck to the diet strictly all of the bleeding/mucous, bellyache and screaming have gone and we have a happy little girl who is now on the 9th centile. It did take a long time for the symptoms to subside it was atleast 6 weeks befor we could see a marked improvement.

Im amazed to hear you had no probs with the pepti junior my girl hated it and ended up on neocate, which doesnt have that funny malty smell to it.

We were advised to add foods like streaky bacon, stewing steak and meats with the extra fats the rest of us avoid. we didnt agree with the dietitian about adding extra veg or beef fats or the prescribed glucose deriviatives to boost calories as it seems unatural. But we gave maxijul a try for a month (calorie powder) and she responded so well it was almost as though she couldnt eat enough to keep herself going and heal at the same time and after 8 weeks it had really set her on the right track.

If you are still in need of any free from recipies drop me a line.

Good luck. Cara

[Ruth]

THe neonatologist has said that if she hasn't put weight on by two weeks (and so far she hasn't ) she'll get bumped up the list for an endoscopy...we were convinced that it was coeliac (as have all the doctors so far) so it was interesting to hear that you needed the biopsy to get a diagnosis

[Kamagrian]

I don't have children so I unfortunately can't really help (and I hope you don't mind me posting on that basis!), but I just wanted to send you my best wishes that things improve for you and your little girl soon. Sounds like you're having a pretty rough time, so I hope you get some answers from the dietician and other tests.

Gill x

[matt]

to test for coeliacs. can do blood test but
1, it's not 100% accurate
2, if you haven't been eating wheat then the antibodies they are testing for won't be there

so the only way to make sure is a biopsy, this takes a small peice of the intestine and they can then look. coeliacs causes the fillia, litle hairs , on the inside of intestine to go away and not work properly. so by looking at them they can see the damage and hence diagnose the condition.

good luck hope things clear up soon

[Copper]

A small correction here Matt

Cilia (pronounced "silly-ah", from the Latin for "eyelash") (and not spelt "cillia") is the plural of cilium. A cilium is a microscopic hairlike process extending from the surface of a cell. Capable of rhythmic motion, it acts in unison with other cilia to cause the movement of the cell or the surrounding medium.

[matt]

at that time in the morning it's a minor miracle that i am capable of writing anything that resembles english let alone get it accurate. the idea was there.!:lol2:

[Jules]

Ruth,

With my little angel it was mashed banana, she ate it all day long. Peeled grapes and peeled satsuma's as well.

We also tried (and had success with!) American Pancakes (made with soya) and Honey, French Toast, home-made stews, butternut squash and pumpkin smoothies (with a little soya) and Mango.

HTH.

Jules

[Zarina]

My 18 month old son has Wysoy formula and my dietitian suggested I make custard, rice puddings, mash potato, etc for him using the formula, he can't get enough of the custard and because it's made with the formula it has plenty of calcium, vitamins, fat, etc.