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Allergies and intolerances

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I need some help

22 replies

susy80 · 23/08/2010 09:44

Hi Mums,

I am new here but I really could do with some support or advice.

I have a daughter of 10 months who has been diagnosed with allergies (she had the RAST tests and was graded) to Milk(dairy),eggs,fish,nuts,wheat,soya.
She is on nutramigen milk and has been since diagnosed.

She also has bad eczema and itches constantly.
My dietician and dermotolgist have worked together on this and I have an appointment on wednesday but I feel exhausted.

LO is up every night sometimes 2 hours other times nearly all night and I am just so tired as is my husband. She has steroid creams for her eczema but they have not been helping much of late. last time I saw the dermo nurse she put her up to Elecon as she said the Eumovate was not controlling it.

Apart from her eczema she just cant get comfortable at night. she kicks about and fidgets as though she cant get comfortable for hours.

She goes to sleep ok at bedtime but the nights are just hell.

Has anyone any suggestions or experienced this - I have run out.

I have a suspicion that something else is going on. She has a lot of wet nappies and drinks a lot (of water) and frequent bowl movements (4-5 a day)
She has lost weight (on 9th percentile now) and is not eating much at all. I find finding foods without the named foods above really difficult. I have just rung her dietician but she seemed to want to get off the phone as soon as possible leaving it to the dermotologist to sort out.

OP posts:
Jaybird37 · 23/08/2010 11:40

Poor thing.

Prof Gideon Lack is a paediatric allergy specialist who I would definitely recommend. He is lovely and a world expert.

babybarrister · 24/08/2010 21:12

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susy80 · 25/08/2010 08:56

That's interesting Baby - Thankyou

The few days ago Elisa developed what seemed to be a chest infection,cold,cough wheezing....We went to the Doctor and she gave us Amoxicillin.
We went home and an hour or two later Elisa started breathing quickly and heavily so I took her to hospital. They calmed her down with an inhalor (her heart rate was very high,she was very lethargic and pale) They though it was an asthma attack but said they could not diagnose it in her as she was too young. They also gave prednisolone for a few days and have us the inhalor and mask.

This is getting complicated!

Would you have to be referred to Gideon Lack or is he private?

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LI13mtholdboy · 25/08/2010 09:37

susy80, I had to register to be able to talk to you as I finally feel like I'm not alone...and after 13 months that feels pretty good!

My son Evan was diagnosed LI after 7 months. He was put onto LF formula, then soy, both to no avail. After seeing a paed he's now on Neocate - we had some initial success but now struggling again still with the screaming nights. We've also had some eczema appear recently on his tummy and back, and they also suspect asthma but can't yet test for this as apparently he's too young.

I'm in Australia so not sure if you can get Lucas Paw Paw ointment over there (it comes in a red tub) but that could help with the eczema. I know it sometimes relieves Evan's but don't know if his would be as severe as your bubs.

Just wanted to say rest assured you're not alone!!!! :)

susy80 · 25/08/2010 09:43

THANKYOU LI13, Sorry about your little man, it is horrible for them especially when they can't communicate properly. I am really glad I found this site and have found people who relate already, I feel much better now!

I am off to the dermotologist today who really is the only person who has taken my daughter under her wing at the hospital and who I have a lot of respect for.

I wonder if their chests are hurting them or painful at night and that is why they can't sleep? Elisa has one night where she seemed in severe pain and I put it down to colic but now I think it might have been her chest.

I will let you know if I get any more info.

Thanks again for registering to reply :)

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babybarrister · 25/08/2010 18:59

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Jaybird37 · 26/08/2010 01:54

Prof Lack has both an NHS and a private practice.

LI13mtholdboy · 26/08/2010 06:38

Hi again

Nice to hear back from you - it feels so good to know that other people are spending nights awake and having no idea how to make their pain go away.

That's great that you've got someone listening. Hopefully she'll help her. My paed isn't returning my calls after 2 days and I'm getting annoyed...but went to a pharmacy today and got some antacid sachets to add to his bottles which hopefully might help after reading on here that some bubs get windy from Neocate.

What's your daughter doing at night? Does she pull her legs up, is her tummy gurgling, etc?

susy80 · 26/08/2010 06:48

Hi 3month, Well didnt get anywhere again with the dermotologist, she was only interested in her eczema (not what was causing it or anything else) Getting really fed up now.
My daughter had lost weight again yesterday (17.6lbs @ 45 weeks)

At night she goes to bed ok but wakes a few hours later and can't get back to sleep, she keeps turning around,kicking about and generally can't get comfy,often crying ( this last up to 2 hours) It's like she wants to sleep but something is not allowing her to do so. I wish she could speak!

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nottirednow · 26/08/2010 07:07

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susy80 · 26/08/2010 07:17

Hi Not, yes she has had piriton for quite a while now but it doesnt tend to do a lot for her. Dermo gave us some vallergan again yesterday and that helps for a little while, but it is a short term solution and it tends to stop working effectively after a week or so. I do need to add more fatty foods to her diet though - HV said I should be using more oil too etc and I shall get some avacardo.

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nottirednow · 26/08/2010 08:25

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LI13mtholdboy · 27/08/2010 03:43

Hi Susy

That's bad news about the dermatologist. Could she be getting too hot at night and that be causing her to get itchy and wake up? I'm sure you've already thought of that one, but just trying to think of as many options as possible! :)

Perhaps you could try playing with her diet? I had to do that with Evan. Go back to just his Neocate and cooked apples, then gradually add things back in.

I tell ya, it makes you wonder doesn't it? I know I say to my doctor all the time, 'Was it something I did? Did I do something wrong while I was pregnant to cause this to happen?' Of course he says no, but I know I just wonder...then I see girls out of my mothers group who are pregnant again - and I think NO CHANCE IN HELL! haha :)

babybarrister · 27/08/2010 07:31

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pompncircumstance · 27/08/2010 11:30

...well its now FRiday and she has been on the antibiotics a week and has her asthma medication the hospital gave her.

She is constantly thirsty now and only drinking water with a wet nappy almost constantly,(I hope this is just because she has been ill) She is still not eating and is irriatble. I don't know what is going on in there. I am starting to think I am going looney! Its now the weekend and a bank holiday and no way they will have a free appointment (my Dr is pretty unhelpful in my experience anyway)

She has slept better after I gave her some vallergan the past couple of nights prescribed by dermo.

I don't know why they havent sent her to an allergist already anyway tbh.

3monthold. I sometimes think that too....I am not sure I could deal with another going through this.

pompncircumstance · 27/08/2010 11:35

Sorry changed my name there from susy80 :)

I am sure I sound like some crazy, over neurotic mother here..............sorrry

nottirednow · 27/08/2010 16:34

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pompncircumstance · 27/08/2010 16:52

Thanks not, I am going to see how she gets on in the next few days. This site is awesome, thanks for all your help - much better than all the NHS put together!

MumOfTwoToo · 27/08/2010 21:20

Hi PnC!
My son is now 14 years old, but went through dreadful eczema, food allergies to dairy egg and nuts, asthma causing hospital stay at 9 months old (though the doctors were very reluctant to label him asthmatic then....he is still using puffers today!), so I know how worrying and exhausting this can be.

Have you considered clothing and bedding? Fit the cot with a dust mite cover under the sheets. Keep dust in the bedroom to a minimum, and don't put lots of cuddly toys in the bed. Use a low allergen washing powder, not biological.

I know that is won't tackle the weight loss, but if your daughter can't sleep and get comfortable at night, it might be worth considering. (if you haven't already of course!)

Good luck!!

nottirednow · 28/08/2010 06:05

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pompncircumstance · 28/08/2010 19:56

Hi ladies, Just wanted to say my Little one has been eating today and seems to feel a lot better. She is still wheezing a bit though and still has a cold. Overall I am just glad she is eating now. :)

LI13mtholdboy · 31/08/2010 04:36

Hi there

Glad to hear that news! At least if she's eating then she might put some more weight on.

We ended up missing our paed's call on Friday night and now going up to see him on Thursday, so fingers crossed he has some options for us.

It's my mum's birthday tonight so for the first time we're going to try and venture out tonight for dinner...fingers crossed for that one too!

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