living with kids with allergies group

[hinkybinky]

It was amazing when it first cleared up, although it does still come back, he's got a rash on his chest and arms at the moment. It's never been quite as bad though.

Stanley's rash cleared up totally in 24 hours when we swapped him to soya milk. I have photos that show full body rash one day and beautiful clear pink skin the next. Sadly it was short lived and 48 hours later the rash was back with a vengeance, but it was wonderful while it lasted! Nutramigen hasn't had the same miraculous results unfortunately, but it's 10 times better than it was. I have so many photos of his eczema, and at it worst it is now quite shocking to me.

Here are some photos. The first three are when we first realised the eczema was linked to his milk, after he'd drunk only formula milk for 2 days and broken out all over his body.
The next one was his tummy 24 hours after starting the soya milk, almost clear.
And the last one was when he started reacting to the soya (he was still drinking only fluids at this stage to help us rule out anything else).

Do you think it's worth taking these photos to show the dermatologist / dietician when we go? Don't want to appear mental, but it's worth them seeing it at its worst, do you think?

 

[Jemma_x]

Poor little man, that looks so sore. Id take the pictures to show how bad it was at its worst

 

[Khloeee]

Yes definitely show them the pics. I found that, sadly, I was listened to more when Arlo's eczema was at it's worst, or when I showed photos.

Breatsfeeding for me still feels like a double edged sword. I know that it must have some benefits for Arlo but all I keep seeing are the harmful effects my milk has on him. If he had taken a bottle a few months ago, I would have been very tempted to switch to formula, as my gut instinct tells me a hypoallergenic formula would sort out his skin much better than my milk.

I also get the 'oh his face is looking so much better' comments from friends. Oddly, it's usually when his face is quite bad...I think they just say it automatically to be nice and maybe they don't know what else to say. I just nod and smile, they don't get that although one day it can be looking great, the next day it's back to square one.

 

[hinkybinky]

I have ordered a tin from my local pharmacy. I will try it and if she is better I will go to my GP and ask him to prescribe it!

Have you started the Nutramigen yet? Let us know how it goes

 

[happyface82]

HinkBinky I think you should definitely take those pictures with you! Doctors seem to think that we exaggerate so it will be good if you have some proof of how bad things were!

I will start with the Nutramigen tonight! Fingers crossed it works well. She is not that bad at the moment but I want her to be perfect like she was a few months ago! Is it too much to ask?

I've been giving her just veggies for the past 3 days and she has been better, will re-introduce beef soon and see if she is slightly intolerant to it as well.

 

[happyface82]

Oups pharmacy didn't bring the milk as it was out of stock from the supplier. Will have it in the next couple of days!

 

[buttonnose82]

morning girls, how are we all and our little ones?

Think I am going too take Little Man too the dr's today, he is having some tummy trouble again and I have no clue what it is, he is also back too pooping pure slime (we were getting firmer stuff as he is eating more solid food) he can literally go 3 times in 10 mins and fill eat & every nappy I dunno if it is a tummy bug or what

 

[Jemma_x]

Did you go to the docs hun? Thats exactly what connor was like with pooing before he was diagnosed with his wheat allergy, i was going through hundreads of nappys. I hope hes ok

 

[hinkybinky]

morning girls, how are we all and our little ones?

Think I am going too take Little Man too the dr's today, he is having some tummy trouble again and I have no clue what it is, he is also back too pooping pure slime (we were getting firmer stuff as he is eating more solid food) he can literally go 3 times in 10 mins and fill eat & every nappy I dunno if it is a tummy bug or what

That sounds a bit worrying, poor little man and poor you with all those slimy nappies. Hopefully it's something that will pass, good luck at the doctor's today

 

[hinkybinky]

So it's 2 weeks today since our urgent referral to paediatric dietician which should be within 2 weeks. I got a phonecall yesterday from dietician dept at local hospital, saying basically the paediatric woman has been off sick, she's back now but was going to have to fit in her appts "as and when". Could give me no idea of how long it would be, weeks / months...

Asked if I'd prefer to be referred to the hospital 13 miles away, they could pass it over as urgent and again we'll be expecting an appt within 2 weeks. I said ok, so now we are back to square one with this referral. Feel liek a bit of a mug for not putting up a fight and insisting on being seen asap. Oh well, we will see how long we are waiting this time

 

[buttonnose82]

Morning girls!

we went too the dr's and she asked me too take a sample in which I did, they are sending it away too test for infection and if that shows nothing they will get him seen at the hospital results should be back late tomorrow or friday on the sample

The dr wants me too get his weight checked so I am off too baby clinic with him this morning

his dietician just so happened too ring yesterday afternoon, she wants me too email her when I know whats going on with him, but she did say she wants him eating LESS fruit & veg and MORE cakes & biscuits because he is getting very very little fats or high calories because he won't have food made with neocate! so she wants these bulking out with cakes & biscuits lol, I had too laugh, most parents are told too give there children less cakes & biscuits and more fruit & veg and I am being told the opposite lol she did send me a email with 42 pages of dairy free/soya free (as well as wheat, gluten, nut free etc) recipes of cakes & biscuits too help him get those fats & calories! I'll have a good look through it later and post any that look good!

 

[Jemma_x]

Connors exactly the same, he lives on what id class as junk food i hated it as first but if thats whats best for him so be it. Connors got diatician tomorrow so shes going to moan about his weight. Hes lost last time i had him weighed so will just have to hope hes gained tomorrow

 

[happyface82]

Buttonnose I'm glad that the doctor is on top of it now and can soon see a specialist!

Jemma I hope Connor has put on some weight!

Katerina was really bad last night. I was up with her from 330am onwards She had beef yesterday after a few days of just veggies. I have a feeling though that problem is not the beef but the fact that its processed.

I read this article while I was rocking her all night
https://healthy-family.org/caryn/10...poallergenic-formula-it-may-be-a-corn-allergy

It mentions something about intolerance to MSG which can be found on certain milk formulas and can also be found on processed meat. When I read it it just clicked. Nutramigen is free of that substance and Katerina was well on it, Neocate is full of it. Katerina also seemed to react a bit on chicken and slightly on Turkey and it was all processed.

Please tell me this sounds like it *could* be the problem for us?

I'm back on veggies today and hoping I can get the Nutramigen soon!

 

[Arcanegirl]

It sounds like it could be happyface? Will you take steps to cut it out of the diet to see?

Junk food, yep Alexs diet is like that aswell! I laugh at those threads about too much junk/processed food and wonder what they would do if thats all their kids could eat!
Im not too worried, Alex is a great eater with fruit and veg, he just gets those along with his Birds Eye chicken dippers and Asda curly chips

 

[Arcanegirl]

Button, did they mention to you about meats aswell for bulking up?
Alex likes alot of minced things, and since mince (especially beef) can be quite fatty i make foods for him with that.

 

[happyface82]

I will cut it out yes. I will try and get the Nutramigen ASAP and I will start her on veggies again from today. Maybe with some pasta etc. and then I think I will wait for about a week. If she is better then I can safely say that this might be it and I can hopefully start re-introducing some foods!

 

[Arcanegirl]

I hope it works!

 

[buttonnose82]

AG no she didnt but will try that, he does seem too like mince (sadly he loves spag bol but he seems too be sensitive too the tomato )

It's like the headline of a true life mag .......'I feed my child junk food too keep them healthy!'

lol

Little man has dropped down his weight chart again, he is now below the 25th

 

[happyface82]

Buttonnose I'm sorry his weight has dropped again I hope you can get some answers soon!



I got some soya yogurt to try Katerina with. I'm thinking if she is ok with it then maybe I can move to some soya milk? Do you think this is a good idea? I just can't sit around not trying smt when she is still unwell!

 

[Arcanegirl]

Certainly worth a try!

Button, Alexs favorite is mince and potatoes with carrot swede onion and gravy! I add chilling powder to make it less bland aswell. Could also try something like Somerset pork casserole with pork mince