living with kids with allergies group

[hinkybinky]

Hello ayh78!! I'm new to the milk allergy stuff but my LO is on Nutramigen 2 (I stopped breastfeeding about 8 weeks ago). Have you thought about dreamfeeding him, either with breast or formula, just before you go to bed? It might help him go through a bit longer at night and then it's not interfering with his solids.

Good news about Connor's weight gain Jemma, at least that's one less thing to get worried about.

happyface It sounds like LO might be ok with soya - my LO developed an allergy to it but I think that was because we switched him onto soya milk full time straight away. But I am sure you know to be cautious! Good luck with introducing milk. What about goats milk? I know it's similar to cows' but I tihkn hte proteins are slightly different so if he's ok with soya but not cows' he might be ok with goats'...

buttonnose - the organix biscuits only list gluten as an allergen, so we have been trying those with no ill effects so far. They do a banana and an original. They are a bit like the heinz rusky type ones but with no milk protein. Messy for self feeding but yummy!

We finally got our dietician appt YAY!! Next Tuesday. Had to take Stanley to GP today as he's got a bacterial infection on his neck. It's really nasty looking. He's been prescribed flucloxacillin in liquid form. It is so awful, we just had to give him 5ml in a syringe, he managed to projectile vomit the medicine and his dinner all over me and hubby, yuk. Then we still had to give him the rest of the dose, he was screaming and crying, it is disgusting stuff. Any ideas for administering it as i don't think I can take that 4 times a day! Can I mix it with anything? Tried it in 2oz of Oatly but it still tasted vile and he just made a face and refused!

 

[Khloeee]

Is flucloxacillan the pink stuff that tastes really bitter? Arlo had a course of that when his ezcema got infected, was a struggle to get him to swallow any of it!

I still really want to see a dietician. Dermatology were meant to refer us but haven't heard anything, might have to chase it again.

Arlo is on 3 meals a day but still having 5 BFs plus one or two night feeds. I would like to cut out a daytime feed but with the absence of dairy in his diet, I don't think he is getting enough good fats...hence him needing more BFs.

Hello ayh78!! I'm new to the milk allergy stuff but my LO is on Nutramigen 2 (I stopped breastfeeding about 8 weeks ago). Have you thought about dreamfeeding him, either with breast or formula, just before you go to bed? It might help him go through a bit longer at night and then it's not interfering with his solids.

Good news about Connor's weight gain Jemma, at least that's one less thing to get worried about.

happyface It sounds like LO might be ok with soya - my LO developed an allergy to it but I think that was because we switched him onto soya milk full time straight away. But I am sure you know to be cautious! Good luck with introducing milk. What about goats milk? I know it's similar to cows' but I tihkn hte proteins are slightly different so if he's ok with soya but not cows' he might be ok with goats'...

buttonnose - the organix biscuits only list gluten as an allergen, so we have been trying those with no ill effects so far. They do a banana and an original. They are a bit like the heinz rusky type ones but with no milk protein. Messy for self feeding but yummy!

We finally got our dietician appt YAY!! Next Tuesday. Had to take Stanley to GP today as he's got a bacterial infection on his neck. It's really nasty looking. He's been prescribed flucloxacillin in liquid form. It is so awful, we just had to give him 5ml in a syringe, he managed to projectile vomit the medicine and his dinner all over me and hubby, yuk. Then we still had to give him the rest of the dose, he was screaming and crying, it is disgusting stuff. Any ideas for administering it as i don't think I can take that 4 times a day! Can I mix it with anything? Tried it in 2oz of Oatly but it still tasted vile and he just made a face and refused!

 

[hinkybinky]

Is flucloxacillan the pink stuff that tastes really bitter? Arlo had a course of that when his ezcema got infected, was a struggle to get him to swallow any of it!

I still really want to see a dietician. Dermatology were meant to refer us but haven't heard anything, might have to chase it again.

Arlo is on 3 meals a day but still having 5 BFs plus one or two night feeds. I would like to cut out a daytime feed but with the absence of dairy in his diet, I don't think he is getting enough good fats...hence him needing more BFs.

Well it's not pink, it's whitish. It tastes absolutely awful, I am only tasting the bit I lick off my hand or whatever, so I can't imagine how horrible 5ml of the stuff is. He just does this grimace and lets it dribble out the sides of his mouth. I have no idea how I can force his mouth shut! Think I am going to phone the doc and see what she suggests. Maybe there's something else that will do a similar job and not be so rank. It's no good if he's not getting the right dose as it won't kill all the bacteria, I assume.

I will let you know if my dietician appt is any good. I spoke to a woman yesterday who was on our signing course, whose son also has CMP allergy. She said the dietician at our local hospital was not much good, didn't talk about eating more fats or anything, so I am glad we've been referred to the hospital further away! Am hoping they'll give me some idea of dairy substitutes and how/when to introduce the remaining allergens that we haven't tried yet: fish, shellfish, eggs and nuts.

Right, off to phone the GP while Stanley's having his nap x

 

[Khloeee]

Is flucloxacillan the pink stuff that tastes really bitter? Arlo had a course of that when his ezcema got infected, was a struggle to get him to swallow any of it!

I still really want to see a dietician. Dermatology were meant to refer us but haven't heard anything, might have to chase it again.

Arlo is on 3 meals a day but still having 5 BFs plus one or two night feeds. I would like to cut out a daytime feed but with the absence of dairy in his diet, I don't think he is getting enough good fats...hence him needing more BFs.

I will let you know if my dietician appt is any good. I spoke to a woman yesterday who was on our signing course, whose son also has CMP allergy. She said the dietician at our local hospital was not much good, didn't talk about eating more fats or anything, so I am glad we've been referred to the hospital further away! Am hoping they'll give me some idea of dairy substitutes and how/when to introduce the remaining allergens that we haven't tried yet: fish, shellfish, eggs and nuts.

Right, off to phone the GP while Stanley's having his nap x

It woud be great to hear what they tell you. I am also not sure how to introduce other allergens - all I keep reading is that it should be under guidance from a medical professional and not to just attempt it yourself...which is what I was planning to do.

I'm meant to be back at work in October. I know this is still a few months away, but if I need to get LO used to a hypoallergenic formula in time I need to start thinking about it now in case we have any problems, especially if I might have a fight on my hands to get Neocate prescribed. So I'm going to call the hospital today and push them to sort out Arlo's dietician referal. Something tells me it will be easier to go through them than to just ask the GP for some Neocate.

Am I allowed to post a mumsnet link here? Just read an interesting q&a with a leading paediatric allergy specialist - all about milk allergies.

 

[happyface82]

Hinkibinky I really don't see any other way than mixing it with food but 5ml is a lot!!! I try to 'lock' Katerina's head on a tilted position when I give her medicine and put my two fingers either side of her cheeks not sure if this makes sense so that the medicine has to stay inside her mouth. It sounds awful and she does cry if its a medicine she doesn't like but you need to do what you need to do!

Its worth asking for an alternative medicine though.

Khloeee I don't see why it wouldn't be allowed to post such a link here. Its only for information purposes! Sounds interesting!

Ayh78 I think the question here is whether you are willing to give up dairy. If you are then there is no need to switch to special formula. Unless there is other things that don't agree with him and you don't know about them yet in which case it can be tricky. Not sure what to suggest!

 

[Khloeee]

Here is the link, lots of info about dairy allergies:
https://www.mumsnet.com/qanda/dr-adam-fox

 

[hinkybinky]

Hinkibinky I really don't see any other way than mixing it with food but 5ml is a lot!!! I try to 'lock' Katerina's head on a tilted position when I give her medicine and put my two fingers either side of her cheeks not sure if this makes sense so that the medicine has to stay inside her mouth. It sounds awful and she does cry if its a medicine she doesn't like but you need to do what you need to do!

Its worth asking for an alternative medicine though.

Thank you! I tried mixing it with everything but the bitter taste still came through. He shuddered, made a face and refused the food. I tried a spoon, a syringe, tilting his head, holding his mouth shut, laying him on his side, on his back, every which way... but the medicine just kept on dribbling out and he was getting more and more distressed

Phoned GP and one of the doctors phoned me back and did me a prescription for erythromycin aka the banana milkshake medicine! Have just given him 5ml of that with no problem so we are all happy bunnies now!

 

[happyface82]

Klhoeee thank you for the link!

Hinkybinky I am glad you got the medication sorted! Its bad enough when we have to give them medication its not nice when they really don't want to have it.

 

[Khloeee]

Well, that didn't go according to plan. I called dermatology to get an update on Arlo's dietician referal. They told me that his blood test had come back OK, and as a result of that he doesn't get a dietician referal and they now want me to go through my GP with any concerns.

What are the chances of my GP giving me a dietician referal or hypoallergenic formula when his bloods tested negative for allergies?....not likely.

I do have a follow up appointment with dermatology, but it's in August which is ages away and very near to my going back to work date....getting quite concerned about this seeing as Arlo is fully breastfed at the moment!

I guess my only option is to go ahead with testing him myself. Give him dairy and soya to eat, document the reaction (assuming there will be one only because of reactions he's had from my breastmilk) and go back to the GP then.

 

[happyface82]

To be honest we are on Neocate even though the RAST test came back negative. But we did go private to see a GI who confirmed that Katerina has an intestinal allergy which wouldn't show on blood tests. I think you should print out some things from the net -there is some info specifically on this on the link you shared- to show your GP that allergies are not always detected from testing and therefore is not 100%. Are you bf at the moment? You could try cutting out all dairy and then tell them the difference you've seen? Or the opposite like you mention.. I'm sure if you are persistent the GP will prescribe a special formula for you.

 

[Arcanegirl]

Armed with knowledge and things like a diary is probably the only way.

Alexs blood tests were negative aswell and skin pricks on minor reactions, but it just seems now that he has so many minor allergies that together make one big one!

 

[Khloeee]

To be honest we are on Neocate even though the RAST test came back negative. But we did go private to see a GI who confirmed that Katerina has an intestinal allergy which wouldn't show on blood tests. I think you should print out some things from the net -there is some info specifically on this on the link you shared- to show your GP that allergies are not always detected from testing and therefore is not 100%. Are you bf at the moment? You could try cutting out all dairy and then tell them the difference you've seen? Or the opposite like you mention.. I'm sure if you are persistent the GP will prescribe a special formula for you.

I've already cut out all dairy and soya and added it back in only for his skin to get worse. The GP and the hospital are aware of this. But I think you are right, persistence is the key.

But I think I will need to try Arlo on some dairy first, as that's going to be the first thing the GP asks when I go and see them. If I haven't tested him directly, how can I be so sure he's definitely allergic.

 

[happyface82]

To be honest if you cut it out and he was better than that is sure enough for me. Not sure you want him to go through this and risk his skin getting worse again? And if his skin got worse when you added it back to your diet then they shouldn't need any more proof...

I do hope the GP listens to you and helps you out!

 

[buttonnose82]

happyface .... how is your little lady today after the soya? still no negative effects?

x

 

[happyface82]

Still no effects She's had some soya yogurt 3 days in the row now. I'm guessing it would have shown by now. I think next week I will try with dairy. If it works, perfect I can change her milk, if it doesn't I will consider goat's milk or soya!

 

[buttonnose82]

Well I tried little man with some soya custard tonight (the dietician asked me to try him with some) well he had maybe 10 baby spoons of it and his skin has already broken out had too cover him in steroid for bed, won't be doing the again

 

[happyface82]

Buttonnose I'm sorry he reacted I hope he is better when he wakes up!

 

[Jemma_x]

Buttonnose

 

[Jemma_x]

Connors being a pain with his food, dont know what to do

 

[Arcanegirl]

Is he being picky?