I'm devastated - how much can I take

[sagarika]

I know that many mummies have been through similar situation but I am mentally and physically exhausted. My ds who is only 13 months has milk, nuts and egg allergy. At his follow up appt with the allergy specialist it turned out that now he is allergic to wheat, lentils (possibly peas as well) and oats( suspected). I felt as if the ground beneath me gave way. I know we(me, my ds n my dh) will have to deal with it. But I don't know how. He has been breast fed all along but now they want me to stop. Hes prescribed nutramigen aa as he reacted badly to pepti. How do I make him swallow that horrible tasting milk. Does anyone have any suggestion as to what I should do re: his milk. I was advised to mix it with my milk initially but I can express only very little. What do I do. Shall I mix it with coconut milk. He's now not allowed oatly, soya and was also advised against rice milk. He used to have very bad eczema but somewhat better(although very itchy) now. What do I feed him with so many allergies and how is he going to grow!!!

Why do they want you to stop breastfeeding?

Do you want to stop?

oh sagarika

You're right, you will cope...

I know how terrifying this can be. It's beyond awful, having to face up to what living with allergies is going to be like. My DS was also about 13 months when I started to realise just how many things he was allergic to. It's hard trying to keep him healthy and safe (physically and emotionally).

Now that DS is 3 years old, I am starting to cope much better than I have done before. I won't lie to you and say that it is easy, but it is manageable!

Why do they want you to stop breastfeeding? Have you been given any information about excluding your DS's allergens from your own diet?

There are lots of mums on this allergy forum who can give you good advice about getting your DS to accept hypo-allergenic formula milk. Also, many of us were able to carry on breastfeeding!!!

I am 'still' breastfeeding my 3 year old DS (although he doesn't feed anything like as often as he used to). I was advised by a number of health professionals to give up breastfeeding as I would never be able to exclude all of DS's allergens from my diet - but I took the view that if I had to exclude them from his diet then I could easily exclude them from mine too. The first time we DS's dietitian, she said that I should try Neocate, and when I declined she offered me free samples in case I should change my mind. The next time we saw her, she had been on new training, and said that she wasn't worried about DS's nutrition as he was still breastfeeding!

I want to continue breast feeding. But the professionals seem to think it is near impossible to exclude wheat, oats, pulses along with dairy, eggs and nuts from my diet. Judging by the number of ever increasing allergens they think that he might be allergic to many other things which he has not been tested yet. They feel I won't be able to do such extreme exclusions and That it might affect my health. Plus he continues to have eczema flare ups which they believe could be related to food allergens. I don't care about my health, I can exclude these allergens from my diet but what about the foods that he has not been tested which might be causing the flare ups? I really don't want to be the cause of his problems..... Really confused......

Firstly I am so sorry to hear of your DS's health issues.

I know this is going to be extremely unpopular with the BF devotees but if I were you I would ask myself what the benefits of continuing BF are in your case. If in some unusual cases BF possibly causes more problems than it solves, ie. if your BF could contribute to your DSs allergies, and to exclude foods from your diet might affect your health in turn, so you get ill when you need to be strong and fit to look after DS, plus there are foods you continue to eat unwittingly that your DS is allergic to... why would you want to continue BF? This is what I would ask myself.

Yes sleepyspaniel that's what I Hv been doing. Thinking and thinking and wondering what's the best option for my ds. What is the next best alternative to breast milk ?? With the very limited options that he has...I will try to establish him on nutramigen before I stop breast feeding completely.

Does anyone know whether kara coconut milk is safe for babies. I'm planning to mix it with his nutramigen.

I'm so sorry your DS has been diagnosed with so many allergies. It's really tough, but it's doable. My DS2 had exactly the same allergies, except for oats, but more pulses. I excluded them all from my diet. I took a similar view to greenbananas. If he has to exclude them, then it will be good practice to start with me.

Entirely up to you though, if you want to continue to bf or not. Very personal decision. I wouldn't worry about making yourself ill though. With careful management that won't happen. Your DS will have to live on that diet and stay healthy.

A couple of years on, my DS outgrew his wheat allergy, which made an incredible difference to his range of food choices. So,there is hope .

Come here to vent when the going is tough, we all know exactly how it is.

Hi my ds is the same age as your as has similar allergies I was breastfeeding him but weaned him onto nutramigen at 11.5 mos because I didn't want to bf indefinately and was uncomfortable about the impacts on my long term health of excluding such huge food groups (unlike ds who will get much of his nutritional extras through the formula while I was reliant on supplements). I am very probreastfeeding but I echo sleepyspaniel you have to think of your long term health as well things such as osteoporosis (sp?)

Like you I couldn't express much so I tried mixing with oatly and kara but he wouldn't go for it. In the end I put my principals aside, lived with the mummu guilt and mixed the hideous stuff with milkshake flavouring, gradually reducing the flavouring and within 2 weeks he was taking nutramigen with no additional flavouring. It is possible and please don't make life difficult for yourself by standing on your principals I did it for longer than I should have done and made life very hard for myself.

I thank you all for being so supportive. I will try mixing with kara(although its coconut, I dont think it falls under nut category). I could continue bf with exclusions but its like walking in a minefield. Always worrying what to eat, what not, thinking that some food I eat might cause anaphylaxis. I applaud all the mummies who have been able to bf against all odds but after much thought I have decided to wean him off my breast milk gradually, although cant help feeling that i have abandoned him! Thanks everyone. Yes, there is hope that things might get better. Thats what keeps me going....

sagarika, I'm so sorry to hear your news. It's a nightmare, there's no denying it. But as all the mums above have said, you can get through it, I'm sure. You mentioned once that you thought your DS was allergic to tomatoes too: was that confirmed, or can you introduce them into his diet? My DS has the same allergies as your DS, except for swapping oats with sesame. It seems especially unfair that on top of eggs and milk they also have wheat allergies...the poor mites.
I don't have anything useful to say about Nutramigen, but my DS has been having Kara every day with his cereal (he doesn't like Oatly or soya milk) for over 7 months now (he's 17 months) and he's fine. I think coconut allergies are very rare (and I think I read somewhere that coconuts are from the drupe family, like melon, etc.).
I wonder why they advised you to stay off soya -- did they test your DS for soya too? Is it because of the pea allergy, do you think?

Yeah. It's not allergy to tomatoes as such. Apparently raw tomatoes have very high content of histamine. So skin prick test will be always positive for tomatoes. So they didn't test it. Meaning he can't have it. He was tested for soya when he was 5 months. It was negative then but they think that's sn old test and they say soya can cause him allergy now since he's so prone. They however didn't test it this time. There are many varieties of coconut milk but do you suggest kara is better. Any ideas garliclover?

Mum2two where can I buy those milkshake flavourings. I never bought them. Can I get it from any supermarket?

Oh! It's so hard... It's not fair on these poor little souls. Why does it have to be this way.......

What cereal do u give ur ds garliclover?

Yes, Kara is better, I think, because it's fortified with calcium. It also has a relatively high fat content (though that's not saying much -- most alternative milk drinks have very little fat). Unfortunately it has no vitamins or protein (to make up for that, DS eats meat every day, and a vitamin supplement).

The only cereals I know which don't contain oats or wheat are Rice Krispies original (which are great, as fortified with iron -- who cares about the sugar when there's so little stuff to choose from!) and Nature's Path Mesa Sunrise (you can get it from the freefrom section in Sainsbury's). I also get from goodness direct bags of millet, amaranth and quinoa puffs, which are really good for protein (I mix them all together and serve them with Kara).

DS also reacts to raw tomatoes (he gets a rash every time), but he's fine when they're cooked. Did they advise you to stay away from them completely?

He reacts to cooked tomatoes as well. I noticed it when I fed him from one of those jars that contained Mediterranean vegetables with tomatoes in it. I have just started to give him rice crispies for breakfast.

Do not despair, sagarika! In my experience you are at absolutely the worst stage. I remember feeling exactly the same when at 12 months we added nuts to the list for dd. That meant I she and I (still bf) were to avoid dairy, eggs, wheat, sesame, shellfish and nuts.....

I was endlessly starving, anxious and completely fed up.

I stopped bf at around 15m, not just for this reason, back to work and expressing not made easy etc. She went on to Neocate and after a tricky period of mixing it with bf, she was fine. Our nice and practical dietician suggested adding pureed pear or even golden syrup and then reducing amounts until it was 100% neocate. She agreed golden syrup was not ideal buy hey, none of it is ideal really.

Life is very different now. DD (7) has grown out of wheat which made a VAST difference and, as of last week, we can do egg! Hoorah. Added mustard to the list, but as a swap for wheat and egg, that will do me!

She can go out for a cheeseless pizza, takes her own food to parties, eats better than almost all her peer group and we are all coping ok.

Things get vastly better, honest. You are in the shock phase which I remember well. Hang on in there!

Hang in there it does get better.

My dd2 had awful awful excema & there were lots of days when I felt like I should never have had her as her quality of life was so low.

Finally aged 8 mo they diagnosed allergy to dairy soya egg which later had sesame peanut animals & certain trees added alongside other triggers we don't know.

She luckily took to nutramigen Aa very easily but when she was older we sonetimes put strawberry nesquik with it to get her to drink some.

As she has got older the dairy & soya allergy has gone pretty much and she can eat tomatoes which used to make her flare up.

We also carry piriton & epipens with us all the time and have used them.

Long acting cetrizine anti histamine seems to help too.

Hang in there she's 3.2 now and it's a lot easier

Hi sagarika!
I'm so sorry to hear about your ds's allergies. It is incredibly tough. I can only echo what the other wise posters have said about how impossible it feels to start with. I remember feeling as though I was going to be sick every time I gave my dds something new to eat, watching for hives or any other signs of allergy. I also felt very lonely with it as many of my friends seemed to find that their babies were happier when weaning and they enjoyed cooking for them. I felt like the only person who hated this stage.

However, it really will become just part of your life and your dss. It stops dominating everything and you really will be able to cope.

Make use of the support and practical advice on here. There are lots of experienced and supportive folk on here. And lots of support if you just feel like wailing!! I know because I've done it.

My own experience of breast feeding was that with dd1 (allergic to lentils, strawberry, pineapple and now aged 4.10 just raw/lightly cooked egg) was that her chronic severe eczema cleared up considerably when I stopped breastfeeding at 11 months. I was very upset at the time as I had felt bfing was the best thing to do.

With dd2 (allergic to cows milk and egg) I breastfed to 16 months but did cut dairy and egg out of my diet at 8 months once we knew her allergies. She did not have eczema. At the end I was just doing one feed a day. She took to neocate very well and still loves it (aged 2.5). I moved her onto that very slowly, one feed per day to start and gradually increased it. My view was that it would be harder to move her onto it when she was older and I knew thast breast feeding beyond 2 was not for me and my family (respect to anyone else who does- it was just a personal choice).

Good luck

Oh you poor thing, hang in there. seriously, it gets better once you've figured out what baby can still have.

I haven't read all of the above, but I think there's something to stopping nursing; I remember how horribly exhausting it was to keep my diet clean. If you put babe on nutramigen, you don't have to deal wiht all that for a while, and it's not like you don't have enough to do jst taking care of a healthy baby.

My dd hated nutramigen, but I kept offering it between nursings and putting drops on my nipple before nursing etc. Eventually she took it. I never mixed it with anything, be careful with that, especially with allergic babes.

Good lucK!

hi, I used Crusha flavouring to mix with the nutramigen as it didn't have any ingredients in the my ds reacts to and thankfully he was fine. I reduced it really quickly but if he seemed not to keen after a reduction I put it back up again for another day.

I got the idea from foodallergymums.com they have a few ideas on there.

Thank u so much everybody for your support and kind words. It's is very hard but I am coping. However, I am still struggling to get my ds to take nutramigen ( I decided to stop bf, haven't been able to do so as yet). I have been mixing nutramigen with kara. He takes a couple of sips but then starts crying pulling on my clothes looking for my breast. That's when I give in. Maybe I shouldn't but cant help it. His eczema is so much better now with all the restrictions....touch wood!!!!

Lots of good advice here.

I just wanted to add my support, I have been in that "Oh my god, how will we cope place" and it's awful. These boards were a godsend at this point.

DS is almost 2 now, and things have got better. He has grown out of a few allergies, and those that remain, I feel in so much more control of. You will surprised how much your confidence will grow.

My DS has similar allergies your DS, and I have found hunting around on vegan websites (minus the nuts) really useful.

Thanks wideawake for ur support but guess what? It's been more than a week now and I am still struggling to get him on nutramigen. Shall I just stop breast feeding whether or not he's taking nutramigen in the hope that after a day or two he will take it eventually?? Will that b the right thing to do? But then he wont get any milk for that duration of time. What do I do? I used to think that I could withstand any hardship that come my way but this is getting unbearable. Ds is not putting on weight!!!! He's been the same weightfile 3-4 months now. He's growing taller but getting skinny....My family lives abroad and I miss them so much(especially my mum)...

sagarika, I was in your shoes except my ds was putting on weight slowly.

I wouldn't stop breastfeeding in hope that he will take the nutramigen I personally couldn't cope with going cold turkey on the bf. Please try the milkshake flavouring it really does work and I know it is counterintuitive to give this sort of thing to a baby but it is for such a short period of time. Please don't make life hard for yourself it's hard enough with babies as it is. Using milkshake flavouring I had my DS fully bottle fed on nutramigen only, within 2 weeks, he was 11 months at the time.