Neocate advice

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Permalink Reply by Emma on January 29, 2012 at 15:19

Laura

Allergic gut just means exactly as it sounds, the gut is allergic to different foods, usually those high in protein, cows milk being the biggest followed by soya, wheat and eggs. So cmpi is part of the same thing really. Drs follow a path so to speak when it comes to reflux and allergies. And they only starts tests when the child doesn't respond well the the milks and medicine tried first. We've had tests and believe me you will want your lo to try the mess first. Alot of the time the tests show nothing as they do in my case.
Bear with the neocate. Believe it or not it's used to help settle the gut and in most cases is very effective. But like everything it takes time. Image your lo's tummy or bowel or insides as being a big scab. Each time she has milk proteins, or any of the possible allergens it picks the scab off. Neocate will heal the scab but it takes time.
You are with the best possible dr in the country and possibly the best in the World, please have faith in him. I wish we were under him, but we are with his colleague dr Lindley. Dr shah will want to trial neocate first and if she doesn't respond to how he would expect he will start other medicines. And if those don't work he will do tests. The reflux process is a very long process. Mine are 3 and 20 months and with the help of gosh were only just getting my 3 year old to finally sleep thru the night and eat better. Not so the case for my son but were getting there.
Please vent away if you need to. We've all been where you are and you have the advantage most of us never had, you're with shah from a very early stage so chances are your lo can improve much much quicker

Good luck

Hth Emma x

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Permalink Reply by Laura Perks on January 29, 2012 at 15:35

Thank you so much, I thrive on information - information overload probably, so that's all really useful, and sounds less scary somehow when it's put like that. we have no history of allergies at all, so this is all just so alien to me.

I video'd her screaming early on, and it's safe to say her screams have definitely changed. So perhaps I'll video her new screams, good idea - then I'll have both to compare. 

Poo-wise, I took pictures previously, but since she's been on Neocate her poos have obviously changed, so I gave up on that idea as I figured any abnormal poo would just be put down to the Neocate. I'll take a note too though. 

So, can I ask, what happens at weaning age - presumably a dietician helps (??), but how do you know when a food bothers your LO. There's no atopic signs with my youngest, just the screams / irritability, and I can totally see myself - if she screams at egg for an example - freaking out and never giving her it again. How soon after might it bother them ? Is that the stage where skin prick tests come in, or is this still all intolerances and so they wouldnt be a valid test ?

I'm just never sure whether I need to be upping her meds, or if she's just having a bad day, or whatever .... this is where that responsibility comes in. Do I suggest she needs more reflux meds, or do I put it down to a grizzly day, for example. I just don't feel able to judge this stuff at all, I have no perspective when it comes to my daughters, I still scream if my eldest so much as falls down a step. I'm very rational in all other respects though, just not when it comes to them. 

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Permalink Reply by Emma on January 29, 2012 at 15:43

Yes a dietician would help. See you're very luck that this has been caught early on. Like bev before weaning age. Well that's if that's what your lo has. My daughter was two before she had any meds or diet changes and my son has had every food going so were working backwards with diet elimination rather than the better way which is to start a fresh like bev did.

In terms of reactions it's quite complicated so too much to write really but if I can find some links I'll post them but essentially with mine we get rashes, eczema, insomnia, constipation the diarrhoea, vomiting, bad behaviour/hyper behaviour, poor sleeping and mucous and blood in the poos.

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Permalink Reply by Beverley on January 29, 2012 at 15:52

Ooh, so complicated Laura. Be assured, you'll get the hang of it when the time comes. They can react in different ways over different timescales and to make matter worse, reactions can change and vary. But, it does become obvious. You will have the help of your gastro and a dietician and there are some good weaning guides on here. Read the one at the top - Intolerances again. And search for a recent one that Sarah posted about Weaning the allergic baby. There are also medicines that some believe can help to increase tolerance to food. The best possible thing you can do if your LO is allergic is to have them settled on Neocate. We were lucky enough to be in that position and, although it's still hard, it's been easy to spot reactions. The hardest thing is if they're unwell and unsettled when weaning and then you can't know what's causing the problems.

If you can't judge, re the meds, let Shah be the judge. Just see your job as being to monitor and record symptoms.

x

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Permalink Reply by Laura Perks on January 29, 2012 at 17:12

We are very lucky to have seen Shah, and got Neocate and a suggestion of intolerances early on. I can see what a long road it's been for others, a good friend of mine included - she's who made me see a GI Paed and consider the neocate initially, as it took her months to reach that stage, and she had to attempt weaning on her own too.

I just want to get a diagnosis, then get as clued up as I can on what's ahead for us. The uncertainty is the killer - if it's working, if we're on the right path, if she's better, then why is she worse again ....etc etc.

In the back of my mind I also have the worry that my GP has said, once Florence is settled on milk & meds she'd like to challenge her with a normal formula. Now I know that challenges do happen, but is this normal ? If F does get settled, and if the GP does propose a challenge how soon should we know if she's passed / failed it - how quickly would symptoms re-start ? I wonder if Shah would even allow this, I'll ask on Tues I guess. 

Also, how long might this allergic gut last ?? Is it the same as other allergies - by age 3 or by age 7 kind of thing ??

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Permalink Reply by polly finn on January 30, 2012 at 20:03

Hi Laura. Hope you are feeling more positive. I promise you I felt exactly the same as you 2 years ago. I'm also happy like bev for you to ring me . I' actually work in A&E and I'm happy to give you advice over the phone if you are concerned. Get your questions listed for shah. This site is amazing for help and support but it uses to make me feel worse at times because you start to consider that there are problems that may not even be present. 

Bev you have a fab way of explaining things. Perhaps you should write a mfpi book at some time???

Xxx

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Permalink Reply by Beverley on January 30, 2012 at 23:49

Thanks Polly!

I don't think I'd get past page 1 of writing a book about mfpi though. Addles my brain! Maybe I only phrase it well because I have to make it simple for my own little brain to process.

x

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Permalink Reply by Beverley on January 30, 2012 at 23:57

As I said in my message, I would fight any suggestion of a challenge. If Neocate works, you have enough proof without challenges and you'll want to stay on it. They only want to challenge in case they can stop paying for it.

The ages people grow out of allergies seems to be very vague and varied. I'd wait and see if you a have a concrete diagnosis and of what kind of allergy before you worry too much about when she'll grow out of it. If it's just cmpi, take heart from examples like Jen's Matthew who is off omeperazole and tolerating a bit of dairy at almost 2, I'd guess. She can tell you more. For others 3-7 sounds reasonable but i think it really is individual and I think if the child is very allergic, the problems can mutate. On the study day at GOSH, Dr Shah talked about 'the allergic march' which basically means that symptoms change, so, a baby with gut allergies might turn into an older child with asthma for instance. Honestly, Douglas is at the hard end of things in some ways and I still don't really understand all the ins and outs of it and I still don't have a clear idea when he'll grow out of it because no-one really knows. I'm afraid it's quite an uncertain area. But you'll get through it and it might not be as bad as you fear. As Polly says, forums like this can scare you when your road might be much easier than some of ours. We're here to help, not to try to make you more worried. Try not to panic too much.

X

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Permalink Reply by Laura Perks on January 31, 2012 at 11:19

Hi,

I'm doing ok thanks, head still a fog of confusion .....

Have a list of questions for Dr Shah today, but my main worry just now is - though she seems generally less screamy on the neocate, she's still in discomfort and kind of strains and squirms. We thought it was just wind type pains but she goes pale, and clammy and kind of waxy looking when it happens, and it can last a while. This is when she starts to refuse feeds too. 

Also really doesn't seem to find it easy to swallow, the milk dribbles out of her mouth and all under her chin an awful lot. 

Any ideas on those two oddities ??

You're right, I do find some of the anecdotes on here a little scary at times. I wish I could share my husband's "she'll grow out of it at 4 mths" attitude. But things just dont add up & seem that simple to me. The fact that she'd howl the place down on my milk for one. 

xx

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Permalink Reply by Mary Edel on January 31, 2012 at 16:27

How did you get on today Laura??? Ryan is taking about 2 four ounce bottle now and the rest are 3oz. so we are getting there. He still squirms about and is refluxy afterwards but no as screamy as he was. So fingers crossed he will continue to increase his feeds.  Hope you had a good appt today. Edel

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Permalink Reply by Laura Perks on January 31, 2012 at 23:14

We're ok Edel, thanks for thinking of us. Shes taking a decent amount now, 3oz or 4oz. Though does still refuse the odd one. She's refluxing like crazy though, which is tough to see, and still in quite some discomfort.

Had our appt today, Dr Shah wants her to stay on neocate longer ...... then he'll consider antihistamines if she's not fully symptom-free still.

I don't get how antihistamines will work if it's non-Ige though, as they work on immune based reactions I thought ?? Any ideas anyone ? Maybe at that point he'd consider that she was having Ige reactions as opposed to non-Ige ? Have emailed him to ask, as I can't get my head around that one.

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Permalink Reply by Beverley on January 31, 2012 at 23:24

So confusing, Laura.

The delayed gut reaction is non-IgE but, it can still involve an immune reaction and the release of histamine. Weird I know but that's the gist of it. We found anti-histamines really helped Douglas to settle.

I'd tell you more about but my poor little boy is suffering at the mo so got to go.

x

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