Neocate advice

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Permalink Reply by Laura Perks on January 31, 2012 at 11:14pm

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 Ward on January 31, 2012 at 11:24pm

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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Permalink Reply by Helen Milne on February 1, 2012 at 9:46pm

I can't really add anything else to this conversation except to say that it took 6 weeks for Neocate to work on Charlie.  He was iv-fed for 3.5months and then expressed breast milk for 2.5months before moving to Neocate.   We didn't struggle with him taking it because he was tube-fed so I can't give you any advice there. He continued to projectile vomit for 6 weeks and then suddenly he stopped.  Keep going with it and don't worry about weaning yet.  Neocate is a complete food and solids are not required from a nutrition point of view therefore I would try and get the reflux under control before introducing anything else just in case she associates solids with pain.

 

When she goes grey is this during feeds or before them?  And how long does it last?  It's just that the symptoms are very similar to Charlie when he has low blood sugars.  This probably isn't her problem but it might be worth getting checked out.  I know a few babies who go low after protein-rich meals.   It is definitely these symptoms that worry me the most.  Can you get a video of her at these times?

 

Anyway I hope you start to get the answers you desperately need and that she starts to progress.

 

H x 

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Permalink Reply by Sarah on February 1, 2012 at 10:06pm

I'd agree that the going grey is worrying. Did Shah have any explanation?

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Permalink Reply by Laura Perks on February 9, 2012 at 11:33am

Sorry for the late reply, it's been a busy time with a poorly girl, family drama and me continuing to try and fend off a complete breakdown !

We're still on the neocate, had a really good few days, but then (now) she's gone back suddenly to bottle refusal, going pale and screamy. Also has a load of allergic type symptoms (nasal congestion worse than ever - affecting feeding and sleeping, red itchy eyes, coughing, sneezing). 

I simply don't get how she can be having this whilst on neocate, I can't get my head around it at all.

We saw Dr Shah, he was happy she'd had some good days on neocate, urged us to stick with it for 2 more weeks at least (we're at almost 3 weeks now). He said he'd add an antihistamine if her symptoms didn't fully resolve by then. 

He said her pale, grey ,clammy episodes sound like allergy-related symptoms. 

I am just struggling to understand all this. Why would she need an antihistamine when she's purely on neocate, what is that suggesting ??

How are you doing Mary ?

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Permalink Reply by Kiwi suffering on February 9, 2012 at 12:17pm

Environmental allergies Laura... 

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Permalink Reply by Laura Perks on February 9, 2012 at 12:39pm

Do environmental allergies cause gut reactions too ?

I'm just struggling to comprehend how can she be so allergic, to seemingly anything and everything (started as cows milk, even when I cut it out of my diet, along with soya, wheat, egg). Now on neocate it's 'environmental'. There are no allergies in our families, her elder sister has a clean bill of health ..... no tests have been done on her. 

For the past 3 days again we've had feeding aversion, screaming, paleness, congestion and not sleeping now too.

Would an environmetal allergy really cause all that ? It can't be anything else, anything she's eating for example, as she's purely on neocate. 

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Permalink Reply by Mary Edel on February 9, 2012 at 1:33pm

Hi Laura,

        I know how you are feeling. We are having a hard time as well and very similar to you. Ryan is taking 4oz neocate bottles  but still looks very allergic. I'm just giving it more time to work on him. He has red eyes. excema, coughs and sneezes and is congested as well

.I put some E45 on his face the other day and he had a bad reaction to it so he must be very allergic. I am really struggling as my 2 year old is being neglected. to top it all off my dad has been diagnosed with motor neurone disease and I am very close to both my parents.

       We will get through this. I feel the neocate has definately helped his gut. So it is a game of wait and see. I too wonder if there is something else he is allergic to as he is only having neocate. Is it my washing liquid?dust mites? me???!!! I just can't figure it out.

      Take care Edel 

PS. are you on facebook at all . I am so feel free to friend request me and indeed same applies to anyone else. Edel Astin

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Permalink Reply by Laura Perks on February 9, 2012 at 3:11pm

Thanks Edel. Did your son always have the allergic symptoms ? We only noticed ours (congestion & eyes especially) once we began on neocate, which makes zero sense whatsoever I know. 

She does still seem to have a great deal of pain at times and I can't pinpoint it. We don't have any skin reaction at all, just this pain, congestion, feed refusal. 

My 5 yr old is suffering badly too, her teacher told me she's been crying at school and when they talk to her she says she's worried about her baby sister. It's utterly heartbreaking. My Mum has just topped it all by coming to stay for a few days "for support", seeing Florence on her best ever days, then texting family to say she's fine and I'm relentlessly negative / neurotic. So now I don't feel like any of my family are even acknowledging she has an issue. 

Luckily (or not) my mother in law has been staying too and has seen her at her very worst, so his side of the family are being very good. Friends have all seen her at her worst too and are so concerned for us, but there's just nothing people can do - no-one has a magic wand.

What are your plans after neocate, do you know ? What's the next steps ?

Also, are you getting stringy mucous nappies ?? We have these and they dont make sense to me either. I just cant work out where all this is headed, and how to stop it. 

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Permalink Reply by Mary Edel on February 9, 2012 at 3:53pm

Hi Laura ,

       Ryan has been sneezing, coughing red eyes and congested from birth. His poos are green but not mucous at the minute. he gets constipated since changing onto neocate but he goes eventually. 

Your poor daughter. that is difficult. I suppose you just have to try and take her out for some tie with just you or you and your husband . maybe do this while your um is there.

I hope to see paed consultant next week and I feel he will keep us on neocate for now as it has stopped the screaming.

  Keep in touch Edel

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Permalink Reply by Jenny Rawling on February 9, 2012 at 5:08pm

Hi Laura and Edel. Hope you and LOs are both having good days today. Just to encourage you to stick with the Neocate and try not to be too impatient for improvement. Refluxers just have good and bad days, you can drive yourself mad trying to figure out what is different, you are just looking for a general trend towards improvement and it can take 6-8 weeks to see the effects of the changes you've made. I know how hard it is to be patient when your LO is in pain, so easy for me to say "be patient" with hindsight, but it is really important.

Laura - your older one will be ok, this is tough on the whole family but she'll come through it fine. Maybe giving her some special 1-2-1 time is something that you can ask family to do? My son who is five is now very matter of fact about "Matthew's poorly tummy" and an expert on which foods are dairy free!

Big hugs for you both! Jen xx

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