Help Confused worried mum and dad and poorly daughter

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Permalink Reply by Jenny Rawling on February 4, 2012 at 20:14

Natasha that sounds horribly worrying for you, and I don't feel at all qualified to advise as it sounds like you have tried many of the standard treatments and are still struggling. Many people on the board with the most severely affected babies have found that the only place they have got answers is Great Ormond Street in London and particularly by seeing Dr Shah. I'd ask for an NHS referral to him, or if you can afford to, go private to see him.

On the milestone front at least I can reassure you as my son Matthew was very slow with all his physical milestones but has come on leaps and bounds since his reflux was better controlled and has now caught up with where big brother was at 20m old. I spent so long worrying about him not sitting etc, but I truly believe that if they are in pain they can't learn, all their energy is taken up just coping with the pain. I'm sure that will come right once you are on the right track with the reflux.

Jen x

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Permalink Reply by natasha on February 4, 2012 at 20:22

Thank you  I am really looking at going private and pay for it some how as something has to change, My daughter spends so much time alseep as she has no energy I can understand why she is behind x

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Permalink Reply by Brenda Parara on February 5, 2012 at 8:47

Hi, I am so sorry you are going through such a difficult time with your little one. Our story is very similar to yours but we have managed to get our son to keep most of his milk down since we changed it to cow and gate pepti junior. He still brings it up and brings up his solids but the amount is very different. He is also 7 mths and is on gaviscon  6 x a day, 1.4mls of ranitidine  2x  a day and 3.2 mls of domperidone 4 x a day.   Also we put a really good crib mattress in his buggy and he slept in that as it was the best way to keep him up and worked really well especially when choking. Does your daughter drink water? My lo loves water and i have to hand everytime he brings up acid. Also, when we went through the stages of refusing milk altogether we gave it to him in a spoon - takes a long time but i think the fact he didn't need to suck helped. the other thing we did was have a bottle ready when it was nap time and fed him whilst he was asleep. I agree with Jenny, the milestones will sort themselves out when your little is in less distress and pain. Is your daughter teething yet?

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Permalink Reply by natasha on February 5, 2012 at 17:13

Daughter been bak up hospital she has a bad chest infection, daughter will talk water over milk always been like this, i will try the spoon feeding, we tried dreaming feeding but she would sick it up and we had to change bedding etc was a nightmear! Not teething yet x

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Permalink Reply by Beverley on February 5, 2012 at 17:32

Hi Natasha,

That sounds reply hard. No wonder you're so worried.

I would second Jen's view that you should pay privately to see someone at GOSH as her symptoms sound a little out of the ordinary.

The only other thing I would suggest is that if you're on Facebook, join The Reflux Room. Some of the mums on there have kids with complex conditions and I've heard people talking about blood sugars.

Hope you can get some help for your daughter.

X

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Permalink Reply by natasha on February 5, 2012 at 17:43

We are going to call Monday morning and get her a appointment and find a way to pay for it some how, she cant go on like it, they said the low blood sugar is due to her not drinking enough and being sick, will ask to join on face book thank you x

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Permalink Reply by Brenda Parara on February 5, 2012 at 18:17

Hi again, She may be teething to add insult to injury, my lo was awful with feeding when he started. i know it sounds awful to suggest more intervention but maybe trying some teething gel - we use dentinox as we were told bongela is bad for babies with reflux as it numbs their throats or maybe calpol.

I hope you get to see someone soon x

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Permalink Reply by Helen Milne on February 5, 2012 at 20:03

I know a reasonable amount about blood sugars as my son has a rare condition called hyperinsulinism where his blood sugars drop on a regular basis.  He was very poorly when born and spent the first 48 hours fitting because they couldn't control his blood sugars.  He wasn't stable until his pancreas was removed at 3.5 months.  I am here because hyperinsulinism and reflux often go hand in hand.  Anyway I don't mean to scare you but there is absolutely no excuse for low blood sugars that cause fitting - fitting means that the brain is being effected.  You MUST get the hospital to take it seriously!  A normal child should never go so low, even when food deprived, and therefore you should get them to investigate the blood sugars further.  Suggest hormone or insulin inbalance and see if they can do any tests.  

 

H xx 

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Permalink Reply by Sara B on February 5, 2012 at 20:07

The vomiting really does suggest cmpi, i would definitley cut cows milk out and revert to neocate, and maybe soya as well if she is having any of that through her solid foods. Xxx

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