weight loss?

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Permalink Reply by Emma on July 9, 2008 at 22:27

Hi

Sorry to hear about your son's weight loss. I should have thought that a Paed would be concerned about a weight loss of 1lb. I have noticed that Paeds and HVs are not really concerned about weight loss unless the baby has dropped a centile. Has this happened to Ellis? My daughter Fraya started losing weight (not as much as Ellis but it was getting to the point that she would hardly eat anything so it was only a matter of time before she would lose a lot) so she was admitted into hospital for observation with feeding and daily weight ins. We changed bottle in hospital (used hospital teat and bottle) and she started drinking her milk again and gained 6 ounces in 6 days. Unfortunately she still does not like her solids much. What is Ellis' eating like?
Hopefully the ranitidine will help with your son's pain. If not, then ranitidine can be changed to omperazole which is stronger.
Keep us updated!

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Permalink Reply by DONNA CHURCHES on July 9, 2008 at 22:47

Hi I'm not got the hang of this website yet I think I may have replied to your homepage?

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Permalink Reply by Jennifer on July 10, 2008 at 8:06

Hi Donna,

Do you mind me asking what percentile Ellis was born on? And what centile is he on now? How has his weight tracked since he was born? 1lb is a lot to lose and I am disgraced that they are not doing anything.

Callum has lost about a pound in 2 weeks and the paed did not even notice. We are in the process of changing paeds (new appt. tonight) so I did not pipe up and tell her. Sometimes you just get a slack paed. Ours makes so many mistakes. She looked at Callum's last admission weight - 15lb 13oz. His weight on the day was 16lb 1oz. She did not take into account Callum's weight gain whilst in hospital last, he went up to 16lb 15oz. She really is rubbish!

Emma suggested Omeprazole, this may be a good idea. If Ellis is losing this much weight, ranitidine is unlikely to have an effect.

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Permalink Reply by Jennifer on July 10, 2008 at 10:46

Hi Donna,

I've just looked in my red book and it looks like Ellis was born just below 50th centile and now has dropped right off the bottom of the chart! If this is correct, they should have admitted him! They should definitely be doing something by now.

Callum went to see a private Dr at the Portland who wanted to do a nissen fundoplication on Callum purely based on his lack of weight gain. Callum has lots more reasons for doing the op too but weight gain is the most important thing. Callum was born above the 91st and is now between 25th and 50th. And still the only Doctor who noticed was a private one. What I am trying to say is that if they are considering surgery on Callum and he is still well on the chart then they should definitely be doing something for Ellis!

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Permalink Reply by DONNA CHURCHES on July 10, 2008 at 14:07

thank-you so much for your reasurrance because I was begining to think if the paed didn't see this as I problem then I should I? But my gut instinct was still telling me this isn't right!
Basically when we went yesterday he just didn't seem interested he didn't even look at his red book when I showed him, he said he wasn't worried because Ellis has gained weight since his last appointment, I did say thats all good but in the last 2 weeks he has actually lost a 1Ib he still wasn't interested. Ellis's weight issue has been a constant battle but all proffessionals don't seem worried? I am going to my gp tomorrow for a referral note so we can have a private appointment, the appointment is in Leeds with David Crabbe he is the guy who specialises in reflux and carries out all the operations, do you know how long a private appointment usually takes?
I do hope your appointment tonight is ok , how old is Callum? Bless him!
Also what is a nissen fundoplication?
Oh i almost forgot, on Ellis's weight chart he started at the bold line in the middle and at the moment he is just under the bottom one so who knows
Thanks again and do let me know how little Callum gets on!

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Permalink Reply by Jennifer on July 10, 2008 at 21:03

Hi Donna,

I'm really glad you are going for a private appointment. We have done this twice now and it's really worth every penny. I have not heard of David Crabbe but we have never been to Leeds hospital.

A private appt usually takes 30-45 mins. You give a full history from birth, talk about existing meds and symptoms. The Dr will then tell you his honest opinion (more than you would get from the NHS!) he will say what steps should be taken next and what could happen in the future. He will also contact your existing paed and make suggestions. He will often come up with a whole host of things your regular paed hasn't mentioned. Just make sure you let him know that it is a one off appointment (if it is). If he's anything like the 2 docs we have seen, you will never look back.

A Nissen Fundoplication is surgery to correct the reflux. It is rarely done in the UK but more commonly done in the USA. It involves wrapping the top part of the stomach completely around itself thus creating a valve. This strengthens the LES (lower oesophageal sphincter). This is the valve that is weak or non-existant in reflux babies. There are also other types of nissen,for example the Thal which is only a partial wrap.

This surgery is only ever done in extreme circumstances for example, FTT, ALTE's, failure of meds to reduce acid, reccurent pneumonia, etc. etc.

I was right about Elllis's centiles. This is terrible. He has crossed the 25th line, the 9th line, the 2nd line and has dropped off the bottom. This really is unacceptable. I think David Crabbe is likely to pick up on this straight away!

Kind regards

Jen x

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Permalink Reply by Rebecca on July 10, 2008 at 21:17

Hi Donna, sorry you're having so much worry. We are also a bit weight obsessed as Liam was born very little - starting below the bottom line (0.4th percentile). He is gradually putting on weight but he had three weeks of no weight gain when he had a bad cold. The doctors said they hoped this would be a blip and this did prove to be the case. I am sure you are very worried about the weight loss and I'm really pleased you're getting more help. Just wondered if there might be any other reason that might have contributed - has Ellis been unwell?

Omeprazole has really helped Liam's reflux and he's still also on ranitidine.

Rebecca

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Permalink Reply by DONNA CHURCHES on July 13, 2008 at 11:38

Thank-you all so much for all your advice, it wasn't until I joined this site that I realised what bad care we have, and how much more could be done for Ellis, I have learned more from people on here than any health proffesional, I didn't even know that there were more tests that could be done such as ph study and a barium swallow, now I know more it has given me the confidence to try get this sorted.
I am in the process of getting an appointment with a reflux specialist in Leeds so hopefully he will help to move things on a litttle quicker than what we have been.
Thank-you everyone x

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Permalink Reply by Jennifer on July 13, 2008 at 11:49

Hi Donna,

Really glad we could give something back. I have lost count of the times I have had to rely on the website rather than the doctors! Anything else, just let us know, I ask all sorts of silly questions!

Jen xxx

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Permalink Reply by DONNA CHURCHES on July 19, 2008 at 14:20

Light at the end of the tunnel!
After joining this site and through the great advice by many of you - I felt was being fobbed off by my paed. I decided I was sick of getting no-where!
So I called the NHS helpline to find a specialist on reflux they gave us Dr Crabbe's name - based in Leeds. I would have paid to go private to actually get some answers. Anyway when I spoke to Dr Crabbe and he said he would not take Ellis private because of his age - but gave me an appointment 2 days later on the NHS. Wow!!!! I felt as though his words would put my mind to rest either way.

Just got back from the appointment - he was brilliant. He asked loads of key questions in the first 5 min - more than all the other millions of people we had seen put together. He is now gonna give us an appointment next week for a barium swallow. From the results of this he will decide on whether Ellis needs the operation. Although, he said this was quite likely. He actually wants to solve the problem and seems interested - how refreshing!
Whatever happens next I feel so much better - that I can actually trust the advice he gives. You could really tell he is an expert in reflux - he was great!
A huge thank you to you all for your great advice and support - I would never have pushed for this appointment without this site and your advice. And he knows how we feel without me saying anything about how I feel - he said "Your not nuts, you are not a bad mum - you have a son with reflux"

Thank you so much xx
Donna

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Permalink Reply by Jennifer on July 19, 2008 at 15:19

Hi Donna,

Really glad you are getting somewhere. We are too! Callum is worse but just seeing the new paed made us feel 100x better. I think this David Crabbe seems to be about as good as our paed too. Why can't all gastro paeds be like them?

How is Ellis's development? Just wondering as Callum's is a little slow. What does he eat? Has he ever had an aversion to his foods or is it just the vomiting causing the weight loss?

I'm really pleased for you!

Jen xx

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Permalink Reply by DONNA CHURCHES on July 21, 2008 at 21:47

Hi Jen,
I totally know what you mean about feeling 100x better, it is so nice to be taken seriously, it makes me mad I think if we had had someone decent in the beginning it would have saved so much stress and worry. But still at least things should be sorted for Callum and Ellis soon it really is a nice feeling to think this nightmare is on its way to an end. Ellis has his barium swallow on Wed.
Ellis's development is normal he sits, he doesn't crawl but bum shuffles around bless him.
He hasn't eaten properly for ages, he will eat but shortly after food he is in agony crying in pain for min 2 hours and there is nothing you can do for him. David Crabbe said to leave out food until we have him sorted.
I shall be thinking of you and Callum on Wednesday
Donna x

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