Hi Help Please from a Desperate Mum
Hi
My son will be 2 in 3 weeks time and since he was born he has suffered with silent reflux, intolerances, eczma, and breathing difficulties. Up until the age of 12 weeks when we finally managed to get a referal to a paediatric doctor, Jack would only sleep unless completely upright. Since then we have seen 2 consultants, been though numerous medications, but to date only ever had a tummy x ray done.
We have been seeing the same consultant for over a year who has never once examined Jack, or weighed him but has just altered his medication doses and introduced new ones. That said Jack has made some progress but sine Xmas eve has gone back to like he was when 12 weeks old.
His symptoms since birth: wheezy, inability to get wind up or down, periods of screaming and now being able to say tummy hurt during the day (when you put his trousers on he cries and says "to tight"), over an hour to settle at nights then up and down throughout the night, when picks up a virus becomes very poorly with it, eczma patches over main trunk of body. Gurgling tummy when given bottle (almost inside burps) complete discomfort bringing legs up and down like pistons, trying to stretch out his body.
His current medication is 4 x 4ml of domperidone a day, 2.5ml cetirizine, 5ml ketetofin, 20mg losec mups (omeprazole), 2 x 2 puffs of preventor inhaler a day, (blue for emergency) 1 x 1 week of eumovate steriod cream for eczma followed by 2 week of hydrocortozine then one week off (never quite clears).
In the past we have also tried ranitodine, movicol, gavison, not to mention a few others. He is currently on a dairy and soya free diet and has been since 12 weeks. He was also wheat free up until 6 months ago. We have tried to reduce his meds at 1 year and 18 months but he became very poorly when doing so was advised to start up again and dosages were raised.
We have finally been referred to see Dr Shah at GOSH and are seeing him tomorrow afternoon, can anyone tell me what to expect? Our main concern with having no tests done are we making sure we are treating him correctly is there anything else going on that we can't see. Does anyone know if Dr Shah will support us in finding out these answers (our last consultant just said the medication was telling us what we needed to know)
I'm sorry to go on but the lack of sleep, midnight until 6am most nights is starting to really hit hard especially as I work up in London 3 days a week and we have 2 other boys 4 and 6.
Please help, anyone who can give me a heads up of what to expect (my husband just keeps saying don't expect miracles from Dr Shah) I know he is right but I am just a tired worried mother who wants her little boy to be better. Thank you
Views: 71
Replies to This Discussion
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Permalink Reply by Jenny Rawling on -
Dr Shah is THE MAN when it comes to reflux. I really hope your appointment is hugely positive tomorrow. Jen xx
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Permalink Reply by Anita Stewart on
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Any idea of what to expect?
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Permalink Reply by Joanne Carlyon on -
I don't know what you might expect but I really feel for you. My little boy is nearly 20 mth and very bad nights never yet slept through. How did you manage to get a referral I would love to see this chap after hearing about him on this site but don't want to offend our gastric dr. Good luck for tomorrow I really do hope you get some answers x
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Permalink Reply by Joanne Carlyon on
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I don't know what you might expect but I really feel for you. My little boy is nearly 20 mth and very bad nights never yet slept through. How did you manage to get a referral I would love to see this chap after hearing about him on this site but don't want to offend our gastric dr. Good luck for tomorrow I really do hope you get some answers x
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Permalink Reply by Sarah on
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Dr Shah is wonderful. Very understanding and empathetic - he has an allergic child himself.
From what you describe, I think he's likely to want to do scopes. These will give him additional information which would help him decide on the best course of medication to meet your Child's needs.
Reflux that doesn't resolve by the time a child is 2 warrants furth investigation so don't be alarmed if he orders a number of different tests - they'll all provide useful details about the underlying cause of the continued reflux!
I think your husband will be pleasantly surprised!
We are seeing Dr Shah tomorrow too :-) xx
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Permalink Reply by jo on -
anita
,dr shah is def the man to see if allergies/intolerances are suspected. im sure he will be able to help you.i am going to see him tomorrow too ! x
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Permalink Reply by Laura Perks on
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I didn't know he had an allergic child himself. That's v.interesting. I felt he was focusing a lot on allergies with us, and that could well explain why. Makes me like him more in fact .... now I'm in a quandry as was going to switch to a more local consultant. Now not so sure I should ! :-/
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Sorry to be so ignorant but what are scopes? What time is your appointment?
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Permalink Reply by jo on
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i am there 3.30
.scopes are the "magic eye " test using a small camera to look inside the bowel either from the mouth end " gastroscope" or bottom end " colonoscope. x
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We are there at 2.30 so will probably meet you on our way out. Feeling very nervous and emotional right now but sure we are on the right path ..... its been a long 2 years
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Permalink Reply by Sara B on
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Anita,
I am also seeing shah tomorrow, but in the morning. He has improved my little boy enormously so far. He is lovely, takes you very seriously, i felt i had a massive weight lifted from my shoulders when we got a diagnosis from him. Having an older refluxer everything he said made perfect sense. I have huge faith in him, i hope he improves your little one as much as he has ours. Xxx
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