very sad and confused

Replies to This Discussion

Permalink Reply by Michelle on April 1, 2008 at 8:28

Hi, so sorry you are going through this with the medical profession. He is wrong. There are other meds like omeprezole which has a much better success rate and in my view considering your sons age he should definately be trialled on it. If it didn't work you would know in 2 weeks and then perhaps they should consider looking into other causes and treatments. Personally, I would get a second opinion. I know it is bad that you have to go private, but if you can afford it I would definately go down this route. We have done this both times and in my opinion it was 200 pounds well spent. My daughter was diagnosed just by symptoms at 3 weeks and we had t under control so early compared to my son who we sat back and suffered with for too long whilst the GP's told us there was nothing wrong. I can recommend a guy in London at the Portland but you can probably find someone more local and perhaps cheaper!!

Get an appointment booked today and try and get him trialled on the omeprezole.

Hang in there
xx

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Permalink Reply by Lisa on April 1, 2008 at 9:55

Hi Jena

I'm sorry to hear about this. I am surprised that any consultant worth his salt would want to put a baby through an invasive procedure like a ph study until all meds have been tried without success. Like Michelle says I would ask for a second opinion, if you can't see another consultant through the NHS then if going private is an option then pursue that avenue. Daniel has now been on omeprazole about a month and although things are hardly perfect within the first few days of him taking it we noticed a definitive improvement in his sickness. Like Rory the Ranitidine failed to have any effect for him and I too was told by the GP that that was all they could prescribe. I think the main reason they are loathe to prescribe it on the NHS is the cost aspect.

Stand firm and push them for what you believe is in the best interests of your son, after all you know him better than anyone else.

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Permalink Reply by rachael on April 1, 2008 at 10:01

Hi Jena,
Did you know that from today you can pick which hospital you go to? Tell your GP you would like to go elsewhere.
Rachael

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Permalink Reply by Helena on April 1, 2008 at 10:23

Hi Jena

So so sorry you and your little one are going through such a hard time.
It's quite surprising Rory's doc is prepared to carry out invasive tests before having exhausted the medication route. As I understand it and as it was explained to me by the ped, the next logical step for your son would be to try the omeprazole first and see how it goes. And if this failed to work, then they would need to consider other investigations.
Our little one used to be on Ranitidine and didn't work for her either so the ped prescribed Omeprazole which seems to work much better for her. Although both drugs reduce the production of stomach acid, they do so in very different ways, usually making the omeprazole more effective than the ranitidine (the doc should know this anyway!), so I really don't understand why your consultant is so adamant to do the ph probe before trying the omeprazole.
I agree with both Michelle and Lisa, it would be worth having a second opinion even if this means going private.

I'm sure you're feeling exhausted but you know what's best for your little one so it's worth using part of your energy to fight and get him the best medical care. (This is a mother who had a nervous breakdown after months of fighting with HVs and doctors talking, so I know it's easier said than done, but hang in there!)
Thinking of you both and hoping things will get better soon.
Keep us posted on any changes/progress.

Helena X

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Permalink Reply by Shelley on April 1, 2008 at 16:38

Hi Trish,
You mention that Omeprazole can cause other problems - what are they?
My paed assured me that there were no side effects.
Ranitidine didn't work for us.
Shelley

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Permalink Reply by Jena on April 1, 2008 at 21:34

Thanks so much for the response i really appreciate it. needless to say we have had one of the worse nights last night and days today in a long time. i rang the bupa cromwell hospital this morning and have an appointment tomorrow THANK GOODNESS.

He is so uncomfortable and since yesterdays appointment at the hospital i just feel so tearful all the time the littlest thing is setting me off - i havent had a full nights sleep in nearly a year and im sad that this has tainted the first year of my gorgeous boys life.

Trish - he's on the max for his weight of ranitidine as far as the docs have made we aware - but the docs so far have been so awful who knows!

Does anyone have any older children that have been through this and are out the other side?? do they have any problems now?

Also i was wondering if any of you used painkillers (calpol/medised/etc) when a reflux 'episode' was going on? i have tried that in the past but havent found it made any difference and i just wondered in these medicines actually made any difference to reflux?

Hope everyone is well
Jen xxx

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Permalink Reply by sally on April 2, 2008 at 9:31

hi jena
Gosh im so sad for what you are going through at the moment,it must be so hard. I can only talk from our experience, but with rohan (now 5 months) ranitidine didn't work at all. Infact at one of his consultant reviews i was told that it either works well or not at all and there doesn't seem to be any middle point with reflux babies. For us omeprazole has helped alot, especially at night. i know what you mean re the ph test, at one review i saw a different dr as our consultnat was away, who said that his consultant (who wasn't looking after rohan) insists on this test before ompeprazole will be prescribed. i refused this too because i couldn't bear to put rohan through anymore distress. Luckily i stood my ground and asked if our consultant would do this routinely, and thank goodness he doesn't. I've learned that there's so much variation in treatment and care so go with your best mummy instinct.
You asked about pain killers, the hospital said it was fine to use if the pain was bad, to be honest theres only been a couple of times we've given calpol but it has helped. I guess it helps when our littles ones have sore and ulcerated oesphagus' from the acid. Do avoid anything with ibuprofen though as this irritates the stomch lining and could make things worse, but paracetamol is fine.
I really hope things go well for you at the appointment. let me know how it went, got my fingers crossed for you as i type.

Best wishes

salx

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Permalink Reply by rachael on April 2, 2008 at 9:33

YES USE CALPOL!!! I use the night time one for my baby as he tends to be worse in the evenings. You would use it for any other time your baby is in pain, so why not? I probaby use it about 3 nights per week. Good luck at the Cromwell. I'm getting my baby referred to a paediatrician- hopefully a private one- just waiting to see if Bupa cover us, so I'll be interested to hear how you got on.
Rachael

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Permalink Reply by Jena on April 2, 2008 at 20:25

Hi there,

Just to update on how the cromwell went.
The second opinion was well worth the money, we've come home with the omeprazole and domperidone as well as an appointment for an ultrasound and blood tests, Then depending on what these measures do she then recommended the PH study.

Why on earth wouldnt the nhs hospital do these steps.... especially the ultrasound BEFORE the Ph study. . the ultrasound will rule out any obvious problems in the system. i realise that the ph study is the only true way of measuring the acid etc, but the specialist today said that before the ultrasound stop all the meds 3 days before and that they'll look at everything and then they'll probably ask me to feed him his milk to see what the can see with regards to it going down and refluxing back up if it does this at the time.

the omeprazole we have is unfortunately the tablets which we've been told to crush with water and give by syringe - any tips as rory has refused to take it, tonight i mixed it with juice in a little bottle but as it got to the bottom the teat got clogged.

Thanks for all the suggestions about a second opinion its saved my sanity, im very cross at the nhs now though!!!

im hoping the mixture of new meds will improve everything.... please please please!!!!!!!!!!!

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Permalink Reply by Helena on April 2, 2008 at 21:38

Hi Jena

Well done you! So happy to hear the appointment went so well.
Alexandra too takes the Omeprazole tablets. We find the most efficient way to give it to her is with a syringe. We dissolve the tablets in cooled boiled water and then draw it into a syringe and she happily drinks it. You can maybe add some of Rory's milk so that he's not put off by a new taste. The nuissance with the tablets is that you always get some powder residue which is probably why the teat got blocked.

I really hope the omeprazole will help Rory. Please bear in mind that it sometimes takes a while to work, so don't feel discouraged if things don't improve straight away.

Take care and keep us posted.
Helena X

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Permalink Reply by Michelle on April 2, 2008 at 21:48

Congrats on getting such a quick appointment and hopefully moving on to a better more comfrotable life for everyone. The omeprezole can take two weeks to work and did for us so don't feel discouraged if you don't see results straight away. I hope you don't need to go down the other route with the tests and the new meds is what was needed. Keep us posted.

PS - Now that my daughter is on solids, I put the tablet in with a little water and it then dissolves and i then mix it in with her food.

Permalink Reply by Michelle on April 2, 2008 at 21:53

Also Jena, for a little encouragement. My son was weaned off his meds at 13 months and has not had any painful symptoms since. There is light at the end of the tunnel so really hope things improve quickly for you.

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