Paed appointment tomorrow

[connorsmum]

Morning All! I hope that you are all having a great weekend.

As for me, I am trying to do everything that needs doing, like the washing and ironing, as well as packing a bag for Jamie and myslef in case he gets admitted tomorrow. I guess that I am doing all of this as a way to take my mind of how nervous/scared I am. I just wish that I knew what was wrong with Jamie already.

Anyway, I have made a list of questions to ask the paed (I ALWAYS forget something!!) and I wanted to know what you all think. I know that you don't know me very well, but want to make sure that there is nothing obvious that I am missing.

Just a bit of background info (for anyone who missed my newbie post!). Jamie was born at term weighing 7lb 13oz. He had a heart murmur at birth, prolonged jaundice until he was 9 weeks and a UTI at 4 weeks (he's on long term antibiotics). He gained weight just fine until he was about 3 months and then started dropping through the centiles until he fell off the bottom of the chart 2 weeks ago He has many bouts of
recurring diahrea (sp?) and now all his stools are pure liquid and STINK! Jamie developed bad eczema at 5 months old. He was then diagnosed as failure to thrive on 13/12/04 and spent 3 days in hospital undergoing tests and we haven't heard anything since. Jamie is still exclusively breastfed as he has an issue with solids. Developmentally, he is spot on (or at least I think he is!)

The questions that I have thought of so far are:

*Is there a link between all of Jamie's health problems?

*What next with regards to the sweat test? (abandoned 3 times due to his eczema)

*Jamie's cold that has lasted 3 weeks?

*watery/stinky nappies?

*sudden change in poo habits (suddenly not going for days on end, no change in routine)?

*lump in Jamie's neck (was told it was harmless by a gp, but may as well get it checked again!)

*should Jamie be on vitamins?

*should we see a genetesist?

If anyone can think of anything else, please feel free to say, any help/thoughts are appreciated!

Kerry & Jamie x

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Wishing you luck for tmrw x

All i would ask is what the results are from the tests he had done but im sure they will tell you tmrw

Good luck again x

Keep us posted x

Very best wishes for tomorrow. Sorry that I can't offer any advice, but please let us know how it goes. Take care xx

Connorsmum - hi!

Good luck tomorrow.
Just a few things that come to mind...

The sweat test - they can do a blood test can't they for CF? Ask them to do that, it seems a bit daft to keep trying the sweat test if its not going to work.

The tests he had before - what were they? I would think that they would have been in touch before now if there was anything serious there.

Feeding/vitamins - not sure about the vitamins but why not ask to be referred to a dietician A paediatric one) who can help introduce solids slowly. They aren't the be all and end all but just having someone to refer to can take the weight off. We had a couple of paediatric cardiology dieticians, one was great the other a waste of space

Don't be rushed during your appointment, take your time, make some notes if you need to and ask everything even if you think it sounds silly. If you do get any definite answers ask if there is a phone number for someone you can call if you have any questions later - I often find I've forgotten to ask something obvious.

Another idea is to ask for a copy of the clinic letter. That's the letter that they send to your GP after the appointment. You can make sure that everything's been covered.

Is it your local hospital that you're going to or a specialist children's?

Good luck again - let us know how you get on.

I don't have any advice about what questions to ask but wanted to wish you both the best of luck with the appointment.

Potty1,

Thanks for replying! We are going to our local hospital, the nearest childrens hospital is in Birmingham (I think).

I was going to ask for a blood test to rule out CF, I can't see the point of wasting the tech's time doing another sweat test.

The tests he had done last time where pretty routine, urine, stool, sputum, chest x-ray. He was also refered to a paediatric dietician, who put us onto a SALT. We have made a bit of progress, just not enough to make a difference yet! With regards to his other tests, they said no news is good news. The only test we heard about was his urine sample, so we did another which was ok.

I will definately ask for the clinic letter.

Thanks for the tips!

Kerry & Jamie x

Connorsmum - we go to Birmingham for dd's cardiology.

Just had another thought about Jaime's anti-b's. Is it trimethoprim he's taking because dd had that as prophylaxis for UTI's and it upset her stomach after a while. Maybe it's worth asking them if he would benefit from some probiotics if they still want him to carry on taking them.

Hi. I would certainly agree that if they think he might have CF it would be better to do DNA analysis. They might be able to do this with a mouthwash or gentle scrape inside his cheeks. It won't necessarily give you a definite answer- if they find a mutation then you will know for sure, but they will only pick up a certain percentage of mutations (80-90% I would guess, depending on how the test is conducted) by testing, so a negative result won't be absolute. I would certainly ask to see someone who could explain this fully if you are going to go down this route. Good luck!

No practical advice, but I know how hard these Paed appointments can be. So lots of positive thoughts coming your way....

Hope it all goes OK for you tomorrow. I think Potty1's idea of seeing the dietician is a really good idea (we've just been referred for dd as she doesn't do solids at all - she's now 10mo & weight is dropping off).