Update.

[dodie74]

Update on Kian. Went to hospital Thursday to get ready for scopes on Friday. Thursday was a nightmare as he could not drink the picolax this time at all so he begged me to ask for nurse to insert ng tube for it ( he has never ever had ng tube) 1st try he was sick but got it down successfully second go. He ended up throwing all the picolax back up about half hour later so had to wait and see if it would work at all, luckily it did and he had his second dose at 6am next morning only to be sick again . Anyway scopes went well, no sign of active crohns all around the bowel apart from an area of scarring at the terminal ileum so no need to change med to infliximab. Plan now is for surgery to take the bad bit away and to continue with mxt. Kian is quite relieved as are we, maybe now he will start putting weight on and growing once he has surgery. Hoping it's before Christmas or could be just after. At least we know what what we dealing with and feel quite positive about it all. SO,SO proud of him with the way he dealt with everything last couple of days, much stronger than he looks. Xx

 

[my little penguin]

Glad you got some answers .
And now have a plan in place .

 

[DustyKat]

Oh my, poor Kian. But what an absolute champion that he managed to get through all that as well as he did! :ghug: It must have been such a worrying time for you dodie.

I am so sorry to hear that it has come down to surgery for your lad. I hope with all my heart that he has the positive outcome my two have and he achieves long and lasting remission. Good Luck!

Any questions please just ask away. :heart:

Dusty. xxx

 

[DJW]

Well done Kain.

You are one tough kid. :thumright:

 

[Sascot]

That picolax is truly awful stuff! Glad things are generally looking good. Hope the surgery works well. If you get Mr Walker, he's fab.

 

[dodie74]

The last couple of procedures was done by Mr Walker and he is fab, very nice man. Yea Vikki and Dr Russell said if we want it done keyhole then Mr Walker is the only one in Yorkhill who does this surgery but there is a longer waiting list just now because he is only one and could be before Christmas or just after. Kian isn't in a lot of pain so we think it's better to wait. Xx

 

[Sascot]

I will miss having access to Mr Walker in the future. Only a year till Andrew moves onto adult services :yfrown:. Worth waiting for him! Would be good if it can get done before Christmas.

 

[dodie74]

How is Andrew doing? Good I hope. Does he move to the southern? Yea it's a great time at yorkhill isn't it. Xx

 

[my little penguin]

Wow !You have to move up to adult Gi before age 18?
DS gets to stay pediatric until 18 possible age 22(finishing college) just depends on the Gi.

 

[Sascot]

Dodie - Andrew is doing really well apart from tiredness. We just move onto Forth Valley Royal in Larbert. Not sure if they are any good or not.
MLP - unfortunately we start the process once they turn 16 :eek2:. I did say I don't want to start until he's at least finished his important exams next year May.

 

[CDJ]

Well done to Kian for going through this. Sorry to hear you will need surgery, not as easy thing to go through I would imagine.

Sascot is it just in Scotland that children go to adult services at 16? I know when Josh has been in hospital recently there was a child on the ward who was 17. We have a clinic appointment next week so I think that I will ask about this as Josh is only two years away from being 16.

 

[Chester31]

CDJ my son is 16 and transition to adult services hasn't been mentioned yet. I think it's 18 for him but will check at our next appointment.

 

[dodie74]

Yea feeling nervous about it but it really needs to be done now, he hadn't gained weight for a long time now even though his appetite is really good and he also takes enshake. It's just that one area at termnal ileum so hoping it will make a huge difference for him and he will start to thrive. X

 

[Sascot]

CDJ, not sure if it's just Scotland. I think we can insist on staying under paediatric care until 18, but they like to get the process going at 16. I am not that happy with it.

 

[DustyKat]

It is similar in Oz too but there seems to variations based on the actual doctor and hospital etc. We have had a mish mash of experiences:

Sarah was diagnosed at 14 but because we live so far away from a paediatric GI she started seeing an adult GI straight up. The local general paediatrician she saw said he sees his patients up to the age of 25.

Matt was diagnosed at 17 and sees the same GI as Sarah. At our local hospital he was admitted to the Children’s and Adolescent’s ward. He had surgery at an adult hospital in Sydney but since it is a major referral hospital they have patients that are paediatric and have a Department of Adolescent and Transition Medicine that sees everyone admitted into the hospital between the ages of 12-24 with a chronic disease, it is an automatic referral.

So yeah, I think there can be a lot blurring up to the age of 25.