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09-01-2014, 02:02 AM   #1
justfortoday
 
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New diagnosis in NZ

Hi Everyone

I am also new to this forum and like Hellpatrol rarely post to forums but I am in need of a lifeline. I live in New Zealand and have found it difficult to get support with IBD and feel rather lost. I do not have Crohns, my daughter Caitlin who is 11 years ,has just been diagnosed in May this year after 7 months of continual diarrhea. So I have been living and breathing Crohn's since her diagnosis, trying to find out everything I can. BUT there is so much information out there.....

So it is on this forum that i hope to find out more from others who are going through the same day to day challenges of living with this disease : )
09-01-2014, 02:07 AM   #2
justfortoday
 
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Caitlin is currently on Azothrioprine (75mg) and a seven week course of steriods that she will finish in two weeks time. the doctor seems to think that her Crohns may possibly flare up so he wants us to be looking at Infliximab as the next medicine to put her on. So she will be on Azothrioprine and Infliximab and I am just going to take one day at a time.... it makes me feel more positive when I hear stories from others that give me hope that things will get better. Thanks farmerswifey : ) Life sure does have its ups and downs
09-01-2014, 08:06 AM   #3
CrohnsKidMom
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Welcome to you as well, Justfortoday. I hope this will be the magic combo of meds to get your daughter into remission. Hang in there, it does take time.
09-01-2014, 08:08 AM   #4
my little penguin
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Hi!!!
Sorry you had to join us.
But most have btdt with remicade and little ones.
It worked very well for DS .
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DS - -Crohn's -Stelara -mtx-IVIG
09-02-2014, 07:37 AM   #5
Precious ones
 
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Hi

Like you we are fairly new to this journey (6 months since diagnosis for my 10 year old) and watch and waiting on my 13 year old with ongoing symptoms. I think our hospital will also be looking at infliximab next. We did the Modulen only route first for 8 weeks with 75mg azathioprine started also. We use 3 drinks a day as supplements as my sons growth has really slowed down the last 3 years. They don't seem to like using steroids if they can spare them on children in the uk. My sons are half kiwi, my husband was from Napier until he came to the Uk in his twenties. I was curious to know how the treatment is in New Zealand as if it appeared to be a lot better I would really consider moving (although husband very settled here now with own business and I think my boys would struggle with change). I hope your child does well with treatment.
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Mum of son age 10 @ dx 4/14 crohns of stomach, colon, ilium
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Azathioprine 75mg
09-02-2014, 08:44 AM   #6
Smile Please
 
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Hi, my only advice for you....................because my son who is 12 now was diagnosed with Crohn's two years ago. If your anything like me please lookup everything before telling the doctor ok lets do that. Also make sure you understand what they are doing and why. But please don't go reading more then what you need to know at the present time. It just about killed me reading about Crohn's and what could happen way, way, way down the road in the far future. Don't beat yourself up about it, I mean IT'S NOT YOUR FAULT SHE HAS IT! Please remember that! Good diet, Vitamins, being active, and a good nights sleep always helps. That goes for you too MOM!

Good Luck!

09-02-2014, 11:51 AM   #7
Sascot
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Hi and welcome. I hope the meds work well so your daughter can hopefully feel better for long stretches of time. My son is on 6mp and doing well at the moment. The meds are scary but untreated Crohns is too. It took me a long time to accept that he needed to take them, but needs must. Good luck with it all
09-03-2014, 04:03 AM   #8
justfortoday
 
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A BIG thank you everybody for your support. It is much appreciated xx Caitlin went and saw the paediatrician today and he is happy with her blood results and says that her inflammation is down to normal. Which is great!

Have any of your children contracted Clostridium difficile (bacteria). My daughter has just finished her antibiotics to clear this infection in her bowel. She has also had bruising on her legs since starting the Azothrioprine. the doctor calls it erythema nodosum. Has anyone heard of this apparently it can be quite common amongst people with IBD.

When going to the doctor today he also said that he wants Caitlin to go for a chest x-ray because of her leg condition she might have TB ?? (but he said only a slight chance). So now I am thinking. I now have a child who has Crohn's who has these two conditions and now possibly TB. Some days I am not too sure about this Azothrioprine?

But I know I should be grateful (which I am )but I do worry with her immune system suppressed like it is what other sicknesses she might come into contact with at school.
09-03-2014, 04:04 AM   #9
justfortoday
 
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Thank you for your support. I appreciate it. One day at a time...
09-03-2014, 05:58 AM   #10
gotumtum
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Hi Justfortoday

I thought I would say hi even though I am in a slightly different situation as it is me that is unwell, and I am undiagnosed.

I am on the west coast of the South Island - so you are not the only Kiwi on here, and there are a few others floating about - a few ex pats too.

If there are any NZ related things I can help with just ask - type in Gotumtum and it should let me know you have asked me a question - or PM me.

Oh- and this is a great forum - heaps of information, and support if you just need to vent - It is fantastic as people on here really understand where you are coming from - as most of them have been there themselves

Best of luck with your journey.
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