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crohns disease...

(15 Posts)
bubblepop Fri 20-Apr-07 13:47:48

my best friend has 2 sons, the youngest who is 8 has been diagnosed with crohns for the last 2.5 years. is there anybody out there who could point her in the direction of some sort of support group? she spends a lot of time taking him back and forward to the hospital, he is on and off liquid feeds and at the moment currently on 3 different medicines. i don't know much about it myself and feel a bit useless, she is a bit down in the dumps at the mo.i think it would help if she could talk to someone, maybe another mum, who is in the same situation.ive asked her to join mumsnet, but not sure whether she will or not. thanks

Mum2FunkyDude Fri 20-Apr-07 13:49:18

Try and get Aitch to post, I know she has posted about a friend of hers with the condition.

Bump

Mum2FunkyDude Fri 20-Apr-07 13:56:07

Try googling it I did a quick search and found this link here

AitchTwoOh Fri 20-Apr-07 14:18:13

i'll ask my friend for you.

roseylea Fri 20-Apr-07 14:22:01

I can vouch for NACC; I am a sufferer and they are excelent. You can phone their office in St Albans (the number is on the webste) and ask anything.

It's not a nice thing to have to deal with, esp. as a child. Poor lamb!

roseylea Fri 20-Apr-07 14:25:56

excellent!

AitchTwoOh Fri 20-Apr-07 14:44:53

whereabouts is she, roughly?

jomist Fri 20-Apr-07 19:10:32

My 10 year old son was diagnosed last December with Crohn's and spent weeks in and out of hospital. He had liquid feeds through an NG tube which didn't work for him and he ended up so anaemic he had a transfusion and then steroids which have put him into remission. It is a very difficult time and I fully sympathise with your friend.

As already mentioned NACC is a great source of info and helped me immensely when I had problems at school during the NG tube feeding saga. School were so unwilling to help and NACC were marvelous. Also CICRA is another organisation which is specifically for children with Crohn's. Another great source of info.

NACC and CIRCA both supply "cant wait" cards which can be shown in shops/restaurants etc., if he needs to go to the toilet urgently. The card explains that he has a non-infectious illness which requires him to use toilet facilities urgently. Fortunately we haven't had to use it yet, but it comes with us where ever we go just in case!

roseylea Fri 20-Apr-07 21:14:56

sorry if this is a tangent, but Jomist, if you don't mind my asking, in what ways were your son's schoolteachers unhelpful?

The thought of a school being unhelpful or unsympathetic just makes me

peachygirl Fri 20-Apr-07 21:18:43

If she searches NACC she should find smilies people here they are linked to Nacc and are specifically for children and young people.
Nacc are great. DH has Crohns. We did the sponsored walk last year and had a great time, hoping to do it again this year

jomist Fri 20-Apr-07 21:34:23

The headteacher did everything she could to make life difficult. The community nurses were going in to school to feed him on the days I work and I was going in to feed him on my days off. The head refused to allow staff to be trained to do this simple feeding procedure and was rude to the community nurses. The community nurses brought in the lead nurse for the area who she refused to meet. The head eventually spoke to the lead nurse on the phone and after he pressured her to allow staff to help, she eventually said that they would but only after 4 weeks which would have been when the tube feeding ended. The lead nurse was furious with her.

It led to me complaining to the governors who threatened me. The governor said I was jeopardising my relationship with the school by complaining.

A meeting was arranged with the head and I which she forgot to write in her diary. Another meeting was arranged where she told me she didn't want to discuss my complaint letter. I told her I would discuss it then...and did.

At the meeting she blamed everyone from the school nurse, community nurses, lead nurse and told me that no staff volunteered to help even though staff told the nurses they would feed him.

Basically she lied through her teeth.

I approached NACC for help before the meeting and they told me she had discriminated against him under the Disability Discrimination Act. When I told her that she went white.

NACC, the hospital and community nurses team had never heard of a head behaving like this. They all told me that schools are willing to help and couldn't believe what was going on here.

They refused to draw up a medical needs plan but I insisted and eventually they conceded.

As you can see, it made a very difficult time much worse than it needed to be.

I hope your friend hasn't had to go through anything like this and that this is just a case of a head gone barmy.

AitchTwoOh Sat 21-Apr-07 00:10:06

jomist. that is awful. the absolute last thing you and your child needed...

roseylea Sat 21-Apr-07 12:36:25

Jomist I am shocked that a headteacher and governor could act together in such a way as to completely fail a child in their care.

That is appalling. I am lost for words, I am so and stunned that in this day and age such behaviour could happen (and be got away with).

Ruthyn Mon 19-Jul-10 22:13:46

That is totally horrendous. My DS1 was diagnosed with crohns 15months ago now, just before his 4th birthday. It is hard going, he is on medication, very slow growth and diarrhea is normal, but otherwise he is a healthy chirpy little chap. His school are FANTASTIC. NACC has also been really helpful when we have needed it.
We are going to a weekend in September this year to meet other families with a child with crohns, organised by NACC. I would love to speak to another parent of a young crohns patient! Is there anyone out there?

snoppymum Mon 25-Jul-11 20:23:29

Hi just to let you know I have a 10 yearoldwho has just been diagnosed with this horrendous thing called Crohn's. My child went straight on to tablets treatment which he was taking evertday 15 tablets a day. At first we thought he would have the feeds but the type of treatment he needed was the tablets. He has been a star and is now dealing with it ok, school has been great!! We still have a way to go till it's in full remission it has been great looking at all your messages as I will get in touch with some of the places that have been mentioned. Asfor the lady that had a bad time with the school in regards to her childs illness You take that up and make sure it does not happen again as it is a Disability and no family should be treated like that!

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