Hi All

It was so lovely to find this forum and find that other families have the same problems. I have been reading quite a few of the posts and just wondered if any of your children suffer from physical health problems as well as anxiety and depression. To give you a very quick history, my daughter Kiera is 13 years old. She hated pre-school, primary and junior but the schools were all very supportive and her attendance wasn't too bad. I was absolutely dreading what secondary school might bring but for the first half term she absolutely loved, was very full of it, laughing etc. Then she got a condition called colonic inertia. Apparently it is likely to have been brought on by stress. She returned to school in the Easter. Hated it, screaming, crying, self-harm, paramedics and police at our door etc. She convinced us it was the school and so from September we moved her to a private school. Costing us a fortune which we can't afford but very very small class sizes quite cosy. Exactly the same happened. First half term she loved it couldn't thank us enough. Then struck down again with colonic inertia. She should be well enough to go to school but has an almost continuous migraine and aura. I know she isn't well as she looks terrible but I'm thinking that this is all brought on by anxiety. Is again convinced that all the teachers and children laugh at her and dislike her. Wants to move schools again.Is moody, same problems with her watching tv and on computer etc. all day. Causes lots of arguments if I try and get her to do any school work if she is at home. She sees a counsellor at CAMHs who she doesn't particularly like and I don't think she is very forthcoming. CAMHs say she doesn't need CBT. Any thoughts would be appreciated. Thank you. Paula
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Hi and welcome to our little group of understanding SR parents. Your daughter sounds like a classic school refuser or school phobic and any change in routine knocks them back. Im sure that anxiety can cause physical illness as can stress - im sure you know what that is like. With regards to CAMHS, i did find them helpful although my son will say otherwise, as i have spent many many hours attending appointments when he refused if only to cry and talk about his problems. With regards to CBT i personally feel that it is the best thing that we did for my son - Linda on here recommended it to us and i will always be thankful for her input. My son will never go back to school, and we knew that 18 months ago, and i have since never mentioned it or asked him to go as i knew i would be wasting my breath. Your daughter will have to do it all in her own time, when she feels ready to move forward, this was some advise i found very hard to understand but it worked for us. My son should have gone into school yesterday for an exam but in the end at the school door just couldn't go in - but he tried. What does the school say ? and have you contacted your GP ? We have been very fortunate that school now ( with new mentor ) have been exceptionally helpful but it was a different story in the early days. My son also thinks no one likes him, his hair is wrong, the list goes on and on, but anxiety is a mental health illness and our children can't help it. You are doing your very best for her and she will appreciate it even though she may not always show it, and you are a wonderful mother in difficult situation.

Please please keep a diary of events, meeting etc it will help if you every need to refer to it later.

Please stay in touch, and take care of yourself too.

PS homework is a different issue, we have been through the not doing any and argusing to sitting all day working, it all depends on how they feel.

Lots of love Sarah xx

Hi Sarah

Thanks for your kind words and for your helpful tips. It's just so nice to talk to other people who understand. I will start taking a log and also read the book you recommended. The school seem quite understanding and I've had a few meetings with them but on the other hand my daughter tells me that the teachers seem to particularly pick on her and she does seem to get detention for not doing homework etc. when she does go in which is not helpful. It's a difficult situation as the school tell me that K seems quite happy and sociable at school when she goes yet when she comes home she gives me a different story. I think she probably smiles on the outside, keeps it all bottled up and this is why she ends up with health problems.
Anyway thanks again for your support.
Paula

Hi Paula,
Does your daughter see a medical paediatrician regarding her colonic inertia and what medication has she been put on for that? My son started with irritable bowel symptoms from he was 11 and these have continued throughout the past 4 years. This was then combined with the panic attacks to the point of not being able to leave the house never mind getting past school gates. Camhs have been working with him with coping strategies and I have seen the small steps of improvement in him . Be patient, it is a long road you're on but we are all walking it with you .
take care,
love Lindy x

Paula - schools always say they are fine when they are there - but our children can't express their true feelings infront of their peers so i would take that with a pinch of salt.

keep up the good work

lots of love Sar xx

hi Paula,

I am glad you found us. The group on here are so helpful - they saved me from sliding down a slippery slope or falling off the rollercoaster ride.
Yes I would recommend CBT. But the child does have to be able to take it on board - and so want to get better. That is the only catch really with younger people trying to work with it. It has helped my son but he has yet to work properly with it as they said he wasn't quite ready to want to take it on board. What it did help too was how I dealt with him and what kind of conversations I was able to have if the anxiety set in (or at least after the panic attack/meltdown stage).

I was also told my son was fine at school but like your daughter, when he came home - he was so angry and frustrated and upset. It would take 1-2 hours for him to calm down. He told me he has to bottle it in.
He also goes through stages of thinking no one likes him. And his hair....constant issue. Hates his hair sometimes - refuses to get it cut - then when we finally make it to a hairdressers - only had a tiny amount off!! Seems he likes to hid behind it.
Interestingly now that he has started high school he seems proud of his uniform (I thought he'd hate it). So who knows - they just don't know what to do or where to turn when they feel so anxious.

If your daughter has colonic inertia then it is not surprising she feels pretty bad about being at school. Is she on medication for this? Are there side effects that might also make her feel unsure about being at school all day? My son doesn't have problems now but was unable to go to toilet when his SR first started. It seemed the anxiety caused this.
Now he doesn't eat enough - so we are having problems with not enough minerals and vitamins etc!! And he is low in iron. It is a catch 22 situation. Getting the right medical advice can make a difference though.

Can you afford a private psychologist, rather than go through camhs? Then again - it is hard for our kids to see the value of working with a psychologist - so they sometimes don't like any of them! My son, however, did warm to the psychiatrist - and so I can see that their personality does have a big impact on how much they get out of a session. Talking about why they are anxious doesn't really help, which is why CBT is important to get those negative thoughts changed.
Let us know how things go and hopefully you can keep pushing the school to give you more support. The homework situation is something that they should be talking to the teachers about and making an exception.
Take care
Linda xx
PS SOrry about such a long posting!!

Hi all

Thanks for all the replies. I really appreciate them. We do have a consultant for Kiera's colonic inertia who is lovely and very supportive. It was through him that we got referred to CAMHs as he is sure that a lot of the problem is caused by stress.She is on lots of medication and generally the condition should be under control and usually school holidays and weekends she is fine and can go out and about without any problems. So for example, at the weekend she was fine and went out in the snow for hours at a time. Last night at about 5pm the worry about school started to build. Lots of crying, hysteria and so she spent most of the night on and off the toilet and today looks completely terrible and ill and is at home in bed. If the nerves don't give her stomach problems then she will get a migraine. I'm beginning to come round to the fact that we may have to home school her or she will be ill for the next 3 1/2 years. Wondered if any of you could give me your experiences of homeschooling, how supportive LEA's are etc.

Thanks

Hi Paula,

If it helps - my son was on the toilet at 11pm last night and then this morning he took so long going back and forth that we were nearly late. He has always complained of stomach problems and I have never been able to determine if it is the anxiety/stress or a diet/allergy but like you - it seems to improve on weekends and holidays.
My son also get migraines but rarely. I get them really bad - so I feel very very sorry for anyone who gets one. They can be so debilitating.
If you can home school - it sounds like it might be the best option in the circumstances. Your daughters mental and physical health are of upmost importance.

I have just stumbled across this site out of sheer desperation. My son who is now 13 has been out of the education system for almost three years. He was born with half a heart and has had several lots of closed and open heart surgery. He also is an insulin dependent diabetic that is not very well controlled. He also has Tourettes, OCD, a psychosocial adversity disorder and a massive school phobia. He is being seen by the gastro clinic again for chronic stomach cramps and chronic diarrhoea and has had previous stomach ulcers. He suffers terribly from nerves, stress and an anxiety disorder for which he was taking risperidone. The side effects were outweighing the benefits so it was stopped a while ago and as he is still adamant he can't go to school, they are reluctant to start him off on other medication. He was being bullied by the teachers at the first secondary school he went to as they were watching him self harm at lunchtime, didn't phone to let me know, and kept him there until five, still without letting me know when I was frantic at work and pulling my hair out, and without checking his blood levels, and when he arrived home he was incoherent and too low for a reading. They refused to take responsibility for it and we changed schools. By this time his school phobia was out of control and even though his new secondary school is excellent he still can't face going and he will 'be there' a year in March. I lost my job as I had nobody else to care for him and am now struggling in lots of ways. He has been having CBT for almost a year and under CAMHS for two years this time. His psychiatrist is brilliant but as he is not cooperating anymore we are reduced to what we are calling 'remote psychotherapy' where I am doing it at home with daily contact with CAMHS. He doesn't understand what he has done wrong in his life to have so many life threatening diseases and it hasn't helped that he now knows that the children that survive the heart surgeries for his condition will go on to need a transplanted heart. He has no friends, wants no friends, it cost me a fortune to send him to different activities ie. drama groups, guitar lessons etc. and even though he went to the first couple he refused to carry on. He wasn't interacting with the other children and thinks that everybody hates him. He lashes out and takes his frustrations out on me and just doesn't want the life that he has anymore. His psychiatrist is talking about referring him to one of the pupil referral units but if he won't go to a school that has been very obliging and even managed to finally get him a statement, then what will his chances be of going somewhere else. He doesn't do change very well, has no confidence or self esteem and thinks his life is pointless. I'm confused too, frustrated, angry, feel let down and abandoned and am starting to lose hope. If only there was a miracle cure! I'd give anything for a normal life with routine moody teenagers. If anybody can offer any advice....or at least tell me everything will be alright in the end.

Hi Christina,

My heart goes out to you. I felt so sad reading your story and what you have to cope with as well as the School Refusal anxiety.
My first impression with all of this is - school education isn't everything. I know you might not be having 'schooling' of any sort but perhaps that is the avenue you might need to pursue? What about homeschooling?

It sounds like your son needs to rebuild his self esteem first - feel he is ok despite his illness and that might take time but will be essential for him moving forward. Somehow - I don't know how - he needs to accept and appreciate who he is now. Is there any diabetes groups that have a children's support network? Does the hospital he attends for the heart surgery have any support for children in his position? He probably needs to meet with others who are suffering and realise he is not alone. Only then would I try tackling the School Refusal bit and taking those small steps forward. ANd it might be that he feels too vulnerable in a school situation with his health - so if there is a group of homeschoolers in your area - it might be worth getting in touch with them. There is a UK on-line connection that was mentioned in this forum a little while back - but there would also be local ones.

Sorry I don't have a miracle answer - but I guess from an outsider looking in - I'd put the health connection with other children suffering first and then look at education again.
You are doing all you an as a parent - you have been there for your son throughout all of this - so don't ever feel guilty that he is not getting a school education the way others kids might.

Take care and keep posting - we are here to listen and offer any advice we can think of.
Linda xx
PS It will get better - but not on a straight road....not all kids can follow the path that our society sets out for them.

Hi Christina - this is one of the saddest stories i have read on here and it has really upset me. As Linda says we have no magic answers but i promise it will get better with regards to SR - he may go back to school he may not but that doesn't matter it really doesn't, My son hasn't really attended senior school much at all - now 16, and i too thought that it would never get better, but it has and does each day. We still have minor set backs but on the whole we are getting there and you will too. Your son has no control over his illness but he can control school and i think he feels he has to have some control in his life and i can see exactly where he is coming from, but i know that doesn't help you but all you can do is support and love your son as you are obvioulsy doing, i promise it will get better and we will all do as much as we can to help.

Sar xx

hi again Christina,

You might have already looked at these options but here are a couple of sites in the UK that might help if you ever considered home schooling.
Or on the other hand are you able to get in tutors for your son and then slowly try and get him back into the school situation? It's a hard one for you - but there will be something turn up - and things will get better as your son takes small steps.
Linda

What is required:
http://www.direct.gov.uk/en/parents/schoolslearninganddevelopment/choosingaschool/dg_4016124

Starting point?
http://www.myhomeschoolingweb.com/organizations/united-kingdom/

Just wanted to say that there's not much point in trying to get her to do school work at home. I know if you're not at school you've got to catch up somehow but it's not the way. If she can't go to school then the school work will just bring on similar anxieties as all it does is remind her of school and how far behind she is and how she should really be doing it in a class with all her peers etc etc. Also if she struggles with it it'll just stress her out about how far behind she is and whether she's stupid and she really needs to go back but she can't etc. I know cos I've had all those emotions when faced with school work at home. Also if school is the problem, home has got to be the safe place, so why bring the problem home?
That's probably no help at all because I didn't suggest an alternative but I honestly don't have an alternative, I just don't think doing school work at home is as easily done as said.
Amy x

Thank you SO MUCH for all the helpful comments - it's definitely made me feel much less lonely. I am already in contact with diabetes uk and involved with another group called Little Hearts Matter that helps children with single ventricular heart diseases. Declan won't interact with any of them. Little Hearts Matter have a youth forum online and I can't even get him to look at it. I try to take to him to various get together sessions for both when they are on in our area but he just won't go. He said he doesn't want friends and just wants to be left alone. He is desperately unhappy and really does want friends and a social life but is convinced he won't ever get them. I have two older daughters, one who is 24 and getting married next year, and a soon to be 18 year old who is in the throws of loves young dream with her first boyfriend. The 24 year old moved up North last year and the 18 year old's boyfriend gets along really well with Declan and even though they talk to him and include him sometimes, it doesn't have enough of an impact to make him want to help himself. The CBT didn't work for Declan purely because he lacks any motivation. He gets very angry very quickly (definitely age related too)and can't get beyond it. To be honest, I'm frightened for his future and worried about getting into trouble myself for his not attendance in school. Has anybody had any trouble from the educational services abotu non attendance?

Forgot to say thank you Linda for the web links. I'm just going to have a look now!

Christina may of us have been threatened with the law but what good would it do ? In my case as long as i was showing that i was doing my best and with the help of CAMHS then we did avoid it but that's not much help to you. Please keep a diary of everything to prove to the authorities just what you are doing to try and help. Also because of his health problems that should be taken into consideration i don't think a judge in the land would prosecute you so i would try and out that to the back of your mind - easier said than done i know. I was torn between supporting my son and the threat of the authorities but it was all ok for us in the end.

Hope this helps

Sarah xx

Thanks Sarah, that has helped put my mind at rest. I had to stop work to accommodate him as I was looking after my mother at the same time following a bodged hip replacement. When he got into the second school I took him in wearing a tracksuit over his pjamas because he wouldn't get dressed and have sat in reception for hours upon hours while he was there, instigated lots of meetings to obtain their support, help and advice and attended many others that I have been called to. The diabetic doctors and nurses, the most recent CAMHS team of two years, and the school will all back me up in my efforts to get him into school and that has kept me sane so far. The frustration gets overwhelming sometimes because I know that if he would just try he would be able to get the life he doesn't believe he will ever have. I do understand how he feels and need to remember that when I'm at my wits end, and after looking at some of the home schooling websites (thanks again Linda) I'm going to speak to the psychiatrist when she calls today about this as an option. It's what Declan has been asking for for the last two years or more so maybe if I tell him I'll consider it as long as he makes an effort to find friends elsewhere. His social interaction skills are non existent and this is the only reason I was pushing so hard for him to go to school. I'm not worried about the academic side but just in his ability to talk to others the same age and find outside interests.

I am so grateful for all the support here, I can't tell you!

Many years ago, when I was in the army, we were called out early in the morning to search for a bomb, which we found packed inside a milk churn under a culvert.
We made the area secure, and chatted to the locals whilst keeping them away from the site.
Along came the TV cameras and 'Army finds bomb' made the early evening news.
I was highly embarrassed to see myself with my pyjamas sticking out from the bottom of my trousers!
So, pyjamas to school? No probs!
Simon

Oh Simon do post the photo's lol. Christina with the support of the nurses and CAMHS you have absolutley nothing to worry about i promise. Have you contacted Parent Partnership - i found them very helpful with both school issues and home ed.

Does your son interact on games such as x box or play station? When M was aggrophobic for months he did still interact on his x box and that helped no end.

Hope this helps

Sarah xx