My son starting getting anxiety at school two and half years ago, which started in assembly. He was 12 at the time and started mentioning these feelings he got in assembly, it was a teacher that took him out when he thought he was going to faint said it sounded like anxiety attacks. Everything escalated from there, he stopped going in assembly for the next two years. In general going to school became harder over the course of time until last October he got to the stage he couldn't get out of the house in the morning. We had been through a hard time before the summer break, not being able to get him out of the car at school, having teachers come to the car to coaxe him out. At this point the year head suggested a Cahmms referral (last June) after she'd seen the severity of his anxiety. I was a bit wary at first but agreed. I waited through the summer hoildays to hear from them, nothing. September came, back to school to start GCSE year. Forgot to mention he did have counselling in school when he first started suffering which seemed to help but as he got into teens and anxiety overtook again he had a second session but he didn't get on with it, said the lady irritated him. Also I think by this time he didn't want to appear he had a problem, he had a lot of lad friends in school. Being called out early from class bought attention to him he didn't want. My son has always enjoyed going to school from a little boy and was popular.

Anyway back to last year, getting him back in September didn't go very well, he tried really hard, but his anxiety was getting worse which came to a head middle of October, I had an operation on my shoulder. I couldn't drive him to school, (his Dad is out to work before 7am every day). When he started senior school he did use the bus but started getting bullied at the bus stop by a very nasty boy (which was dealt with by school) but my son would not use the bus again, I'd drop him to school and he'd walk back while I was working. So after my operation his anxiety got so bad he couldn't get out of the door, he was physically overwhelmed with anxiety. There was a lot of stress, education welfare threatening courts, school putting pressure on. I walked with my son to a meeting at school with my arm in a sling a week after my op to try arrange part time classes, got within 5 minutes of school, he panicked turned round went home. The year head came to our house to talk to my son, arranged he went in next day at a later time to avoid crowds of kids. He went and I sat with my heart in my mouth watching to see if he came back, just when I relaxed he knocked at the door, he got to the school gates couldn't go in, started crying spent the next few hours walking round because he thought I'd be angry he didn't go. I wasn't angry just upset to see my child in this state. At this point school realised how bad his anxiety was, started sending work home. Meanwhile Camhs didn't take my son's case on, I later found out School had not backed him enough. The second referral was done by my doctors, I'd rang them after having bought my son home as he couldn't get out the car (September), I can't even remember the conversation, I was desperate for help. We saw a guy from Camhs in December, my son was put on a waiting list. Meanwhile he tried to do his work at home all the time worrying about not being at school. Life in our house was very fraught, we had arguments, he was very angry, he didn't sleep at night with worrying. I forgot to say I was off work for six and half months after my operation so have took the brunt of all this stress.

After Christmas my eldest son took him to school at night to sit outside and get the feel for trying to go back. He came out of work one morning to take him to school, heart in my mouth again, he came back. My eldest son was almost in tears said he'd never seen his brother in such a state. That was the last time we tried to get him to School. Over the next few months I was very stressed, I'd wake up in the night panicking about the situation, I was on the internet in the middle of the night trying to find sites with people going through this, found a few but it's took me all this time to find this site and have the courage to tell my story. I have felt very alone.

My son is now getting some home tutoring through the local special school which deals with children that has been expelled and children with problems. Getting that took me months to fight for. Camhs said they really want him back in school at a meeting in February and home tutoring was not appropriate (as did the year head), who also told me a number of times that as a year head she has targets to meet and if my son was not in school getting his grades, it would look bad on her, I told her my main concern was my son not her targets. My partner and I did get in touch with another local school with regards to moving him but decided against it as they said his anxiety was probably too bad to move schools.

After hitting a brick wall with Cahms and school I contacted Parent Partnership who said my son was entitled to tutoring The tutoring started in May. He comes down to the the tutor, though he finds it stressful. The tutor is trying to get the school to liaise with her to work out some basic GCSE's.

It's hard work as all this anxiety has affected my son in different ways, because he isn't at School he lost touch with his friends. He spends all his time in his room. He has a fear of going outside, he goes to the local shop at night when its quite. He has had one friend from when he was young coming round until recently, he now goes to the same school. I recently found out my son told him not to come anymore, said he is childish, acts stupid all the time. He is a bit younger, but this worries me as my son has no other friends. Though I think he plays online with one from school.

I am now waiting for Cahms to get in touch about CBT therapy. My son had an appointment last month which initially was going to be at our house, to introduce the therapist to my son, but changed at the last minute to he had to be taken to the office. On the day he had a massive panic attack and couldn't get out the door to the car!

Every day is a strain and I feel like I'm walking under a black cloud, I'm trying not to stress too much now though, you eventually have to take a step back and go with the flow to keep your own sanity. Going back to work helped, takes my mind off things. I just want to see my son happy again and come out of the other side of this.

Hi Tracy

I am so sorry to hear all you have been through and it brought back so many memories of my own journey with my son.
I am so glad you found us on here. You are not alone, those who come on the forum have been a great support to me in the past when I didn't know which way to turn.
It seems you have done all the right things, with Cahms and the tutoring and parent partnership etc.
I can agree that changing schools is not always an answer as they anxeity travels with them.

My son went through a stage of not being able to get out of the house and refused to see the psychologist. Back then I used to have to just get him to aim to just get to the letterbox and then to get into the car and go for drives and to sit in the car if I went to the shops. That way he still got out of the house, even if protected by the car. He would then ask to go for drives at night, and even now he like going for drives.
Sometime this seemed to allow him to open up and talk a bit too.
It is all a little bit of a blur now, but we came out of it, so your son will too.

CBT is good and if your son is willing to give it a try might certainly help. Have you also thought of medication? I was dead against it originally but then realised that my son needed to be in a better place in his mind before he could try and move forward.
Talk to your doctor. IT can take the trials of more then one before th right medication is found. After his second medication, My son has now re connected with is old friends from school and even stayed overnight at one friend's house, something that I never imagined he'd have done.

So hang in there. Small steps are all good steps. Embrace your son where he is now, education does not have to be in a straight line. He must be feeling very bewildered about what is happening to him. If you can find just small things he can do at home to help boost his self esteem. Is there something he is good at? Does he follow a sport? Can you involve him in things that don't remind him of school and where he doesn't feel he has failed? The guilt was eating my son up at one stage.
Will he interact with extended family or friends? If he won't visit them, can they come to visit you? Just to keep some interaction going. I used to get my mum to drop in once a week so my son had someone other than me. I had other family also come by but had to be careful how many or else he'd just hide in his room. Now he can socialse fine with family and perhaps has always been better at socialsing more with adults than his peers.

I can understand your son not wanting a friend around as I think it makes them on edge as they know they have this huge blockage of fear going on inside so they cannot relax and so perhaps what other kids say and do seems trivial in comparison. I think it gets better as they all mature.
My son also had a fear, and your son probably has it too, that if he was away from school, then his peers would ask why, and there was no way he wanted to tell them the truth. So going back after having been absent became more and more difficult.

Have you been able to pin point anything that may have led to the anxiety occurring when it did? I still wonder about my son and what may have triggered it. So many kids are suffeing from this these days, it is just so hard to know if it is genetic or environmental or both, isn't it. Sometime bullying will trigger it. But my son was never bullied. But perhaps your son had this beforehand?

Remember, you are a good mum, and are doing all you can. do some nice things just for you so that it doesn't keep dragging you down. If possible talk to the doctor about coping with the stress levels and have some counselling yourself. Sometimes when my son refused to go to the counselling, I'd go instead and found it helpful.

Hang in there and see what cahms can come up with. Tutoring might be the transition your son needs before being able to face any group setting. Don't let anyone push your son too soon to go into a school setting. It takes time to build the self esteem back.
Take care
Linda

Hi Linda, I sent a reply through my mobile a few days ago to thank you for responding to my post but it doesn't seemed to have worked. I felt a sense of relief that someone knows what I have been going through.
We have had a stressful week, a new tutor came on Wednesday to start GCSE English Language. My son was anxious and wouldn't come downstairs, I had to take her to his bedroom to introduce her (which I did with the maths tutor). It made me feel awful doing that. Hopefully he'll be okay when she comes next week now he's met her.
I spoke to my son about coming to the doctors to tell them how he's feeling to maybe talk about medication. He says he constantly feels worried and anxious and would come with me. Would the doctors prescribe something or does it have to be a Cahms specialist?
It sounds silly but even getting his hair cut is a major feat, he's desperate but as yet hasn't been able to go to the barbers because of his anxiety. We keep trying. Last time he went was stressful. He said he cannot do anything without feeling stressed. Even if I get him in the car for a drive (which isn't often) you can see he isn't relaxed, wants to get back to his bedroom. Sometimes his older brother takes him a for a Mc'donalds drive through or to his flat, not often though as he works full time.
I had a voicemail from Cahms last week while at work, to update me on my son and CBT (he didn't make the appintment last month as he panicked and couldn't leave the house to get there), this week the guy from Cahms was meant to get back to me and hasn't. Do I have to keep chasing them to get the help my son needs, which I have done for months, especially to get the tutoring in place.

Hi Tracy

The doctor can prescribe medication. Even though I am not in the UK, I have been on the forum for 7 years...so know the UK system as good or bett than my own!! Sometime the doctor might ask that your son is having treatment from a psychologist as well as taking the medication and in your case you are, as you have mentioned cahms. This is wise, as it does take more than just the medication for long term help. Explain to your doctor that your son cannot access the help and so medication may allow him to take those steps needed to do CBT.
Somtimes it takes the trial of more than one medication to find the one that works, The first medication my son was on did not work but this one does. It is called zoloft, component being setraline. This might not be the one for your son but you could mention it to the doctor.

I had to smile in sympathy when you mentioned the haircut. We went through exactly the same thing...and my son's hair just grew and grew! Sometimes he let me trim it but basicially he refused to go anywhere near a hairdresser due to his anxiety.
You might thefore be surprised to know that my son now gets his hair cut every six weeks! After taking this medication and feeling better about himself, he looked on line for a hair style and found an up market hairdressers several miles away. So we went, he was pamperd by a lovely young girl. When she left I thought he'd go back to long hair, but no, he still goes and has a trendy young man.
So there is lots of hope for your son, when he feels better about himself. But do try somewhere a long way from home.

Remember all small steps are good, so even small drives and visits to your other som's flat is good. Never give up. I know how hard it is. And the tutor thing was a nightmare for us too. My son locked himself in his room at one point and in the end we had to cancel the maths tutor. But after the medication, he was able to meet with a new tutor, even though he said he hated it, he did put up with it.

Do you think your son could be motivated to do an on line school course as an interim support? There have been some mentioned on this forum, perhaps you can do a search. They might be expensive, not sure.
My son was able to do an on line course (in Australia we have an education department run on line schooling) and then after taking the medication was able to go to a college to do his final two years with people whose ages range from 16-40! People who for whatever reason, including anxiety, dropped out of school. We arn't out of the woods yet, but he is so much more relaxed and the reconnecting with old friends has been unbelievable.

Does your son connect with others via on line games? This at least will keep him connected as they often chat as well.

It is just so painful, isn't it, to watch our children go through this. Seeing other teenagers getting on with their lives can be frustrating to say the least. But our kids will get there in the end, they just need lots of support, love and understanding because they cannot help what they are experiencing. And it is so much harder for them, but they will learn life skills that most kids don't learn until much later.
Help does seem hard to get, and you are not alone with that. We struggled to find our own support. Unfortunatly just when you feel totally exhausted, you have to look for the support. Hang in there, CAHMS are going to have to come up with a way to help even if your son cannot face them. They should be aware of this, or you can make sure they are aware.
Not sure if I have been of much help, but do ask the doctor about medication.
Take care. Let us know how it goes.
Linda

Hi again Tracy

Just a quick note. Hows things? I hope yiu have done something just for you this weekend 😊
The forum seems very quiet lately for some reason. If you find another site (Facebook perhaps?) that everyone is gping too instead (or perhaps people are finding more help at the local level?) let me know out of interest. I oversee the forum these days but it was set up by Simon all those years ago and he still runs the site and gives lots of helpful advice. it was my saviour with lots of regular discussion from lote of people. Was this site hard to find when you were searching for help?
Hope to help support you as best I can. It's a bumpy road, remember you are not alone. Thinking of you.
Take care
Linda xx

Hi Linda,

We have a few updates and a little bit of progress. Last month shortly before end of term the Cahms worker came to the house to see my son, this time he came down from his bedroom to meet him for the first time and chatted with him. The worker explained about CBT therapy which my son didn't manage to get to last time because he froze with anxiety and couldn't get out of the house. Anyway we had the appointment yesterday and managed to get to the appointment which was real progress. The therapist asked him lots of questions about his anxiety and decided that group CBT would suit him but soon realised that my son has been virtually a recluse since last October and to walk into a room of 6-7 young people would bring on massive anxiety. I do actually wonder about these Cahms workers, whenever we meet someone new it's like they don't really know his case and what he's been going through. When I put her in the picture and explained that my son's anxiety hit a peak over a year ago that's why he hasn't been in School since last October she seemed shocked. She went on to say that his is a severe case asked if he'd been offered medication, I'd suggested this earlier in the year and was told it wasn't appropriate by the first worker who assessed him. So she suggested he takes Fluorextine so he is able to move forward with CBT without the overwhelming feelings of panic. We've been given a leaflet to read to decide and go back to see her next week. I've got mixed feelings, I think they'll help but when she they are a form of Prozac I feel upset that my !5 year child needs to take these at his young age. I remember you said your son took something, do you think they will help?

Oh, my son finally had his hair cut last month!! It took weeks for him to make it to the barbers but it was so long he couldn't bear it. We had to drive past to make sure it was empty, we went first thing in the morning. The lady was on that day and it was a bit uncomfortable, she asked if I'd had him a grow bag!! My son told her what he wanted doing even though he was quite stressed, as I looked out of the window she went on to cut his hair shorter than he'd asked, he was gutted when he came out. He's over it now I just told him to go on a different day next time when the guys are there.

Hi Tracy

Love your little faces at the bottom of the post....says it all!
So pleased to hear of those small but actually big steps! Getting the hair cut...I remember our time too. I think any cut scares them and will never be right but now my son goes to an upmarket place he goes regular and I am willing to pay the higher price.
We were recommended group therapy at one point and whilst I can see its benefits, if the kids are as anxious as ours...how on eaerth do they ever make it! Does the convenor sit there twidling their thumbs waiting for at least ine to turn up or are these not as bad as our kids. I think the latter. My son still would never join any group therapy. It takes smaller steps than that for most.

Originally I felt like you did a about the medication. I hated the idea of my son being dependent on a pill and had visions of brain changes etc. But then I talked to people on this forum whose teenagers were on medication and realised that if my son was to ever take on CBT or attempt to function, he needed a kick start, and the medication is the only link to helping that.

The medication you mention was the one used by one of the universities here who were doing research into school refusal comparing medication and CBT or both. They found a much greater improvement with those taking medication and learning CBT. To be part of the program they had to have been absent from school for at least 3 months. We didn't qualify.
Others on here also took the same medication you mention.

My son's psychiatrist did not put my son on that as he was only 13 at the time. She was not keen on that medicstion until he was 15. But what she put him on, the name of which escapes me now, did not work, so we went through another two years of such stress and pain and heartache, She kept saying he'd be worse off it, but I am not convinced. We swapped to seeing our doctor.
He said that sometimes it takes the trial of a few different medications to find one that works for the individual. He put my son on Zoloft/Sertraline and after about 6 weeks (all medication takes awhile to kick in) he was a changed boy. He wanted to go to do his final years of schooling at a type of college where people like him or those who dropped out of school early can do their final years. He set up Facebook and reconnecfed with friends he had avoided snd had not seen for two years. He met up with these friends in person. He was able to travel on the train to his college (from being housebound, the step was enormous). So was it worth trying this medication?...a big yes! We are not out of the wilderness yet as he has sleep issues, some attendance issues but much improved

Our doctor explained to my son that he might need this at this stage of his life and may need it long term or might not and recommend he also learn strategies for coping. My son is challenging himself in a way he never did before, so I think he is. finding some of his own strategies. My son also wanted to try new medication. A year ago if we travelled into the city centre, he would panic and we'd have to go home. Now two of his classes are in the city centre and he travels by train...goes throught the crowds and even checks out the shops afterwards! He is braver than I was at 16! But he still has a perfctionist attitude which holds him back in his work, still over washes his hands and focuses in cleanliness but is also a very typical teenager and lazy and doesn't do what you ask of him and would rather play computer games than do homework. So fairly normal! He still avoids some things but has taken big steps forward. He also has been so much healtheir physically.
So if I was you, I'd give it a go. They suffer too much, so if something can help, even if we feel bad about what medication may or may not do long term we can at least offer them a life where they are not living in constant fear and give them back someof their teenage years.
LEt me know what you decide. Does your son want to try medication?
Linda

I'm sat here reading this thinking it could all be about my son! Can't do full reply as waiting for school to visit as my little darling won't go in again!
So glad I have found people who understand, I have been doing thus for 2 years and physically and mentally exhausted now will write more later wish me luck!

Welcome to our little group! Sorry to hear how exhausted you are - I know exactly how you feel. Have you or your son had any support in the last two years? How did the school visit go? Let us know how things are. You are not alone.
Take care,
Linda

Thanks Linda
I always feel better after a visit from our lovely support worker, he says the right things but actually is at a loss for what to do as we are. It was interesting to read about the medication, mine has been diagnosed with acute anxiety and depression no diagnosis of ASD but I think he has traits. After 6 months of being in his room not leaving the house etc he was started on fluoxetine he seemed to get better and we re started school slowly and was back to full time from Easter to June, then in May we stopped the tablets as i feel they were making him high - school were struggling with his behaviour as he was always excitable and mad!!! And home is a nightmare as he never stops. Therefore we stopped them and he crashed again so no school now since end of June we are back n fluoxetine since July but he still remains unable to go to school,
He is just such hard work and we don't seem to be able to balance the low mood panic attacks with the hyper can't control him - has anyone else experienced this?
Mo

Hi Mo

Do you mean the highs and lows are when now back on medication or when off medication?
If on the medication....I'd be trying something else. My son is on his second medication, zoloft or sertraline and it has allowed him to gain some life back. He still has some social anxiety but can now travel on public transport by himself, go to shops by himself and mostly attend school/college. He left the school system two years ago as he was unable to break through the barrier to attend. Schools are just the wrong environment for many kids but especially those suffering anxiety or depression.

I guess I'd be looking at a change of medication and then any cognitive behaviour therapy, either through a support worker/psychologist or via yourself if you can read up as much about it as possible.
Your poor son must be so overwhelmed by his feelings at the moment and feeling very isoloated. Assure him you will do all you can to find him the support he needs and he will get better. Tell him its pretty tough being dished out this anxiety but if he can learn the skills to manage it, he will learn valuable life skills that other kids his age will take a life time to learn.

What does the doctor say?
Thinking of you and hoping you are able to do some things just for yourself to recharge your batteries.
Linda

Hi Linda and Mo,

I've just seen your post Mo about your son, how old is he? I know how you feel, it is very stressful seeing your child going through anxiety and not being able to go to school. This site has really helped me feel like I'm not alone, feeling supported by parents who have experienced the same circumstances. We have been going through this since he was 12, he is now 15. Earlier in the year I was so stressed I couldn't sleep and was having a cry in private most days. I had to fight with the school for tutors to come to teach my son, all they wanted was him back in school, which was impossible with my son virtually housebound. It was a massive battle. Now we are waiting for consultant appointment to see if my son has ADHD ADD ASD. After researching myself on the internet I actually think he has ADHD which has gone undiagnosed since he started school at 5. My son has already researched how he felt when at school which lead to his massive anxietys and says he ticks all th boxes for ADHD. He'd found this information months ago but didn't tell me as he thought I'd say he was being silly!!

My son is taking fluoxetine (prozac), he is on day 7 of his medication. I was extremely wary about him taking it, he seems ok so far, suffering a bit of insomnia at night but he has to go back to the cbt therapist next friday to monitor how the medicine is affecting him.

My son really wants the medication to work and calm his anxiety as he wants to move on with his life. The schools went back yesterday, my son's tutors start coming to the house next week.

My thoughts are with you mo, I hope you can find out why your son is so anxious at school. I'm just interested to know if you are in England, a lot of posts are from parents in Australia.

Hi Tracy

I really hope the medication starts to help your son. You've been through a tough time. Even if it allows him to get out of the house it's a start.

Actually most posts on this site are from the UK, apart from me, but just recently there was another from Australia and there were a couple in the past. I oversee the site for Simon who set up the site in the UK (as a life saver for many) as I have now been on here the longest. There have been many success stories...so always hope.

From what I gather, some like yourself manage to finally access tutors but there are still many in the UK who seem never to be offered this or when they ask, like you, are told just to get their child back to school.
How then do you access tutors to come to your home in the UK? What steps do you have to go through to get this help. Others might be interested to know.

Anyway...let us know how things go. Did they say it might take a few weeks for the medication to tatke full effect?
Take care
Linda

Hi Linda,

The CBT therapist told us that the medication will take a couple of weeks to start working, my son has taken it one week, so early days.

Forgot to mention this on my last post, a letter came for my son the other day from the council, I opened it and read it. He is being invited to a careers and skills festival in a few weeks time to discuss college, apprenticeships etc. I felt stressed by it as how is he going to access that when he hasn't been going to school or out of the house!? I've not shown him the letter yet. I shall discuss it with the tutor on Monday.

On to the subject of how to access tutors coming to the home. I was given information at a meeting in school by the year head and the about Derby SEND Information Advice and Support Service. Anyone wanting to access this should type in SENDIASS on the internet to access their local support group. I rang them and explained the situation, a lovely lady took my details, it was late on a Friday when I called, she promised me a return call next week from the appropriate person. Tuesday morning I received a call and was told my son was very much entitled to home tutoring, its called medical tutoring. Children in hospital receive it, but anxiety is a medical condition as well, which is what I was fighting with the school to understand. I was told the school has to fill a SPP (school placement panel) form to the local special needs school Kingsmead. I had to get a letter from my GP to support the application, which I did. Though the worker from Cahms was insisting a Consultant had to provide the letter. My son hadn't seen a consultant and an appointment takes months to access, which we are now waiting for all these months later. All this was back in February and eventually my son started home tutoring in early May, 6 months after he wasn't able to go to school. As you can see I had to keep fighting to get what my son is entitled to, which is very wrong. The help should be there straight away.

I have to say that the year head wasn't very supportive in helping me get the tuition, she just wanted my son in school so she could hit her targets with her manager. If my son wasn't attending school and achieving grades it would look bad on her, which she told me in a phone conversation. To which I told her my son was more important than her looking bad because I couldn't get him to school.

I hope the information I've provided helps other parents to access the services their child needs

Hi Tracey
Yup I'm uk, mine is also on Prozac we have been on it about a year now we started on 20mgs but although it did perk him up and got him out of his room etc had did then begin to get hyper with no boundaries, he was going back to school at this point but they couldn't cope with him as he was always hyper we are now on 10 mgs.
Anyone any luck with sleeping pills etc? Mine finds it incredibly dofficult to settle when it goes quiet at night had finds his anxiety overwhelming, we have been on phenerghan 25mgs which makes him sleep for about 18 hrs and melatonin which unusually makes him sick! Anyone used anything else?
Thanks all

Hi Mo, We are going through a really bad time at the moment, today being particularly stressful. My son went from 10mg to 20mg fluoxetine 12 days ago, this past week he has struggled to eat, whereas before he was eating like a horse. His sleep is terrible, he is up all night, which has caused him to be extremely stressed, its felt like having a baby again, I can hear him wandering the house so I'm checking to see he's OK. He has been imagining he's got all sorts wrong with him. This morning g was the worst, he had the biggest panic attack ever, thought he needed to go to hospital. Eventually managed to get him through it, but I ended up feeling worn out too. I've rang Cahms twice in past week, worried. The therapist who prescribed the medication said that if he can ride through this ,the medication will get on a level in his body and he'll start to feel, better. She hasn't mentioned giving him anything to help him sleep, just telling me to try keep him awake all day, easier said than done!!
There have been some small improvements, he has felt less stressed when out with me in the car or walking to shops, if he actually awake in day to do that!
We have an appointment with the therapist next Monday to assess how he doing & hopefully start CBT therapy soon.
I've been on Annual Leave for the last 3 weeks and this week being so bad I feel no benefit of being away from work.

Tracy, my heart goes out to you. I hope you can ride through this ok. I wonder if anyone else on here has had this happen with the increase of this medication?
My son is on Zoloft (Sertroline) and I recall that side effecte for some individuals were feeling worse before improving but this was also when first taking it. Did your son have side effects like this when he first took the medication?
What has the doctor said? How long have they said this effect might last? Can it be increased gradually rather than doubling the dose, as that is quite a big increase?

Maybe this medication is not the right one for your son, as I am sure you have been feeling today! You poor things, you must both be absolutley exhausted...and such a worry for you. I think they are reluctant to give sleeping tabs as it can be a slippery slope with them as many people become totally reliant on them. My doctor also would not prescribe anything. Do you think going for a drive with your son before bedtime might help relax him? Does he take the tablets at night or in the morning?

Your son will get through this....it will take time and so do make sure you do things for yourself as well. Let your son know that those on this forum have got through some pretty bad patches too and that he is not alone.
Hang in there or maybe go back to old dosage and consider trying another medication?
Take care Tracy and hope you and your son are feeling a whole lot better very soon, Good luck with the CBT.
Linda

Hi Tracey
I really feel for you we have been there and I can so relate to the exhaustion of no sleep. We spent nearly a year with back to front sleeping patterns.
So advice I can give you - sorry can't remember how old yours is mine is 13 and these are some things that helped.
Mines anxiety triggered when everything stopped at night so he always had light on in his room I got a red bulb it's soothing apparently and he had to have noise had preffered tv but I tried to encourage audio books - when something else was talking in his ears he couldn't have other thoughts.
I had to for my sanity wear ear plugs in the end you can't just go on and on listening out for him all night it won't help him if you are ill. I tried to make sure he had all he needed in his room so it limited the time he wandered.
I must say though our saviour was sleeping pills which he still takes when we stopped in the holidays he converted again!
Mine also has panic attacks which are scary - mine copes by chewing gum and concentrating on the chew which regulates his breathing, they do leave him physically exhausted.
I'm not sure if any of this will help but I will be thinking of you and fingers crossed for cbt we have been on waiting list for 2 years!
Oh and as Linda said try and get him to take the fluoxetine when he wakes up whenever that may be as it can cause insomnia! And yup Linda we are stuck on the sleeping pills but I guess whatever works I'm willing to do at the moment!!

Hi again Tracy and also Mo

Just reading back through your posts. Perhaps the increase was too soon, Tracy? They say it usually takes up to six weeks for the medication to take full effect, so increasing to 20mg in such a short space of time just might be too much before seeing if the 10mg has an effect. Or do doctors believe only 20mg works? Mo, you might know this?

If it is not working for either of your sons, I'd be pushing to try another medication or staying off it. And getting a second opinion from a doctor or another doctor. Here the only people who can prescribe medication are psychiatrists or doctors, is this not the case in the UK?

I guess it might be a matter of, is medication necessary because your sons are very depressed or becuase they are not attending school due to anxiety or both? If their anxiety levels before medication were not too bad, despite being housebound, then perhaps it is time they need and CBT or self esteem boosting steps via something they are still interested in? We have pressure from all directions to try and get our kids to school and be educated in the 'normal' way but for some kids this just doesn't work.
It is so hard for you both, and I'm afraid I don't have the answers. We were lucky not to have such side effects.
Take care and let us know how things go
Linda

Hi Mo,
My son also needed 'noise' to stop the over thinking, and still does. Only problem now, at 17, he walks around from room to room with podcasts of radio shows (mostly UK comedians) on his iPad. What I find I struggle with, is to get him to then face his negative thoughts. He goes into denial and tells me to stop trying to talk as he is listening!
Keeps him happy in the moment I guess but I think the constant filling of 'space' does not allow him to think of strategies to cope and so when he is again faced with a situation he feels uncomfortable with, he avoids it. He got behind in his school work recently and so didn't attend for two weeks and didn't get the work done either....

But these days the screen time is also a big contributor and I struggle with, do I switch the modem off or do I still keep tryong to get him to take control or just listen to another podcast. I have come to the conclusion he is unable to take control. My advice would be....make sure your son is not watching an iPad, phone or any device screen after 10pm or earlier. Easier at their age now to enforce this than at 17! My son avoids trying any sleep enducing steps other than listening to radio conversations.
So bed times are always falling out times for us. Hard to know what is the best method, isn't it, but your idea of wearing ear plugs is not a bad idea!!

Do take care of your own health. I can't stress this enough as I was just diagnosed with type two diabetes which came as a big shock as I am not that much overweight, but it seems that long term stress levels can contribute to diabetes, not just eating. I also have always had a good diet, my only downfall had been to reward myself with chocolate if I'd had a bad day with my son, and there were many bad days!! You know the feeling!? CUrrently on no sugar and following the Michael Mosley diet. Actually feel I have more energy than I have for a long time! I am determine to reverse this.
So do take care...and try and find ways to de stress...as we aree in for the long haul and our health needs looking after too.
Linda

Hi Linda and Mo,

On a good note today we are finally seeing some improvement, my son is back to sleeping through the night since the end of last week.

I went back to work at the weekend and he was panicky about being at home alone as his dad was working too, I got in touch with his brother to come see him in the day. He'd had such a bad panic attack last week it had left him feeling worried.

At the weekend he suddenly decided to start taking himself for a walk each night to ease feelings of stress, at first he felt like it was a stupid thing to go walking on his own, but he felt loads better when he got back.
his friend has been coming after school past few nights, they've just gone for a walk actually.

We had an appointment at Cahms yesterday morning with the CBT therapist to see how he was doing with the medication. After his bad week he convinced himself he didn't want to take the medication anymore, but talking with the therapist realised it is actually starting to help, getting out of the house, which he has found virtually impossible before, sleeping at night, feeling like a human being again (as he put it the other day).

We go back to Cahms in a couple of weeks, there is a worker who takes young people out to get them back into socialising, my son was asked if he was interested, he said yes. Also an appointment has come through to see a consultant the same day to see if there is anything underlying that caused this extreme anxiety (ADHD< ADD, ASD tests).

In a couple of days a new ICT tutor is coming to the house to set my son up on a GCSE computer course, which he is really interested in.

It seems that finally everyone is in place to help my son,