Finally Js Urgent CAMHS Appointment

[JsMum]

The Psychiatrist saw straight away Js anxiety and read reports and letters about his previous anxiety in school, home and communuty settings, he said urgent medication was essential and has prescribed Prozac and in the mean time he has precribed a very low dose of respiridol for the short term, the Psychiatrist is going to support the 52wk residential school so that J has continuity of care, education and respite so that is very positive and he has agreed J to continue on his medical note but he shared that home tuition isnt ideal really and wondered if it was best J return back to his presant school while we go throw the process of getting J in a 52wk school but he also understood that if J was refusing to go back to his present school it was very unlikey J would actually attend in that period so still meaning J still wasnt in any education so ideally we want a 52wk school placement as soon as possible and agreed that J definately has ASD needs and will see J in a few weeks time.

 

I am very nervous about the respiridol but J is suffereing without medication too.

 

It is such a hard road when children require medication to lead a normal life its so hard.

 

Anyway that was our urgent Cahms appointment.

 

JsMumx

[JeanneA]

Hi Js Mum, I am pleased for you regarding the suggestion of a 52wk residential school at last the professionals are listening heh? I think that is what is required for Glen also a residential setting, not sure if it's a school setting though, as he's nearly 17 and school hasn't worked so far for him! Anyway keep us updated with future progress hope it doesn't take too long before it's all sorted.

[Mumble]

It is such a hard road when children require medication to lead a normal life its so hard.

I guess the best way to think of it is that if J required medication for a medical condition such as diabetes, you wouldn't think twice about him having it as it would dramatically improve his quality of life. It shouldn't be any different with psychiatric medication - it's still medication for a medical condition, it's only the social stigma that makes you think twice.

[JsMum]

Hi Js Mum, I am pleased for you regarding the suggestion of a 52wk residential school at last the professionals are listening heh? I think that is what is required for Glen also a residential setting, not sure if it's a school setting though, as he's nearly 17 and school hasn't worked so far for him! Anyway keep us updated with future progress hope it doesn't take too long before it's all sorted.

 

Thanks Jeanne, I really ideally though need Social services and the Local authority to agree too, at presant each service are providing J two different provisions in different countys of the uk, then he comes home to me in between and the disruption is effecting Js anxiety, so once LEA/SS agree to a 52wk provision then we stand a better chance of succeeding with a provision that meets all of Js needs.

 

I can recommend the Brookdales for your glen they have also set up a adolcence provision too.

 

http://www.brookdalecare.co.uk/

 

I hope that your Glen also gets sorted out toox

 

JsMumx

[JsMum]

I guess the best way to think of it is that if J required medication for a medical condition such as diabetes, you wouldn't think twice about him having it as it would dramatically improve his quality of life. It shouldn't be any different with psychiatric medication - it's still medication for a medical condition, it's only the social stigma that makes you think twice.

 

 

I know I wouldnt hesitate if it was a medical condition, its just the media on Rispiridol is quite alarming and I dont want J to be one those minority that is effected by it, I think once he has taken his first dose i will relax, I was similair when J started Ritalin.

Rispiridone is for Scitzophrenia though, which J doesnt have.

 

JsMumx

[justine1]

I know I wouldnt hesitate if it was a medical condition, its just the media on Rispiridol is quite alarming and I dont want J to be one those minority that is effected by it, I think once he has taken his first dose i will relax, I was similair when J started Ritalin.

Rispiridone is for Scitzophrenia though, which J doesnt have.

 

JsMumx

We use risperidone for dementia patients who are aggressive.Its not ideal and its so tricky trying not to rely on meds,but to do simple things like washing a patient would be near impossible without these meds.

[trekster]

i reacted badly to risperidone but i hope your son is helped by this medication.

Good luck on getting the 52week placement.

[lsw146]

My DD was really helped by low dose respiridol and now using it occasionally for short periods to reduce anxiety. She says it quietens her head. Good luck

[Kathryn]

Rispiridone is for Scitzophrenia though, which J doesnt have

.

 

Don't let the fact that it's prescribed for other conditions worry you. In large doses it's an anti -psychotic but the dose that J would be on is much lower than that.

 

K x

[JeanneA]

Thanks J'sMum just looked the site up it's for adults 18 years upwards Glen is just coming up for 17. It looks like a really good place though, could be really suitable for Glen probably be hard to get funding though!

[JsMum]

Thanks J'sMum just looked the site up it's for adults 18 years upwards Glen is just coming up for 17. It looks like a really good place though, could be really suitable for Glen probably be hard to get funding though!

You would need a Social Worker to refer Glen, it may take a year for funding so this provision could be suitable for Adult services transfer, so do look into it, they have a sister group that was advertised in the Communications Magazine for adlolescence So do request those details from Brookdales.

 

JsMumx

Edited February 26, 2011 by JsMum

[MelowMeldrew]

My son sees a specialist next week, Rispiridol was prescribed 8 months ago, today it has no effect at all. My boy may well be referred to hospital for clinical examination, its a nightmare, and he is depressed, angry,not sleeping or sleeping any hours of the day, explodes, talks to mirrors walks around in the dark all night cries for no reason, is in a class virtually on his own even at special school. My first question to the specialist will be why risirpidone was prescribed ? I Know what it is supposed to address, but do NOT know what triggered the whole thing. Is it usual Drs prescribe medication to autistics without a clinical examination ?

[JsMum]

My son sees a specialist next week, Rispiridol was prescribed 8 months ago, today it has no effect at all. My boy may well be referred to hospital for clinical examination, its a nightmare, and he is depressed, angry,not sleeping or sleeping any hours of the day, explodes, talks to mirrors walks around in the dark all night cries for no reason, is in a class virtually on his own even at special school. My first question to the specialist will be why risirpidone was prescribed ? I Know what it is supposed to address, but do NOT know what triggered the whole thing. Is it usual Drs prescribe medication to autistics without a clinical examination ?

Maybe a hospital observation maybe best especially in light that your son has been on rispirdone for 8 months, I was told by Js Psych that the risperidol for J is short term while the prozac takes effect as that can take up to 6wks, it maybe that your son needs a additional medication or a new medication all together.

I would write your concerns and request it is added into his notes so there is a recent events record.

 

It definately cant carry on like this can it, Js Gp said if J continued to be this anxious over time it can lead to more serious mental health, last week his appointment with the CAHMS was a urgent psychiatrict assessment and lasted for over 1hr and half.

 

JsMumx

[JsMum]

Just want to share, J has done so well today with agreeing to finally except the new medication as he hasnt taken any since he was 8yrs old, when he took ritalin and reacted quite badly to, so for J this is a big step forward that he has taken his first dose of prozac this morning, he was very bad last night with anxiety I think he understands now that this may help, anyway I am very proud that he actually took it as before now he has been totally resistant to his previous medications.

 

JsMumx

[WillR73]

Just need to ask one question before I react - does J exhibit any sign of mental illness? As opposed to the usual stresses and strains of being an Asperger in a human world.

[MelowMeldrew]

Maybe a hospital observation maybe best especially in light that your son has been on rispirdone for 8 months, I was told by Js Psych that the risperidol for J is short term while the prozac takes effect as that can take up to 6wks, it maybe that your son needs a additional medication or a new medication all together.

I would write your concerns and request it is added into his notes so there is a recent events record.

 

It definately cant carry on like this can it, Js Gp said if J continued to be this anxious over time it can lead to more serious mental health, last week his appointment with the CAHMS was a urgent psychiatrict assessment and lasted for over 1hr and half.

 

JsMumx

 

Absolutely no doubt my son has MH issues as well now. As for short term rispiridone usage, his CAMHS Dr said 2 YEARS, it is why I pulled the plug on it. I wasn't prepared to carry on like that until an assessment was done as to WHY he needed medication. All they are doing is trying to treat an effect without knowing the cause, which I said looked irresponsible to me. His Dr also seemed confused about what MH was and what Autism was, there was an assumption they were the same thing. I said definitely they are NOT the same thing. His psyche dr has also avoided actually interviewing my son too, since the first time we tried he exploded and wasn't allowed into the building. He has avoided his responsibility as his Dr I feel, he specialist will also NOT have her own way either I intend to ask very pertinent questions. My son will just get one shot at this. If I can't get the right support, they will just leave him, and us to it. You'd get better help in in the 3rd world and with a witch Dr frankly.

Edited February 28, 2011 by MelowMeldrew

[JsMum]

Just need to ask one question before I react - does J exhibit any sign of mental illness? As opposed to the usual stresses and strains of being an Asperger in a human world.

Hi Will, J doesnt meet the criteria for Aspergers due to severe Speech and language impairments and he didnt meet the criteria for Autism as he is Intelligent and shows good Eye contact so the Social communication panel dx Features of ASD, as he has significant Social and communication impairments, literal understanding and rigid and restrictive behaviours, he has been indpendantly assessed as having ASD and severe language impairments.

 

J has comorbids and also has Anxiety and Panic atatcks, he gets very stressed very easily, social services who are at present our bain of our life, even though we have begged for help they instead threatened J face to face that Social services would have to remove him from his home if he displayed any further challenging behaviour, which has esculated his anxiety, he started to make and hide weapons around our home, of which he also did at school, every little noise and he is crashing with anxiety, even when there isnt any noise there he feels that there is someone there, the doctor has described this as paranoa and that this could be the first stages of a possible psychosis which is contributed by the fact J isnt sleeping, constantly tense and keeps a lot of his feelings bottled up until he explodes, J isnt in a good place right now as he is also been forced to return back to his BESD residential school of which I feel do not understand his ASD/Sensory needs and have not met his statement requirements for over a year and I only found out in July 2010.

 

J has anxiety already but with all this added on top it is cruisifying him.

 

I just want him in a new specialist 52wk school so he can finally have the support he needs and then hopefully in time he will not need medication for his anxiety as we will have got to the route cause of Js anxiety in the first place.

 

JsMumx

Edited February 28, 2011 by JsMum

[Sally44]

Thanks Jeanne, I really ideally though need Social services and the Local authority to agree too, at presant each service are providing J two different provisions in different countys of the uk, then he comes home to me in between and the disruption is effecting Js anxiety, so once LEA/SS agree to a 52wk provision then we stand a better chance of succeeding with a provision that meets all of Js needs.

 

I can recommend the Brookdales for your glen they have also set up a adolcence provision too.

 

http://www.brookdalecare.co.uk/

 

I hope that your Glen also gets sorted out toox

 

JsMumx

 

 

If you end up at a tribunal about the placement, make sure that "costings" also include the cost of your son having respite etc via SS. Also highlight any lack of co-ordination, cohesion or communication between the various services and explain how the current provision makes your son more anxious.

[Sally44]

Also keep a daily diary of your sons behaviour.

We haven't got to a state yet that we had to have medication. But after a month off school we have noticed real changes in his behaviour such as going and sleeping in his own bed on his own and staying asleep all night. We didn't talk to him about it. He decided to do it himself.

Sometimes you have to use medication (for your children or yourself), but I am very against medicating my son just so that he copies in an environment that is not suitable for him.

 

As adults, if we cannot cope, or suffer from anxiety or stress in our jobs, then we have the choice of getting another job, or being off sick due to anxiety or stress. Children don't have that choice. By law they have to be educated and they can't just walk out of a school. Many of our kids can't even put into words why they cannot cope. It is an awful situation for any parent to be in when they have to take their child into school every day and they know the kid is not coping.

[Sally44]

Hi Will, J doesnt meet the criteria for Aspergers due to severe Speech and language impairments and he didnt meet the criteria for Autism as he is Intelligent and shows good Eye contact so the Social communication panel dx Features of ASD, as he has significant Social and communication impairments, literal understanding and rigid and restrictive behaviours, he has been indpendantly assessed as having ASD and severe language impairments.

 

J has comorbids and also has Anxiety and Panic atatcks, he gets very stressed very easily, social services who are at present our bain of our life, even though we have begged for help they instead threatened J face to face that Social services would have to remove him from his home if he displayed any further challenging behaviour, which has esculated his anxiety, he started to make and hide weapons around our home, of which he also did at school, every little noise and he is crashing with anxiety, even when there isnt any noise there he feels that there is someone there, the doctor has described this as paranoa and that this could be the first stages of a possible psychosis which is contributed by the fact J isnt sleeping, constantly tense and keeps a lot of his feelings bottled up until he explodes, J isnt in a good place right now as he is also been forced to return back to his BESD residential school of which I feel do not understand his ASD/Sensory needs and have not met his statement requirements for over a year and I only found out in July 2010.

 

J has anxiety already but with all this added on top it is cruisifying him.

 

I just want him in a new specialist 52wk school so he can finally have the support he needs and then hopefully in time he will not need medication for his anxiety as we will have got to the route cause of Js anxiety in the first place.

 

JsMumx

 

 

I know that when my son was very anxious he was scared of everything. Every single noise in the house made him shout "whose there", and he needed constant reassurance that no-one was in the house because he thought there were burglars, monsters etc.

 

My son is at home with me at the moment. CAHMS have said that school need to seek expert educational advice and put a plan together. Until that happens i'm not returning him to the environment that made him ill. Is there any way that you would cope with your son at home until the 52wk placement is agreed? If you get a letter from a consultant saying that your son is currently unfit to attend school (but don't de-register him), then that will cover you from the legal responsibility of having to ensure your son gets an education.

 

I also noticed that all his sensory systems were off the scale. He started head banging, waving his hands infront of his eyes, couldn't tolerate smells or tastes, has not had a bath or shower at all for over a month now. Would not get undressed because he said his skin felt strange.

 

A month later he is beginning to calm down. And i'm getting glimpses of the child I used to know.

 

What do you think your chances are of the 52wk residential placement? Have they seen him and offered him a place?

Edited February 28, 2011 by Sally44

[JsMum]

Hi Sally, J is at presently going throw a reassessment and at the moment his draft statement in part 4 is left blank to request my preference, LEA know too well the answer to this because I need the LEA to aproach the 52wk special school so that the J can be invited to have a look, but it will need to be requested in the official letter which I am constructing as the Draft statement has taken away communication provision, even though J has made NO PROGRESS in his Expressive Language whats so ever since been at the 38wk special school for 2yrs and I found out in July 2010 J wasnt recieving his regular weekly speech and language therapy, recently Ive found out that J also hasnt accessed his weekly councilling either as regularly too, the more information I get the more I find that J hasnt accessed all the provisions the 38wk school said J was entitled to, now his draft statement has even less provisions for communication provision so this is a complete joke and I think what is probably best is to let the whole statement go to tribunal.

 

LEA and Social services are proposing that J is

 

Educated 38wks in oxfordshire.

Respited in Holidays over one week in South Yorkshire

And returns home alternate weekends to me in East Yorkshire.

 

So it is clear that a 52wk school would really benefit J but SS/LEA are not listening at all.

 

J is presentaly on a medical certificate at presant and is accessing Home Tutoring, however this has been disrupted this week as he is in South Yorkshire at his respite until end of the week.

 

There is a possibility he can access an specialist education provision there, but we have to visit it which is at the end of the week, this week was to get J settled and used to the changes and seperation.

 

Social services are going to court in a couple of months to request a Interum Care Order and eventually a care order where they can do what they want and probably what is cheapest for them and not what is best for J in the long term.

 

I think were going to have to fight this one at Tribunal as the Local Authority are not interested whats so ever. Just like they where not interested when I had to fight to get J into a special school in the first place and the Local authority said his needs could be met in Mainstream, even though he hadnt attended for the last two years.

 

I just hope I have the stanima, stregnth and ability to keep on fighting, but I will do for J. If i dont fight for him, No one is gonnax

 

JsMumx

Edited February 28, 2011 by JsMum

[WillR73]

Reason I asked about mental illness is the meds you named. Prozac? Zombie juice for the nervous wrecks. Risperidone? They tried me on that - it was like popping Smarties, but they didn't taste so good and the side-effects weren't nice. I could understand a 5-10mg Diazepam daily for anxiety, but anything beyond that would worry me a bit.

 

They offering him a psychologist? Bit of talking time and a chance to let off steam could do a lot more than anti-psychotics for a child who isn't psychotic. Raise the subject next time you meet the shrinks....never hurts to ask.

[JsMum]

Reason I asked about mental illness is the meds you named. Prozac? Zombie juice for the nervous wrecks. Risperidone? They tried me on that - it was like popping Smarties, but they didn't taste so good and the side-effects weren't nice. I could understand a 5-10mg Diazepam daily for anxiety, but anything beyond that would worry me a bit.

 

They offering him a psychologist? Bit of talking time and a chance to let off steam could do a lot more than anti-psychotics for a child who isn't psychotic. Raise the subject next time you meet the shrinks....never hurts to ask.

 

Hi Will, just a small question how old are you?

 

I did suggest other medications but Diazapam and any ending in pams are highly addictive and the Psych said no way, Js dose is very small so hopefully the side effects are minimal, and compaired to the debilitating anxiety at the moment I cant see we have no other choice.

 

J did see the school counsillor but started to not want to talk about his feelings, he has severe language impairments so getting it across can be difficult, I have requested Art Therapy and play therapy obvously before opted for Medications but there isnt any available, We have even tried Herbal medications and increased his sensory therapy and he has his very own kitted out sensory room to provide J a safe place but his anxieties are still high, so it isnt that I have tried to find other solutions because I have.

 

The issues of letting off steam at home he has a treadmill, a massive gymnastics trampoline in the garden, A six foot standing punch bag, a grapple buddy for wresling with, punch pads and loads of other anger management stratagies, so we have tied the letting off a bit of steam but his anxieties are draining his energy and he is exhausted and tired that he refuses to participate in swimming, walking in the countryside, we ran away in February to the countryside to get some very much country fresh air in the yorkshire dales but it was still very difficult to help J relax, on a country walk he freaked out as he thought we where going to get LOST, he wouldnt go any further, at meal time he wanted Soup and Beguette, the local shop didnt have any beguettes and he insisted we drive a 30 mile round trip for some, he has ridgid and inflexable thoughts that it gets impossible to function normally on a daily basis, so if I sound a bit pissed off with your reply I kind of am because the medication is not a lightly decision. No parent wants their children on medication, but no parent wants to watch a child in the grips of anxiety either and the Pyschiatrist said Js anxiety if left untreated WILL lead to Psychosis.

 

JsMumx

[bid]

Would completely agree with you about the Diazepam, JM.

 

Here's hoping the meds can act as a short-term aid to stabilise J until he has an appropriate placement <'>

 

Bid <'>

[MelowMeldrew]

Hi Will, just a small question how old are you?

 

I did suggest other medications but Diazapam and any ending in pams are highly addictive and the Psych said no way, Js dose is very small so hopefully the side effects are minimal, and compaired to the debilitating anxiety at the moment I cant see we have no other choice.

 

J did see the school counsillor but started to not want to talk about his feelings, he has severe language impairments so getting it across can be difficult, I have requested Art Therapy and play therapy obvously before opted for Medications but there isnt any available, We have even tried Herbal medications and increased his sensory therapy and he has his very own kitted out sensory room to provide J a safe place but his anxieties are still high, so it isnt that I have tried to find other solutions because I have.

 

The issues of letting off steam at home he has a treadmill, a massive gymnastics trampoline in the garden, A six foot standing punch bag, a grapple buddy for wresling with, punch pads and loads of other anger management stratagies, so we have tied the letting off a bit of steam but his anxieties are draining his energy and he is exhausted and tired that he refuses to participate in swimming, walking in the countryside, we ran away in February to the countryside to get some very much country fresh air in the yorkshire dales but it was still very difficult to help J relax, on a country walk he freaked out as he thought we where going to get LOST, he wouldnt go any further, at meal time he wanted Soup and Beguette, the local shop didnt have any beguettes and he insisted we drive a 30 mile round trip for some, he has ridgid and inflexable thoughts that it gets impossible to function normally on a daily basis, so if I sound a bit pissed off with your reply I kind of am because the medication is not a lightly decision. No parent wants their children on medication, but no parent wants to watch a child in the grips of anxiety either and the Pyschiatrist said Js anxiety if left untreated WILL lead to Psychosis.

 

JsMumx

 

 

I know what you mean about rigid thinking ! over the half term he insisted we 'go on a bus' every day and even 3 or 4 times a day. The issue for us is he doesn't care where he goes so long as he is on a bus or in a car, any attempt to actually GO somewhere to DO something is met with a rigid no. There is nothing at the end of the journey, as the journey is all he is interested in. As regards to Diazepam he took it for 4 days and it created total mayhem and anxiety as well as anger in him, it was stopped immediately and is not recommended with rispiridone. . Medication was also something I totally opposed, I have never supported medication and insisted on therapies, however, I had to admit defeat when nothing worked and he deteriorated. I'd never advocate myself an easier life by drugging him out of his, the fact was he wasn't coping. Rispiridone IS an anti-psychotic isn't it ? My issue was the Dr had not examined my lad to determine this, he was just responding to the behaviour exhibited, which may or may not be psychotic at all, since he could not define 'norm' to me.

[bid]

Just to clarfiy about Risperidone.

 

Yes, it was developed as an anti-psychotic drug. But there are many, many drugs that are developed for one condition, but it is then found that they have cross-over positive effects for other conditions and can safely be used accordingly.

 

Another example is something like Epilim, which was developed as a front-line Anti-Epilepsy Drug, but can also be used as a mood-stabiliser in other conditions, such as dementia. Or indeed Diazepam, which is also routinely used as an emergency intervention for prolonged epilepsy seizures.

 

JM if you have concerns about Prozac or Risperidone I think the best thing is to speak to J's consultant <'>

 

Bid

Edited March 1, 2011 by bid