Disastrous visit at CAMHS

[JenRose]

Hello,

 

ive not posted on here for a while but have been lurking!!!

 

We had a visit to CAMHS the other day regarding DD.

 

Some of you may remember my DD who has a dx of PDD-NOS (private dx) after the CDC dx,d her with ASD and then changed their mind following

a discussion with the Ed Psych.

 

DD is still in nappies and is nearly 5, she has been seen by the Consultant Psychiatrist a number of times over the last year who felt that she was presenting

with some symptoms of an ASD but that she was too "sociable" for a dx. SIGH.

 

She said she wasnt saying definately no to an ASD but wanted us to have some help from a clnical psych with regards to her toileting difficulties.

 

DD also has hemiparesis in her left side and is only daily medication for a sluggish bowel,she has been on this for 3 years now and understandable

has not wanted to toilet train.

 

The clinical psych went into school to observe her a couple of weeks ago and we were at CAMHS the other day.

 

Basically she has said DD does NOT have the same difficulties as her brother who has AS and that shes a very bright lovely girl with lots of positive

attributes and if we can just get her toileting difficulties sorted the future is looking good.

 

She queried why we use visual timetables for her, we replied thats because she likes to know things in advance,she said yes but she is very socialble

and we said her being very bright means she is able to mask her difficulties at school but that we get the meltdowns over trivial things such as a child

looking at her a certain way,or she doesnt like a certain girls hair or because she is trying to get the other children to stop talking when the teacher is

and they are ignoring her.

 

Anyway her advice is to play with her more,to give her special time and let her direct the play,to which we replied we DO play a lot with her

she isnt ignored at all,she said yes well i have to ask myself what she is getting from the attention over her toileting difficulties.

 

we were understandably not impressed and we have written a letter to her saying how disappointed we are that after all the assessments DD has had

and that the jury is still out from the Head of CAMHS as to whether she has an ASD or not she can just blame it on us not giving her enough attention.

 

feeling a bit downhearted really,although i know its a load of codswollop because after everything we went through with DS who spent 2 years out of

school and us fighting 3 tribunals and CAMHS to dx him (which they did in the end) they are again treating us this way.

 

Sorry for the long message just needed to offload and i know people on here understand,feeling a bit about it.

 

thanks for reading

x

[Sooze2]

I don't have any advise but thought I'd send a <'>

[call me jaded]

Sometimes 'head' doctors just don't get the 'body' type stuff. Muscle tone and bowel movements aren't linked at all, are they?

 

Still, you could ask to see the continence nurse.

[JenRose]

Thanks for the hug sooze.

 

i dont think its her hemi thats stopping her from toileting,shes been on the toilet last week for a couple of days,we bribed her with a dora

sticker chart and a new dvd,sh got her dvd and stopped,shes a clever one that one!!!

 

we think its sensory difficulties,when shes been on the loo before we have to tuck her in with a cover/towel, she likes things being tucked around her

and deep pressure.

 

but the clinical psych wont refer her to an OT cos we "dont know" if she has sensory difficulties or not which does not make sense as surely an OT

is the one who will dx it?

 

 

 

[JsMum]

 

 

 

You can refer yourself to an OT.

 

Also there is private OT and give sensory programmes.

 

You could look down that route, whats important is that you use a range of therapies to see if they improve the difficulties she is having.

 

Out of syncs child is a great book so do look into this book if you feels there is sensory issues with your child.

 

Also the out of syncs child has fun, is another great book, with lots of ideas, so do look out for that.

 

Implimenting some sensory programmes are worth a try at home.

 

The internet has a few websites on Sensory processing disorder so have a google round the net to get more ideas.

 

JsMum

 

[Karen A]

Sometimes 'head' doctors just don't get the 'body' type stuff. Muscle tone and bowel movements aren't linked at all, are they?

 

Still, you could ask to see the continence nurse.

 

Hi.Yes muscle tone and bowel movements are linked.People who have had a stroke and have a hemiparesis often have bowel problems.

I thought I would say that clinical psychologists are not really head doctors.They are not doctors .However consultant psychiatrists are very experienced doctors indeed who have undergone many years futher training in psychiatry.Karen.

 

[JenRose]

thanks for that info jsmum ill definately have a look at that.

 

This is the confusing thing,DD is under the Consulatnt Psychiatrist who is asessing her to see if she has an ASD, she is very experienced

and "eventually" gave DS his dx of PDD, she has referred DD to clinical psychology to see if they can help us with DDs toileting.

 

This clinical psych is very very young,and i think only just qualified cos she wasnt there 2 years ago when we were at CAMHS for DS.

 

I cannot believe she can simply disregard all the medical reports,CDC asessment and our private dx and what we are telling her.

 

We have written a strong worded letter telling her we are NOT happy that she has disregarded what we are saying and we have asked

to go through DD,s medical files at the next appointment,i know that wont go down well but i dont care.

 

DD is quite bright so all the professionals are telling us and is able to mask her difficulties at school so the clinical psych has visited school

they have said they dont see any socialising problems and shes now said its out parenting skills.

 

We wont stand for that,we fought for DS and we will fight for DD to have the correct diagnosis,i just cant beleive we are having to go through

it all again, if we dont get any joy from this psych then we shall ask to see the consultant psychiatrist again who is very experienced.

[JenRose]

Re the private OT,ive had a look on the web but cant see anything,does anyone have a link to a site for private OT,s?

 

Thanks

 

jen

 

[Karen A]

Thanks for the hug sooze.

 

i dont think its her hemi thats stopping her from toileting,shes been on the toilet last week for a couple of days,we bribed her with a dora

sticker chart and a new dvd,sh got her dvd and stopped,shes a clever one that one!!!

 

we think its sensory difficulties,when shes been on the loo before we have to tuck her in with a cover/towel, she likes things being tucked around her

and deep pressure.

 

but the clinical psych wont refer her to an OT cos we "dont know" if she has sensory difficulties or not which does not make sense as surely an OT

is the one who will dx it?

 

Hi.There is no reason why an OT should not do an assessment.If a child has a hemipareisis and possible ASD it would be a very compex task deciding what is going on regarding bowel problems.However a paediatric OT is trained to assess self-care skills including toileting.Part of an assessment would involve establishing the cause of difficulties...which could be sensory difficulties related to the hemi-paresis,sensory issues related to ASD,anxiety related to ASD or any combination of the above.An OT does not dx anything.However the OT may be able to advise on how to solve the problem.....which is what it sounds like you need.

It would be worth finding out whether you can self-refer to the OT.I would guess that it should be possible if your child has a recognised disability such as a hemi-paresis.If not your gp may well be able to refer.

Just in case you don't know I used to be a nurse who worked in stroke rehabilitation in a previous life. Karen.

 

[JenRose]

Thanks karen.

 

I would refer her to the NHS OT but i know from DS still being on the waiting list 12 months after being referred and also there is an 18 month wait!!

 

i think we will have to get a private OT to come to our house and see DD.

 

thanks for your advice it reminds me that im not a neurotic over anxious mother who has caused her child to not want to toilet train.

 

Where do they dig these professionals up from???????

[Karen A]

Thanks karen.

 

I would refer her to the NHS OT but i know from DS still being on the waiting list 12 months after being referred and also there is an 18 month wait!!

 

i think we will have to get a private OT to come to our house and see DD.

 

thanks for your advice it reminds me that im not a neurotic over anxious mother who has caused her child to not want to toilet train.

 

Where do they dig these professionals up from???????

 

Sometimes they are just young and keen......from an old soul who has seen a few newly qualified NHS professionals in her time......and is now old enough to be there mum.

 

[mom]

how many times do they try to blame our kids on our parenting kids... in middle of trying to get diagnosis for youngest son I was told the same and told I needed to go to counselling so I could have someone to talk to... my reply was will that help with my sons speech, social interaction and 100 sensory problems of course her reply was NO so why would I go then.... anyway sorry to ramble just wanted to let you know my son has lots of sensory problems he is almost 5 and cannot use the toilet.... and wears a nappy he has an ot who was sourcing a toilet chair (8months ago) then she went of on maternity leave and we have heard nothing! We tried everything from steps to toilet a pot sticker charts surprises the whole works now we just get on with it in the hope that some day it will kick in!

 

Good luck!

 

xx

[bikemad]

That makes me mad when they pass the buck and blame the parents..they tried it with me n told me I had no bond with my son....I went mad n went into an hours long no stop to breath run down of exactly how bonded I am with my son n how much I do with him n for him etc etc.....they soon shut up n realized I wasnt budging n knew something was wrong with ds.

[cmuir]

Hi

 

I know exactly how you're feeling. I'm afraid I have absolutely nothing positive to say about CAMHS. In my dealings with them, I've always felt like it's been 1 step forward and three back. They actually created problems where there weren't any and not addressed the ones in existence. In addition, I'd go into appointments feeling anxious and come out in tears. I got to the point where I advised them I couldn't continue (and gave the reasons) and asked for my son to be discharged. Unfortunately, I've found that I have no choice but to have 'dealings' with them because his consultant has reached a brick wall with my son (she can't do anymore). It's so frustrating. All I can advise is to stay strong. I guess when a child behaves outwith the 'norm', people like CAMHS have to find a reason and unfortunately (as horrible as it is), they have to start with the parents and look at their parenting skills/lack of them. However, one just has to hope that they get past that and start directly addressing issues with the child.

 

Best wishes

 

Caroline