Help please? from parents with an autistic child

Toto

Hi everyone

My daughter is profoundly autistic, she also has fraglie x syndrome, ADHD, behaviour dissorder, and mild epilepsy. She is 9 and was diagnosed when she was around 20 months.

We have been to see her consultant recently who has suggested taking her off her current medication (carbamazapine) and putting her on to clonidine. I agree that we need to look for an alternative medication because she really isn't getting much benefit from the carbamazapine any more, her behaviour problems and mood swings have become much worse over the past year or so, but having searched the net on the clonidine I'm not sure I want her on that. I have read that this medication is used for many problems from weaning addicts off opiates to hot flushes in menopause. I have discovered that research has shown that this medication at best does little to help autistic problems and in some cases can make them worse.

I phoned the consultant and asked why she suggested this medication and was told it was because it might help to improve her concentration easing her ADHD symptoms. She was very firm in wanting to put my daughter on it asap. My issue is that it is pointless easing symptoms from her adhd if it may make her autistic symptoms worse. I am also not very happy with the fact that this medication lowers blood pressure and heart rate, it doesn't sound at all like something I want to give a 9 year old.

So, does anyone with an autistic child have experience of this medication? Also, what has your child been prescribed? What have you found has worked? She has had almost every therapy and non chemical approach and I do agree she needs some medication but I just don't know about this one. I wouldn't mind giving it a go if it weren't for the blood pressure/heart rate thing. Sometimes I get the feeling that no one really cares about how I feel regarding this type of thing, the attitude is, we think this medication is right so the child will have it regardless of how you feel. Any advice?

Thanks xx

Jo_R_2

My cousin is severely autistic and has ADHD. She's in her twenties now and what you said about thinking people don't care about what you think struck a chord because my cousin's dad (also my cousin - very confusing!) spoke to me about her medication. She too has been on different meds and the doctors where she lives wanted to prescribe her ritalin. Now my cousin was not for this but he felt pressured into saying yes, despite his concerns and wanting to discuss the issues. She is on it now and has been for a while but I think he's tired of arguing... sad but true.

It's difficult for me to speculate as I know how difficult it must be but don't have that direct personal experience as a parent. I do think you are right to do your own research and I know from other experiences that it can be so hard to get a point across to a doctor when you are unsure of something yet they are insistent that they are right.

Can you ask for a second opinion? You don't have to give a reason to see someone else but would it be worth another go at explaining to the consultant, maybe to write down the important points in a letter to avoid becoming too emotional (difficult!) I think with some medical professionals they can get into the trap of seeing each patient as a 'case' rather than a person, dealing with them holistically. As a normal, rational adult I think your points are very valid and I see no reason why they can't be discussed to explain the reasonings behind this medication to you.

Sorry I can't be of more help but I hope you get things sorted out as you want them.

Sultana

Toto wrote: »

So, does anyone with an autistic child have experience of this medication? Also, what has your child been prescribed? What have you found has worked? .... Any advice?

Thanks xx

I have an autistic child but I have no experience of medication. You are more likely to find someone who has at http://www.asd-forum.org.uk/forum/

getcarter

I have an autistic child too but again no experience of medicines but:grouphug:

ivillage is also good for special needs children, I'll try to find the link...........

Carter

D&DD

Hi Toto I also have an 8 yr old autistic son :hello: There are quite a few of us on here so will give your thread a little bump up in case anyone can be of help to you.:D

supersavershal

Jo_R wrote: »

My cousin is severely autistic and has ADHD. She's in her twenties now and what you said about thinking people don't care about what you think struck a chord because my cousin's dad (also my cousin - very confusing!) spoke to me about her medication. She too has been on different meds and the doctors where she lives wanted to prescribe her ritalin. Now my cousin was not for this but he felt pressured into saying yes, despite his concerns and wanting to discuss the issues. She is on it now and has been for a while but I think he's tired of arguing... sad but true.

It's difficult for me to speculate as I know how difficult it must be but don't have that direct personal experience as a parent. I do think you are right to do your own research and I know from other experiences that it can be so hard to get a point across to a doctor when you are unsure of something yet they are insistent that they are right.

Can you ask for a second opinion? You don't have to give a reason to see someone else but would it be worth another go at explaining to the consultant, maybe to write down the important points in a letter to avoid becoming too emotional (difficult!) I think with some medical professionals they can get into the trap of seeing each patient as a 'case' rather than a person, dealing with them holistically. As a normal, rational adult I think your points are very valid and I see no reason why they can't be discussed to explain the reasonings behind this medication to you.

Sorry I can't be of more help but I hope you get things sorted out as you want them.

Hi there , i am a registered childrens nurse and come across this quite often.If you are unhappy you can enlist the help of PALS (patient advocacy liason service).They are really good and will give you lots of help to get to the bottom of the situation and have your feelings and needs acknowledged, you will be able to contact them through your gp or local hospital.Hope this helps.

supersavershal

Toto wrote: »

Hi everyone

My daughter is profoundly autistic, she also has fraglie x syndrome, ADHD, behaviour dissorder, and mild epilepsy. She is 9 and was diagnosed when she was around 20 months.

We have been to see her consultant recently who has suggested taking her off her current medication (carbamazapine) and putting her on to clonidine. I agree that we need to look for an alternative medication because she really isn't getting much benefit from the carbamazapine any more, her behaviour problems and mood swings have become much worse over the past year or so, but having searched the net on the clonidine I'm not sure I want her on that. I have read that this medication is used for many problems from weaning addicts off opiates to hot flushes in menopause. I have discovered that research has shown that this medication at best does little to help autistic problems and in some cases can make them worse.

I phoned the consultant and asked why she suggested this medication and was told it was because it might help to improve her concentration easing her ADHD symptoms. She was very firm in wanting to put my daughter on it asap. My issue is that it is pointless easing symptoms from her adhd if it may make her autistic symptoms worse. I am also not very happy with the fact that this medication lowers blood pressure and heart rate, it doesn't sound at all like something I want to give a 9 year old.

So, does anyone with an autistic child have experience of this medication? Also, what has your child been prescribed? What have you found has worked? She has had almost every therapy and non chemical approach and I do agree she needs some medication but I just don't know about this one. I wouldn't mind giving it a go if it weren't for the blood pressure/heart rate thing. Sometimes I get the feeling that no one really cares about how I feel regarding this type of thing, the attitude is, we think this medication is right so the child will have it regardless of how you feel. Any advice?

Thanks xx

Please read my other message.Contact PALS patient advocacy and liason service, they will help you.Dont let your child have the medication if you are not happy.When children begin this medication it takes a while to get the dose correct and you will not like to see how this affects your child.Please contact PALS it is what they are there to do and you will probably find there is a person working for them who is experienced in dealing with child and family options.I know how daunting it is to get your feelings to be recognised by the medical staff, especially if your acting for your children.They are too precious, the child comes first and you need to make your feelings heard.

whatamess_2

Hi, can understand wanting to take her off carbamazipine but clonidine?
Has anyone mentioned risperdal/risperidone. It can have good results with autistic behaviours. what's better is tiny doses are all that's needed.

One young person I work with (very autistic/challenging behaviours/compulsive behaviours) has just been prescribed risperidone 0.5ml twice a day. The effect for him has been good (calming ,reduction in behaviours)

SEK_2

I work in a respite project for children with learning disabilities. We have many children come through our doors with a wide range of disabilities. Quite a lot of our children are autistic with other conditions also.
I have never come across a child that takes clonidine, most of our children are on medication. (have worked in this line of work for 10yrs).

The most common medication that we see is Epilim for epilepsy, risperdal/risperidone for behaviour problems (works very well once the right dosage is sorted) and lactalose for opening the bowels.

So many of our parents feel they have to do as thier consultant says and put thier children on medication that is wrong for thier child even though they have misgivings themselves. I understand how difficult it all is and part of my role is to support the families, giving them the confidence express thier feelings.

I also have an older brother with learning disabilities who's never been on medication until now at the age of 40, his health is failing him badly and Dr's are putting him on all sorts with some terrible mistakes happening.

Mrs_B_12

As your daughter has several different health concerns have you tried https://www.specialkidsintheuk.org? Info there and a parents forum.

rls1973

there is a good special needs section on https://www.mumsnet.com

there are a high proportion of parents of autistic children there, someone may be able to help there
all the best