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jacquelineh1468

terrified of what will happen when my son is taken off meds

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hi my son aged 7 mths was dx with hypotonia,at 6 yrs old with adhd and medicated and has just been dx with asd where he scored very high on a ados test.Last month i attended a multi agency meeting with the school and my sons psychiatrist from cahms,at the meeting the school questioned my sons dx of adhd as he does not fit the stereotype i think,the psychiatrist advised the school that somebody had been into school from cahms and had observed my son in class and as soon as the teacher moved away from his desk my son began to flick his pencil and lean back on his chair and laugth and joke with other pupils in the class to which the teacher said that most of the children in her class are like that.The psychiatrist advised that i have to take my son off the medication [concerta xl 27mg and melatonin 4mg} and keep a diary but the last time my son was taken off the meds he became very depressed and anxious and i am now dreading monday when i have to stop giving him the meds.I now feel very confused have i been giving my son medication that he shouldent have been on for 4 years?Is the asd dx correct.Iam sure that i read somewhere that asd can cause hyperactivity but my sons psychiatrist has said this isnt true.Is there anybody that can help or advise me as i am desperately worried about all of this

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I'm sorry I don't have any experience of medications, but i'm sure others who do will post. You could also put another post in the 'help and advice' forum.

 

I don't know if it is advisable to suddenly stop this medication or whether a gradual reduction is better. Is that what you have been told to do. If you are not happy to stop medication so abruptly because of how your child was before, then they should hear your concerns and answer them. Can you phone the psychiatrist and speak to them.

 

If they feel that the medication may not be needed, then the only way to find out is to stop the medication and see what happens.

 

Are the people involved experienced in the various diagnosis your child has?

 

Regarding hyperactivity in those with an ASD. There are many children with just a diagnosis of an ASD that are also hyperative. Where that comes from isn't always identified. In my own son's case he probably has aspects of ADD that makes him impulsive and be easily distracted. He also has sensory issues and sometimes that can mean that they need to do physical things to pep them up to do the next task. This is even encouraged in his school ie. they make the children do star jumps or a dance because the physical movements gets the brain ready to get engaged.

 

I also think that there are not many children that are a perfect cut out for the diagnostic criteria. There can be bits and pieces of other disorders as well, but never enough to get a dual or co-morbid diagnosis.

 

So my son can get hyperactive sometimes. I think it could be due to sensory input needs. Or it could be dietry. Or he could be overstimulated. There are some days you can do nothing with him. And I find he is worst at certain times of the day. But it can be difficult to actually identify what is causing which behaviour.

 

But if you have concerns then they need to be answered. You could also call the National Autistic Society's helpline and discuss this with someone there.

 

If it does turn out that he does not need these medications then that is great. No one wants to medicate someone if they don't need it. If he does need it, then he will be put back onto it. And it will have given you an opportunity to find out a bit more about your sons diagnosis and will give you more confidence to be more forceful in any future situation where you feel you are right about your son. Professionals are not Gods. I have found many to be right and many to be wrong. As his mother you know what has worked and what hasn't.

 

I presume the melatonin is to help with sleep. Why are they suggesting stopping that? If he had difficulties sleeping how long are they suggesting you stop the medication before they see you again. If he starts climbing the walls and not sleeping after day 3 and they are not going to review the situation until a fortnight later, how are they suggesting you carry on your day to day life?

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Hi, my step son was also on concerta and taken off it although he was weaned off the concerta and onto straterra. I have to say in his case there was no real difference in our opinion in his behaviour on or off any types of medication. We did not find he had any untoward side effects from coming off the concerta (we had taken him off them ourselves without introduction of any other meds before) although obviously all children are going to react differently to medications.

I would contact his consultant as you are obviously concerned about him having withdrawal from the concerta and request he be weaned off them??? Concerta is a very strong medication and as with the quicker release ritalin has good and bad press.

I will add that the ONLY reason we conceded to medication for periods of time were that the special school he attended at the time were insistent that he was medicated ( this was eventually challenged by the consultant).

My step son in now 17 and as soon as he turned 16 he refused medication as he despised how it made him feel.

I should add that my step son has a Dx of Aspergers and ADHD.

I hope you manage to get everything sorted out and it all turns out well.

 

Good luck.

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I would contact NAS helpline as reguards getting further information on Hyperactivity and Autism, but I am surprised they are wanting to take away his Melatonin?

 

I personally would request another pyschiatric opinion or a hospital assessment where he has access to proper doctors to evaluate his behaviours, Im sure there may be withdrawal symptoms with this medication so personally Id get further information, youngminds may know more on the medication issue too or Great ormand street hospital who specialise in both ADHD and Autism.

 

I wouldnt be happy stopping a drug that has been in the body for over 4 yrs.

 

JsMumxxxx

 

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Personally i would try him for a week off one med at a time. You cant tell which medication was preventing which issue otherwise.

Since concerta is used to help ADHD and pseudo adhd can occur with lack of sleep then i would try going off the concerta 1st and wait

for a reaction.

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