Medication, clonezapam

[White25]

My daughter was put on medication for epilepsy, but she has not got epilepsy, they say it is the right medication and she is going to be kept on it, since taking the medication, she is talking gibberish all day, and is unresponsive, and has memory loss. I would like to hear from anyone in this position.

[49Twister]

Need to ask what is the reason she has been put on it if she doesn’t have epilepsy?

[White25 in reply to 49Twister]

She was in the process of moving, and she stopped going out, and would not go to school, she stopped talking, and was in a ver depressive state of mind, and they gave her this medication, they said it was to get her talking and something about electricity on the brain, and to relax her muscles.

[49Twister in reply to White25]

Hi, It’s obviously very difficult for you to see your daughter like this. Does she have a learning disability as well as mental health issues. I know certain medications can be used for a variety of conditions, so although she doesn’t have epilepsy they seem to think this might help.You say you have no parental rights which is a really tough situation. Do you have someone who can attend the meeting with you next week who understands the situation and can ask the right questions. Write down any questions you have and any response to them.It definitely feels like you need some professional support as well as your daughter. Sorry I can’t be more help, good luck.

[White25 in reply to 49Twister]

She has autism a learning Dissability, but do not know how severe it is, and also mental health issues, we went to see her last week, she has not drank or eaten since seeing us. The meeting is via zoom, we will have questions written down.

[lemtouni in reply to 49Twister]

healthline.com/health/cbd-o...

[Jofisher]

I would challenge this as a parent as is this in her best interest as it doesn’t sound like it is from what your saying. Whose saying she needs to be on it and what’s their reasoning. I would ask for more evidence and information and maybe you could request a best interest meeting to thrash this out but don’t be intimidated by the professionals you are her Mum at the end of the day.

[White25 in reply to Jofisher]

My daughter was in therapeutic care, and we were only allowed to see her every eight weeks, and she had a big dip, depression shortly after going there, she pulled out of it, and they told us there was too long between visits, this is why she was like that. Last year she was told she would be moving, and she did not want to move, she would not leave the house or go to school, they had to put her on medication to get her talking, and to relax the muscles, and something to do with electricity on the brain. This medication is also used for epilepsy and seizures, she is talking gibberish since taking it, and is unresponsive, and seems to have no memory, and does not talk to us, we have no parental rights. We are having a meeting next week with psychiatrist and psychologist.

[Jofisher in reply to White25]

Would you like to speak to a consultant social worker and maybe your daughter needs her own advocate who can support her and you.

[White25 in reply to Jofisher]

My daughter will not talk to anyone, she just points at things, an advocate came to see her twice, she would not talk. We went to see our daughter on Thursday, she did not talk to or respond to us, the medication has a lot of side effects, the psychiatrist put her on the medication.

[Eeviee]

Hi there. I can only tell you my experience. My son was given lots of medications over the years. Some had subtle side effects which were not flagged up to me or detected for some time. One was urinary incontinence which appeared when my son was about 8. He had been dry since 3. When I challenged the consultant she tried to fob me off but I persisted. It took a year to prove me right but in the end the side effect produced a damaged kidney. I was convinced the medication was not helping so I withdrew it gradually and once fully withdrawn my son regained urinary continence. That was risperidone . Other medications which affected my son more quickly and dramatically such as olanzapine and sertraline I instantly withdrew. My son lived with me during all these experiences so I knew straight away that these medications upset him. . I have deputyship for health and welfare so that I and the immediate family make all decisions about his medication. He does not take any now and has not done so for about 6 years. He is 24 now. If you think something is wrong , you are probably right so challenge it. I would also recommend getting deputyship if your daughter does not have capacity. Good luck

[CT76 in reply to Eeviee]

What effects did you notice from the sertraline. My son is on this, as well as risperidone and dexamfetamine

[Eeviee in reply to CT76]

Hi. The risperidone didn’t seem to help him at all but it did have the dramatic side effect of urinary incontinence. The sertraline made him very agitated and I stopped giving it to him very quickly. He has been better without anything.

[CT76 in reply to Eeviee]

Ive always questioned how these meds make my son feel and if they actually help. He is not able to say..all I know is that he doesnt like the taste of sertraline. I am afraid to make changes too as prior to starting some of them he was having meltdowns daily for a year 😪 (in 2017 my son's behaviour changed dramatically overnight) He started on elvanse and we noticed a difference. His anxieties were still very high and really restricted the things he could do and once enjoyed so one by one these different meds were introduced. He is still fairly anxious and struggles daily but he has not had a meltdown since May now

[Eeviee in reply to CT76]

Hi there. It’s not easy so don’t be hard on yourself. Just do what you can. Find out as much as you can and speak with others as you are doing now. Ultimately we all try to do our best with limited knowledge and we rely on the professionals. When we lose trust in them we feel anxious. Ask for a second opinion whenever you feel like that before making any decisions. Take care. Whatever you decide you will make the choice that you are happy with.

[lemtouni]

I am sorry to hear that. CBD oil is uses to threat epylepsia. Did hear about it?

[Iolo]

I am so sorry to hear about what your daughter is experiencing. Are you aware of STOMP STAMP, this was the NHS and all associated professionals and organisations pledge to not overmedicate or inappropriately medicate children with LD, autism or both. england.nhs.uk/publication/...

It is essentially the recognition that inappropriate medicines have been used, and often to compensate lack of understanding about people and good care. It may be that the professionals involved in your daughters care are still not understanding your daughter and have jumped to the wrong intervention but I would ask them about how they support STOMP STAMP and what that means for the clinical decision making about her care. I guess professionals use medication as they are trying to make things better but all too often it does not work like that, complex problems require complex solutions.

Equally if you feel they are abusing their clinical powers then you may need to explore child protection. When we hear about the treatment of people in psychiatric hospitals there are always professionals associated with those practices, either by sanctioning or by ignoring and avoiding responsibility. Each professional is accountable to their registration and yet we do not hear about that.

Finally I wonder how the environments is impacting on her? Overwhelming and unfamiliar environments can be extremely frightening and detrimental to people’s mental health. You say she is in therapeutic care but I wondered what that means. It strikes me often that therapeutic settings can be clinical and cold, they are not designed to enable people to recover, that happens in homely environments designed around peoples specific needs. I would ask what environmental considerations are being made to support her disability and mental health needs.

Sorry, I expect you will have thought about and explored these issues. I have a tendency to get on passionate soap box and that is not going to necessarily help the sense of helplessness that you may be feeling right now. I really hope the meeting goes well this week.

[learner01]

So sorry about your daughter’s situation. It sounds as though she is not getting the right care and may have been finding moving hard.It may be that she is traumatised by what is happening to her and so cannot speak.

The British National Formulary for children bnfc.nice.org.uk states under side effects for clonazepam that speech impairment is possible.

Resorting to drugging her is not the answer and from what you say about electricity it sounds as though they may be talking about ECT treatment which is electric shocks to the brain whilst under a general anaesthetic. This cannot be done without informed consent and I would be very surprised if it was ever appropriate for a child. It sounds as though those who are currently caring for her have no understanding of people with autism or even the normal fears and anxieties that anyone experiencing change can have. The autistic society may be able to help you. autism.org.ukYour daughter does have a right to a second opinion from a different doctor. Ideally Someone who understands about autism and the effects of trauma.

You may also need to get legal help.

[learner01]

In a previous post on another topic the organisation

sunshine-support.org

was mentioned with regard to getting the right help

I think that they may be able to help you

[Pogul44]

Hello White25,

I am so sorry to hear of the difficulties you are having in trying to be heard by the professionals.

My brother is prescribed Clonazepam on an "as required" basis. He is diagnosed with epilepsy but this is not the reason he has been prescribed this medication. He has severe learning disabilities and lacks capacity and in his case it is used to calm him if he has an extended period of anxiety or sleep deprivation, as these will cause him to have an epileptic episode. He is prescribed half a tablet and if he hasn't calmed down after a few hours he is prescribed the other half. A half tablet usually does the trick though. When on this medication my brother is quite listless and dopey, in almost a permanent state of drowsiness. His level of alertness is considerably reduced and he is not himself. In his case however it is necessary to ensure he gets enough sleep and it is only infrequently required. I would not want him on this medication for long.

I read the Key Facts for this medication on the NHS website, and it says the following:

- Clonazepam works by increasing levels of a calming chemical in your brain. This can relieve anxiety, stop seizures and fits or relax tense muscles.

- The most common side effect is feeling sleepy (drowsy) during the daytime.

- Clonazepam is not likely to be addictive if you take it for a short time (2 to 4 weeks).

- If you take clonazepam for more than 2 to 4 weeks, your dose will need to be reduced gradually before you stop taking it.

In addition, under the Who can and cannot take Clonazepam it says the following:

To make sure it's safe for you, tell your doctor before starting clonazepam if you:

- have recently had a loss or bereavement, depression or thoughts of harming yourself or suicide

I don't want to seem pushy but key questions I would ask the professionals are:

1. What dosage is she on?

2. How long has she been on this medication?

3. How long is she expected to be on this medication?

4. If longer than 2-4 weeks, how will the potential for addiction be managed as it is clear this should only be prescribed on a short-term basis?

5. Are they aware that she was in a depressed state of mind due to the move and, if so, why was she prescribed this medication in the first place?

6. Do any of her other medications interfere with the effectiveness of this medication or increase the chance of its known side effects?

Please be aware of the following:

What if I take too much?

The amount of clonazepam that can lead to an overdose varies from person to person.

If you take too much clonazepam, you may get symptoms including:

- poor coordination or trouble speaking

- feeling sleepy

- a slow or irregular heartbeat

- uncontrolled eye movements

- muscle weakness

- feeling overexcited

The NHS website page this info is taken from is as follows:

nhs.uk/medicines/clonazepam/

I recommend you read through the information on this page very carefully as whoever has prescribed this medication to your daughter must follow NHS guidelines.

Having read through the above webpage it seems to me that your daughter is on too high a dosage. The side effects certainly suggest this as your description of her current state are listed.

I would contact the Safeguarding Team within the local authority you daughter lives in and discuss your concerns with them and ask their advice on what you should do. They should be able to give you all the advice on what to do and who you should contact. If they feel this is a Safeguarding issue they will open an investigation themselves.

Please post back on how you get on especially if you feel the meeting wasn't very positive. I'm sure there are other things you can do but it's difficult to advise on anything more specific as we do not know the full circumstances.

It does sound as though she is not receiving the right care though and perhaps reporting it to CQC might be an option. They will not take on your case specifically but it will alert them to any concerns you have with whoever is looking after your daughter. They may have a long list of complaints against them and it might prompt them to investigate if too many complaints have been made.

I hope all goes well at the meeting next week and have everything crossed for you and your daughter in receiving effective and proper care soon.

Best regards.

[White25 in reply to Pogul44]

Hi

Thanks got the info, who are CQC please, thanks.

[Pogul44 in reply to White25]

Hi again White25,

CQC (the Care Quality Commission) are the regulator for health and social care. You can read about what they do at their general website, as follows:

cqc.org.uk/

Below is the direct link to their contact us page:

cqc.org.uk/contact-us

This shows how to contact them if you want to report a concern or make a complaint about a service or provider they regulate.

It's worth spending some time browsing their website, especially their Help and advice section at the following link:

cqc.org.uk/help-advice

You can read about what makes good care and information about mental health and mental capacity which from what I've read of your situation relate directly to your daughter.

I really hope this helps.

Best of luck.

[car67]

Hi, white 25 , So sorry to hear about your daughters situation. What I do know is that very epilepsy medication gives you memory loss regardless of age, severity of epilepsy or not having epilepsy. I have done a lot of research on epilepsy and medication and if you can wean her off the medication then I definitely would, the side effects of epilepsy medication is horrendous.

[White25 in reply to car67]

Hi againThanks for the information. Everyone is telling us that she has epilepsy, she showed signs of a seizure down in Norwich, she was absent, our daughter was told she would be moving at 18, she got into an awful state of depression, she would not leave the house, would not go to school, or leave her room, sitting on the floor all day, when she got up she could not walk she had so much cramp in her legs, they told her they were giving her medication to get her better, she would not take it, fluoxatine was the first medication, they tried all different ones and she would spit it out, then they gave her the one she is on now in a very sweet mocha. They told us it is not the epilepsy where you have the fits. I was reading up about PTSD and it said it causes memory loss. She does not communicate with anyone, she is just repeating things people say all day long and laughing to herself. She is waiting for the speech and language therapist to come in to get her communicating, she is waiting to see a psychiatrist, and waiting to get therapy for PTSD. They told us she is on the right medication and they are leaving her on it. We cannot do a thing, we have no rights over her. When we go to see her she does not talk either, just repeating things.

[Actor000]

Hi there are some anti-convulsant medications given for other conditions, than seizures but as far as i am aware clonezapam is not of that nature so i find like other replies you have had, hard to understand why such a medication has been prescribed and would seek a second opinion when you say"they say its the right one" who are THEY?

[White25 in reply to Actor000]

The psychiatrist in Norwich, it was him that prescribed the medication, he told us on a zoom meeting that they could not send her anywhere the way she was, not talking, he told us that he was giving her clonezapam to relax her muscles and check electricity on the brain and to get her talking. The medication did get her talking. The new care home said if she was not taking the medication she would not be talking, or moving, she would be sitting down all day and would not move at all.