Enid Report post Posted January 9, 2008 Hi. I`m new. My 11 yr old diagnosed with ADHD ASD MLD has recently had his medication altered from equasym xl 30mg to concerta xl 36mg. His behaviour at school deteriorated noticably but remained the same at home which luckily has never been too much of a problem. The week between xmas and new year, he had been on new meds for 3 wks, we had 3 major incidents in what I can only describe as psychotic behaviour, he had to be restrained and was violent and threatening, he was chanting phrases over and over and was wild eyed and intimidating, scary stuff. I took him off concerta and put him back on the equasym, no consultants available as over xmas tho I did take him to A&E at one point, they were no help. Anyone out there had similar probs or got any advice! Thanks Enid Quote Share this post Link to post Share on other sites
Karen A Report post Posted January 9, 2008 Hi Enid.I do not have any advice but hope others here may be able to help.Welcome to the Forum.Karen. Quote Share this post Link to post Share on other sites
JsMum Report post Posted January 9, 2008 (edited) Hi from the description you gave it sounds like either too much medication or too little, or it just didnt suit him, has he had any further psychotic behaviours since transferring him back to short acting ritalin. Has his appitite been affected, J can have severe behavioural difficulties when his blood sugars go too low, this happened more with ritalin because J virtually stopped eating, so eating and drinking was really hard and he became hypo. Look at hypoglicemia and see if it could be this. Concerta is the same drug as the short acting one the only difference is that the capsule slowly is released in the stomach, it may be this that has upset his system and just not suited for the slow release structure but I have not heard of any psychotic reactions, its more headaches, stomach aches, so I would keep a diary of any further episodes, I have heard that there is peeks for ADHD/ASD and 11yrs is common peek where there is changes in chemicals in the body due to hormones getting ready for puberty. I would defo go back as soon as possible to the perscribing doctor. Just to add as well that concerta dosage is different to the fast acting ritalin, it may be that he wasnt taking the right dosage of concerta. JsMum Edited January 9, 2008 by JsMum Quote Share this post Link to post Share on other sites
kellyanne Report post Posted January 10, 2008 (edited) hi, Welcome to the forum <'> J was on 54mg of concerta xl at one point and we had trouble with him while it was getting into his system, being a slow release tablet and all that. and also it didn't really seem to make much difference so he was changed to ritalin 40mgs the fast acting one. they did want to put him in equasym xl but i wasn't that keen as again it was a slow release tablet. J seems to be doing well on the ritalin. HTH KA x x Edit:- Sorry, I didn't really have any advice for you, and didn't really answer your question. Edited January 10, 2008 by kellyanne Quote Share this post Link to post Share on other sites
Enid Report post Posted January 10, 2008 Thanks for replies, he hasn`t had any more episodes since I took him off it but I have noticed he isnt eating and drinking as much as normal so will get bloods checked. If this is a peek and there is more to come! god help me and the younger ones as he was out of control like a stranger, i find myself walking on eggshells in case it happens again. Enid Quote Share this post Link to post Share on other sites
Enid Report post Posted January 12, 2008 MY son has been in respite for a few days and all was well although he and us are desparate for him to be home, its not to far so I go to visist and he phones endlessly, then last night he had one of the violent episodes that I reported had happened at home and had to be sedated, I am desparate now as ss say he will have to stay for full assessment as he is a danger to himself and others, they say I will have full pr but if I take him home i am putting other kids at risk, how can this have happened to my lovely son and will it ever stop, am desparate anyone been in similar situation? Quote Share this post Link to post Share on other sites
paulathomson Report post Posted January 12, 2008 i had my ds on concerta aswell for about 3 months but i had him taken off it because it made him ''hysterical''..he would be absolutely petrified of the slightest thing...things that he would not normally be afraid of. and you could literally smell the fear coming from him...he was on it as dx'd with asd/add.. so for the add...but i found it also made his obesseions worse and just generally his behaviour was worse...even though his concentration was great.. i now refuse to give him any meds for add...just manage with omega 3... and his anxieites are not as bad... Quote Share this post Link to post Share on other sites
stressedmumto2 Report post Posted January 13, 2008 My son was very obsessive on it when he was taking 36mg dose and his anxieties were alot worse. The concentration was great but he would over-focus on things and would at times be quite fixated which would then lead to violent episodes if he couldn't have what he wanted. On 18mg he wasn't as bad obsessive and fixated but it didn't do wonders for the ADHD. I'm really sorry I have no advice to give you but think you should speak to the paed and ask their advice, maybe ask the respite people if they could write a full acoount of how your son's episode was as this will help the paed. Sending you some hugs, it must be awful what you are going through right now <'> <'> Quote Share this post Link to post Share on other sites
Enid Report post Posted January 13, 2008 Thanks for replies, interesting, as he was much much more fixated about things on concerta and very irritable. Respite said yesterday he was manic for 3 hrs in afternoon and out of conrol. They phoned emergency doc who phoned me and asked permission for him to have Risperidone, I gave it as am at wits end, if two burly men at respite cant cope what hope have I? Spent day with him today and he seems very calm. Have got emergency meeting with pead at cahms on tues so hope they can shed some light on it. He has been off concerta for 2 wks now so I`m presuming its out of his system so cant blame friday nights violent outburst on it. Thanks for support will keep you posted. Quote Share this post Link to post Share on other sites
JsMum Report post Posted January 13, 2008 Hi Enid sorry to read that your son has had another violent incedent, I hope that the assessments can provide you some answers and that risperidol helps him for now, it must be a very difficult time for you and your family. JsMum Quote Share this post Link to post Share on other sites
Karen A Report post Posted January 13, 2008 Enid. <'> <'> Sorry you are all having such a difficult time.I really hope that Camhs are able to provide some input and support.If you feel that it might help to talk things through with somone before the meeting with Camhs on Tuesday ''Young Minds'' operate a telephone advice helpline.If you need specialist advice then the advisors can arrange a call back for you from a professional with relevant knowledge.The number is on ''Young Minds '' web site.Karen. Quote Share this post Link to post Share on other sites
Frangipani Report post Posted January 14, 2008 (edited) Hi from the description you gave it sounds like either too much medication or too little, or it just didnt suit him, has he had any further psychotic behaviours since transferring him back to short acting ritalin. Has his appitite been affected, J can have severe behavioural difficulties when his blood sugars go too low, this happened more with ritalin because J virtually stopped eating, so eating and drinking was really hard and he became hypo. Look at hypoglicemia and see if it could be this. Concerta is the same drug as the short acting one the only difference is that the capsule slowly is released in the stomach, it may be this that has upset his system and just not suited for the slow release structure but I have not heard of any psychotic reactions, its more headaches, stomach aches, so I would keep a diary of any further episodes, I have heard that there is peeks for ADHD/ASD and 11yrs is common peek where there is changes in chemicals in the body due to hormones getting ready for puberty. I would defo go back as soon as possible to the perscribing doctor. Just to add as well that concerta dosage is different to the fast acting ritalin, it may be that he wasnt taking the right dosage of concerta. JsMum Hi Enid The episodes are common when changing medication. Each time my son was introduced to a new drug we saw the Paediatrician possibly twice a week and a phone call away to explain the behaviours. The outcome was always as J'smum described - too much or too little of the drug OR the wrong medication altogether. My son as he got older could tell us how much they benefit him - but my daughter and I watched for signs that could state otherwise. My son will be on meds for life as his needs are very severe. It can take a couple of weeks to get the balance right. To begin with my son had to take one ritalin as its fast acting along with the concerta which is slow release - it lasts 10 hours before this he had to take meds every 3 hours. After a couple of weeks he came of ritalin altogether. Concerta gave us ALL A LIFE!!! school days much more calm and manageable my son much much happier as peers were nicer etc etc. Keep strong keep a diary go to dr regularly, support groups read books it will all come together in the end. <'> <'> Edited January 14, 2008 by Frangipani Quote Share this post Link to post Share on other sites
Enid Report post Posted January 16, 2008 Met with pead and consultant yesterday, ds refused to talk at meeting or look at anyone, general opion was that he has had psychotic episodes most likely brought on by concerta, or some form of epilsy, or the onset of psychriatric probs. He is to have blood tests, EEG as a matter of priority, in the meantime is to have resperidol 5mg twice a day and the equasym is to be phased out, all agreed he is to stay at respite until a period of calm is reached as the agression and violence is so hard to contain. DS refused to speak to me on phone last night or this morning as he feels I am abandoning him and is refusing to take medicene! Keep you posted. Quote Share this post Link to post Share on other sites
JsMum Report post Posted January 16, 2008 Oh no Enid it must be very difficult at the moment, you defo havent abandand him, you have got him desperate help, he wont see that at the moment, its going to be difficult for all of you until he has had his medical checks, and starts to take the medication, may be write a little card and send it in to him, that way he understands you do care, it sounds like he really is struggling with everything, the meds been away and the possibilities of further problems with mental health and he is still relitively very young to have this kind of experience, a great place for further support is youngminds, and there is another one but I will have to find it first, there is also contact a family and obvously NAS if you need to talk about how you are feeling as all I can imagine is that it must be very emotionally draining, but with reliefe at the same time so all very confusing, any time you need more company just pm or post again here. <'> JsMum Quote Share this post Link to post Share on other sites
Karen A Report post Posted January 16, 2008 Met with pead and consultant yesterday, ds refused to talk at meeting or look at anyone, general opion was that he has had psychotic episodes most likely brought on by concerta, or some form of epilsy, or the onset of psychriatric probs. He is to have blood tests, EEG as a matter of priority, in the meantime is to have resperidol 5mg twice a day and the equasym is to be phased out, all agreed he is to stay at respite until a period of calm is reached as the agression and violence is so hard to contain. DS refused to speak to me on phone last night or this morning as he feels I am abandoning him and is refusing to take medicene! Keep you posted. Hi Enid.It sounds like there was some progress yesterday.It must feel very difficult leaving him in respite but he needs support and help until he is assessed and appropriate medication sorted out.He may well not have enough awareness to understand why he needs to stay in respite but a psychotic episode does need a detailed assessment and staff that are able to manage the challenging behaviour. <'> <'> Karen. Quote Share this post Link to post Share on other sites
JsMum Report post Posted January 16, 2008 Here is the other helpline I was thinking of if you need further support. http://www.carelineuk.org/index.html JsMum Quote Share this post Link to post Share on other sites
Enid Report post Posted January 16, 2008 HI, Thank you so much for your replies. It is SO emotionally draining, I feel as though I have stepped through a sliding door into someones else`s life. As I said before he was never a problem at home, just school, and now I can`t beleive that I had to resort to respite after such a short time, now the horror is wearing off its hard to beleive we were so terrified, but we were, the rage was consuming and went on for hours and hours, at one point he ran outside and the neighbours were horrified! may have to move!! He took meds this am but refused to speak to me but rang me now and was quite normal, for a boy with ADHD ASD MLD that is! A part of me, a huge part, wants to go and get him, but a part of me is also scared, and I hate to admit that. thanks again Quote Share this post Link to post Share on other sites
Karen A Report post Posted January 16, 2008 Enid <'> <'> it is really very stressful but please don't go and get him unless respite and the consultant think DS is ok to come home.If he has epilepsy or a psychiatric problem and they can decide what caused the psychotic episode and treat it then DS may improve a lot.Karen. Quote Share this post Link to post Share on other sites
Enid Report post Posted January 24, 2008 Hi. Just an update on the situation, ds not had any violent episodes for nearly 2 weeks now, we visit an take him out 3 times a week and he is always on the phone, he seems like his normal self, although he does have a medicated look in his eyes, if next week goes as well I aim to have him home and hopefully we can get back to life as it was before! The problem is now ss are involved they want him to come home for 2 or 3 weekends to see how he goes on, I feel this is a terrible idea as he will be so anxious by sunday they would probably have a job on to get him back. Although they can`t stop me they are making me feel unreasonable and making me doubt myself, we have never had any involvment with ss before and I can`t believe how powerful they are, or think they are! Quote Share this post Link to post Share on other sites
JsMum Report post Posted January 24, 2008 Hi Enid glad things are going ok ish and I know what you mean about ss, I have had my GP going mad at them because he is not happy with our situation and we are hoping to get something sorted out, ss havent even rang us today to check that J is ok, its disgusting, we have been left to just cope, when yesterday I was very clear I couldnt go on any longer with the situation as it is now with inadequate support. If you have concerns about the ammount of risperidol you can request this to be lowered or request a second opinion, I am wondering if they have infact got the dosage mixed up, maybe its ment to be 0.5mg and not 5mg, rispiridol is a very powerful medication and he would of needed very small amounts in the beginning, and personally 5mg does sound far too high for a 12 year old, a drug actually ment for Adults. I would still make sure that your decisions are heard, and if you need further support you can ring the YOUNGMINDS parent helpline who can put intouch with a proffessional in this field, I have already been given help both proffessionally and legally so they are helpful. I would try a intergrated aproach for his return because his moods could change, and his medication is an issue and may need more specialist supervision so dont be too put off about the intergration but ensure you have a say in the days he is home and the days he is at the respite. Good luck with your first steps to him coming home, you know where we are if you need to talk about anything further. JsMum Quote Share this post Link to post Share on other sites
JsMum Report post Posted January 24, 2008 Please query the 5mg twice a day of Rispiridol, this is the same as a adult, ensure it is not 0.5MG Equals 1mg a day. which is the maximum for a child. JsMum Quote Share this post Link to post Share on other sites
Enid Report post Posted January 26, 2008 Panic over! even though I checked with pead yesterday I insisted I look at his meds when I went to respite today, it is 0.5mgs!!!!! twice a day, so one of us is hearing wrong, but how easy would that be for such a mistake to be made. DS seems fine and staff say he is def ready for home, so will visit Tues and then take him home thurs, will keep you all posted how it goes. Quote Share this post Link to post Share on other sites
Karen A Report post Posted January 26, 2008 <'> <'> That sounds like very good news Enid.I hope DS continues to do well and is able to go home on Thursday.Karen. Quote Share this post Link to post Share on other sites