Just ADHD?


I’m writing this post today in the hope of finding out some information.

My son is ten years old and takes Ritalin twice a day. Doctors describe him as having severe ADHD. The Ritalin helps massively. He is much less impulsive and less active.

However, his grades have become worse, not better, and he has these terrible dark moods. The length of time the Ritalin works varies from day-to-day, even though he takes the same quantity at all times.

Naturally, we have returned to the doctors (we’ve been to several) and in the last few weeks a new EEG has led to the discovery of two epileptic episodes within the brain during a twenty-minute period. The doctor asked if there’s a history of epilepsy in the family, but there is not. After some discussion Asperger’s syndrome was also proposed as a possible diagnosis. The neurologist explained to us, that sometimes ADHD hides the initial Asperger’s diagnosis.

Our new pediatrician describes my son as ‘being in his own world’ and having extreme mood swings. He has also hinted at some kind of depression or perhaps even manic depression. He wants our son to be re-diagnosed which I’m 100% in favour of, but so far his efforts have resulted in no appointments being made.

We have decided under no circumstances to return to his previous psychiatrist, because she is incompetent.

In the meantime, I feel the need to ‘do something’ to help my son.

One of the issues that concerns me the most at the moment is his dark moods. He can be cheery one minute, then something happens and he just changes. He becomes really depressed or extremely aggressive and this can happen pretty much in an instant. I’ve worked out that there’s always a trigger. Either he’s disappointed by something, or he can’t do something he wants and then he just flips.

I have tried various methods to calm him down or cheer him up. But he cannot be distracted, he will not talk to me, jokes and laughter make him more annoyed, if I give him quiet time, say in his room, he destroys his own things. He will not play, or read. He would watch TV in this mood, or play computer games, but if I allow him to do this his aggressiveness becomes much worse. Much, much worse.

Yesterday, we had a typical episode. He planned to play with a friend, but the friend let him down. He became more and more distressed. I made excuses for the friend and suggested him playing with a different friend. He refused. I encouraged him to draw, to read, to go outside, to play with his sisters. His sisters tried to talk to him or play with him but he ran away and hid. He stormed around the house, took things from my room, and yelled at me. I had to stop him hitting his head repeatedly on a metal bar. At certain points he cried a little but then he held it in. He lashed out at various objects in the house.

At some point I picked him up and carried him out of the house and sat on the swing with him, rocking him backwards and forwards while stroking his hair. Neither of us spoke, he just lay there in a fetal position, in my arms, not speaking, not crying. Nothing. After twenty minutes he started kicking the frame of the swing and then I started to talk to him.

He was much calmer. But behaved erratically until bed time, invading personal space, showing extreme levels of affection, shouting ‘I love you’ to all members of the family, talking incessantly, throwing himself against things (floor/wall), making noises etc.

Yesterday, I could lift him outside and sit on the swing with him. But only just. I am not much bigger or much stronger than him and it scares me. I need to find another way of being able to deal with this behaviour that will also work.

I know that my son adores me and would not hurt me purposefully (or his sisters) but I no longer trust him when he’s in a rage. He has already threatened his sisters with a kitchen knife and a hammer.

I am afraid.

For him and for us.

Has anyone out there been through this too? Do you have any suggestions?

I have tried reading up on various disorders, but I feel lost.

Do some of these ‘symptoms’ match up with your child’s disorder?

  • Mood swings
  • Dark moods
  • Talking out of context in the conversation
  • Noises (whistling/sound effects all day)
  • Aggressive outbursts often towards self but also towards others and to objects
  • Poor grades but average or better than average intelligence while on Ritalin
  • Extreme affection
  • Lack of awareness of the personal space of others
  • Stealing
  • Lying
  • Fantasizing (inventing a situation and pretending its true)
  • Extreme helpfulness
  • Enjoys destructive play
  • Difficulty sleeping
  • Cries easily
  • Can also be very happy and laugh a lot
  • Stuttering (quite new, seems to be when he’s calm)
  • Hiding
  • Once a mood is over, it’s like the whole incident never occurred
  • Seeming lack of conscience

A little more specific

  • Emptying out products (like mouthwash, shampoo, perfume)
  • De-hanging doors (not angry, more impulse)
  • Collecting rubbish (ie empty cartons, toilet roll tubes)
  • Obsession with tampons (thrown out of window many times, in pockets, in schoolbag)

I tried to list things that are still highly prevalent despite the Ritalin.

And I also want to stress that these types of behaviour are not always present. He has days where he is perfectly behaved too, but I do have the feeling that he does not have control over these backward and forward swings.

I would greatly appreciate any comments from parents who may have or have had similar experiences.

53 thoughts on “Just ADHD?”

  1. Hi hon

    I’m so sorry your son – and you and your husband – have to go thru this.

    I don’t have any information for you, but I will definitely RT and share. I hope you get the answers your after. I think it’s great you’re getting another opinion and rediagnosing. Can’t hurt, right?

    All my best to you. xxx

  2. Hi There,
    I came across your story via a friend and im so sorry to hear of what you are going through and i can imagine it as being a battle for you and your family. My sister has 2 sons, youngest has autism and the eldest also has aspergers & ADD. If you want you can email me at and i can tell you a little about her situation and how she has been tackling it. Mel xxx

  3. Reading your post it is hard to find the right words to say as words can offer only so much comfort. I feel for you and your family and I really hope you find a supportive doctor who can help both you and your son make things clearer. I am in no way a professional and so can’t help properly with your aim to find out a diagnosis. The only thing I can say from watching many many documentaries on Asperger’s is that with this ‘condition’ (sorry, that’s a horrible word I find but can’t think of a better right now) the person is unable to read emotion in others. Do you find this with your son? Can he tell when you are upset, angry, happy, sad from your tone and facial expressions? If he can ‘read’ this then he can’t have Asperger’s but again, this is just from what I’ve read seen in my own studies out of curiosity.

    1. Thank you for commenting.
      I have read bits and pieces on Asperger’s and this is exactly one of the points that makes me feel very unsure. He can read our emotions and he can also empathise very well. To the unqualified eye (like mine) I read through a list of symptoms and think I can tick that, but no, that one’s not him at all.
      The new doctor we have is very nice and I feel that he cares about our situation, but I think he’s over-run with patients and he cannot diagnose because he’s not a psychiatrist. I hope that he can find us someone to help us soon (in general you have to wait up to a year for the first appointment at a private practice). I think he’s trying to organise something that will be quicker and more effective, I hope that we’ll here something very soon.

  4. I saw your post via Jodie. I can relate to a lot of this but would prefer not to talk publicly. Friend me on facebook … I’m Bronwyn Marquardt … and I will email you then. Or you can email me direct via http://www.maidinaustralia.com
    Don’t despair, there is a lot of help out there for you and your son.
    Looking forward to emailing or chatting further.
    Bronnie xo

  5. I know here in the US there are numerous support groups for Asperger’s, and the parents have lots of great information to share with each other. I would ask your doctor if he could direct you to some of those groups where you live. It sounds like you might need a multi-disiplinary medical team for your son. You will be his best advocate and voice. You may have already started a daily dairy for him, but if you haven’t this might be a good time to start. It is clear you love your son dearly. I would love to pray for your son and family.

    1. I’m British (as is my son) but we live in Germany. To be honest, I think in general, the US is way ahead with regard to ADHD/autism than here in Germany. Part of the problem here is trying to get through the system.
      I don’t know what a multi-disiplinary medical team is but it sounds impressive. Our new paediatrician says that we need support for our family and for our son, but so far we’re still waiting. That may sound ‘complainy’ it’s not. He’s the first doctor (and we’ve been through a few now) who has actually said such a thing, I left his office near to tears, just because I felt he ‘got it’.
      I had attempted diary’s with the school, in order to pass back and forward information between the teachers and myself, but the teachers preferred to use it as a book to complain about my son, which as it was in his bag, and he could read it, wasn’t helpful. But I did not think of keeping a diary of his behaviour for myself. I think this is a fantastic idea, and I will start it right away. I may see some behaviour patterns that I hadn’t noticed before…
      Thank you!

      1. You are very welcome. Multi-disiplinary is just a group of medical professionals who have different specialties, but consult with each other to formulate a plan for the patient’s care. It isn’t always a smooth road, but it is nice to get different perspectives. Getting heard is a great step forward! Pulling for you and all yours!

      2. I think this man is very helpful.This is Craig. I have been working hard to update the site, http://www.AmericanAutismSociety.org

        It has a lot of new content which you will find very useful. I just completed a new 15 minute video on Vacation Tips for Kids with Autism and Asperger’s Syndrome. Check it out!

        http://www.americanautismsociety.org/vacation-tips-for-kids-with-autism-or-aspergers-syndrome/

        Or simply click here:
        http://tinyurl.com/autismvacation

        And listen in to today’s AUTISM SPECTRUM RADIO Show

        Today’s topics:
        * Effective steps to help your child in school
        * Tips for making vacations pleasant and stress free

        TODAY (MONDAY), I will have a 1-hour weekly internet radio show on http://ztalkradio.com/

        WHEN: Every Monday, 6:00 PM EST (3:00 PM PST)

        LENGTH OF SHOW: 1 hour

        WHERE: On Z-Talk radio: http://www.ztalkradio.com

        WHAT IS THE SHOW CALLED? Autism Spectrum Radio

        QUESTIONS?

        1. Do I need a radio to listen to the show?
        NO. You listen over the internet.

        2. Can I call in and ask questions during the show?
        YES. That is the purpose of the show. To talk about autism and Asperger’s syndrome and answer your questions.

        3. When will we be broadcasting?
        Every Monday at 6:00 PM EST

        Craig Kendall
        http://www.AspergersSociety.org
        http://www.AmericanAutismSociety.org

        P.O. Box 1257, Solana Beach, CA 92075, USA

        To unsubscribe or change subscriber options visit:
        http://www.aweber.com/z/r/?7AxsLGystCzsrGycHAzMtEa0nByMHAzsnA==

  6. wow this sounds exactly like my son Joshua – he actually tried to kill himself when he was 7 and has made several other attempts and references to doing so since (he is now 11) He was initially diagnosed with ADHD and is on Byphentin (a longer lasting form of ritalin) originally he was on the ritalin 2x day but after the 3 hours it would wear off resulting in mood swings. He was diagnosed with Aspergers and is currently undergoing more testing to determine if he actually has a mood disorder such as bipolar. A few years ago he was also put on respiradal which has been a huge help in dealing with his aggressive and often violent outbursts. He too has threatened with knives, scissors etc… so we now have them put away out of his vision and reach.
    You are doing the right thing in changing Doctors and continuing to push for a proper diagnosis – in my opinion it does sound like much more than ADHD. You are a strong woman but having a child like this is a daily struggle – I know. Do you have any type of support systrm for yourself and family?
    Chantel

    1. Chantel, I was so happy to read your reply (I know that’s kind of not appropriate, but you know what I mean, right?).

      We actually have two locked rooms and a safe (for the keys) now in our house. Honestly, if someone burgled us they’d have a total shock when they got the safe home!!

      He hasn’t attempted suicide, but he has threatened it. From one minute to the next he can be totally happy and then find his life so crap that it’s not worth living. I’ve of course told the doctor this. It’s very scary.

      We have no support system whatsoever and this worries me a lot. Because some days I cope really well, but others I feel very much at the bottom of my reserve tank. As there is no respite, I have no idea how to fill those reserves back up.
      It’s one of the reasons that I’m doing the challenges (101 in 1001), so I make sure that I’m doing things for myself and the rest of my family. My husband is supportive and I have a lot of good friends, but none of them are in the same situation.

      It’s good to hear your opinion, because it’s exactly the same thing I have been thinking for a long time. That it’s not just ADHD. Did Joshua’s grades also go down after starting on Ritalin? Aden is so unstable on the medicine, although he’s tried different brands and he’s now on one that supposed to last between 7 and 8 hours (he gets a second dose in the afternoon too) I still feel like often after just 3 hours it’s gone.

      I think that he’s more unstable the less he sleeps (fair enough really) but he often can’t get himself to sleep and then the next day his moods are more changeable. However, doctors have refused to give him medication to help him sleep. I’ve tried different things from camomile tea to bathing to autogenes CD’s to music to reading, but he gets up and wanders around (getting into mischief – hence the locked doors).

  7. sorry I forgot to add that each child with aspergers will have similar symptoms but none will be exactly alike – for example my son actually has learned to read many facial expressions and can show some empathy towards others which is very ‘untypical’ of those with aspergers but possible:)

    1. Very interesting because it’s one of the things that doesn’t fit our son. He definitely can read expressions, at least the basic ones, though he does have trouble keeping up with conversations, often talking about a completely different subject or a subject that finished up long before.

      He often couldn’t relate to what the girls were playing, but I thought that might have been a boy/girl thing.

      Very often I have the feeling he over-empathises. If his little sister has a small fall for example he dramatises a lot and makes a huge fuss. And especially with me he has the tendency to run at me if I say, ‘bump’ my knee and hug me until I’m squashed, everything is with huge emphasis.

      He becomes hysterical if an animal dies. A few weeks ago he became hysterical for several hours because a bird died in a cartoon.

      Also he’s really affectionate and feels little embarrassment. If I walked into his classroom, he would have no hesitation in running up to me (almost knocking me off my feet) and yelling I love you in front of the other children. Or he might hold my hand or kiss my arm. I don’t mind him being affectionate, but I see that it separates him from other children. If they laugh at him though, he will stop, but he may then become aggressive.

      What do you think?

  8. Hi, your story was passed on through Jodie and I feel for you, I have a son who they think is brushing on aspergers and have days when I am in deep denial about what is happening because he comes across as so normal and other days when it’s obvious there is something going on with him. The mood swings sound like pure frustration at his routine being upset, his friend letting him down would be an example of this. Routine is hugely important to someone with aspergers, if they know what they have to do every day they feel safer and are able to be independant, I always let him know well in advance if there is a change in plans and that seems to help him stay calm .my son will watch the telly and if it’s a comedy will watch our expressions to see if it supposed to be funny or not because he does’nt seem to get what’s happening on the telly. Reading expressions and emotions and tone of voice is the main thing with aspergers, does he have a good imgination, can he find things to play with on his own without being prompted? Can he start a conversation off and talk about the same things as other people, He may only be brushing on it as well and adhd may be the bigger problem. I hope you get a diagnosis soon to help improve things for him and your family.

    1. Hi Jo, thank you for your comment.

      I understand you being in denial, some days my son is so well behaved and tries so hard I’m astounded. Then other days it’s like he’s been replaced by a completely different boy.

      I remember reading about liking being in a routine. I have worked with him with a calendar for a while, so he knows what he’s doing and when. I would definitely describe him as being somewhat focussed on time. But he’s not frustrated if there’s a positive disruption. For instance, him seeing his friend was only arranged that morning at school, and he felt very happy about that. If the change is something he likes, he doesn’t mind about his routine being disrupted at all. He also likes to try and stay up later etc and often forgets our set sequences (ie eats his breakfast but then has be reminded to brush his teeth). And it’s also only since he was put on Ritalin (aged 9) that he managed to be able to dress himself. Before that he’d have everything on back-to-front/inside out, forget items etc. (Once he even came home after sport with his hooded top on backwards and had not noticed).
      Do you think, with Asperger’s the positive changes would also frustrate him?

      In answer to your questions: He laughs often (without looking at us), he does not have a good imagination, often needs prompting to play, he can start a conversation, but if we’re discussing something (which we do every day at family meal times) has trouble sticking with the topic, or working out what the topic is, sometimes he’s way back on a previous topic. I’ve noticed lately that he often seems very unsure of himself.

      I would really appreciate your feedback.

  9. I read this with tears in my eyes and an increasingly heavy heart. In my ignorance, I had no idea it was like this. I have no help to offer, I’m afraid, except to say I’m out here, sending you many thoughts and I sincerely hope you can get to see a good, sympathetic psychiatrist soon.

    1. Thank you. That’s really nice. All supportive messages are very welcome, especially on bad days. I really hope we will see a good psychiatrist soon too. Otherwise we may be needing two!!

  10. Some of the mood swing extremes you mention remind me of my brother as a child – he alternated between being the meanest kid I knew to a giddily happy and tenderhearted boy. As an adult he was diagnosed as bipolar, and I see someone above has mentioned this disorder as well as a possibility.

    But it does sound like your son has other things going on and I pray that you find someone who can help your family put a name to it and come up with the best way to help him.

    1. Thank you Patti.

      He definitely needs to be reassessed. I looked up bipolar in children at length after reading in your comment. Some of the symptoms absolutely fit, but so do some of the symptoms for Asperger’s.

      I think once we have a name for it, like you say, we can work on the best way forward to give him the most support possible to help him make the most of his life.

      It gives me strength to read these comments and see that other people recognise traits from my son. I want to be able to help my son with what he has in the right way.

  11. Hi Sarah, I am touched by your post on your son. i wish that a magical wand could make things easier, but there isn’t. I think you are a very courageous women, and a wonderful mother. Finding out how to help your son must take so much energy, and raising 4 kids is truly a piece of work!!!
    I can only send you warm thoughts and hope that you will find a way to make your son’s life better and smoother…:)

    1. Thank you!

      Sometimes I have a lot of energy and I feel pretty motivated, but at other times I feel worn out and feel I only achieve the absolute bare essentials in a day.

      Writing this article left me feeling pretty rotten yesterday. But the comments are re-motivating me and hopefully by tomorrow I’ll hopefully be fighting fit again (I need to be, tomorrow another child of ours is being evaluated).

  12. It’s lovely that your boy throws himself as you because mine does’nt like much affection at all,He does seem to show some of the traits, they are big on time, more a rigidity about daily tasks, if he is okay about his friend not being able to play, that’s really good and showing affection towards you is really good too. If he able to show empathy that is also really good, My boy used to walk around the house for hours before he could finally think of something to do, I used to wonder why he could’nt just get on with it like I had to when i was a child. Since the learning support at the school brought it to our attention things have made a lot more sense, we now make sure he looks us in the eye when he talks to us, i suggest 5 or 6 things that he could do when he can’t think of anything and also make sure at school he asks when he can’t do something. he’s clever so we don’t get him to repeat back instructions given because he will parrot them back he has to explain wht he has to do. He does’nt seem bothered about making friends, he has one friend he has played with for years and that’s all he wants. not concentrating on the topic in hand could be part of it, but then little boys are terrible for listening anyway. your wee boy does seem to show some traits but then again showing empathy and reading faces he does seem to be able to do so maybe he is just brushing on it! I agree that you do need support and it does seem to take ages for a proper diagnosis, a mothers instinct is usually right, maybe look up support groups and see if they can offer any help as well. They are who they are though we can’t change them, all we can do is love them and try and help them get on in life and as I am finding out this year when they do get help from there teachers and family they do start to get on and improve. But they do need support from school family and friends all they all need to be singing from the same hymn sheet. I hope I’m not lecturing you no doubt know some of this already, I hope you get your diagnosis soon.

    1. Firstly Jo, I want to thank you again for your comments. And for the time you’ve taken to answer my post.

      I spent quite a long time yesterday on the website you linked me too, and it is very informative. It’s so much better when you hear of a useful website from another parent because when you type the word Asperger’s in google say, it comes up with 50,000 results of which most are not too useful!! The website showed that there’s a link between ADHD, dyslexia, epilepsy and Asperger’s. This was also of particular interest to me because my son is a diagnosed dylexic (as is my daughter – but she’s much, much worse), has shown in an EEG to have two epileptic episodes and from the descriptions on the site (and other parents who have commented) some Asperger’s symptoms. I was sure (though it had never been diagnosed) that my son had Tourettes. Not the shouting things out part (at least so far) but the tics. Just before he started taking Ritalin he started having tics on a daily basis. He would smash his head on the table and be completely unaware that he had done it. His shoulder would fly up and hit him in the face, he would stand up while eating then look at us baffled, because he didn’t remember standing up.
      It disturbed me a great deal to watch, though he did seem relatively unbothered by the experience (just sometimes surprised or confused). The day he started taking Ritalin the tics stopped completely. Not long after he started taking Ritalin he got sick and was in and out of hospital for 3 1/2 months, during that time, for a period of a month he was not allowed to take Ritalin because they were unsure as to the cause of the internal bleeding problem but they eventually surmised it had come about through an infection that he had had. Anyway within days of stopping Ritalin, the tics started again.
      I have since read that Tourettes is sometimes present in people with ADHD and that Ritalin can stop the tics. It can also cause the tics. I feel a little unsure now though, perhaps those tics were a symptom of something else? Like epilespy… What I really need is to sit with a doctor for a whole day and tell them the WHOLE story.

      I had looked already for local support groups for children with ADHD (there are none) but I will look into Asperger’s too.

      The school makes a massive difference. My son has been through many teachers and mostly they are stressed and can’t deal with him. However, in September he’ll start a new school where they have a completely different approach. It would be great if we could have a proper diagnosis before then so that we can inform the school and start in work together approach.

  13. hello lovely,

    I dont have much advice to offer, I used to work with children with autism and it does sound like he displays some of the characteristics but I am in no way equipped to make a diagnosis.

    Hope the medical profession start helping you out and stay strong.

    xx

    1. Hi Jane,
      Thank you!
      I’ve spoken to our doctor’s receptionist again this morning and we have a new ‘telephone appointment’ next Wednesday. I don’t want to be too enthusiastic, because most times I wait on a telephone call from a doctor, it doesn’t actually arrive. At all. But this time: I’m to call. On a special number! What can go wrong? OK… He might not pick up…

  14. I’m afraid I have no advice to give, but I am so happy to see so much wonderful advice and support here for you. It would be terrifying to feel alone, trying to deal with something so utterly complex. Please keep us updated and let us know if the diary helps – I also think that is a brilliant idea. Wishing you all the very best.

    Kim xx

    1. The diary is a great idea. The internet is a wonderful tool too. Apart from being able to unload, it’s amazing to receive so much support and advice. I was more than a little teary yesterday after the amazing response.

  15. My middle son suffers ADHD. He is 7 years old. He will be 8 in August.
    After much uncertainty and concerns I was left unsure if I wanted to medicate him.The developemental paediatrician sent us to the University to have an IQ assesment carried otu to see what his IQ was and to determine if he deffinately had ADHD as our general paediatrician thought he may have been ADHD but wasnt 100%certain.
    I took him for the IQ assesment which came back to our suprise of having an IQ of 97% but at school he was having difficulty with sight words. His spelling was shocking, simple words such as was, look how, etc he couldnt understand and his teacher said he couldnt sit still at all. He is a wonder on the computer and palystation and reads at a higher level. He is top of his grade for reading and he is very mechanically minded and notices things that everyone wouldnt think to notice, but all this was suffering because of his ADHD.
    I was very skeptical about medicating him as of all the side effects that comes with it.
    6 weeks ago I finally decided to try the medication after so much frustration because I thought what more could I loose as we had hit rock bottom.
    His developemental paediatrician started by prescribing Ritalin 10mg 3 times a day for the 1st 2 weeks but started gradually building up from a half tablet and by the end of the 2 weeks it was a whole tablet 3 times a day.
    How Ritalin works is it gradually builds up and peaks and declines, this is why it is 3 times a day. He had it at 7.30 am 11.30am and 3.30 pm.
    After the 2 weeks we saw our doctor again. My sons teacher had to also respond to the doctor via fax to advise how he was going in those 2 weeks and if she had noticed changes our any side effects from him.
    The teacher noticed after day 5 that he was calmer, so it didnt take affect immediately.
    At the end of week 2 we went back to our doctor and she then changed him over to Concerta 36mg once a day only, but this works a little differently to Ritalin it builds up and works at a steady pace of a straight line all day long before dropping down at the end instead of having these high peaks up and down by the Ritalin.
    It has now been 4 weeks on the Concerta and I am finding him as everyone else that has noticed alot more calmer and not so fidgety. He does have tears some days at the end of the day as when the medication is wearing of it makes him a little teary which the Doctor had advised me would possibly happen.
    His Psychologist did not know he had started his mediaction as she was aware I was holding off and He saw her on Monday and she told me that was the 1st time he sat there patiently and the 1st time she was able to speak to him with his entire attention although he was teary. Once I explained he started the medication she understood and commented how attentive and calm he was.
    We would also contstantly go through him always mum Im bored mum Im full I dont want any more food and screaming really loud when something upset him, no matter where we were. Shopping centres , church parties, anywhere he would scream at anyone about his issue at that particular moment and his anger, he would punch, bite and other to vent his anger, but he is the sweetest boy at other times. Structualy he is tiny for his age, hence why we are also seeing a dietician for him as well as the paediatrician the psychologist and he also does occupational therapy, so I can completely understand all your frustration.
    I am in Australia and am very happy with my developental paediatrician. Not sure where you are but if you want I can pass on my doctors phone number to you if you want to speak to another doctor.
    I honestly have to say I should have started him alot early. It does have its problems as it suppress his appetite which was already been an issue for us and causes insomnia so this is another issue, but he is so calm and not fidgetting and his concentration is amazing now.
    If you are not getting the answers you are seeking I suggest seeking another doctors opinion and possibly the Ritalin may not be the correct medication for your son. there are other mediactions available out there.
    Please dont give up hope.
    wishing you all the best for you and your son.
    kindest regards Trisia

    1. Trisha I really thank you from the bottom of my heart for your comment.

      So, firstly, I’ll tell you that I am British but I live in Germany.

      The problems with my son really hit home when he started school. Before that he was always boisterous and wild, often doing his own thing, played the clown but at Kindergarten they were happy enough for him to start school age 6 (they can also start age 7) and we went along with it because in Britain kids start age 5 or even 4, so I already thought it was late.

      The problems started up within the first few weeks of school, but doctors put the issues down to me having had a bad accident at home and being laid up for 3 months, a new baby in the household, an inexperienced teacher, being the second youngest in the class, German being his second language, missing his dad (I’m divorced) etc… I went along with her opinion at first, but more and more I found I was really struggling. It seemed to me that my son had lost all interest in learning (though before starting school he’d been really excited), and I could not for the life of me get him to do his homework. The teacher had taken to screaming not only at him but also at me (even in the corridor): she told me he’s abnormal and should go to a school for children whose parents can’t deal with them anymore. In the meantime our doctor left her practice (personal reasons) so we had to start again with another doctor, who was hopeless. So we went to a third. She found my son delightful. Clever, responsive, and generally unproblematic. In the meantime we had been in the headmasters office on many occasions, either being complained about or complaining too. As the system here generally means that a child stays with the same teacher for 2 years we finally insisted on having my son resit the first grade. I wanted to home school at this point, but it’s illegal here.
      So we started again with a new teacher whom we already knew through a previous child. At first things looked better, but then the problems started to build up. She also became very stressed by his behaviour. Fair enough: he started a fire, ran out in the road on a school trip, did no work at all, disrupted the class constantly. She came to us with a list of symptoms for ADHD. Then the headmaster told me my child should be on Ritalin. (I didn’t take that very well) Meantime I went back and forth to the doctor. My son became more and more impulsive. We were regular hospital visitors through his impulsive deeds and I begged all around for advice and help. He would sit under the table in class, try to climb out of the window to touch the moon, unscrew every fixture and fitting in the house (the toilet seat was a regular target), he could not sit still, not write things down and if he did you had no chance of reading it, he was constantly bored, obsessed with computers/TV (still is), he’d walk out of school in the middle of a lesson, could not sit in the seat and would wander freely around the classroom, would hide letters from the teacher/homework/homework book in bushes on the way home from school. He approached strangers freely and wanted to help them load their van, finish their garden, use their toilet, help him ‘rescue’ a dead bird. I had people contacting me constantly to tell me what a terrible/delightful boy I had.
      Our doctor was really sceptical about ADHD and warned me thoroughly on the dangers of Ritalin, but because things were steadily getting worse and not better (and I was beating down her door) she decided that my son should be tested for a high IQ and also for ADHD. Though she suspected the former. Referral in hand, I called the number of a highly recommended psychiatrist and had to wait … Deep breath … 10 months for an appointment.
      In that 10 months life went mad.
      All of the problems magnified, and he also became aggressive. Once we had the diagnosis I still could not bring myself to put him on Ritalin. The 2 doctors were opposed to each other on this and I still felt the diagnosis was not done thoroughly enough, The psychiatrist spent only 10 minutes with my son. She told us about alternative things to try. Homoeopathic medicine is massive here in Germany, so we tried that, we added supplements, changed diet, stopped tv/computer, deleted sugar/e-numbers, tried alternative discipline techniques. Nothing helped. Actually, looking back the whole situation just got worse and worse.
      Then we tried Ritalin. And the difference was incredible. But as you’ve read in my post there are still problems that I’m not at all sure belong to the ADHD. I have since been told my son has really extreme ADHD. That he’ll probably always have it. But that after puberty it should be a little easier to manage.

      On reading your reply I really felt the need to tell you all of this so that you know you are not alone. Just email me through my contact me form if you would like to talk about anything privately.

      The decision to use Ritalin is not an easy one. I struggled with it a lot. People still criticise me for it now. But I’m really glad that he takes it now. He’s much less impulsive. We’re no where near so often at the hospital. The impulsive part of my son’s ADHD is the strongest part of ADHD for him. He has told me himself he feels much happier on the medicine. He’s more accepted at school and for the first time in 4 years he sits next to another student. Last year guests actually turned up to his birthday party.

      Like you, my son is not so hungry on Ritalin. Before he was super thin but had an insatiable appetite. I always know when it’s wearing off because he says repeatedly I’m hungry. Our psychiatrist was concerned about him losing weight because he was already underweight. I make sure he eats well before the first tablet, then I don’t give him the second one until he’s eaten (unless he’s really ‘off’ then I give it while he’s eating), then he can eat as much as he wants later in the day. So far that has kept his weight stable.

      Have you had your son checked for dyslexia? Two of my four children have dyslexia, it often coincides with ADHD. It would be a good explanation as to why there would be difficulties with writing small words. If you notice patters such as repeatedly spelling words they once spelt correctly wrong, using capitals inappropriately, missing out vowels, putting letters wrong way round ie pas q, b as d, or the word pink could be written as pikn/pik/pnk. Can he spot his own mistakes or does he not see them? My daughter could also read words she couldn’t write.

      Keep in touch. I am interested to hear how things go with your son.

  16. Oh Darlin’!
    You could have been describing my son then 😦

    It’s probably not what you want to hear but he was originally misdiagnosed with ADD and later changed to aspergers.

    I now believe that he has BOTH. ANd it is a common co-morbid to ASDs.

    My heart is breaking for you after reading what you and your family has been through.

    Just remember that NONE of this is a result of anything that you have or haven’t done.

    I’m always telling other mother’s that as we tend to blame ourselves in one way or another 😦

    I hope you get some answers soon. There are some great sites out there that would give you some more information such as http://www.tonyattwood.com
    and http://www.asperger-advice.com/asperger-symptoms.html

    (( hugs ))

    and

    1. Thank you Fi. I will spend time on these sites today.

      You’re right. Part of being a mother seems to be feeling guilty. When I read your post yesterday I was moved to tears by your act of kindness and understanding.
      I’m really focussed on having him properly diagnosed (I really hope for no misdiagnosis) so I can actually deal better with the issues. If I understand why he’s doing something, then I feel sure I can figure out a way to handle the situation.

      ((hugs back))

  17. Sorry, not a parent of ADHD child, but you may want to look on the American Speech-Language and Hearing Association (ASHA) website for articles and references.

  18. I have a friend whose son has Asperger’s and wasn’t diagnosed until he was almost 10. Poor kid, he had a lot of behavioral issues all those years and nobody knew how to handle him. Some of your son’s behaviors could match Asperger’s but they could also match bipolar. Only a competent psychiatrist and a helpful pediatrician will be able to do a full study of your son to figure out his “condition”, “disorder” so he can help proper treatment and back on track.

    Imagine there are millions of people worldwide with such symptoms that never get diagnosed a treated. Your son is lucky enough to have you, a caring mom on his side, to help him get better.

    Looks like you’ve got a lot of parents supporting you in your quest for answers, that’s great news!

    1. Critics believe that ADHD is an excuse for bad parenting and did not exist years ago. This is of course not true. Actually years ago, children with ADHD often ended up in institutions, those that survived their own impulses that is. So my son is lucky on many levels, including when he lives.

      I think the keyword in your first paragraph is ‘competent’. I hope that with all our switching and changing, pushing and pulling a competent psychiatrist is exactly what we’ll find.

      How is your friend’s son doing now?

  19. Sarah,
    I have zero experience with this, so can’t offer any real help at all, but can offer my support, wishes for courage and strength, best wishes and HUGS!

    My first thoughts would be to throw a few IDEAS out there. It’s up to you to know if *any* of them make any sense in your situation at all.

    1) join an on-line group anywhere in the world where the group is active, helpful, supportive, informative, resourceful and welcoming. My first instinct is that you need real information and support from others going through this on a daily basis.
    This would help you know you are *not* facing this alone.

    2) Once you have built up an on-line network of knowledge, support and strength, go looking for a local group. Probably it sounds like the local group would likely be less “mature” in status, maybe knowledge, good Dr. contact lists, medications, etc and you may have to start a local group yourself. Do whatever you have to, to find other families in the same situation, take out an advert in the local paper? The Group in (1) will be your reinforcement and encouragement.

    3) Once you have even a very small group of local families who are in the same situation, set up a network. Devise a way to work together, meet at regular intervals do research and compare notes. Make it clear that you are there for them and that it would be great if they were there for you. Do stuff together so that the kids become friends too?
    Maybe you will find someone close enough to babysit for you once in a while and you for them, they won’t freak out if you son is having a bad day when they are looking after him and visa versa. Hopefully they will be the shoulder to cry on, the person to phone, someone who really understands first hand how the local thoughts in school/medical/social departments are up to date (or not).

    4) whilst your son naturally has a genuine need of extra attention and care, do remember to take personal time out for yourself, your husband, and your other kids.
    Hopefully a network of families in (3) could help you have a kid-free weekend and in turn you could offer the same, remember to spend individual time with your other kids, one-on-one board game, a walk, crafts or cooking, a tiny budget shopping spree.
    (I recommend second hand shops, second hand books etc)

    5) Write about it here often… clearly from these comments alone there are people who DO understand better than I ever can… I CAN however still offer a big HUGS and a “you-go-Girl!” encouragement. If you know people are thinking of you it can make the world of difference, lift your day and give you strength to carry on.

    6) Realise that unless you strike the jackpot and find an active, welcoming local group, you may need to set up a local group from scratch. Remember that you are in this for the long-haul and remember why.
    My reasoning is that logically ANY effort you put in will (eventually) be paid back ten-fold either in your son’s future prospects, your family life or both. It has to be worth a go. I’m not saying it will necessarily be easy.
    I for one… offer to be here to cheer you on 🙂 HUGS!!!

    7) I really have no clue what you are going though, if none of this “advice” sounds like anything you can use, then don’t! No guilt required. No offense taken.

    1. Thank you so much for your support, ideas and hugs.

      To be honest at the moment I’m finding motivation a key issue. That and energy. I suspect they go hand in hand. I have looked for a local support group for ADHD. The ‘local’ one is really pretty far away. My husband did contact them for information with regard to EEG neurofeedback and changing doctors, but his impression was that they were pretty ‘clueless’.

      I think part of the problem is that parents are worn out from having an ADHD child and also the way the school works parents are made to feel shame for the behaviour of the child. My attitude as a British person tends to be culturally somewhat different. Some people, of course find that refreshing. For example, my impression of disciplining a child at primary school, here is that say a child does not write out their school work quickly enough, they will get it as homework, and if that homework is not done they will be given detention. If the child didn’t write the homework down then often as a parent you don’t know what the homework is, so just suddenly the child has detention, in first grade. Then if homework/school work is not written neatly enough it has to be redone (despite ADHD). I admit, I found this rather disturbing. But a lot of parents seem to feel this is, generally the right way forward, having been brought up the same way.
      Then when teachers call parents to tell them there’s a problem they make out that your child is the only one have a problem. I regularly scratch beneath the surface, just being the type of person I am and it’s not true at all. But I think it all lends to a ‘shame’ culture which I could imagine is one of the reasons why there aren’t any local ADHD groups nearby.

      I had been contemplating setting up an online forum, because of the amount of hits I get to do with ADHD. A lot of people are out there looking for answers. Of course, this would not offer the opportunities you are suggesting.

      I am aware that I really need a network of support. We have good friends (really lovely) but no ADHD support (or Asperger’s or bipolar, whatever he has) and no family support. Our eldest two now watch our son and our 4yo sometimes when we nip out to a local restaurant, it’s in the next street. But I feel it’s too much responsibility to go further afield. (We feed them sit them in front of the tv with a DVD and are back by the time it finishes mobile in hand and the number of the restaurant programmed in the telephone too).

      Lately I’ve been pestering my husband that we should adopt a Leih-oma. It’s an older lady who would take on the children as her own grandchildren. Perhaps she did not have children herself, or they live far away, or her children did not have children. A friend of mine has one, she comes to visit once a week, and babysits sometimes. They go out together sometimes and she’s around on birthdays. I asked my friend if I could share hers but the Leih-oma is too busy with the ‘families’ she has already adopted. I haven’t found another one yet, but I have my ear to the ground!!

      I’ve enjoyed reading through your ideas. I now have even more ideas racing around in my head, and that’s a good thing!!

      So thank you!!

  20. Try http://www.tonyattwood.com.au He has 25yrs experience in this field- there is a clinic in Australia and his book The Complete Guide to Asperger’s Syndrome is highly recommended. QLD phone number on his site. Alternatively hospitals will have a Family Therapy Unit you could try. Good luck x

  21. Let me first say, that I commend you for seeking further advice, and advocating for your son. It is very frustrating and can be very isolating! Don’t give p, the answers are out there, though sometimes, it leads to even more questions, as it seems to be in your situation.
    I am a mom of 4 daughters. There are different medical issues in our family, but I found this while searching for more info for my middle child. She has epilepsy, and ADHD, and slight learning disabilities. She displays some of the symptoms you mentioned.
    You had said you had an EEG. Do you know which part of the brain was showing the epileptiform abnormalities? This can be very important….. I would also highly recommend you looking up something called Limbic Rage Seizures. See if it fits your current situation…..
    I do wish you the very best of luck……

    1. Hi Tonya,
      Thanks so much for your comment.
      No I don’t know which part of the brain was showing the abnormalities. The doctor just told us to take it further.
      Since that day, quite a lot has happened. Last week we ended up in the emergency psychiatric unit which has led to a rushed through appointment in the coming week.
      I am hoping that we will soon have more knowledge about what we’re dealing with.
      I will look up Limbic Rage Seizures – thanks for that.
      All the best with your four daughters, (I have 3 daughters too, as well as my son :-))

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