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Treated as neurotic parent AGAIN - history repeating

(5 Posts)
chocolaterose20 Mon 19-Sep-16 18:26:46

Just a need to post and vent after a frustrating phone call. Concerned as DS (11) struggling to cope with his ADHD although meds have been a massive help. He's coming home upset after school again as he's struggling to stay out of trouble and get on with his friends on his current dosage. Like before, he's crying, shaking, curled on floor rocking saying he 'hates his life' sad . The paediatric dept say there's no other help available and all they can do is see him for review every 6 months to check blood pressure etc, but there's nothing else and no increase in meds (currently 30mg Equsym). In frustration rang a parent helpline and had a horrible conversation. Essentially, she was suggesting that I need to try and stay 'emotionally detached' and have a 'perspective' and remember sometimes to just 'offer a hug'. OMG, this has given me flashbacks to when he was 3 and I was desperately trying to get help and had same reaction from nursery etc. Of course hugs and calmness are crucial, but not enough on their own at times like this. After that we had another 6 years of struggling to help him as much as poss on our own until his final diagnosis when it all started to reach crisis point and poor boy was having some sort of breakdown. At the time was so relieved for diagnosis and also shocked thinking, "It needs to get this desperate before any b***er listens???!!!" Just feeling v tired of lack of understanding of psychological strain these poor kids under and devastated that it's just down to us again, struggling to educate ourselves and manage what we can. Sigh. chocolate and cake had no medicinal effect so far today (for me!) so onto a nice glass of wine tonight I think!

Crasterwaves Mon 19-Sep-16 20:59:41

I actually came on here to post how alone and unsupported I feel - child no dx yet and couldn't not post when I read yours.

I don't know if it helps but I'm sending you a huge brew and cake and a bunch of flowers

I really hope things get a bit better for your ds soon and I'm so sorry you and he are going through this.

dietcokeandwine Mon 19-Sep-16 22:17:51

Oh OP that sounds so hard. flowers and wine for you.

Awful unhelpful conversation aside, how long has your ds been on the medication? Sorry if this is something you already know but there are two type of meds for ADHD management - stimulant (methylphenidate such as equasym and medikinet) and non stimulant (atomoxetine brand name strattera) - your ds is obviously on a stimulant one but if it's not working and he's struggling to cope I wonder if it's worth asking the paed if he can try a non stimulant one instead?

Your post struck a chord with me as my ds (12, with dx of Aspergers and ADHD inattentive) was initially prescribed methylphenidate and it was awful - the meds made him hyper stressed and aggressive, he struggled to sleep, he was incredibly tearful and emotional all the time which completely negated any benefits they might have had. I had a conversation with his paed who suggested changing to atomoxetine (strattera) and it's been so so much better. Not a magic bullet by any stretch and we have ups and very definite downs. But the pros of the medication absolutely out weigh the cons, whereas with methylphenidate it was the other way round. Just thought I'd mention it, sorry if it's of no help though cake

Craster flowers and wine for you too

It is horrible, so horrible when you see them struggling so much. Ds in his worst moments used to curl on his bed and whimper 'I just don't want to live this life' which broke my heart sad

chocolaterose20 Tue 20-Sep-16 08:46:14

Thank you Craster and dietcoke. I'm sorry to hear that you're going through similar, but it's also such relief to hear other people understand and that I'm not alone - it's actually brought a tear to my eye! shock

Craster - hope get dx soon, I feel for you and know how incredibly hard it can be. Years of schools telling us ADHD doesn't really exist/it's just naughty children angry (am teacher myself) and endless, useless behavioural charts (OMG the charts - I still have nausea flashbacks to this day at memory). Then one teacher saved our lives by saying 'I think ADHD - will you support dx?'. Nearly fell off chair, hugged him and cried with relief all at same time lol.

Craster - thanks for kind suggestions. Having lots problems with paediatric dept, generally unapproachable and unhelpful think we're just unlucky our area. Last psych was always abrupt and rude and one day actually talked about DS in front of him in third person 'will HE be alright to take that?' and referred to meds side effects as 'can make kids go bit..' and then actually wriggled her finger next to her head in a 'crazy' person mime! Shocker. DS was v upset by it 'I'm already a freak, will the other kids think I'm crazy too if on the meds?'. Rang afterwards and asked politely for change of consultant for personal reasons, didn't go into details or make official complaint. But now when ring secretary really rude and unhelpful on phone. I should have just cut to the chase, rung up angry, emotional and unreasonable and made a complaint anyway! May have to look into other meds. DS also has had times when used to say exact same thing. Breaks heart to think of all other kids out there at moment struggling like ours.

Anyway, enough with my theraputic venting and ranting! flowers to both of you. As keep telling DS, in 20-30 years when you grown up, there will be more help/cures/understanding, and they'll look back on us as being in dark age - we've just got hang in there grin

Oblomov16 Tue 20-Sep-16 21:01:45

Poor you.
My friend who has just had her ds2 diagnosed ADHD is being seen every 3 months to re-assess meds. 6 months does sound a long time. Can you phone and ask if there is anyone who can see him in the interim?

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