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ADHD Twins...barely coping

(42 Posts)
Chewedstring Thu 16-Jan-14 18:50:47

Hello, I'm new to mumsnet & hoping there are some understanding mums out there who know where I'm coming from. I have identical twin boys aged 9 with adhd, they have been on meds for last year which is brill for school, but out of school is a different story. we don't medicate outside of school as they need to eat & sleep & off meds their behaviour is foul.
Is hound add that my husband works away, so I am on my own in the week & trying to hold down a demanding part time job. I'm exhausted and struggling. We've just got DLA and I'm so overloaded, I don't know what to use it for to make life better.
Boys school is brilliant, but I worry about their ability to make friends - we don't get many play invitations Md I feel so isolated, such is the stigma of adhd, I tell very few people and sometimes regret telling other mums when the play dates are not returned.
There seems to be no support out there - no parenting classes in my area (midhurst, West Sussex) and CAMHS can only offer meds. I'm looking into help from LANC in horsham - does anyone have any experience of them?
I'm drinking too much, but it helps take the edge off. Even good friends don't really understand how different parenting my boys is. Any help/ advice would be greatly appreciated, sorry for the moan x

2boysnamedR Thu 16-Jan-14 19:32:30

Hi, no experience with ADHD ( my son was tested as he had a run of dangerous impulsive behaviour but scored too low on the school test).

Sounds very hard. I tell other parents if the need comes up about my sons sen, they will figure it out anyway.

I hope someone can help with ADHD here

popgoestheweezel Thu 16-Jan-14 19:36:53

My ds (almost 8) has ADHD and asd, I can't imagine what it's like with two of them- no wonder you are struggling.
Have you experimented with different strengths and release rates to find the best balance between behaviour and eating/sleeping. We found huge variation between diff ones for ds. We find the dose he is on now lasts into the evening fairly well, he has a mad half hour when it wears off but then he gets his melatonin for sleep and settles back down. Are your two on melatonin too? Our psych suggested an immediate release tab on top of the main dose if we wanted more evening stability but we find his sleep is already rubbish even with 6mg melatonin.
You say there aren't any local parenting classes but have you tried looking for a parent group? It might help to speak to someone else going through similar but even if you can't find any in real life there are plenty of us here on mumsnet SN with very similar problems.

blueeyedmonster Thu 16-Jan-14 20:16:17

Ds also had ASD and ADHD. I can't imagine two of them. He is recently diagnosed and all CAMHS could offer me is meds with the adhd clinic. I refused. She gave me a number of parent voice which is the sen outreach round here. I will call them soon. Is there anything similar in your area?

Chewedstring Thu 16-Jan-14 20:16:41

Hello Pop, thank you so much for replying. Boys are on max methylphenidate for their weight. Sleep had been ok but one ds has been struggling to get to sleep & waking most nights since summer. His imagination gets the better of him & he's scared & hates it when his brother is asleep & he's not.nIt's diff to know if it's typical or effect of meds. No haven't been on melatonin.
No parent support groups - nearest is Worthing during one of my work days. CAMHS teams have such restricted funding that they are limited in what they can offer.
It's relentless isn't it? I try so hard to be calm, but do lose it and then feel so guilty. Buys are gaining more insight into adhd and it kills me when they say ' you don't know how hard it is for me' and he's right, I don't.
When they are on meds I feel they are how they should be, at least their schooling isnt held back now..
I live for the weekends when dh is around to help. Thank you x

Chewedstring Thu 16-Jan-14 20:20:42

Hello blueeyedmonster,
No sen outreach I'm afraid. I have found meds great for boys for school and they actually like the effect it has on them. I know it's a really difficult choice though and not right for everyone. The ASD element must be challenging too. Good luck with parent voice and thank you for replying. It's good to know I'm not alone x

blueeyedmonster Thu 16-Jan-14 20:26:25

That's sad that there is not really anything around like that for you. Ah yes sorry, i meant it ass in that's all CAMHS offered me, i know it's good for some. Hope i didn't offend. Is the LANC for help?

Chewedstring Thu 16-Jan-14 20:31:10

Yes, the LANC is a private centre - have filled in forms (yes, more, x 2!) and now waiting to see what they can offer & how much. I think boys would benefit from talking to someone other than me as they approach puberty and have greater insight into adhd, so they can manage it better.
But a for us.... Difficult to know what would help- week on a desert island?! (& no definitely no offence taken x)

blueeyedmonster Thu 16-Jan-14 20:41:48

A week on a desert island sounds like bliss! I really hope they can offer some support of some sort. Maybe they would know of other places to help too.

ouryve Thu 16-Jan-14 21:09:08

DS1 (10) has ASD and ADHD and I've always joked on that I'm glad he's not twins (even a long time before any diagnosis - he was one seriously challenging baby!)

DS1 takes a different medication, but I agree with suggestions about tweaking the dose and the way it's spread through the day. Maybe they'd benefit from a lower dose at weekends, rather than a complete medication break. It might at least make it easier to keep them gainfully occupied, which would be less stressful for everyone. If they don't feel like lunch, then make them a stonkingly good, high protein breakfast before they take their morning dose.

ouryve Thu 16-Jan-14 21:09:41

Oh - and in his moments, DS1 tells me he's going to send me to jail. I tell him that I'm looking forward to the rest!

magso Thu 16-Jan-14 21:33:37

My mum always said she would not wish twins on her worst enemy! My dsis (twin) and I were both very hyperactive and impulsive as little ones! My DB was easy in comparison.
Ds (14) has ADHD with ASD and LD, and DH works away from home so I understand in part ( since we only have 1 ds) . We medicate ds at week ends now - I think he was around 8 when we found it worked better for him - and every one else, if he did not have a w/e off. We did this because school (SS -so experienced with these things) found ds was particularly at sea behaviour wise on a Monday and suggested discussing 7/7 medication with his paed. We did and it really helped him, because he was struggling with the changes. He now is able to do things at weekends and in holidays which was simply not possible before 365 medication. We have carefully controlled medication breaks (to check he still needs it) most summers when both parents are around and we are somewhere remote!!

Chewedstring Thu 16-Jan-14 22:13:28

That's really interesting about medicating 7/7, have you found weight gain a prob? At last review one son hadn't gained weight, but had grown. I do give stinking brekkie if they will eat it & equally huge dinner, but am concerned about them not eating enough to compensate for meds.

Yes the whole twin thing is quite something - they spark off each other of course, but at least they have someone who fully understands them!

I did let consultant psych at CAMHS know I was struggling - they didn't suggest 7/7 meds prob coz of weight concerns. I think we were bonkers couple of years ago - bought a caravan, can you imagine beings cooped up with 2 hyperactive kids??, needless to say alcohol level goes up!

They are the loveliest boys of course, very loving, but pretty much devoid of consideration or volume control. Love them, especially now they asleep!

popgoestheweezel Thu 16-Jan-14 22:15:54

Ds has meds everyday, I think if he is having them at all we might as well get maximum benefit. It does affect his appetite but we just give him a high protein/fat breakfast and an extra meal later on in the day when it's worn off. His sleep is worse too (not great before meds) but he is on melatonin that helps a but. I would ask for melatonin if they are having trouble dropping off, it's not so great for night time wakings though.

tallulah Thu 16-Jan-14 22:21:27

I have a 24 yo dx with ADHD at 7 yo. Right from the off he always took his meds every day, including weekends. I couldn't have coped with him unmedicated. I really don't know how you cope with 2 of them - I take my hat off to you.

Sleep was always a problem for my DS, but the meds didn't affect his appetite or his growth. He is slightly taller than DS1 and slightly shorter than DS3, neither of whom have ADHD.

popgoestheweezel Thu 16-Jan-14 22:27:29

At review this week ds had lost 1kg, psych not concerned at all though said only a prob if continues to go down. I am not worried either, most kids are fairly 'well covered' these days so when you see a slim child it's unusual but if you look back at photos of children back in the 70s/80s we were all skin and bone by comparison to today's children. I think we have sort of forgotten that children are actually naturally skinny. I keep telling dh that it is quality rather than quantity of food that counts anyway.

I was completely against meds until we reached an all time low this summer and it was clear the choice was either ds on meds (which had the potential to significantly improve the quality of his life and the rest of the family's too) or me and Dh both on anti depressants (with further deterioration in our quality of life)- it was a no brainer.

Chewedstring Thu 16-Jan-14 22:37:09

I'd be interested to know how long the meds last- my dts are on medicines xl which is slow release 40mg (they are roughly 40kg & it's supposed to be 1mg/kg I believe). They take them after breakfast & its wears off about 5pm in time for tea. What do you use,to last longer?

Chewedstring Thu 16-Jan-14 22:38:23

Medikinet! Blast predictive spelling!

popgoestheweezel Thu 16-Jan-14 23:00:43

Our psych said dosage wasn't as simple as a certain dose for the weight of child as different children react differently and metabolise meds at different rates. Ds is on 30mg exquasym (he has tried concerta XML too) and we find that if he takes at 8.30 he will be ok til 6.30 when he will have a mad half hour which is a kind of kick back when it wears off. I think he is unusual in it lasting that long though. Our psych asked us to try an additional dose immediate release at 3.30pm but when we did he didn't go to sleep until 4.30am so that was a definite no!
You could try medicating 7 days which would give you some more harmonious time at the weekends and also melatonin for the sleep which would give you some quiet evenings- that would probably help you feel a lot less frazzled.

Chewedstring Thu 16-Jan-14 23:23:33

Yes, meds at wkend sounds very appealing and would def be a happier household! I do think camhs obsess about weight- neither of my boys is skinny, in fact one is v well covered, so even more reason to give it a go. thanks so much for your replies- they are very much appreciated!

ouryve Thu 16-Jan-14 23:58:43

If they're 40kg, they're definitely a bloody good weight for 9. DS1, at 10, is about 37kg and he's a tall boy. Tends to run around the 75th centile for height and weight, occasionally shooting up in height and becoming all bony ribs. He's quite solid looking now he's not food refusing several days a week, though (anxiety related, which is why he takes atomoxetine, rather than methylphenidate)

I think, that unless they're something like 5', they can afford a lighter lunch. They need about 1600-1800 calories a day, which is easy if they get plenty of fat and protein in their diets.

If settlign to sleep is a problem, you could ask to try melatonin, which is a hormone which gives sleepy signals to the brain. It doesn't have lasting groggy effects, though.

Teawaster Fri 17-Jan-14 10:20:16

Hi my DS is on 30mg equasym slow release. He gets it at 8am and I find it wears off by 3.30. We have a prescription for 5mg quick release after school but like others it does effect his sleep. He is 12 now so he doesn't need as much sleep as he used to so sometimes I give it to him to get him through homework and at revision time for tests. But I am often will I won't I . I medicate at the weekend also. DS is a great eater and it has never impacted on his appetite apart from the first week or so

Chewedstring Fri 17-Jan-14 12:10:19

It is strange how the meds affect appetite in some, but not others. my two just dont eatbduring the day at all. i am going to try meds this weekend and see how it goes. Homework will be less of a struggle at least. So looking forward to dh coming home tonight, means an extra pair of hands AND cup of tea in bed tomorrow morning! Thank you for all the replies, it's so good to hear from people who understand x.

popgoestheweezel Fri 17-Jan-14 16:10:34

I would also consider reducing your expectations. If homework is a nightmare then write to the school and tell them that they will both be having a homework holiday for a while. My ds hasn't done any homework for months and months. Likewise for chores around the house and other rules/expectations. Decide on what is actually necessary to function e.g. no hurting, no damaging things, basic hygiene/self-care and let everything else go for now. Only go into battle over things that are worth fighting for.

Chewedstring Fri 17-Jan-14 16:33:27

Thanks pop, wise words indeed, you make a good point about expectations - both of them and of myself! We should all be kinder to ourselves & I'm going to start that with a nice glass of red! Thank you x

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