The FASD Trust
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ADHD - inattentive type treatment for FASD child

My son has ARND and also ADHD inattentive type

Starting to look at medication for the ADHD inattentive - does anyone have experience of this - what has been your experience? Appreciate one thing FASD kids have in common is they are all different but would still welcome your thoughts/observations.

Thank you

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My son has the same and is now 15. He was given Adderall. My son then seemed like a zombie and after a few weeks was talking of suicide. I took him off the drug immediately. It scared us so much that we never tried anything else. That is just our case though. It could be very different for others and I look forward to hearing from other people too.

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Thankyou for taking the time to reply - that is scary! Will proceed with caution

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It is difficult area. 1/3 are helped, 1/3 no effect. 1/3 makes it worse. Make sure the Dr is aware of latest research, keep to minimum dose and be ware that kids with fasd don't react same as ADHD kid!

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My son is almost 16 with the same diagnosis you mention. I would not give him any drugs/medication no matter what any doctors said. Its just my own opinion of course but one does hear of the damage these medications can do like northof60 has mentioned above. My own advice would be to help him find ways to cope with his condition (and I know only too well that is easier said than done!!) rather than medication. FASD/ARND is very complex and I don't think you can separate out the pieces and fix them in isolation. Is there something particular that has brought you to consider medication ?

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It's been a long road as I am sure you can appreciate and would not consider if we had not done everything else we have. Only a trial at this stage and working closely with a number of specialist - we shall tread carefully and see how it goes if the cons are too much then we shall act appropriately. Thanks for your honesty.

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Hi Suzy

Our adopted son has FAS, ADHD, relative microcephaly , sensory processing disorder, he is under the incontenince team as he has problems with his water works and his under weight and we give him extra medications to try to increase his weight. And medication to help him sleep.

All of the above is very classic systems of FASD, from a behavioural point of view he displays ADHD and autism, which is really FASD.

He is on medication for his ADHD, we discussed this at great length with our Peaditrican and we all felt he would benefit with medication. Thus, we know exactly and can recognise when he isn't in his therapeutic index zone not on his medication. We would say you would need to dicuss this with your Peaditrican with a view to what is best for your son .

Medication will affect children in different ways, we can only reflect on our current situation and we can say that he is a lot better on the medication and manageable than not.

Hope that helps d and p

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Thank you so much for sharing your experience - they are all very different and all react to meds in different ways - we are working really closely with a number of specialists and being very careful about this. But it is useful to know how others manage and what they have tried. Thanks.

Sue

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Hi

yes, one of our AC's has ADHD, and for about six months we've been using Medikinet. It makes a huge difference! We don't see any of the shocking 'zombie' response to it. But what we do see is a wonderful calmness and a fantastically different ability to focus and stay on task ! it's amazing.

One thing I would say is that some children have a reduced appetite when using this medication, and we have found this is the case for ours. It's not a problem for us as our AC would normally be craving food (actually needing something to chew rather than food) pretty much most of the time. So now that there's a little reduction in appetite, this aspect of daily life is much easier to manage too.

To put all this in perspective, for over a year after the initial adhd assessment I was reluctant to go down the medication route - with all the usual fears of my child becoming 'zombified' etc. Then, long story, but daily life was becoming so challenging for our whole family that I finally agreed to a trial period of meds. It's certainly made a huge difference for all of us, not just for our child. Nothing can compare to a calm family life.

I guess it's the same all over the country, but in our area only the Comm Paed can prescribe ADHD meds, so you will probably need to get a referral to Paed if you're not already working with them.

Good luck with it!

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Thank you so much that is really useful to hear your experience and yes definitely working with Paediatrician and CAHMS very carefully and closely!

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Hi Suzy

can i just reiterate what Wild poppies says yes, one of our AC's has ADHD, and for about six months we've been using Medikinet. It makes a huge difference! We don't see any of the shocking 'zombie' response to it. But what we do see is a wonderful calmness and a fantastically different ability to focus and stay on task ! it's amazing.

that is the same result we have had, and also the appetite is a problem, although he eats for england big portions!! we still have extra medication to try to increase his weight.

regards Dave

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Thank you that is really interesting and very kind of you to respond - will ask our paediatric about Medikinet and do some research thanks

Sue

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In very early stages of trying same medication for our son. He says it makes it easier to concentrate, so hoping less frustration at school will lead to calmer home life. Will try to keep you posted on how we progress.

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Thanks so much - we have been trying Concerta but have to say effects initially positive but fell off quite soon and probably feeling that side effects are outweighing any benefit now. May have t o go back to look at something else - its a long road

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Do go back. I've been told that it takes a while to get dose right. We've just increased our sons dose and am intrigued to see if there's a difference as he was at school since the increase

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Will do - good luck and let me know how you get on.

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Our AD has ARND and ADHD diagnoses. We've been struggling as a family. She's on melatonin to help her sleep but we've been recommended Strattera to help calm her anxiety and sensory load down to help her feel calmer and more able to focus. Lots of soul searching too re meds but the anxiety and stress is preventing her brain developing so we will be dusvussing it with our paed. I do feel that if I can help her feel calmer in herself and aid brain development it's a risk we'll consider taking. Such a responsibility.

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