Medication Dilemma: Everytime I read... - CHADD's ADHD Pare...

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Medication Dilemma

Bowie1211 profile image
11 Replies

Everytime I read about a parents decision to start medication for their child and how they saw an immediate, same day benefit j feel so defeated. My 7 year old son was diagnosed with inattentive ADHD in April. If you met him it would be hard to believe he’s not combined presentation because he is definitely hyperactive also and has the classic motor always running symptom. Since the diagnosis we have been on 1mg of Guanfacine and also tried Quillivant, Ritalin, Adderall. He had negative side effects with the last 3. And I’ve felt tortured over this decision to medicate him and now feel like we are experimenting on him. I truly hate it. His dr suggested upping the guanfacine since he has seemed to tolerate that one. We’re at 2mg for the past week. He had some big emotional outbursts and aggression initially. That seems to have calmed down. But now he fluctuates between his usual hyperactivity and tiredness, sometimes napping during the day. He’s also extra scared lately at night and wanting to sleep with me. I have no idea if the med is upping his anxiety or fears …. It’s just so hard to determine what the medications are doing and if it’s truly helping or just causing other undesirable effects. I plan to keep him on the increased dose for at least one more week and see how the school week goes for him. I feel so lost and worried about all of this. I just want to help him and see some improvements. How do parents deal with the medication journey? I’d give anything to be one of the lucky families who just tries something and has it work on day 1. To think of the long road ahead is so daunting ….

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Bowie1211
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11 Replies
Bowie1211 profile image
Bowie1211

I guess I’ll add that I understand how every medication affects each child differently. It’s just so frustrating there isn’t more knowledge about what works for kids and why. I hate the trial and error of these drugs. We are working with a medication specialist at his psychologists office after feeling his pediatrician wasnt the right one to help navigate the medication journey. Maybe I’m looking for a unicorn but I’m not ok trading off decreased appetite or sleepless nights for fewer meltdowns or increased attention. I mean he’s 7! Kids need a healthy diet and good sleep for their development. Just not sure we will ever find something that works for our son that doesn’t also cause unhealthy side effects

SecretAgentIEP profile image
SecretAgentIEP

Try splitting guanfacine, 1 mg in am and 1 mg in pm. Perhaps try low dosage of vyvanse too?

NewbieParent profile image
NewbieParent

We r in same boat. Methylphenidate and Adderall didn't work or at least had side effects that we didn't want. We are at 1mg Guanfacine but that doesn't seem to do have. Any effect after first 3-4 days of sleepiness. We will likely try 2mg next but feel the guilt of treating him like a guinea pig especially because he doesn't want any meds. Hopefully we will converge to the magical pill soon! Keeping fingers crossed. Wish u all the very best. It is a journey but hopefully one that will end soon with the destination u expect!

Trying1978 profile image
Trying1978

Understand the experimenting on part. It just sucks!

Totally understand your frustration and it does hurt seeing our children ‘not themselves’ and ‘suffering’. I felt so guilty seeing my son suffering on ‘first line of treatment stimulants’ yet psychiatrist just insisting that ‘that’s how my son is’, nothing to do with the side effects…

In my head I was then thinking I wish I could just flip and tell psychiatrist ‘Why don’t you try Methylphenidate yourself and see how you will be feeling- paranoid, anxious, not able to sleep and eat, having ataxia like body movements, self harming- and maybe then you will stop prescribing this s… to little children’. Plus it’s well known that the same medication has different side effects in kids and adults hence often 2 lists for side effects.

What I would like to point out- non stimulants (there are a few medications in this group) all work slightly differently, even on different neurotransmitters. Non stimulants don’t kick in immediately and the idea is that they work 24/7 so there is no ‘rebound’ and all should be smooth from the moment child gets up until they go to bed. So actually don’t give up, if Guanfacine doesn’t work then try the other medication from non stimulant category. Maybe Qelbree.

Also, do read about Guanfacine and what is the time it takes to achieve full ‘therapeutic effect’.

For example Atomoxetine that my son is on it says that some effect may be soon like even within 2 week but generally 6 weeks is the time when you should see the full therapeutic effect- once the child is on a right dose in relation to their body weight.

Every child is different, so let’s say my son had never had any side effects on Atomoxetine- no nausea, no appetite suppression, no tummy ache, no sedation. Atomoxetine helps with anxiety and mood and I feel that what he needed most. (Most children with ADHD have anxiety and stimulants exacerbate anxiety so why do psychiatrists keep prescribing stimulants ?!)

So as I said- my son on Atomoxetine was fine from the start. Yet his class mate on Atomoxetine at first for many weeks was very sedated - falling asleep with a head on a table during lunch for like 6 first weeks. And then it stabilised for him and he’s fine but even though my son and this boy are the same weight my son needs 40mg and the other boy is achieving ‘therapeutic effect’ on 25mg. I actually had to be quite persistent with the psychiatrist and pointing out that on lower dose (he kept my son on lower dose for a good few months) my son didn’t have a ‘therapeutic effect’. So I read BNF and nice.org.uk extended medication information to actually have a back up that I do know the right dose per 1kg of body weight. Then I had to be very sensitive in the appointment, not to ‘offend’ psychiatrist by sounding like I am ‘telling him’ to increase. It was just like a game where me and my husband knew we wanted increase but we had to play it right so it would come from the psychiatrist himself.

Since we swapped to Atomoxetine I never looked back. He’s happy, no anxiety, he can do sports clubs until 6pm, get home and still be with it and not having melt downs, eat and enjoy his food, no meltdown with transitions from doing fun stuff like playing or watching TV to maths tuition or homework and chores, evening routine and bed at 8pm. He’s less oppositional. He can take in information better and retain- a bit better focus. Or course it’s not perfect. He still needs to run about in the garden a lot- like a dog…

I was very anxious about giving him Atomoxetine because when reading medication leaflet it just on paper didn’t look good. It all sounded that it will be again a failure and putting our son through a hell. Yet it’s fine for him.

Just in case, recently I asked his doctor to do bloods- liver function, kidneys, full blood count. I wanted to be sure that the medication is not affecting his organs…

My son has never been a great eater (just seems not to ever feel hungry even though he loves trying new food, he loves sea food- even raw fish like sashimi, liver etc all the fancy food that normally kids don’t like, he loves, and going to foreign restaurants etc). I was worried that Atomoxetine would still negatively affect his appetite but it appears he’s fine. His sleep is fine too.

If you are worried about your son’s suppressed appetite then ask your doctor about Periactin. In the UK it’s over the counter and no prescription needed. I don’t know how it is in the US or Canada but I know it’s very commonly used in Canada as appetite stimulant in children.

I learnt about Periactin from parents here on this forum. Then I read a lot of journal papers about it- how it’s used in various countries in Europe and US, Canada. The medication leaflet for Periactin is also ‘scary’ pointing out all the possible side effects. Then it also can’t be used with specific medications (a long list) so in multi pharmacotherapy doctor needs to check if there aren’t contraindications with other meds the child is taking.

Sorry for this rambling. I hope you find here bits that are useful and help you to make the right decision about your child’s medication.

Home1818 profile image
Home1818

I couldn’t relate to this more. My son is also 7yo though he is diagnosed with combined type ADHD. We’ve tried several meds over the last year and he had negative reactions to nearly all. We are on 1mg of Guanfacine in the AM and 1mg in the PM. We also started 1mg of risperidone daily which I wish we never started and I cannot wait to get him off. My son also wakes up in the middle of the night scared almost every night now. He’s also expressing more anxiety/fears during the day.

The “experimenting” is awful. I’m starting to feel confused/skeptical of what is a side effect of the meds and what is just him. And even with the meds he is still struggling behaviorally in school, so it makes me question why we’re putting him through it.

I do think finding providers who have a similar philosophy and can support you is very helpful. I don’t think we’ve found the right psychiatrist yet, but we have other providers whose input has been invaluable. I don’t have much else to offer other than understanding and support. I’m sorry you and your son are going through this and I hope you are able to find something that works soon. You’re not alone.

SecretAgentIEP profile image
SecretAgentIEP in reply to Home1818

For the 1mg of Guanfacine in the AM and 1mg in the PM, is this the ER? I have tried both and it seems the ER has more side effects. Do you try both or notice any difference? Thanks!

Momtrying profile image
Momtrying

I know it’s hard! But don’t give up. It seems like an eternity when you’re trying out different meds but when you finally find what’s right and you can go maybe two years without changing anything, it’s wonderful! And your child probably won’t remember a lot of the tough times. You will, but kids move on pretty easily. I’m not sure how many non stimulants you’ve tried but that might help with the anxiety part? You are not alone and don’t feel bad about your parenting! You are trying your best.

Oh, and this is just my opinion and prob not right for everyone, but my sons behavior at home and at school and his ability to get through his classes is more important than what he eats, in my eyes at least. I feel like as he grows, we can work out his nutrition, but for now he needs to be able to survive in his world and without his stimulant medication, which does decreases appetite, he was not able to do that. I just try to make sure that the little bit he does. It has some nutrition in it.

Good luck, we are here for you!

ELucas13 profile image
ELucas13

It may seem like people started medicating and bam! ADHD managed! Not true for, I have no stats for this, but probably 99% of those with ADHD. I don't know that I ever have met someone who started the first medication and had a slam dunk. It took us two years. Not to discourage you, but it can take a while and yes, it feels like your child is a guinea pig and you are putting him/her through a needless bout of torture.

However, when you find that cocktail that works, the trial and error is worth that effort. We even took medication breaks when we needed a total reset.

Our success came from taking 2 mg guanfacine extended release in combo with 10 mg Vyvanse at 6:30 am and another 10 mg Vyvanse at 11:30 am. This weird timing and dosage was where we found ultimate success. It's not perfect, but for us, close enough!

When we began guanfacine, we needed to have our son take it at night until he acclimated to the medication because it made him crazy tired. Now we don't (knock on wood) have much side effect from either medication.

We had awful side effects with other stimulants such as anxiety, fear at night, etc. It was worse than any ADHD symptom. However, we got there. And you can too!

julieboolie profile image
julieboolie

((Hugs)) I and so with you!! It's been many months and a lot of trials over here too. My son is 6 and the anxiety was so much worse on the stimulants than not, so we decided to stop trying those for a while. The non-stimulants have been a bit better but not a miracle yet. We're on Abilify (generic version) and on week 5 of it. It's helping some, but still working on it. He is sleepy on it and falls asleep at school sometimes. He's also taking Clonidine with it, which is also sleepy. Bonus is he sleeps well at night. He's been sick a lot the last few weeks - so much stuff going around at school-he barely eats. Once he's well (Hopefully soon! Its been a long few weeks!🙄🤯) I hope he'll put some weight back on! Ironically weight gain is a negative side effect of his medication, but one we haven't had!!

It's a long journey, but it is a bit better with this combination. I hope it'll keep getting better!! ☺️

SecretAgentIEP profile image
SecretAgentIEP

Try getting a genetic test so that the test can tell which medicines ought to work or not...rather than having child go through too many trials without an individualized profile

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