Medication for J

[Malika]

Okay, day five and at lunchtime today (no school this afternoon, being Wednesday) J has - for the first time - little appetite, is very hyper and oppositional, very "scattered".

So the side effects seemed to be getting better and now have worsened. Is all this "normal"?

Sorry about this blow by blow account but this is of course a new experience.

 

[BusynMember]

It could be normal or it could be trouble to come. Like I said, I've taken many medications and it was never a good thing when I had a bad reaction right off the bat, at least for me. It tended to be better for me (and this is just ME) long term if I had NO real side effects, other than maybe mild fatigue, at the beginning. On the medications that made me hyper, things only got worse.

You will have to wait and see. Sometimes it was two weeks before side effects were intolerable for me, if they were going to be intolerable, and sometimes it actually was after the medications had been in my system for three months that I'd suddenly get toxic and start to hallucinate. Going off the medications was as difficult as being on a bad one, so be careful of that too. Removing an antidepressant causes a withdrawal effect that can be seen as needing the medication. It is not simple! This drug is not like stimulants where it is pretty easy to discontinue with no bad effects. Antidepressants are difficult for withdrawal. Straterra is an SNRI antidepressant, in the family of Effexor, I believe (could be wrong there).

 

[shellyd67]

I wish you and J the very best of luck.

 

[Malika]

I rang the psychiatrist this afternoon and left a message saying I would like to speak with him about J's side effects. He may or may not ring back...
I have now read SO many horror stories about Strattera - and significantly fewer wholehearted success stories. The sleepiness I could live with as a temporary side effect, and the rashes, but the increased aggression/oppositionality? It is harder to see that as a passing phenomenon, though it might be?? Certainly it's the reason why a lot of people give up on Strattera.
Dosage is such guess-work too... Doctor has said he should be on 10 mg for a week, increasing to 20 mg for 2 weeks - but I can't do that because he is going to stay with his dad and it just isn't a good idea to have him on an increased dose with presumably increased side effects while there. I could up the dose tomorrow, after five days, or wait until two weeks has elapsed... of course I don't want to act without consultation with the psychiatrist, which is why I want to speak to him.
Jeez, this is not an easy decision to make for people. Hoping for benefits and an improved quality of life for a youngster but one has to battle through side effects, not knowing when and if they will end...

 

[InsaneCdn]

Wish I could be more help.
difficult child is on a whole cocktail of high-side-effect medications with... minimal side effects.
Including Strattera.

For us, Strattera was a total success - minimal side effects (some nausea the first couple weeks), and a huge improvement to have the 24/7 baseline of some level of focus and cooperation.

But that's just our story...

 

[Malika]

So are bad initial side effects a sign that Strattera is not going to work, I wonder? At what point does one decide that the side effects just aren't worth the glimmer of hope?
psychiatrist didn't ring back and I couldn't ring again because of needing to look after J. Tomorrow we try again...

 

[BusynMember]

It may not be for all people, but an initial poor reaction to a medication for me meant things were only going to get worse. The longer he is on it, the harder it will be for him to get off of it. I am not trying to discourage you. I just want you to have a realistic idea of what could happen if the medication doesn't work. I don't like that he is already more hyped up and agitated. If it were my kid, and I realize this is a personal decision, I would have already removed the drug. Sonic had one horrible, horrible day on Prozac in which he seemed crazy manic and that was enough for me. Some people are sensitive to medication and do not do well on normal doses and either need very small doses or to be free of certain medications altogether. I have learned to be very cautious with medication. What dose is he on? What dose does the doctor want him on?

 

[Malika]

It's not that simple (for me), otherwise I would of course have stopped the experiment. J has not been consistently more hyper and agitated - he was more aggressive the first two days, then that seemed to get better, then this lunchtime he was very hyper and antsy (but calmer this afternoon). Everyone, everyone says about this medication that you have to wait for it to take effect - so I feel I have to ride through the side effects to get to that point. But it's hard to keep faith. He is on 10 mg, lowest possible dose.

 

[Malika]

I understand. I hope it really does a good job for cute little J.

 

[InsaneCdn]

The first dosage level of Strattera is the worst... that's what our psychiatrist told us, anyway, and our experience seems to be similar to that. difficult child had to go up a lot more levels than J will have to, to reach an effective dose (add something like 10 years to J... it really changes the dosages!) so we didn't get any real positive impact for 4-6 weeks. If J is starting at 10, and target is 20, I would expect to get past the adjustments, and into the benefits, in 2-3 weeks... not sure if he needs higher dose (20) to get positive impact.

 

[Malika]

Thanks, that's helpful. J weighs 25/26 kg and the "target" for Strattera is supposed to be 1.2 times the kg weight - so around 28 mg? But it's sold in boxes of 10,18, 25, 40 and 60 mg, each at the same expensive price so for the moment I don't see how I can afford to go beyond 25 mg. I've read studies saying a maintenance dose of .5 mg per kg of body weight is just as effective.
Day six today and he slept well - 10 hours - waking just once. His mood seems pleasant and cheerful. His nose is still running but he doesn't have a temperature. Still has some raised spots. I was seriously thinking of stopping it all last night but I guess it's good for one more day (at least!)

 

[InsaneCdn]

the "target" for Strattera is supposed to be 1.2 times the kg weight - so around 28 mg?

not sure that's accurate.
At that rate, difficult child would be needing 200+ mg... and the psychiatrist won't go over 120 (most people, 100 is max, but due to difficult child's sheer size, psychiatrist would allow 120... but we didn't need to go THAT high)

 

[Malika]

Eli Lilly's own guidelines - 1.2 mg per kg of body weight, to a maximum of 100 mg. So that does not hold for people who are heavier, you are right.

 

[Malika]

Despite what they say about Strattera being "24 hour coverage", in fact J is definitely experiencing some sort of "crash" in the evening after school - more hyper, more wound up, more nervy than he usually is.
I spoke to the psychiatrist this afternoon. He didn't sound worried about the side effects. Agreed we should keep J on 10 mg for another week and then I ring him to decide what to do in the light of what is happening.
In the meantime, a huge abcess has developed in the middle of an incoming molar. Coincidence?

 

[InsaneCdn]

Does he take it with breakfast? or with supper?
It's supposed to be 24 hour coverage, but... for difficult child, it's more like 20 hours. He takes his with breakfast, so if his dose is wearing a bit thin, it's when he's sleeping anyway.

 

[Malika]

He takes it after breakfast - what the psychiatrist prescribed. This morning... started shouting and screaming and became very aggressive when he couldn't find his beloved bow and arrow (one he made himself out of sticks and an elastic band), accusing me of taking it, screaming insults and (not usual) trying to hit and kick me. I also lost it and didn't do very well, I'm afraid - ended up giving him a slap. Eventually we found it at which point he becomes amenable and an ordinary child again, apologising to me.
Worst case scenario is that the medications just make him worse and have no beneficial effect. I guess we will up the dose to 20 mg for a week in a week's time and then go to 25 mg over four weeks to see what that does.

 

[Malika]

Hi Steely. Nice to hear from you. How are you??
Thanks for your thoughts. As far as I can see this, in my new "changed" thinking about medication for ADHD, it is a judgement that has to be taken in the light of what side effects manifest: are those side effects worse and more dangerous than the side effects of living with untreated ADHD (dangerous impulsivity, inability to learn properly at school, few or unstable friendships, inability to participate in most social situations, etc). You're right about the side effects for Strattera and lots of people seem to have horror stories about it.
At the same time, J's reaction is (so far) less alarming to his reaction to the stimulant, which he took for two days about six months ago. He went kind of crazy on it, and became much more violent and disturbed than he has so far on this. I just prefer the idea of something that doesn't affect appetite and sleep the way the stims do, that doesn't (in theory) have a crashing rebound effect.
Today J goes to stay with his dad and family for a few days. I did manage to have a reasonably constructive conversation with my ex-husband yesterday about J, ADHD and the medications. He accepts him taking the medication though of course not understanding the science (like most people and like me pre-J!), he doesn't really understand why nothing else works at well. If it works... I also said to him something I have long thought - that he himself could be undiagnosed ADHD (coincidence of course since he is not J's biological father) - he did not disagree. I think it's why he and J have the particular chemistry they do.
Day seven... J seems fine so far. Less sleepy yesterday and his running nose and rash have cleared up somewhat. We will see.

 

[Steely]

I have lots of thoughts on this - but the main thing to remember is that Strattera is not just approved for ADHD but it is also an SSRI. SSRI's can produce aggressive behavior, as can Stimulants for ADHD like Ritalin. But they are in 2 completely different categories. SSRI's for children can cause a lot of side effects. In the US, they are prescribed with a lot of warnings. Unfortunately far too many stims are prescribed in the US without any warnings. Just be aware that he is trialing an SSRI that can also be used as an ADHD medication. It is a dual medication, that affects the brain quite differently than a stimulant.

 

[Steely]

I am sorry, it is an SNRI, not an SSRI. It failed in research studies as an anti-depressant, but was found to have an incredible impact on ADHD.
That said, it obviously affects the person's brain in different ways than a non anti-depressant, like a stimulant. It is interesting because in the states SSRIs and SNRIs are given with extreme caution to kids under 18. Yet stims are handed out like candy. Confusing for all of us, I know. HUGS. There are no straight answers here, it is just trial and error.
FWIW, I am not a proponent of stims for kids - at all. I think Strattera is a viable alternative. Matt tried it, and had really aggressive side effects. But, you know, he is Matt. Most medications have not worked for him.

 

[BusynMember]

I'm wondering if J is also in therapy.

No drug on the face of the earth can teach J coping skills or how to appropriately socialize. medications plus therapy seem to work best. Without the therapy it is like a component is missing. It doesn't matter if he is willing to go up to more kids to play with them if he doesn't know how, for example. Trust me, been there/done that. medications are great if they work, but they are not a fix-all.