Medication for J

[Malika]

For anyone interested in this continuing saga... forget what I said/they say about Strattera not affecting appetite. J now eats like a bird - banana and a drinking yoghurt for breakfast, tiny bit of couscous and chicken for lunch, keeps saying he is not hungry. If it continues like this, it becomes a problem, right? He is also not hungry in the evening. Unless it's another short-term side effect.

 

[Malika]

Thanks, MWM. I hope J will be able to steer a path through these rocks in the future, too. He is very cute, indeed - and sometimes monstrous. But I reckon all of us here know what that paradox is like.

Today he started 20 mg after 3 weeks of 18 mg and we'll do a week of that before titrating up to 25 mg. It's all a stab in the dark, isn't it - let's see what happens. Today was a better day than he's had in a while... no big crash and tantrum in the evening and he was good as gold. This is how it was for a few days before and then all went pear-shaped in the evenings again. He and his friend were tidying up his bedroom tonight, sorting out all the toys and clothes and then cleaning all his shoes! He's never done anything like that, ever... coincidence?

 

[Malika]

I don't know how this experiment is going to end up - is he going to ride through to no or tolerable side effects? Again, on the 20mg he is very, very sleepy (even though he had stopped being sleepy on the 18mg) - yesterday went to sleep in the car at lunchtime and said he had gone to sleep at school but a teacher woke him up. On the other hand, he sleeps right through the night, 10 plus hours. Has stopped eating again and complains of feeling sick - he always seems to have room for chocolate cake or sweets, on the other hand...
I don't see him at school, I don't know how his "performance" has been affected. I can see that in football and tae kwando, he is like another child - focused, able to participate fully (whereas before he would be hanging around on the edges, doing silly things). Last night in tae kwando, he was excellent - followed all the moves, does them really well. On Sunday morning we went to watch an archery class that takes place in the open air near here - he stood still and watched and then tried it out himself (doing really well). The hyperactivity means he would never have done anything like that before. It's amazing, really.
And then... he is more irritable, low-key than the usual joyous, larger than life J.
So there is good, there is bad... We continue. For the time being.

 

[InsaneCdn]

Each increase in dosage is going to have the initial side effects. We had the same thing.

 

[Confused]

Malika-I completely understand!!! I am glad he is doing better in his sports, I can just picture him there - he must be so proud of himself as well Im proud of him too. It is something.. to gain the concentration and loose some hyper energy and on the other hand gain the irritability. My son is the exact same way right now. My son already had rages,mood swings and ODD so now yikes. Now mine has been on 10mg and I have cut back to 5mg because my child is even worse if there can be worse than what he was.

Im glad your son is sleeping good at night and yes, the side effects of them being tired all day or not feeling well, I hear ya. School even sent mine home because he told him he didnt eat and he took his pills. And as far as the food, that will be up and down as well. My sons teacher as well as the internet suggested feed him before the pills and a great big breakfast, well, its still bounces one day to the next for now here with that idea.
Its hard to get them to eat a good calorie breakfast/Lunch and hopefully dinner as is but yes...tell me about them having room for junk food! Mine too.. hes soo sick and yet he goes for the chips instead of the nice dinner I made or even breakfast! Peanut Butter is great for breakfast with bread even a lil Jelly because High in calories.. more food they can try to eat the longer the pill works, and they feel better. Its soo hard tho! InsaneCdn is right about the increases of dosage tho.

 

[Rabbit]

Sending you hugs and support!

 

[Malika]

Thanks, all.
Well, the other side effect is now appearing... or is it even a side effect, or just "normal" J reappearing? The Strattera has clearly worn off by the time I pick him up from school in the evening - and he is oppositional, hyper, rude... and I get angry at being talked to so disrespectfully, ignored (he ran off when the homework boy was due to be coming, to his friend's house round the corner, even though I'd told him he had to stay just outside the house) and the evening descends into some form of chaos. And whereas for a few days he's done his homework really well, tonight it was disastrous - he'd forgotten everything, couldn't concentrate, was crying he was really tired (I'm sure he was), etc.
There seems no rhyme or reason in it... up and down. No clue what the right dosage might be, it's all guesswork....

 

[Confused]

I'm sorry it was a rough day for you. I wish you luck on the next dose if they up it. Hugs

 

[Malika]

Thank you, Confused. We saw the psychiatrist today... he administered some tests to J - apparently when we first saw him (before the Strattera) these showed dire levels of concentration capacity. Today he got everything right and the psychiatrist said the tests showed that he was now anticipating and thinking ahead, the skills he did not have before.

I have a new prescription for 25mg which the psychiatrist said would help with J's oppositionality... with all the reading I have done about Strattera, I am not nearly so confident, but let us see what happens. Next appointment is in two months' time.

The science is right and the medication is working in terms of giving J a kind of non-ADHD brain for the time it is effective. I also spoke to the principal of his school this morning and she told me everything is fine, that J is working well and they think of him as just another child. No real issues in terms of behaviour, she said. He has made friends. So... really it's as it always was, and the main problems are with me in the evening.

 

[HMBgal]

Some times the kids hold it together at school, then kind of unravel at home where it's "safe." I've seen it happen over and over again with my grandson, but so much less than it used to. He's seven and a half, not truly ADHD either, but yet stims for him had an immediate good effect in many ways. Not perfect; I miss his exuberance, and my heart breaks when I see his little hands shake. But, he knows how well he's doing and is proud of himself and his executive functioning skills have improved sooooo much. It sounds like you're seeing that with your little fellow, too. It's been a combo of us all learning techniques that work with our differently wired boy, and a wonderful teacher, and yes, probably the medications. His mother wants to try to give him a medication vacation, but his father and step mother won't hear of it, so we'll see. That's a whole 'nuther issue. Two steps forward, one back. Still progress, although aggravating as hell when you feel like that they are reverting back to an old, maladaptive behavior and won't be talked out of it. But, there just so young and immature.

 

[Malika]

Thanks for that note of encouragement, HMBgal. One detail: J is definitely ADHD! I think he's very classic, as various professionals have commented. He's got other stuff round the edges, I think - sensory stuff, learning difficulties of this and that variety - but other than that it's really just straight down the line ADHD. I miss the exuberance too.

 

[Malika]

First day on 25 mg. Hardly eating, badly constipated, hurts when he urinates... Didn't seem so tired, however. In the evening, at tae kwando, he was very tearful and hyper-sensitive, going into very public (unusual for him in this sort of setting) crying fit because the teacher told him off several times, and then refused to come out of the changing room to rejoin the class. Obviously some sort of "crashing" effect of the medication. It led to an interesting outcome in that the teacher's wife, who does the reception, told me their eldest son is hyperactive (though not formally diagnosed as it so often is not here) with real concentration problems at school. She said constant tae kwando had helped him a lot... She seems more sympathetic - the teacher isn't, really.

So we are into phase two of the experiment. Now at target dose, six weeks after we started, and we will try it for a couple of months unless the side effects get too horrible.

 

[Malika]

Could I ask for any insights about what happened today? Is it, do you think, an effect of the medication?

Second day on 25mg, up from 20mg. Ate big breakfast. He had a school workshop for one and a half hours after that - seemed fine afterwards. Then we went to see a friend and he played more or less quietly with her six year old... unprecedented, of course. Usually he is rushing here, there and everywhere, never stopping to really relate to anyone. He ate a few bits of fruit, that's it - wouldn't eat lunch. Then had football in the afternoon. Seemed okay, not as concentrated as he's been lately, kind of messing around some of the time. But staying still, not hyperactive. Then after that we had an appointment with the boy who comes to do J's homework with him, which is where it all went pear shaped. In the car J started whining and pleading for me to buy him a firework - his latest obession. My repeated "no" in as many words ended in him refusing to do homework and then... launching into a huge screaming and shouting tantrum in which he badly scratched my hand and broke a toy in anger. I insisted he stay inside til he was calm, he eventually calmed down (after insults and abusiveness) and we went out together to call on his friend, who was not there. Has eaten a few bits of chicken, wholewheat bread, butter and chocolate, a pear, lots of juice.

He then happily enough agreed to come home and is lying down in front of the DVD player, clearly tired. He is not clamouring to go out and has accepted he will go to bed after the DVD - very unusual.

He was tired and hungry at time of meltdown. But he will not eat because of the medications.

Quite apart from scandalising our landlord and lady who live right upstairs, plus the neighbours, the rage is kind of scary when it is happening. Do I just press on, again, with the new dosage, hoping the side effects will diminish and things become more stable? Is there anything I can do to offset the rage? I also feel like he is not being held accountable for what he does - hurting me, being rude and abusive - because straight away afterwards he becomes this sweet little chap again, and it is clear that he was "possessed" by something he could not control. But....

 

[tiredmommy]

I think it is called a rebound effect.

 

[Malika]

Sure, tm. What they say about Strattera, though, is that it is "supposed" to work for 24 hours, with no rebound (unlike the stimulants).

I wonder if J is metabolising the medication very quickly?

 

[tiredmommy]

He may be doing just that. I would keep a simple journal noting the day, time and circumstances of his meltdowns. That way you can show his prescribing doctor at J's next appointment.

 

[Malika]

Today was better. No major meltdowns - but then he spent much of it with my ex-husband and ex-brother in law. It was my ex-husband who had the major meltdown... but that's another story. Suffice it to say that I have more than once thought that he could well be undiagnosed ADHD.

 

[Malika]

Day six of 25mg (and J's seventh birthday...). We spent the morning together - no school as special treat, and he went to ride a pony after opening his presents, etc.

He was bright and cheerful enough until mid-day, when he started becoming irritable and very low, "flat", as well as visibly sleepy, nearly dropping off in the taxi to school. He seems, and really there is no other way to put it, drugged up - no longer hyperactive and much easier to manage, but at what price?

This may of course all wear off as side effects of the new (and target) dosage. There is also the option of giving the pill at night. But despite the real benefits we have seen so far - in football, for example, he is another child who, for the first time, is really able to play - if this is the cost of them, it is too high to pay. It is as though he is without personality, somehow, his natural, vibrant, larger than life zest and joy all extinguished.

This is why the medications are so difficult, I think. Life without them is so very difficult for the child and yet...

 

[InsaneCdn]

Benefits must outweigh the side-effects.
But unless there is a compelling reason to stop, do give it time.
Ramp-up style medications often take 4-6 weeks to fully come into effect... after reaching target dose.

 

[SuZir]

How does J himself think about medications at this point? Does he feel that there is difference and does he feel it is mostly positive or negative?

Hopefully these side effects would go down at least a bit. Being able to concentrate, even if it right now mostly shows in football and things like that, is so very important socially. And when kids get older and their ability to concentrate, and orientation to more 'rule based' plays and activities, increases, their willingness to tolerate the one who does disturbs their games and plays and isn't able to follow the rules goes down. And J is right at the brink of that age.

I remember when difficult child was little older than J now and all the other boys started to get quite serious with their playing and difficult child, while really good at sports when focusing, continued to run to wrong direction, build sand castles when supposed to be playing, stopping middle of running with the ball to look something more closely and once, very memorably, getting stuck from his toungue to goal post during very cold day's bandy game (he was playing goal, his team was in offense and he got distracted. Couldn't get himself free before the other team scored from mid field.) and so on. Adults were mostly hysterically laughing at him but those type of things made his team mates extremely angry. And not only at organized sports but at the school yard too. Really hurt him socially.