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More Than Meets The Eye - Karen's Musings
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estherchaya
estherchaya
More Than Meets The Eye

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J has been doing pretty well on the Clonidine patch/Daytrana patch combination for the past couple months.  It's not perfect, and the mornings and evenings are pretty atrocious, but at least he can function during the day at school or camp and we know he's safe.  But the problem with it was that even without the Daytrana, J's anxiety levels are really debilitating, and the Daytrana is especially bad about heightening his natural propensity for anxiety of any kind.  For example, he has such a severe phobia of bugs that he got to a point that he literally could not walk out of the house at times, could not go to sleep in his room by himself, and could not be left alone in his room, for fear of being over taken by bugs, real or imagined.  (this is but one example).

We have, in the past, tried one medication to help control the anxiety - Remeron, which has the advantage of helping with insomnia and also tends to work as an appetite stimulant - which J needs (his appetite is seriously suppressed on the Daytrana, so we work hard to get calories in him, and, in fact, have started even supplementing his calories with calorie boosters).  Unfortunately, the Remeron backfired and the side effects were awful, so it only lasted a couple days before we had to nix that trial.  That was a few months ago.

But we realized we needed to try something new, because we couldn't be moving into summer with a child who was petrified to go outside - particularly with summer camp starting.  And so Ye Olde Developmental Pediatrician recommended starting him on an SSRI, which might have the added benefit of helping him with mood regulation - another much needed area for attention (but secondary to the ADHD and anxiety, so we just hadn't gotten there yet).  I was skeptical that we would be successful with the SSRI solely on the basis of getting him to take it.  After all, we've got kind of a sketchy history of getting J to take medicine for more than a couple weeks at a time.

To my great delight and surprise, despite the fact that the medicine tastes revolting, we have successfully disguised it in about 3 ounces of CocaCola (aka Nectar of the gods) for about three weeks now, without any complaint from J (he knows he's taking medicine - we're not tricking him about that - but he has consistently told us that he doesn't taste it in the coke).  We started at laughably tiny doses and have gone up in teeney tiny increments (and are still below a normal starting dose for children), but it has, so far, been a real miracle for him.  His anxiety level has gone down significantly and he is completely functional now.  The only remaining anxiety he seems to have on a regular basis is social anxiety based around camp/making friends/etc and we're working with him on that. 

Another interesting side effect is that he's been more willing to take oral medication in general - a day or two after starting the SSRI, he started getting some allergy symptoms and was having difficulty sleeping and Seth suggested to him that he could take some Claritin.  We were both laughing inside knowing full-well that J would never take him up on such an offer, but J said, "Okay, I'll take the medicine."  After we picked ourselves up off the floor from our shock, Seth gave J the Claritin (which he took without complaint) and J went back to bed.  Twice, we've even been able to give J a short-acting ADHD medication when we've needed to extend the life of his ADHD medication into the evening hours - something which we never thought would be possible at this point in time.  Ye Olde Develpmental Pediatrician's hope is that once we get some stability on the SSRI dosing (which should be any day now), we can start working on transitioning J to taking a short acting ADHD medicine each morning to help make the mornings much less difficult for all involved.  I'm hoping this isn't too optimistic a goal.

But we do walk a fine line with the SSRI.  The number one side effect with the kids who take it is hyperactivity/overactivation of ADHD symptoms.  Which is funny, since the ADHD medication can overactivate anxiety symptoms.  It's like putting a dehumidifier and a humidfier in the same room and letting them duke it out.  And people wonder why I say it feels, sometimes, like I'm walking a tightrope - always an impossible balancing act.  For the moment, we seem to have found a reasonable balance, but the balance, of course, gets thrown off as he grows, and we have to continually adjust. 

None of this is perfect, or easy, but I must say - it is so nice to see something working for once.  It makes it so much easier to want to get through each day.  Really. 

Interestingly, J is delighted to be taking oral medication again for one reason - because we're back to his reward chart for taking medication.  He gets X's on his chart for taking his medication.  Each X is worth $0.15 and when he fills up his chart, he gets to go purchase something with his money.   Yesterday we helped him out a bit since he's been so great about taking it and we got him a new Transformer (a metal one in hopes that it won't fall apart as quickly as his plastic ones tend to do).  AND as a special treat from us to encourage him to keep up the good work... we got him the Transformers movie, which he's been begging to see. 

He is in little boy heaven.

What he doesn't know is that we have Star Wars waiting in reserve for him, for the next time I need a motivational treat for him.  He's been begging to see that, too.  :)
 

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Comments
yeishlitikvah From: yeishlitikvah Date: July 12th, 2009 04:54 am (UTC) (Link)
I'm so happy to hear that J has turned a corner in maturity that's SOO big that he is willingly taking medication.

I'm also relieved for you that his willingness and a working combination really aids to relieve some of your tightrope walking sans net.
estherchaya From: estherchaya Date: July 12th, 2009 11:17 am (UTC) (Link)
it's not a corner he's turned in maturity - it's a direct result of the Prozac (which he's only willing to take orally because he can't taste it at all) - and he's only willing to take oral ADHD medication on an ad hoc basis. It would be nice if he could take the oral ADHD medication more regularly - because frankly, they work better. If we can get him to the point that he can take an extended release ADHD medication - THEN I will feel that he's really turned a corner. But that I'll believe when I see it, and I don't expect that for several years.
hannahsarah From: hannahsarah Date: July 12th, 2009 06:44 am (UTC) (Link)
Poor little guy!

Which SSRI is he on? I take Zoloft, with a side of Depakote and BuSpar.

The BuSpar has been a MIRACLE for helping me with PTSD. After many years of waking up screaming several times a night, I am finally able to not only sleep through the night, but I can even have someone sleep next to me without setting off a full blown panic attack. If I'm leaving the house I take 15mg a half hour before I go out and it helps immensely with claustrophobia and social anxiety. I think I'd be a complete recluse and a nervous wreck without it.
estherchaya From: estherchaya Date: July 12th, 2009 11:19 am (UTC) (Link)
He's on Prozac, which is the best-studied SSRI in children. He's taking 0.7ml - a normal STARTING children's dose is 1ml (the strength is 5mg/ml where a normal adult dosage is 20-40mg).
hannahsarah From: hannahsarah Date: July 12th, 2009 06:14 pm (UTC) (Link)
Thanks for the info.

There's another woman on my friends list who has a son who is 5. Her son has severe bipolar depression and ADHD, and she's having a very hard time finding the right medications for him.
estherchaya From: estherchaya Date: July 12th, 2009 11:39 pm (UTC) (Link)
I can't tell you about kids, but with adults, bipolar disorder is treated very differently than depression - in terms of the medications used, that is. (bipolar disorder is treated with lithium, usually, and in fact treating bipolar with SSRIs can cause severe manic episodes, so it's bad juju all around... like I said, I don't know if this is the same with kids, but I would assume so)
hannahsarah From: hannahsarah Date: July 13th, 2009 12:16 am (UTC) (Link)
I'm bipolar also. Lithium gave me severe aphasia, to the point where I didn't talk to anyone for over a week, because I just plain couldn't. If the house was ablaze, I couldn't even come up with the word for "FIRE".

I also had hand tremors so badly that I needed two hands to get a fork from my plate to my mouth, and even then the food would often shake off of the fork and into my lap. I had tremors so badly that it would wake me up from a sound sleep.

One of the biggest problems with Lithium is that if you're one of the rare people like me who has such severe side effects, if you don't get off of it right away then the tremors and aphasia can become irreversable. It was one of the worst 3 months of my life, and it took me weeks to recover.

I've found that doubling my Depakote during peak manic and depressive times can help get me through the worst of it. I'm always a little on edge, but at least I can think and use my hands!

I understand that Lithium is often a wonder drug, especially for children who are bipolar, and if my friend's son ends up on it, I wish him all the best. I happen to be the Queen of Side Effects, so you can't really go by my experience at all!
estherchaya From: estherchaya Date: July 13th, 2009 01:00 am (UTC) (Link)
my point is that if it's true bipolar disorder, SSRIs are usually not the answer, particularly for a child.

There is obviously no single good answer for everyone with bipolar disorder. This is why it's so important that your friend have good advocates in her corner, whether they are pediatricians, child psychiatrists, or developmental pediatricians (or some combination thereof)... even if it means going for multiple consults for different opinions.

It's a really hard road - and it's really difficult to find those advocates, but it's incredibly important.
hannahsarah From: hannahsarah Date: July 13th, 2009 02:35 am (UTC) (Link)
She's a super awesome mom, with patience like yours. She has a whole team of professionals working on his treatment. I'm in awe of both of you.
journeytoernie From: journeytoernie Date: July 13th, 2009 11:29 am (UTC) (Link)
have you tried lamictal for bp? i've been on it for 2 years now and it seriously saved my life. and it's ridiculously safe
hannahsarah From: hannahsarah Date: July 13th, 2009 08:21 pm (UTC) (Link)
I'll look into it. I'm do to have my meds reevaluated soon. Thanks!
journeytoernie From: journeytoernie Date: July 13th, 2009 08:28 pm (UTC) (Link)
no prob! i hope it works out for you. i cant praise enough what lamictal has done. and with zero side effects.

i wish my psychiatrist was as easy ;) going to her makes me stress out hard core :p
journeytoernie From: journeytoernie Date: July 13th, 2009 11:28 am (UTC) (Link)
actually, my psychiatrist only gave lithium as a last resort.

most people's new starting drug for bp is lamictal because it's awesome
estherchaya From: estherchaya Date: July 13th, 2009 12:08 pm (UTC) (Link)
This will differ from doctor to doctor and from patient to patient.
journeytoernie From: journeytoernie Date: July 13th, 2009 01:22 pm (UTC) (Link)
that's true. but on the same hand, i always recommend lamictal :) it's relatively new, but it's been so awesome. NO side effects and pretty safe for pregnancy :)
xiphias From: xiphias Date: July 12th, 2009 12:33 pm (UTC) (Link)
Isn't it AMAZING when you finally get a working treatment for a condition?

May this lead to success upon success. One thing I've noticed with myself and conditions is that they tend to build on each other -- depression keeps anxiety from being treated and so forth -- which turns them into a tangled knot of frustratingly impossible-to-deal with messes.

However -- that very fact means that, once you get one end of the thread, once you manage to start treating one part, the rest of it just . . . falls into place. Getting one piece fixed allows the next thing to be fixed, which allows the next thing, and it all just starts being possible.

I hope that's the process you're now in.
estherchaya From: estherchaya Date: July 12th, 2009 01:37 pm (UTC) (Link)
it's not perfect - and the anxiety isn't 100% under control and the ADHD isn't anywhere close to under control. But this is the FIRST really really really positive step we've taken in nearly a year. and I'm so thrilled it's hard to articulate.

I know we have a zillion challenges still ahead, but it's nice to finally feel like this ONE thing isn't a battle right now. Everything else has been.
xiphias From: xiphias Date: July 12th, 2009 01:45 pm (UTC) (Link)
Of course it's not 100%. But getting a LITTLE progress, even, allows you to get MORE progress, which allows MORE, and more and more.
estherchaya From: estherchaya Date: July 12th, 2009 02:33 pm (UTC) (Link)
Yes. And having any progress at all is leagues away from where we had been, so it provides tremendous relief to us.
mrn613 From: mrn613 Date: July 12th, 2009 01:42 pm (UTC) (Link)
He's a cutie, ka''h! hatzlacha raba on his new medication regimen.
estherchaya From: estherchaya Date: July 12th, 2009 01:44 pm (UTC) (Link)
He's adorable - that's his saving grace. :)

We're still working on refining it, and hoping to get back to oral ADHD medications, because they work a lot better with fewer side effects, but we're probably a long way off from that. But we're definitely making progress for once, which is huge.
(Deleted comment)
estherchaya From: estherchaya Date: July 12th, 2009 02:34 pm (UTC) (Link)
Yeah. I'd go with that, you know I would, considering that I believe that Coca-Cola is the nectar of the gods, except that we've tried putting medication in Coca-Cola before with tremendous failure in the past.
real_bethy From: real_bethy Date: July 12th, 2009 03:44 pm (UTC) (Link)
Oh, I'm so happy to hear that you've found a step in the right direction for J! That's fabulous!
estherchaya From: estherchaya Date: July 12th, 2009 11:51 pm (UTC) (Link)
thanks so much - it's nice to be moving in a positive direction for once.
journeytoernie From: journeytoernie Date: July 13th, 2009 11:26 am (UTC) (Link)
i've had a bug phobia episode like j....it is not cool. asher used to be like that about plants. PETRIFIED.

appetite stimulant? huh! what kind of side effects did it have?

what med is he on? asher's meds dont really help THAT much but they even him out enough that he can moderately function. and no more meltdowns

how would you take a short acting adhd med in the morning? unless he wakes up way early? we've hit an impasse with our med. it doesn't seem to be helpign anymore and dan is whining about the cost (levi is $75 a month for 2 meds a day with insurance) so he wants to switch to some random off brand med. sigh.

it makes me crazy that it is constantly changing. you're feeling all good and then WHAM it's all upside down.
estherchaya From: estherchaya Date: July 13th, 2009 12:07 pm (UTC) (Link)
Remeron is not an appetite stimulant - but one of its side effects is that it tends to increase appetite. There are other drugs that also act this way, and I do have a prescription, that I have not yet filled, for an appetite stimulant. Right now we're trying to address J's appetite and calorie intake in other ways, rather than adding a fourth medication to his regimen, because it's so traumatic for him to take medication that I'd rather not push my luck. As for the side effects of the Remeron, if you want to email me to discuss them, I'll be happy to do so, but I'd rather not do so here. Side effect profiles differ for everyone and J's side effects were relatively uncommon, so I hate broadcasting them all around the internet.

The SSRI that J is on for anxiety is Prozac. For ADHD he is on Daytrana and Clonidine patches.

Adding a short acting in the morning would be a simple matter of giving him a short acting medication upon waking up - they take about 30 minutes to kick in, as opposed to the 3 hours it takes the Daytrana to kick in. This would make our mornings far more tolerable and manageable.

If your med is not helping, talk to your doctor.

If Dan is whining about the cost, tell him to suck it, your kid needs it, period end of story.

As for it constantly changing - this is the nature of parenting a kid with special needs - it isn't going to remain stagnant until they get a little older, I'm afraid.
journeytoernie From: journeytoernie Date: July 13th, 2009 01:21 pm (UTC) (Link)
i definitely understand not wanting to introduce another med. it's just a shame you cant have a double purpose medication that actually works. ya know?

i can understand that. i'm not nosy enough to pry. i just thought i'd ask and if you dont want to share, no prob. how can you tell side effects? was it like "oh yes. side effect" or more like "hhhmm...this could be?" i always wonder

OH! ok. i didtn realize your daytrana took 3 hours! i guess i forgot. that'd make me crazy. so you give the short acting right away and then wait an hour? what short acting is he on? levi takes a chewable and LOVES it

see the thing is that we're not sure if it's NOT helping. you know? like it seems to help a little but it also seems to be a little lop sided. his short acting meds are WONDERFUL so it's hard to see that the long acting isn't as good

THAT is what i tell dan. he goes on about how we could use a cheaper drug to get the same effect. i tell him that if it works, screw him. i'm not playing around. now he's going on about how since it isn't working as well, we shoudl change it around. apparently they make the same short acting med but in a pill form. levi can take pills now (i have no clue how that happened...) and dan is pushing for that. levi is so inconsistant though. i dont want to play games. if the chewie works, i want to stick with it. i'm going to talk to the dr today

i just hope that i'm catching everything. it's hard for me because my brain is so scrambled right now. sometimes i feel like i'm trying so hard but it's like spinning your wheels in the sand. you work so hard and get nowhere. especially with asher. it's such a fine line. you have to be way strict to get him to see his social issues. but on the same hand, if you're too strict, you squish him. all i want to achieve is to raise my kids to be good people and have them NOT have the self confidence/esteem issues i had/have. with asher, i never know if i'm getting anywhere. that really kills me :/
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