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JTsMom
12-18-2012, 10:24 AM
Update:
After we ditched the Prozac, we waited for just a little while, then started generic Zoloft (Sertraline). It was the lowest dose, split in half, and he's been on that for about 3 weeks. The psych was reluctant to try another SSRI, but decided to go for it. He felt with the strong reaction last time, this probably wasn't the type of drug for him.

It's definitely better than the Prozac, but I don't think it's strong enough b/c the anxiety is coming back. We're also still seeing aggressive behavior, including hitting, kicking, and throwing things. He's sleeping much better though, and there has been none of the mania or other side effects. I followed up at the 2 week mark, and he requested we make an appointment because "there is a lot to discuss". That appointment will be on Wednesday. H

I'm reluctant to totally abandon treating the anxiety, but one option would be to try the 5-HTP again, and possibly Intuniv, and hope that the 5-HTP works well enough to get us by. I'm thinking if we turn our attention back to the ADHD, maybe life will be a little easier, because right now, everything is a struggle, especially schoolwork. 5-HTP wasn't strong enough in the past, but there were no side effects, and it was better than nothing.

How bad do the side effects have to be for you to have to give up on a drug? Would the aggressiveness be a deal killer for you? I'm thinking yes, but I'm starting to wonder if we're ever going to find something that works without them.

I'm sure the psychiatrist will have his own thoughts, but I want to go in with an idea of what I want.

_____________________________________________
I just want to brainstorm with you guys a little. I really like our psychiatrist, but I want to go in with a little more knowledge and my own opinions.


Quick summary:

-Jason is 7.5. His current diagnoses are Asperger Syndrome, ADHD, anxiety, and a medical phobia. He also has a serious cardiac condition. The Asperger's diagnosis is a newish one. His psychiatrist has mentioned it might not fit perfectly.

-Current medication-Fluoxetine, 10 mg

-We have tried numerous no-med treatments including multiple diet changes and various therapies with no success. We've also tried different supplements. The only one that made any difference was 5-HTP. We discontinued it around Thanksgiving b/c it wasn't enough, and we wanted to try an SSRI.

-We started off trying to treat the ADHD with stimulant meds (Vyvanse). He was having some side-effects that concerned us, then had one incident that scared the crap out of me, so we switched gears and decided to try to address the anxiety first. Stimulant meds have a black box warning for kids with heart defects. Although his cardiologist has OK'ed the meds, they make me a nervous wreck. At the same time, I know he can't continue to live like this. We also tried Hydroxyzine with no success.

Current major issues- Extreme hyperactivity, inattentiveness, anger, defiance. The anxiety is much better on Prozac, but after we went off the 5-HTP, it was really bad. Like, couldn't function bad.

Current side effects- The hyperactivity is more like mania at this point. I can not even describe the noise level in my house. He is doing things like lying, sneaking around and swearing, which is not typical for him. He is becoming mildly physically aggressive at times. He's not sleeping well at all. It's always been difficult to get him to sleep, but once he was out, he slept well. Now he's sleeping much less, it's almost impossible to get him to sleep b/c he is so wound up at bedtime, and he's waking up at like 6. He's probably getting 3 hours less per night. He's tired during the day, and falls asleep on short car trips. In the past, he's had some OCD tendencies, but they've been gone for a while. Now, they're starting to show up again.



My thoughts- It is obvious to me that he needs some med that will address the anxiety, and that SSRIs help. The side effects are bad though, and making the other issues seem far worse. It's hard to tease out what is causing what though, and I think we're going to be experimenting for a long time. I wonder if any combo will ever work.


I welcome any thoughts you all have.

TwoBees
12-18-2012, 10:43 AM
I'm not an expert by any means, but I have a few thoughts:

Have you tried Intuniv, which is a non-stimulant ADHD med?

Have you tried moving the meds to different times of the day or spacing them out?

Have you tried different SSRIs or maybe something that is not an SSRI (Wellbutrin?)

:hug: to you mama, I hope you figure this out.

JTsMom
12-18-2012, 11:13 AM
Thanks for your input TwoBees.


I'm not an expert by any means, but I have a few thoughts:

Have you tried Intuniv, which is a non-stimulant ADHD med?
We haven't yet, because we decided to try to deal with the anxiety first- I think the psych is trying to do one thing at a time. At some point, that's on my list though. The psych doesn't seem to have high hopes for it b/c of how bad the hyperactivity is, but my hope was/is that dealing with the anxiety might help bring at least some of the behavioral issues under control, and the Intuniv might be enough.


Have you tried moving the meds to different times of the day or spacing them out? Right now, we're only doing the one (plus a multivitamin). I try to give it to him as early as possible at the psych's suggestion, hoping that it will wear off a little so that he can sleep. It doesn't seem to be happening though.


Have you tried different SSRIs or maybe something that is not an SSRI (Wellbutrin?)We've only done this (we're at 3 weeks), plus a couple days of the Hydroxizine. I'm definitely open to suggestions on specific ones, and the psych is good about listening to my ideas. We did discuss Wellbutrin, but he said that in someone with anxiety, it's usually a really bad situation.

:hug: to you mama, I hope you figure this out.
Thank you! :)

egoldber
12-18-2012, 11:31 AM
FYI, fluoxetine is what older DD takes.

How long has be been on the SSRI? It takes at least 3 weeks to reach full therapeutic dosage. However, when we tried sertraline (Zoloft) with older DD it was a disaster and we knew it pretty positively by about 14 days in. The psychiatrist had us step down off the Zoloft and on the Prozac at the same time. (I posed about it here: http://windsorpeak.com/vbulletin/showthread.php?t=396931&highlight=zoloft)

The Zoloft absolutely increased her anxiety levels and she became defiant and out of control which is not like her.

So the upshot is that while SSRIs can be amazing, it can be very much a trial and error process to see which one works. The psychiatrist had 2 or 3 other besides Zoloft and Prozac to try for her, because these reactions are not uncommon.

Have you talked to the psychiatrist?

JTsMom
12-18-2012, 12:06 PM
FYI, fluoxetine is what older DD takes.

How long has be been on the SSRI? It takes at least 3 weeks to reach full therapeutic dosage. However, when we tried sertraline (Zoloft) with older DD it was a disaster and we knew it pretty positively by about 14 days in. The psychiatrist had us step down off the Zoloft and on the Prozac at the same time. (I posed about it here: http://windsorpeak.com/vbulletin/showthread.php?t=396931&highlight=zoloft)

The Zoloft absolutely increased her anxiety levels and she became defiant and out of control which is not like her.

So the upshot is that while SSRIs can be amazing, it can be very much a trial and error process to see which one works. The psychiatrist had 2 or 3 other besides Zoloft and Prozac to try for her, because these reactions are not uncommon.

Have you talked to the psychiatrist?


We started at 5 mg 3 weeks ago, stayed at that dosage for 2, then upped to 10mg last week- this is day 7. Do you think there is a chance the side effects will go away if we continue? Or will they just keep getting worse as we up the dose?

I've been emailed with they psychiatrist, but haven't spoken to him yet this week. The issues were similar on the lower dosage, but are more severe on the higher one. I was a little surprised he upped it after my description, but he didn't seem too concerned. He just told me to up it, try to give it earlier, then report back.

Off to read your thread.

egoldber
12-18-2012, 12:14 PM
It is possible they will get better, but I would not let it go much longer than a week. I would call the psychiatrist back and ask how long they want to continue because things are NOT better.

JTsMom
12-18-2012, 01:58 PM
So after just spending a frustrating hour trying to get through math with him, I just took a few minutes to email the psychiatrist. During the 5 minutes that took, he went upstairs with his little brother, and they both colored all over their entire bodies, and the bed sheets. We have always had behavior and impulse control issues, but he has never done anything like that in his life. :shake:

egoldber
12-18-2012, 02:08 PM
I would call the psychiatrist ASAP and ask for a med change.

JTsMom
12-18-2012, 02:30 PM
He usually gets back to me within an hour or so, so I'm going to give him thirty more minutes, then call if I heard from him by then. I sent a second email describing what I found too. The first one including a bullet point list of all of the issues I'm seeing, so hopefully it will be pretty clear to him.

On a mom to mom note, you could have knocked me over with a feather when I walked into that room. My jaw is still on the ground. I knew I wasn't just imagining the change, but to see it so clearly displayed.... wow. That left zero room for doubt.

cuca_
12-18-2012, 02:51 PM
I agree with Beth. Ask for a med change. My DD takes Setraline for anxiety and Vyvanse for ADHD. We are in the process of figuring out her ADHD meds and it has been a long road.

IME a change like the one we are describing is due to the meds. DD had a similar reaction to one of her stimulants. She became defiant, began tantrumimg and was acting in ways that were not typical for her. As soon as we took her off the medication the behaviors stopped.

JTsMom
12-18-2012, 06:02 PM
The psych said to take him off the Prozac, then report back by the end of the week. Now he's going to be a wreck for Christmas. Sigh.

egoldber
12-18-2012, 07:46 PM
I'm so sorry Lori. :(

I have to say this time of year is always always always oldest DD's worst time. The combo of the darkness and the ever present sweets and holiday madness make this a really hard time for kids who don't regulate their emotions well.

Pepper
12-18-2012, 09:10 PM
I thought of Intuniv for you, too. DS1 took it for ~8 months, after we had a terrible time on ritalin. It worked fairly well for him for impulsivity but it also made him sleepy, to the point where he'd fall asleep in class and snooze while they carried him to the nurses office. We changed the time of day of the dose to mid-afternoon, and that helped him to fall asleep at bedtime (6 hours after he'd taken the Intuniv). We just had to stop that drug though ebcause it wasnt working for him as well and we couldn't increase his dose anymore (he was at 2 mg; DS1 is 6).

The thing that REALLY helped us with sleeping was melatonin (1 mg taken at bedtime. We had to try a few different brands b/c DS didn't like the tasste of some of the tablets). DS1 used to sleep really well too, but was having nightmares and increased night waking for ~3 years. All of that stopped within a week of starting melatonin (I was shocked, because NOTHING we try ever works so well). He was on it for a few months and then his psych said that he had to take a break from it, so now we give him 25 mg of beadryl at bedtime. He sometimes takes a little while to settle down to sleep but thankfully the nightmares and night waking have not returned.

And as for the coloring himself - maybe this will make you feel better. My typical 3-year-old DS2 drew all over his arms, leg, feet and face with a magic marker because he couldn't find his Ben 10 ultimatrix - so he drew himself a new one, and then drew himself to look like an alien, too.

inmypjs
12-19-2012, 03:41 PM
So sorry you're going through this. I don't have any great advice but wondered what is he like without meds at all? Not in any way suggesting that is the way to go, just wondered how what you are currently seeing differs from when he wasn't on anything. The thing that struck me the most about your post was that now he is doing things that you never saw him do before. I would ask for a change for that reason.

JTsMom
01-14-2013, 05:51 PM
bumping for update in OP.

egoldber
01-14-2013, 11:26 PM
The psych was reluctant to try another SSRI, but decided to go for it. He felt with the strong reaction last time, this probably wasn't the type of drug for him.

This is the opposite of what DD's psych said after our disastrous sertraline attempt. I was discouraged and she said there were many SSRIs to try before giving up.

The aggressiveness would be an issue for us because DD is in school and they have basically zero tolerance for aggression. Have you considered going up in dosage? His dosage may simply not be high enough. I was reluctant to move older DD up in dosage, but it wasn't until we went from 10 to 15 to 20 in about 2 months that we saw the most benefit. I would try that before moving on to something else.

Can you also add in Intuniv though? Does it have to be one or the other?

JTsMom
01-14-2013, 11:45 PM
Going up was the original plan, but I figured that would make the side effects worse. Not necessarily? We can add the Intuniv, but wanted to try one thing at a time so that we could watch for side effects. It is really dragging though.

At this point, I'm starting to doubts self about everything. For example, what if the aggression was originally a SE of the Prozac, but then became behavioral? He has never been aggressive though. He did go through a hitting phase as a toddler, but it was mild, and only directed at us.

I think the reason he was wary of another sari was bc of the mania specifically. It freaked me out pretty badly.

JTsMom
01-17-2013, 08:49 AM
Switching to Intuniv, and may add in 5-HTP after I watch the Intuniv for a week or so. It's supposed to help some with mood, so I'm hoping it makes the transition easier. The anxiety seems worse at night, so the sleepiness it could cause may work in our favor.

pinkmomagain
01-17-2013, 01:09 PM
Hope you find some success with the Intuniv. It's been helpful for DD2s ADHD-inattentive type. She takes it in the am and it doesn't make her sleepy, but I believe it can lower BP and dd's BP is already low so it can make her sluggish if she is not well-hydrated.

As far as the SSRI manic effects, I think I've read that that people who are more vulnerable to this are those who may be bipolar. Don't remember where I read it or even if that comes into play in your particular scenario but thought I'd put it out there in case it's something you'd want to ask the dr about. Otherwise, like egoldberg mentioned we found success actually increasing prozac and waiting a couple of months for full effect (and I was very hesitant to increase but took a leap of faith with a new dr and we've been very pleased with the results). Although aggression was never something we saw, in fact, we have seen no ill effects from prozac at all.

egoldber
01-17-2013, 01:12 PM
I hope the Intuniv works for you guys. :hug:

We did see some aggression with the sertraline/Zoloft.

JTsMom
01-18-2013, 10:57 AM
Thanks guys. I'll look into the bipolar link. I don't think it would apply here, but it's certainly worth checking out.

Gave DS his first pill last night. So far so good, but we'll see. Crossing my fingers.

JTsMom
02-05-2013, 07:41 AM
Updating again. Sigh.

We started Intuniv almost 3 weeks ago. We tried 1 mg for a week- he was really tired the first day, then things got better. The aggression stopped, but he was still getting really frustrated and angry. Not normal levels of frustration- like throwing things across the room because he wrote a number wrong frustration. We went up to 2 mg., and after a week, I felt unsure. I noticed some increase in attention, and less hyperactivity, but b/c of all of the anger, we still were struggling with school. The psych and I decided to try 2 mg for another week, then reevaluate, which is where we are now. This week is the same as last week.

I really don't know where to go from here, and I'm doubting everything. What if we don't even have the right diagnosis? Some of the ADHD stuff has improved, but I'm still seeing some hyperactivity. The anxiety is totally gone, which is really weird- why would this be helping that?! His mood is so horrible, it's hard to describe here. I'm afraid to even take him into public b/c he is being so rude and defiant. He's calling me names, threatening everyone, and swearing all day long- he's only 7!!

The psych had mentioned we could try Straterra next if this didn't work, but I know it often increases anxiety, so I'm not sure that's the best bet. Maybe I should ask for a separate psychiatric evaluation? Maybe I should try switching doctors? We've been at this since October, and things are worse than ever.

Melbel
02-05-2013, 08:08 AM
Lori,

I am so sorry your son is suffering and having bad side effects to medications. I certainly can empathize. I know you guys probably think I ALWAYS think Lyme, but I have seen similar symptoms in many other Lyme kids (Lyme groups for parents). In particular, these symptoms are all consistent with Lyme:

Asperger Syndrome that does not "fit" (this is a big one)
ADHD
anxiety
phobias
cardiac conditions (this may not fit because if I recall correctly, he was born with this defect; Lyme carditis and heart block are common)
defiance
side effects to psychiatric meds that should help him (this is in a brochure for when a psychiatrist should suspect Lyme http://www.ilads.org/lyme_disease/Psychiatric_Brochure_08_08.pdf; DS had this issue big time)
bipolar like behavior
cognitive dysfunction
aggressive behavior

I came across this link re. neuropsychiatric testing for children with Lyme that may be insightful.

Bartonella, another tick born infection, also causes strong neurological symptoms.

This may not be your answer, but it is certainly worth exploring considering the impact his symptoms are having on his life (not to mention the rest of the family), as well as the fact that symptoms can get much worse with Lyme and co-infections. I will be happy to guide you with testing if you are interested (the testing is largely inaccurate).

While most people think that Lyme is not in the SE, it is significant to note that GA was 4th for the number of reported cases prior to changing the reporting criteria. http://www.georgialymedisease.org

Regardless of the source of the problem, I pray that you find a helpful treatment path.

egoldber
02-05-2013, 09:26 AM
I don't know about Strattera in particular, but a friend's DD with anxiety and ADHD found that the anxiety improved tremendously with the stimulant (Concerta). So while in some cases stimulants can exacerbate anxiety, it can help to reduce it also.

It's so frustrating. :hug:

JTsMom
02-05-2013, 10:24 AM
Lori,

I am so sorry your son is suffering and having bad side effects to medications. I certainly can empathize. I know you guys probably think I ALWAYS think Lyme, but I have seen similar symptoms in many other Lyme kids (Lyme groups for parents). In particular, these symptoms are all consistent with Lyme:

Asperger Syndrome that does not "fit" (this is a big one)
ADHD
anxiety
phobias
cardiac conditions (this may not fit because if I recall correctly, he was born with this defect; Lyme carditis and heart block are common)
defiance
side effects to psychiatric meds that should help him (this is in a brochure for when a psychiatrist should suspect Lyme http://www.ilads.org/lyme_disease/Psychiatric_Brochure_08_08.pdf; DS had this issue big time)
bipolar like behavior
cognitive dysfunction
aggressive behavior

I came across this link re. neuropsychiatric testing for children with Lyme that may be insightful.

Bartonella, another tick born infection, also causes strong neurological symptoms.

This may not be your answer, but it is certainly worth exploring considering the impact his symptoms are having on his life (not to mention the rest of the family), as well as the fact that symptoms can get much worse with Lyme and co-infections. I will be happy to guide you with testing if you are interested (the testing is largely inaccurate).

While most people think that Lyme is not in the SE, it is significant to note that GA was 4th for the number of reported cases prior to changing the reporting criteria. http://www.georgialymedisease.org

Regardless of the source of the problem, I pray that you find a helpful treatment path.

Thanks for weighing in, Mel. I don't think Lyme would fit for a couple of reasons, although the thought has crossed my mind. We've known something was different pretty much since birth. By one year, I was getting really concerned about ASD, so unless the infection was passed before birth, it wouldn't make sense. I don't have any unexplained health issues, and am relatively healthy. I do have a thyroid condition, but so does everyone in my family, and it has been easy to control. I grew up in PA, then S. FL, where Jason was born. We moved to GA when he was 1.5.

His heart condition is congenital, and was diagnosed within the first day of life. Research is showing that up to 50% of kids with complex CHD requiring surgery within the first year of life have similar issues. Unfortunately, there's not a ton known about it yet b/c it's only recently that these kids are surviving to school-age.

So I think we know why the issues are present, just not what to do about them. Jason's cardiologist referred us to a neuropsychologist who is working exclusively with cardiac kids. She's the one that gave Jason the Asperger's dx, as well as re-confirming the ADHD diagnosis. DH also has an ADHD diagnosis, so we always felt pretty confident about it.

The cardiologist, neurologist, and neuropsychologist all felt strongly that the ADHD meds would help a lot, so it's shocking to me that we haven't found a match. In fairness, we've only tried 2 ADHD meds, so they could still work. It's just that the stimulants scare me half to death because of the cardiac issues.

I've been Googling like crazy, and I have seen a lot of reports of anger with Intuniv, so it could just be that this isn't the drug for him. But I'm also seeing some talk of ADHD meds having that effect on bipolar kids, so I'm wondering if that could be an issue too.

I may have him give the Strattera a try, and if that doesn't work, just stop everything for a month or so. I feel like I've lost track of our baseline at this point. He was never aggressive before the meds, and although he would sometimes seem a bit paranoid, he wasn't having angry outbursts like he is now. I do still wonder if one of the earlier drugs set that in motion, but then the continuation has been behavioral. I'm guessing it's all SE related though.


I'm thinking about writing up a summary of the last 6 months, and sending it to everyone who has seen him- the psychologist, psychiatrist, neuropsych, pedi, cardiologist and neurologist. I fired the developmental pediatrician, b/c I was frustrated with the missed Asperger's dx, but now I feel like everyone is totally disconnected, and may be missing something because nobody sees the whole picture.

JTsMom
02-05-2013, 10:26 AM
I don't know about Strattera in particular, but a friend's DD with anxiety and ADHD found that the anxiety improved tremendously with the stimulant (Concerta). So while in some cases stimulants can exacerbate anxiety, it can help to reduce it also.

It's so frustrating. :hug:

Thanks Beth. Strattera is a non-stimulant, but for whatever reason, seems to worsen anxiety. I had actually planned to start with it, but the psychiatrist predicted disaster. I don't know why he has changed his thinking. Maybe he hasn't, but just doesn't know what else to try? I feel like he forgets everything about Jason between visits, which is getting frustrating.

crl
02-05-2013, 11:16 AM
No advice, just :hug:

Catherine

Gena
02-05-2013, 12:57 PM
Hugs. :hug:

I don't have any advice about meds, but I completely understand your struggles with anger, meltdowns, and aggression. We have those difficulties with DS too.

Have you seen this book:

Asperger Syndrome And Difficult Moments: Practical Solutions For Tantrums, Rage And Meltdown (http://www.amazon.com/Asperger-Syndrome-And-Difficult-Moments/dp/1931282706/ref=sr_1_1?ie=UTF8&qid=1360081462&sr=8-1&keywords=aspergers+rage) by Brenda Smith Miles

It explains the "rage cycle" that kids with ASD experience. I've found it helpful, not only to avoid DS's triggers, but in helping me understand at what parts of the rage cycle I can try to intervene and what parts we need to just keep him safe and "ride it out". It helped me see how trying to intervene at the wrong point of the cycle just escalates his difficult behavior, which makes me feel more frustrated and helpless.

There's a short summary of the rage cycle here: http://www.isec2005.org.uk/isec/abstracts/papers_m/myles_b.shtml

It's something we continue to work on.

Pepper
02-05-2013, 10:54 PM
Ugh. I feel for you...at our last visit, I asked DS1's psych why melatonin had worked so well (and so dramatically!) for him, whereas everything else has been ok for a hill and then meh or worse. Her answer was that melatonin is a natural substance, not a med...I guess there's nothing that's really as good as a brain that's wired the way it's *supposed* to be.

DS is into Strattera for about 2 months now. The psych told us that it takes a month to take effect. When we first started him on it, I thought holy cow there's no way this stuff is working, then he settled down a bit right after CHristmas. We increased him to the full dose and it's bee just month. He's still pretty impulsive, but I think the hyperactivity is better, unless something gets him going and then it's hard to calm him down. He's definately been ultra-mouthy but I think part of that is the age as well.

Our DS didn't have the anger with Intuniv so BTDT advice for you (though he tends to be angry a lot anyway, as part of his baseline as you say). I do remember the psych saying that Intuniv was originally developed as a high-blood-pressure drug, and patients reported feeling more mellow while they were on it (lol) and that's how it came to be developed as an ADHD drug. So maybe that's why his anxiety has improved? I dunno. DS1 had terrible nightmares for YEARS and they literally evaporated when he went on melatonin, havne't come back even though he's been off it for months. It's so hard to tease out what the effects of meds are with the usual developmental/maturity/biological changes.

(Sorry for all the typos, I'm too tired to proofread tonight!)

mjs64
02-06-2013, 12:01 AM
That sounds so so hard. ITA with investigating the possibility of bipolar. What you describe does sound a little like mania, and often times people who suffer from mood disorders (there's a big big spectrum--one could have classic symptoms as in bipolar I or milder ones as in bpII) are misdiagnosed with ADD and anxiety. Maybe a mood stabilizer (lamictal, lithium, there are many others) could help. Officially, the DSMV states that bipolar has an onset of 18, but new studies are investigating the possibility of earlier onset. Perhaps worth bringing up to the psych.

Ill be thinking of you and your family.

ETA: antidepressants have been shown to exacerbate symptoms of mania.

You're more than welcome to PM me for more info. Hugs hugs hugs.

JTsMom
02-06-2013, 08:18 AM
Hugs. :hug:

I don't have any advice about meds, but I completely understand your struggles with anger, meltdowns, and aggression. We have those difficulties with DS too.

Have you seen this book:

Asperger Syndrome And Difficult Moments: Practical Solutions For Tantrums, Rage And Meltdown (http://www.amazon.com/Asperger-Syndrome-And-Difficult-Moments/dp/1931282706/ref=sr_1_1?ie=UTF8&qid=1360081462&sr=8-1&keywords=aspergers+rage) by Brenda Smith Miles

It explains the "rage cycle" that kids with ASD experience. I've found it helpful, not only to avoid DS's triggers, but in helping me understand at what parts of the rage cycle I can try to intervene and what parts we need to just keep him safe and "ride it out". It helped me see how trying to intervene at the wrong point of the cycle just escalates his difficult behavior, which makes me feel more frustrated and helpless.

There's a short summary of the rage cycle here: http://www.isec2005.org.uk/isec/abstracts/papers_m/myles_b.shtml

It's something we continue to work on.



Thanks Gena. I'm adding it to my reading list.


Ugh. I feel for you...at our last visit, I asked DS1's psych why melatonin had worked so well (and so dramatically!) for him, whereas everything else has been ok for a hill and then meh or worse. Her answer was that melatonin is a natural substance, not a med...I guess there's nothing that's really as good as a brain that's wired the way it's *supposed* to be.

DS is into Strattera for about 2 months now. The psych told us that it takes a month to take effect. When we first started him on it, I thought holy cow there's no way this stuff is working, then he settled down a bit right after CHristmas. We increased him to the full dose and it's bee just month. He's still pretty impulsive, but I think the hyperactivity is better, unless something gets him going and then it's hard to calm him down. He's definately been ultra-mouthy but I think part of that is the age as well.

Our DS didn't have the anger with Intuniv so BTDT advice for you (though he tends to be angry a lot anyway, as part of his baseline as you say). I do remember the psych saying that Intuniv was originally developed as a high-blood-pressure drug, and patients reported feeling more mellow while they were on it (lol) and that's how it came to be developed as an ADHD drug. So maybe that's why his anxiety has improved? I dunno. DS1 had terrible nightmares for YEARS and they literally evaporated when he went on melatonin, havne't come back even though he's been off it for months. It's so hard to tease out what the effects of meds are with the usual developmental/maturity/biological changes.

(Sorry for all the typos, I'm too tired to proofread tonight!)


Don't you wish this all worked as easily as they make it seem it will? :hug:


That sounds so so hard. ITA with investigating the possibility of bipolar. What you describe does sound a little like mania, and often times people who suffer from mood disorders (there's a big big spectrum--one could have classic symptoms as in bipolar I or milder ones as in bpII) are misdiagnosed with ADD and anxiety. Maybe a mood stabilizer (lamictal, lithium, there are many others) could help. Officially, the DSMV states that bipolar has an onset of 18, but new studies are investigating the possibility of earlier onset. Perhaps worth bringing up to the psych.

Ill be thinking of you and your family.

ETA: antidepressants have been shown to exacerbate symptoms of mania.

You're more than welcome to PM me for more info. Hugs hugs hugs.

Thank you so much. I'll be emailing the psychiatrist today, and possibly the others as well.

JTsMom
02-07-2013, 10:57 AM
:banghead:

Just emailed the psych and he said to taper him off the Intuniv, and he's not sure what our next step should be.

egoldber
02-07-2013, 12:06 PM
Does this psych have experience with kids with his heart issues? It might almost be worth finding someone who does, even if you have to travel. Can the neuropsych who works with cardiac kids give you a recommendation?

JTsMom
02-07-2013, 12:23 PM
This was her rec, but he's not someone she's worked with personally. I think she said someone in her department suggested him. He's an hour away. The city would actually be a shorter drive, so I'm wide open there.

I'm thinking about getting back in touch with the therapist you and I talked about several months back. She had mentioned that our area had some less than stellar psychiatrists, and that she'd like me to run names by her so she could weigh in. I never asked about this guy, because he's not local.

egoldber
02-07-2013, 12:25 PM
Yeah, you definitely need a rec for someone else I think. And preferably someone who gets his complex medical issues. :hug: