UPDATE-Can anyone help me figure out meds issues?

[JTsMom]

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]

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]

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/Ps...ure_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]

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.

[JTsMom]

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/Ps...ure_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]

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.

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]

No advice, just

Catherine

[Gena]

Hugs.

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 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/abst.../myles_b.shtml

It's something we continue to work on.

[Pepper]

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]

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.