new here - medication monitoring?

Discussion in 'General Parenting' started by cdngrl, Oct 11, 2012.

  1. cdngrl

    cdngrl New Member

    Hi, I am new to posting here, but have lurked for a little while and I have felt so fortunate to have read about others' experiences when going through our own challenges with DS.

    We have been dealing with significant behaviour challenges with DS#1 (8yo) periodically since he was about 4. To make a very long story short, within the past two to three years we have realized that anxiety is a primary contributing factor when his behaviours ramp up, and we have tried lots of anxiety strategies at home as well as counselling and a cognitive-behavioral therapy group, but he has not been responsive. He had a major increase in anxiety near the end of the summer and beginning of the school year that resulted in more aggressive behaviour than ever before, and he is now on medication for anxiety. He is taking Sertraline (Zoloft) - increased 2x so now at 75 mg/day, and a tiny dose of Seroquel (12.5 mg 2x/day, which is supposed to have anti-anxiolytic effects at that dosage). Since the latest dosage increase, we have seen a significant decrease in anxiety, better mood, and virtually no behaviour issues. I'm relieved that he has responded well, although I suspect we will still have challenges in the future. We are now trying to proceed with getting CBT in place again in hopes that he will be able to benefit more now, and also trying again to deal with some of the other contributing issues (sensory, misunderstanding social/pragmatics, etc.) so hopefully we will make more lasting progress now that the anxiety is not as severe.

    I'm wondering if I should be asking for any specific type of periodic monitoring / blood tests etc. with respect to unwanted effects of the medication. There is a family history of diabetes, blood pressure problems, and liver condition (not alcohol-related, so maybe a genetic component?), so I don't know whether that increases risks or not... The psychiatrist who prescribed did not see a need to do any monitoring, but said the Pediatrician will decide if any monitoring is needed. We see the pediatrician next week, so I guess I just want to know whether I should push to have any kind of testing done, or just accept if the pediatrician says it's not needed. Do any of your kids have any kind of blood testing or other monitoring when on medications like these?

    Again, I feel so thankful to have found this site and be able to hear about others' experiences. Sometimes it just feels so isolating to be dealing with these issues on your own, when nobody in your "real life" can really understand.
  2. InsaneCdn

    InsaneCdn Well-Known Member

    Hi, and welcome.
    I'm assuming you're (also) Canadian?

    No experience on medications monitoring... (lots of medications, just not extensive monitoring).
    But... for me, a little red flag in your post: anxiety being the primary driver of behaviour issues.
    Now, I'm going to agree with that statement first. Because anxiety IS a major driver of behaviour issues.
    But... that doesn't make the anxiety the primary problem.

    Where does the anxiety come from?
    What else has he been tested for?
    What kinds of evaluations/evaluators? (therapist/psychiatrist/neuropsychologist/child behavioural developmental tem, etc.)

    The reason I ask is... my difficult child's problems began when school started (kindergarten), and got worse every single year. Until, finally, we got to the bottom of the REAL problems.

    Hidden disabilities are totally misunderstood and misinterpretted and mishandled in school, in ways that drive a kid to insanity really fast. It's no wonder anxiety shows up.
  3. TeDo

    TeDo Guest

    What is your son's diagnosis(es)? Your comment about "issues(sensory, misunderstanding social/pragmatics, etc) has me wondering.

    As for the monitoring, it depends on the medications. I have no direct experience with the ones you've mentioned so I don't know. I know when difficult child 1 was on Depakote, blood testing needed to be done at least annually. His Strattera causes low calcium levels so he takes a calcium supplement. His Tenex is actually a blood pressure medication so that is monitored at each visit. You need to find out what "systems" the medications might affect and go from there. One thing you need to watch for is called paradoxical reactions. difficult child 1 had those with 2 different medications in 2 different classes and while they seemed to work for what they were prescribed for, he became increasingly violent which was very out of character. I know that some kids on the Autism Spectrum Disorders (ASD) spectrum have adverse effects from SSRIs.

    Welcome to our little corner of the world. IC is right, you need to find out WHY the behavior is occurring in the first place. My son being on the spectrum makes anxiety a given but his goes above and beyond what is "typical" for the diagnosis. Your energies would be well spent finding out the why's. Does your son get Occupational Therapist (OT) at school or outside for his sensory issues? That would be a big help with the anxiety also IF you can find a GOOD Occupational Therapist (OT).
  4. flutterby

    flutterby Fly away!

    If you're not Canadian, the psychiatrist is the one who should be doing any blood work for monitoring, not the pediatrician. In the states, the pediatrician will defer to the psychiatrist on that because they don't the expertise with those medications. Zoloft doesn't require any monitoring. A baseline before or soon after starting Seroquel should be done, but that is such a teeny tiny dose I'm not sure if it's necessary (I'm also not a doctor). Therapeutic dose is up around 300-400mg. FWIW, my daughter gets anti-depressant and anti-anxiety benefits from Seroquel even though for her it is mainly prescribed for psychosis. She has massive anxiety and panic disorder, as well, and Seroquel has really helped.

    Do watch for paradoxical reactions to the AD's as TeDo suggested. Anti-depressants make my daughter more depressed and suicidal. We thought it was just the SSRI's, but it has happened on a tricyclic now as well. I get the impression from the professionals that it's not all that common, but it's not unheard of either. She initially responded well to them, so it took some time to figure out that it was, in fact, the AD causing the problem.

    ETA: The labs done on my daughter were CBC, electrolytes, renal and liver function, glucose, and cholesterol.
    Last edited: Oct 12, 2012
  5. cdngrl

    cdngrl New Member

    Thanks so much for the replies and input!

    InsaneCdn - yes, I am Canadian too... and strangely despite lurking here for a bit and reading your posts, I did not even realize that you had Cdn as part of your username!

    I am not at all surprised that the question of diagnoses and what is underlying the anxiety came up from my post... clearly it is not *just* straightforward anxiety. So far he has had a Psychological Assessment, Speech-Language Pathology Assessments, a telepsychiatric consult, and has seen a Pscyhiatrist locally (and was hospitalized by him when he was at his worst this fall). He is also followed by a Pediatrician, who has been involved for over 4 years (and yes, here she can and does prescribe and monitor psychiatric medications and diagnose Autism Spectrum Disorders (ASD)'s although for more complex cases a consult with a specialist is requested). No formal Occupational Therapist (OT) involvement, but informal consults have been done and I am addressing the sensory issues at home and school is accommodating for these at least somewhat (allowing him to leave the room for a break or work in another area if it is too noisy, allowing him to sit where he is less likely to be bumped, option to take movement breaks as needed, etc.). As for diagnoses, there is a bit of disagreement among the professionals involved...

    At this point, here is what is known:
    - ADHD ruled out - all professionals in agreement at this point
    - Auditory Processing Disorders (APD) ruled out (although one subtest was on the low end of normal, I think it might have been auditory figure ground but I'm not positive right now)
    - no language delay (receptive and expressive both average to high average, but relative difficulties noted with pragmatic and non-literal areas of language processing; does stutter and has previously received therapy for this)
    - no significant gross motor, fine motor or graphomotor delays
    - definite sensory processing disorder (SPD), but of course not "diagnosed" as such; sensitivity to/avoidance of smell, taste/texture, touch, noise; some seeking of movement
    - IQ scores have significant discrepancies between composite scores, with perceptual reasoning being at the 98%ile, while verbal comprehension is at the 48%ile and processing speed/working memory are both in between. Additionally, within the verbal reasoning he scored very low on the subtest for comprehension, which involves understanding basic social situations.
    - Academic achievement subtest scores all within low average to very superior range and he does well in school, however given the level of variability in scores it has been suggested he be monitored for Learning Disability (LD)'s that may show up more clearly as he gets older.
    - the Psychologist who did a comprehensive assessment about 1.5 years ago diagnosed him with an Autism Spectrum Disorders (ASD), with the final diagnosis being Aspergers. 2 Psychiatrists have disagreed with this diagnosis (one of whom I consider to be completely useless and put no weight in whatsoever). Pediatrician has not commited to whether or not he truly meets the criteria or not, but we have discussed his "spectrumy tendencies" for years... I think in her opinion it is a questionable diagnosis for him although he does have many traits, and that is why she has not commited one way of the other.
    - Psychologist also diagnosed "Anxiety Disorder not otherwise specified with depressive features"; Pediatrician and current Psychiatrist both believe that anxiety is a primary issue that needs to be treated, but have not put a specific diagnostic label on it. (on the other hand, the first Psychiatrist who did a telepsych consult thought not even the anxiety was a problem... since the primary issues were at home and he managed to hold it together at school, obviously the problem was us... meanwhile our pediatrician and a mental health worker we had been involved with both attested to our strong parenting skills and stable home during that telepsych consult, but she didn't listen to anything that was said as her mind was made up).
    -the anxiety waxes and wanes, and is often fairly generalized although social anxiety is pretty much always present in some form and often prevalent. Often when the anxiety really ramps up we won't know exactly why but will later find out that there were some incidents of social misunderstanding that have been very upsetting to him but no one was aware of as he kept it all inside until everything finally came out after a "meltdown" (which often involves physical aggression toward us). He frequently thinks someone is mad at him/mean to him if spoken to in a loud voice or corrective manner, and does not like situations where he does not know what to expect or what to do.

    There are times where I do believe that he is on the spectrum. But then, when he is doing well he displays almost none of the characteristics outside of the sensory issues and a bit of difficulty with nonliteral/pragmatic stuff. At those points in time I feel that, although he has some characteristics he does not meet all the criteria for diagnosis. I think once he has been "stable" for a while, we will have another psychiatric ax done to look again at Autism Spectrum Disorders (ASD) and possible Learning Disability (LD). Right now I guess I am ok with treating the anxiety and then gradually working on the other areas as hopefully he will become more receptive to working on these. However, obviously I'd rather know exactly what is going on in order to be sure our approach is right...

    As an aside, tonight he was crying and very upset and practically hyperventilating because he is starting up swimming lessons again tomorrow. He likes swimming, but does not like being in lessons with other kids (though he used to be fine with it)... doesn't like being bumped, the noise, the potential that he might be "yelled at" by a teacher, and now he is catastrophizing... says he might bump someone else and go underwater and drown. We have worked hard with the facility to try to set him up with a very positive instructor (who is aware of his challenges) in a smaller group, he had a successful visit to the pool today and we were able to do a re-test to ensure he is being placed in the correct level so he won't be overwhelmed, and of course we made sure he is aware that his swimming teacher is a lifeguard and will make sure he will not drown... and still this level of distress in anticipation of it. I really thought he was doing well enough now that he could handle trying this now with a little work done up front, but of course I am second guessing my judgement tonight. Why can nothing be easy with him??

    Wow, this ended up being a much longer post than I intended... thanks again everyone!
  6. InsaneCdn

    InsaneCdn Well-Known Member

    How long ago was Auditory Processing Disorders (APD) ruled out? because... they can't get a good handle on the less common ones (such as auditory figure ground) until about age 7 or 8. Does he do better being taught one-on-one in a quiet room? If so... re-testing for Auditory Processing Disorders (APD) is probably called for... who did the testing? PhD-level Auditory Processing Disorders (APD) specialist? or someone else? (makes a huge diff)
  7. cdngrl

    cdngrl New Member

    I can't find the Central Auditory Processing Disorder (CAPD) testing report right now, but I'm pretty sure we had it done shortly before he turned 7. The audiologist is the only one in this area who is currently doing Central Auditory Processing Disorder (CAPD) testing,when I look her up she now has a PhD but she may not have completed it before we saw her. Regardless, before she started the testing she indicated that it may not be conclusive because of his age, but when she had finished administering and scoring it she was confident it was valid. However, she didn't even mention the one subtest being significantly lower than the rest, probably because it was still within the average range... but because all other subtests were above the mean and that one was about one standard deviation below the mean, I do wonder if it is causing some problems for him. Maybe we should get this retested again... poor child, sometimes I feel like all we do is take him to appointment after appointment...
  8. InsaneCdn

    InsaneCdn Well-Known Member

    If you can find the report, figure out two things...
    1) which sub-test is "low", and
    2) how big the gap is between that one and the others.

    Based on those two items, you should be able to request a second opinion without a re-test.
    It would be a re-evaluation of results...
  9. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    His issues sound very spectrum to me. My son used to puzzle us as well as your son puzzles you. One moment he would seem totally normal, whatever normal is. And then at another time, he'd be sucking his shirt until it was almost totally wet. Sometimes he'd seem very tuned into the enviroment and people around him, especially if he knew the people well and it was a small group. He'd run around and laugh. But in larger groups, with people he didn't know, he'd seem pathetically shy, look down, want to leave, sit in the back, almost act like he wanted to disappear. The bewilderment many of us Autism Spectrum Disorders (ASD) parents have is that ouir kids can and do seem "typical" in certain situations which makes us wonder if we were imagining things. However at other times, they just can't handle something that other kids handle with ease.

    The academic hardships usually show up later on...from fourth grade to middle school depending on the level of the child's functionality. On the other hand, the major commonality between Autism Spectrum Disorders (ASD) kids is their poor social skills. They don't seem to understand the unwritten social rules that most people inherently know or learn. This often again becomes more obvious once they are older and their peers become less forgiving to their gaffs and awkwardness. Many times Autism Spectrum Disorders (ASD) kids do much better with adults or younger children simply because they are not judged as harshly on their social behaviors by adults or younger peers.

    I am not saying your son is Autism Spectrum Disorders (ASD), but I wouldn't rule it out. Very few higher functioning Autism Spectrum Disorders (ASD) kids get diagnosed young or meet everything in the DSM. Lots of it is common sense. And if a kid seems spectrumy and doesn't have the diagnosis yet, spectrum interventions help that child anyways. I don't know how it works in Canada, but in the US you have to really fight for school and community interventions if you don't have a bonafide label. I hope it is easier in Canada.
  10. Mattsmom277

    Mattsmom277 Active Member

    My difficult child never had a diagnosis label. I am in Ontario and Thankfully we can get iep's at school with a behavioral label without formal diagnosis. School testing did show fine and gross motor delays as well as organizational issues, some sensory issues, as well as difficulty in verbal learning. He did better non verbally. Even though he didn't begin to understand basic reading until grade 3.
    I was glad that the schools Special Education department here in this province anyhow, are receptive in spite of any specific diagnosis. I hope your difficult child continues to benefit from support and I wish I had some wisdom to offer. I did want to welcome you here though. Many of us have been here so long, it's difficult to always remember those earlier years the brought us here. Hope more come along with practical advice. Hope you stick around. It's a great community of parents
  11. InsaneCdn

    InsaneCdn Well-Known Member

    Easier in Canada? Depends on the province. Where I am, it's the same as you... almost everything is tied to a diagnosis, and the things that aren't, are the "obvious learning disabilities" like dyslexia. Mattsmom got help without dxes... it varies widely.
  12. Mattsmom277

    Mattsmom277 Active Member

    It likely does vary widely. In looking back, I realize so much time went by that I had forgotten how the school became receptive. I was ignored in asking for help because it was mostly problematic at home and not so much at the school level. Until grade two when the teacher decided she felt difficult child out of control behaviorally and suddenly like magic I had a random call to have him identified at a rush iprc hearing and then a rushed IEP meeting where they immediately recommended him to a intense day school treatment program as a full time placement. So Maybe had his school behaviors not grown worse, he may not have been so lucky about services without a formal diagnosis.
  13. cdngrl

    cdngrl New Member

    Midwest mom, that does sound a lot like my DS. At this point, he does really well with his small group of friends, who are all really great kids... but it did take him a long time to find "real" friends. He is generally well liked by classmates at this point despite some of his rigid thinking and not always understanding the social nuances. However, he is much like your DS in bigger groups or when he does not know the people.

    At this point, we have not pursued an IEP of any sort. I know there are mixed opinions about doing this, but at this point we have decided we don't want a formal label on his school records because he generally manages very well at school (and if anything presents as the "perfect" student who follows all the rules and wants to do everything correctly, as his anxiety is often internalized at school). So far the school has been very supportive. We do have the documentation from the Psychologist with the diagnoses that could be used if needed to start the IEP process at any point in time, and our pediatrician has also previously said she can put a diagnosis in writing if needed to get an IEP but her concern was that if a label was given to the school he might be viewed through that lense only, when in reality he doesn't fit in a nice neat little box so it could potentially do more harm than good. It is so hard to know the right decision!

    Thanks again everyone!