Update on our medication trials (SSRI's)

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Registered: 12-24-2004
Update on our medication trials (SSRI's)
10
Fri, 08-05-2005 - 6:52pm

I just thought I would update you all on how our medication trials are going. Of course, meds are an entirely individualized issue, but maybe for some of you who are thinking of trying psychotropic drugs with your kids, hearing of our experiences will help.

Initially, we decided to try Cassian on Lexapro, based on the fact that this antidepressant has worked well for DH and me in the past. Lexapro is an SSRI (selective serotonin reuptake inhibitor), which is essentially the Prozac family of antidepressants. SSRI's are also commonly used to control obsessive compulsive issues, and they may help with social anxiety. Cassian started on 1/4 tsp, and we noticed great improvement in eye contact, increased language, problem solving, less obsessiveness and social referencing. The same improvements were noted by his teachers and OT. His tantruming did not change, however. The original plan was to up the dosage to 1/2 tsp, which we did after several weeks. It takes a while for SSRI's to get in and out of your system, so you need to do successive trials starting at a low dose, especially with children who have ASD's because they have very delicate systems.

The higher 1/2 tsp Lexapro dosage caused hyperactivation in Cassian, which is a common side-effect for very young children. Hyperactivation is characterized by disinhibited behavior (danger seeking, aggression). It was really pretty heartwrenching because Cassian's social behavior when he wasn't upset was actually much improved and nearly NT-like. We had to drop the dosage again, though, because he was pretty out of control at times.

I queried our DP on what to do next. We could go with a different family of drugs altogether, for example. I had several recommendations from research I had done, but I'm not a psychiatrist. The DP wanted to keep it simple at first, and I took his advice because he's the M.D. He is also very good at explaining his decisions to me. One interesting thing that he told me was that at a later age, the Lexapro might work because Cassian would have grown more prefrontal cortex to inhibit problem behaviors.

The next thing we tried was Zoloft. The dosage this time was very small because Zoloft is quite concentrated. We started with .25 cc's of Zoloft for 2 wks, then moved up to .50 cc's. So far, the Zoloft has been working quite well. We are seeing the same benefits and no hyperactivation. In fact, my Mom, who is visiting to help out before the baby is born, has seen a lot of progress in the past month or so. Cassian has been talking about consequences of his actions, how he has made other people feel, how to resolve social situations, and he has been bringing himself down when he is in a frustrated state quite effectively at times. Frustration tolerance has increased too. Some of this could be a training effect, as we are constantly working on these skills, but I think the frustration tolerance is definately an effect of the Zoloft.

We may add another drug to the mix the next time we see our DP, Strattera. This one is for ADHD symptoms, and the main drawback is that it is very bitter, so if your child cannot take pills, you have to disguise it with something really strong-tasting. Strattera doesn't stay in the system for weeks like an SSRI, so trials with it will take less time. Strattera has also been shown to help grow the prefrontal cortex in ADHD children, which would be a definate benefit to Cassian. The prefrontal cortext is instrumental in inhibition and executive functioning. For our kids, the prefrontal cortex may also help them acquire cognitive functions because it may enhance joint attention for many children with ASD's.

Anyway, that is where we are with the meds. Cassian will gain a little brother and start school in the next few weeks, so it is good to see him handling frustration a little better these days.

Suzi

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Registered: 04-11-2003
Fri, 08-05-2005 - 7:08pm
Samantha
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Registered: 10-09-2003
Sat, 08-06-2005 - 12:14pm

Thank you, Suzi, for posting your experience with Cassian and meds.

~ Chelsea
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Registered: 12-24-2004
Sat, 08-06-2005 - 12:45pm

Mamahh,

You didn't post any message with your link, so I am assuming that you are opposed to the use of SSRI's with children, or something like that. First let me say that I am a psychologist (PHD) and read thoroughly about these meds before trying them with my child. I read not only from popular press sources, but also from professional periodicals and texts. I have had courses in psychopharmacology, physiological psychology, and neuropsychology, and I have taught courses in neuro-development.

The article that you posted warned that SSRI's have been linked to suicide cases, and this is very true with respect to teens and young adults who are put on SSRI's for depression. However, the same effects have not been seen in young children with ASD's or OCD. Even though SSRI's are often used for such kids, you must differentiate based on diagnosis and age of child.

Having said this, I would also encourage any parent who was trying meds with their child to monitor the child very closely, and as Chelsea said, to find a good child psychiatrist to work with them. If you read the posts on this board, you will probably notice that most of the parents here already go WAY above and beyond the typical monitoring of their kids. We have to do this because our kids are usually less responsible, more prone to accidents, etc. than the average child. Some of the kids on this board have even been hospitalized for psychiatric observation when they were first put on meds. Suicides occur in teens and young adults, who are not being watched closely in this way.

While on Lexapro, my child demonstrated hyperactivation, which was very much like an ADHD child with little inhibition. This is not the same as premeditated suicide. Cassian would climb very high on our stair balcony, but he was doing this for the purpose of thrill-seeking - - more like a Bipolar child might do. We took precautions to protect him from his actions when this happened, never left him alone, and lowered the meds soon after.

My child is not depressed, nor has he ever been suicidal (on or off meds). In some children with ASD's the effect of SSRI's seems to be to awaken the left frontal lobe, improving sequencing, auditory processing, and language production. This effect is often linked with a family history of depression, but the child usually shows no real signs of depression themselves. My child also has OCD symptoms, which can be reduced by SSRI's. People with OCD or OCD tendencies do repetitive ritualized activities that interfere with their daily existence. Suicidal behavior is not noted in OCD cases, who take SSRI medications either.

I am not advocating that others on this board run out and medicate their kids, but I wanted to update everyone on our experience with this type of therapy. We also have had much success with floortime, RDI, OT, behavior mod, speech therapy, and some vitamin supplimentation. I would say that the biggest improvements we have seen have been from the behavioral interventions we have tried, although meds have been helping to put Cassian in a more receptive state for this type of learning.

I hope this clarifies my point of view on the subject of medications and what I was trying to convey with my post.

Suzi

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Registered: 03-26-2003
Sat, 08-06-2005 - 1:34pm

We are having a bit of med issues lately from a different perspective I think.

Although we have taken Mike and Dave off meds due to the fact that they did not work for them and made things worse, Cait has been taking meds for about 5 years. She takes a seizure med and an SSRI (Luvox). She is reaching her teen years and long term medication use makes me nervous. Plus she keeps cheeking her meds and doing other things not to take them. The up and down is the worst. She discovered at 5th grade camp that most kids don't take meds so she doesn't want to.

We decided to try to take her off meds and it isn't happening. The seizure meds, well that may be something we are just stuck with. If she has seizures and needs meds, then so be it. But trying to take her off luvox was horrible. I heard after she was on that the withdrawal is the worst with those and often a reason for the increased depression and suicide.

I would love to get her off, but it doesn't seem that I can. She became horribly moody. Slept constantly and was way worse than before meds. It is concerning because she tends to try to skip and hide meds and the inconsistant taking of meds is horrible for her mood too. So before she hits teen years I would like to take her off rather than chance the up/downs and try something else (vitamins etc) but cant get her off without the risk of serious withdrawal and the effects of that.

So for now I have decided to keep her on and treat her like a toddler with meds I guess, but as she gets older this is a decision she needs to make for herself. I wanted to work with her on it while still young enough to work together. I just don't see anytime in the future where I will be able to.

So luvox worked great for her particularly in the beginning for social anxiety, but now I am kind of kicking myself at the other end.

Renee

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Registered: 03-26-2003
Sat, 08-06-2005 - 3:52pm

Let us all be reminded that we are entitled to our own opinions. Formal education does not always indicate the best way or only way to be informed. Each of us are the best decision makers for our individual children since we are the ones who know them best.

valerie

~Valerie
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Registered: 05-27-2003
Sat, 08-06-2005 - 5:08pm

I started meds with Jacob in March we began with zyprexia a very small dose. Soon after I started meds with Dylan he is on risperdal and it is woking very nicely to control his self abuse and agression with others. On Dylan this medication has workrd beautiful and he is making progress at vast rates (and yes I collected data from when the meds started and its working). Jacob on the other hand did not fare as well and we switched from the zyprexia to the risperdal (because I figured it worked so well with Dylan) we have been weening jacob off the risperdal for almost two weeks now and I have not slept since and all of his behaviors are back. I am waiting to speak to the dr. on thursday about what we will put him on. I am glad to see this post because meds are so new to me and I am just trying to find the right fit for Jacob .

Jackie~

 


Jackie~  Jacob , Dylan-James, &

iVillage Member
Registered: 10-03-2004
Sat, 08-06-2005 - 5:53pm

I just want to say that I am so happy to read any and all information and personal experiences on this subject. We have never yet needed to use medication with our son, although that frontal cortex thing intrigues me. We do talk with many of Malcolm's friends parents who do and/or have medicated and this is such a difficult subject for some people, but all information is so helpful.

Should we ever need to consider medication, iy is great to hear stories from all different angles, to feel like I might have a handle on what's available and even maybe who they help or not. So, Suzi, please do continue to update, and thanks to everyone else willing to share!!

yours,

Sara
ilovemalcolm

Avatar for njbeachma
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Registered: 08-22-2003
Mon, 08-08-2005 - 9:49am

"Let us all be reminded that we are entitled to our own opinions. Formal education does not always indicate the best way or only way to be informed. Each of us are the best decision makers for our individual children since we are the ones who know them best."

Valerie, this would be true if she posted an opinion or comment with the link but she didn't. So Suzi had to try to interpret her meaning. I value Suzi's information, not because of her formal education, but because she usually has thoroughly researched both sides of a topic and presents it in a factual unopinionated way. I wasn't going to touch this topic with a 10 foot pole because I am not yet faced with this decision but personally, I would have resented the having a link given to me with no comment, no personal experience, no opinion to back it up. Every decision we have to make regarding our children's treatment is painful to say the least. Let's try to support each other here.

Shelley

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Registered: 03-26-2003
Wed, 08-10-2005 - 10:17am

shelley,

in response, i was merely stating that everyone is entitled to their opinions. i actually agree with suzi that meds are needed sometimes. my 3 yr old is on risperdal for that reason!!!

regardless, i respect samantha as a long time contributor to this board. and her lack of phD after her name does not negate the worthiness of her opinion. i agree with supporting one another. however, i strongly feel that we each know our own children the best to make opinions--whether we have a GED or an MD after our names.

valerie

~Valerie
iVillage Member
Registered: 03-26-2003
Wed, 08-10-2005 - 10:41am

I have to say I agree with Valerie.

Meds are a very touchy issue with lots of different oppinions. There are loads of moms here who's oppinion I respect regardless of thier level of education. There are alot of moms who do alot of research prior to giving meds or other interventions for thier kids and have a wealth of wonderful knowledge.

I realize that Suzi did not mean to cause any strife and also realize it is so easy to misunderstand intent via the internet. But I myself was a bit put out by the reference to her being a PhD. I know she did not mean it that way. I understand that, but more as a mom she researched what was right for her son. It can make one feel as though they are thought to be less worthy if they are not a PhD. It is possible Suzi was a bit hurt by Samantha's post and therefor was defensive in her reply.

Medication issues are one area where things can get ugly, so hopefully folks are understanding each other a bit better now.

Renee

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