To medicate, or not to medicate?!?!?

iVillage Member
Registered: 12-13-2006
To medicate, or not to medicate?!?!?
9
Fri, 07-06-2007 - 10:23am

Here's our latest challenge.... DS who turned 3 in May has been dx with PDD-NOS since 9/06, and now recently OCD has been added to his dx. He has meltdowns, gets "stuck" on balls/balloons/bubbles, gets angry and frustrated when he can't have ALL the balloons or balls, or when he can't pick them up at the same time. He bolts reguarly, and although he's now in preschool it really hasn't helped with his impulsivness. He HAS to dump out any containers that he sees, ie. water, juice, toys, trash, etc... He pulls/grabs hair out of the blue, tries to run out of the classroom and has a very hard time focusing on anything for a period of time. He walks around carrying toys not necessarily 'playing' with them. He isn't really able to focus on any one thing at a time and it's although he just cannot sit still, it's like he's jumping out of his own skin!

His Neuro suggested the possibility of medicine stating that without it, his impulsivness, lack of control, can affect his ability to learn. We are going to revisit the issue at his August appt. Recently we brought him to a child physc who specilaizes in Autism and developmental delays. She also suggested medicine as an alternative and feels that it may help him considerably in terms of being able to 'control' himself as well as focus.

For those of you who have experience with medications I'd be thankful to here your input. I'm worried about side affects, will he become a zombie? What about dependency? Do children typicall need to be on meds for the rest of their lives once they start in these situations?

Thanks so much!!

iVillage Member
Registered: 03-26-2003
Fri, 07-06-2007 - 10:49am

Though some have definitely had good luck with medication, that has not been our experience. It is a very personal decision and I won't tell you to go one way or another but I will tell you our experience and my information on the matter.

First, there is no medication for autism in particular. OCD or OCD symptoms are often due to autism. It can be a separate diagnosis but at his young age and with his background, autism seems more likely. There are some medications that can treat symptoms that are part of autism but getting the right one can be tricky. Many of our kids have paradoxical reactions to medication.

A good rule of thumb if you do decide to try medications is to start REALLY small and increase very slowly. Often our kids need less medications or if they are going to have a negative reaction it would be better on a small dose. I would also caution using multiple medications. Unfortunately giving meds to children has become too easy a practice and before you know it a child is on 3,4, or 5 medications. Often the extras added to counteract the side effects of the first.

We have 2 ASD kids (ages 13 and 11) who have had very different reactions. Thought i would share briefly.

We tried a med or 2 for our 13dd at 3 at the doctors recomendation for ADHD type behavior. It was not good (horrible in fact) and we took her off within 3 days and used natural alternatives. We tried again around 5 (using different class of meds) because of some issues around wanting her to be able to be mainstreamed in school and being pushed to do so. It helped for a couple years and we took her off due to it stopping helping and my issues with having small children on medications long term (what could the side effects be sort of thing). We had to put her back on a few years ago for epilepsy and her epilepsy meds actually help lots of different issues. Though I likely wouldn't have her on if she didn't have seizures.

My 11yo son started with meds around 5 as well (we held off for him due to his sister and did natural treatments first). Meds for him never worked and often had a negative effect. We tried many different kinds and combinations at doctors recomendations and he just continued to get worse until it got so bad I fired all his docs and took him off all meds. He still takes nothign and is doing better this way.

What we do use is a combination of diet, supps (omega 3) and behavioral approaches. It isn't a quick fix and it isn't a cure but there isn't a cure or quick fix with autism. he is happier and definitely does much better this way.

So if I were you at 3 yo I would try other methods first. Diet, supps, behavior and patience. It is not easy living with a child with autism and it is very hard to deal with those obsessions (btdt, I know). But with time, education, social stories, etc. It does get better.

You may need to use meds at some point. It may help him in fact, but if it were me with a young child, I would wait and try everything else first.

Also, I know when I put my kids on meds one thing I was looking for was that quick fix. Something that was going to make things better. Unfortunately I have had to really come to grips with autism being a developmental delay and life long. They do make wonderful progress and things do get better but there has not been a quick fix. Even with meds that help a symptom or 2, the autism is still there.

Renee

Photobucket
iVillage Member
Registered: 08-10-2006
Fri, 07-06-2007 - 11:51am

Hi!


Here is our story, but as Renee pointed out, meds dont work with each child, start with the LOWEST dose and work up.

< < Photobucket

Christine

iVillage Member
Registered: 10-03-2004
Fri, 07-06-2007 - 12:25pm

Hi and welcome to the board!

The previous posters have said what needs to be said, which is unfortunately that there is no quick fix, every child is so different and the only way to find out if meds will work for your child is to try them, trial and error, very yucky... And some ASD kids have super bad reactions on the drugs. And some the drugs really, really help. Rough answer, right?

We used all natural approaches very sucessfully with our son until he was almost 9 years old. One of our biggest approaches had to do with controlling his surroundings, making sure his challenges were not outside of his ability to cope. Our son was in small classes, lots of sensory support, trained teachers and therapists who understand and help him with upsets, learning triggers, coping techniques, how to recover and then again be available to learn.

How large is this preschool? Is it a regular or special needs preschool? Does he have an aide, timeouts to relax, beanbag chairs to squash in, other sensory assistances? There are so many things to try first before trying the drugs.

Now we have added a small amount of an anti-depressant, Zoloft, which does help my son with his anxiety and focus. As he has gotten older and more independent, he now needs more help controlling his body and emotions without constant shadowing, and we were lucky that he does well on Zoloft. We do still have to watch his diet (also omegas, Bs, probiotics, limited dairy), have him exercise hard and often, and keep him in appropriate environments, adding to his challenges gradually. As he is now 10, he does have more control over his impulses and, with behavioral modifications, can stay in charge and participating throughout his day!

Stick around, let us know how things are going. When our children are struggling and we are grasping for what to do, it is all SO hard on the parents. This board is a great place to get support, questions answered or just discussed and generally blow off steam...

yours,

Sara

iVillage Member
Registered: 12-22-2003
Fri, 07-06-2007 - 12:43pm

We have two kids on the spectrum and have use meds for both, but it was not something I ever *wanted* to do.

With our oldest, his OCD issues definitely affected his ability to learn. He was completely unable to focus on what was happening at school because he was so fixated on his current obsession- whatever that may have been at the time. I can't remember the first thing we tried him on, but it did turn him into a total zombie. So we took him off almost immediately. After that we had incredible success with Adderall and then Adderall XR...that success lasted almost 3 years. At some point, he started pulling out his own hair, eyelashes, etc., and we were able to relate it back to the medicine loosing it's efficacy (sp?). Now he is on Concerta and is doing very well on it as well.

With our youngest, I fought and fought putting her on meds because her language delay is such that I wasn't confident she would be able to relate any side effects to us. Eventually things got bad enough that she couldn't function because of her obsessions- and she was getting very depressed. She knew that she wasn't doing what she was supposed to do, but was unable to stop herself. The first med we tried her on was Zoloft- which, although being an antidepressant, has been known to help kids stay calm and focus. I thought we'd found a miracle med for our little girl! Suddenly she was engaged, willing to try new foods (self-limiting diet is one of her biggest problems)- it was amazing! However, after several months of success, she started what I refer to as "rapid mania cycles" where she'd go from abnormally giddy to curl up in a ball and sob for no known reason. We started to see signs that made us think she could have a bipolar disorder as well. So...we agreed to try her on Risperdal. It's been 6 weeks, and it simply hasn't worked for her- so we're now in the process of titrating her off of it. We will probably try her on another med, but it may be a while because our current doc is closing her practice and moving away...and I'm not willing to jump into med management until I get to know the new doc a bit better.

I guess my point in explaining all this is that there is no easy answer when it comes to meds and our kids. We've had some success, we've had some failure. The important thing, should you decide to go this direction, is to do your research, watch your child closely and feel comfortable enough with your doctor to have an extremely open line of communication.

Amy

Meez 3D avatar avatars games

Avatar for littleroses
iVillage Member
Registered: 03-28-2003
Fri, 07-06-2007 - 3:37pm

delete




Edited 2/19/2008 1:42 pm ET by littleroses
iVillage Member
Registered: 12-13-2006
Fri, 07-06-2007 - 4:17pm

Thanks for all the input. We do have a lot of thinking to do. I definitley want to learn as much as possible about ALL the possible effects, both negative, and positive before we decide. Right now it's as though we're living in 'lock down'. Our DS can't be left alone for even 5 minutes unless he's gated in the toy room, otherwise his impulive nature takes over squeezes out any tubes/lotions/drinks he manages to find. He'll dump out all of the shampoo bottles, juice and milk from the fridge, etc. He'll empty out food from containers, salt and pepper shakers, etc. It's almost impossible to keep EVERYTHING out of his reach, therefore we need to gate off and/or lock down our entire house. Nevermind if we're outside... that's when the 'bolting' takes over... I just feel for him. He must be going out of his mind with all these feelings of anxiety, stress, hyperactivity, etc... One positive thing we have going for is that he's starting to talk more and more, so hopefully soon he'll get to a point where he can actually 'tell' us what he's feeling and WHY he needs to act out the way he does.

Thanks again!

iVillage Member
Registered: 02-13-2006
Sat, 07-07-2007 - 12:31pm

Amy,

Just a note about Risperdal. We are in the process of discussing putting our DS (8) on this med and the psychiatrist he went to happens to be heavily involved in research with PDD kids and Risperdal. She stated specifically that it would take *at least* 6-8 weeks before there was any noticeable improvement, and it could be between 6 and 9 months (depending on age) before thefull effect would take place. I'm just wondering what your doc said about how long it should take to see effects.

I'm going to post a separate thread on this subject, but just wanted to see what your experience was. This psych seemed to have a lot more information than I've seen anywhere else on Risperdal.

Thanks,
Melissa

iVillage Member
Registered: 12-22-2003
Sat, 07-07-2007 - 1:50pm

Melissa-

Thanks for the info. We were aware of it, as our doc gave us the same information. But our doc said we should see something that resembles improvement by the 8 week point, especially since we'd already titrated her up to a dose that was higher than I was comfortble with. For us, things were getting worse, not better.

Truly, since Claire's downswings have never involved "rages" (she doesn't get mad, she gets terribly sad) the Risperdal was a bit of a long shot for us.

As a very wise, dear friend (Renee) said to me recently, in order to justify the use of a specific medicaton the positives have to far outway the side effects and risks. For us, it doesn't make sense to continue with the Risperdal because we've seen no benefit and the side effects have been ugly.

Amy

Meez 3D avatar avatars games

iVillage Member
Registered: 04-28-2007
Sun, 07-08-2007 - 12:20am

Well, my ds (7) was dx with mood disorder-nos at age 4 and we were at the point of no return where we had to try something (tried therapy et al); in the space of a year he had been on trileptal, abilify, geodon and lithium. These meds either did nothing, or had icky side effects. When we tried straight ritilin he had absent seizures.

Last summer we had him off everything and he was in the worst shape he has ever been in; I thought we would have to hospitalize him (remember we were only dealing with the mood disorder and poss adhd dx at the time). Once in a new school in the Fall he was reassessed and also dx with ASD, placed in a self contained classroom and we revisited meds (we HAD too). We tried risperdal, and after some hiccups with other adhd meds, are comfortably also taking focalin xr

This seems to be the best combination for him and he honestly is thriving (although peer interaction is still a huge struggle for him). So in short we have run the gammit with meds (although Renee could probably top that one, lol); and I am glad we kept trying as we did eventually find a good combo for ds. We also use omega 3's, which is a very real option for you; you can get the liquid form , but you will need a high EPA dose; Nordic Naturals or Omega Brite are good options.

Hope you find what you need,

Dee

Photo Sharing and Video Hosting at Photobucket

Lilypie 1st Birthday Ticker
Lilypie 5th Birthday Ticker
Lilypie 6th to 18th Ticker

Lilypie Breastfeeding Ticker




Photo Sharing and Video Hosting at Photobucket