Sharlet’s doctors appointment | Autism PDD

Ok, so we went to the doctor. I asked for Risperdal solution as a first thing
to try. Turns out it's not approved here for use in autistic kids. Luckily I
have a good GP and it was mentioned that it is used for ASD kids and it had
the dosages etc in the GP's information. She gave me a private script for it
which means it's not subsidized but thats ok.

She will start on 0.2 ml today and in two days go up to 0.4 ml
Can people who are using it please give me their stories of what it was like
when your child first started and how it is now etc

Thanks all wish us luck, I hope it works...

My son has never had any meds, so I can't help you there. I'm just glad the doc is helping you. good luck.

Best of luck! I am glad you are getting some relief for both of you:)

Please keep us updated on how she reacts to it!

No meds here either. I just wanted to tell you what a great job you are doing and how lucky Sharlet is to have a Mommy like you.

I hope the meds help and you can lay down with your baby tonight and smell her wonderful after the bath clean baby smell! Heaven!

Allegra, does the doctor have any experience with Risperdal? While it's true
it's used in autism, from my understanding it's mostly used to control
aggression in autism, I'm not sure how helpful it is for anxiety. Because
Sharlet's so young, I'd honestly be hesitant to put her on something like
Risperdal, although it is pretty safe at low dosages.

What about Prozac? It's approved for pediatric use, and being an SSRI,
should help with anxiety. Or what about something like Clonidine? The only
thing we've used for anxiety with Donny is Paxil, which works, but has a lot
of undesireable side effects for him...

Good luck!

Allegra,

I use Risperdal for Lachlan. He is on .5mls per day. Effect was immediate. First day.

It is a medication you need to watch but you will soon become adept at predicting whether or not Sharlet is having too much/too little dosage.

Good Luck - keep us updated on how it goes.

Hi Allegra, My son started Risperdal when he was 6 years old. He had bathroom phobia's and would do things that most 6 year olds would not do, like touching a red hot stove burner right after I told him him it was hot do not touch, also he would only eat two foods at the time. HE was also holding in bm's to a point that it was leaking out of him. Risperdal worked great for us at that time, it was only one day use and he started using the toliet, would eat some different foods and we could start taking him out to places, stores, restraunts. My son started out with .5mg's for the first three weeks and then we moved up to 1mg. He did get tired at first from it, which in our case was okay because he never slept for more than 3 hours at a time. The tiredness lasted about two weeks. HE is now 12 and takes 6mg's, but it seams to have lost it's potiency with him. He did gain a lot of weight, but we felt him functioning was more important and we were trying to get him into school. It does not work so well for us now and we are in the process of taking him off of it. It was a miracle drug for us at first, he would only sit on sofa, eat only tuna, brocolli, no playing or interacting with us and would not use restroom before Risperdal, it really changed our lives. Please read all side effects and watch for them.

Allegra,

I pulled the following off of the NIH website in the Autism section under the heading "medications used in treatment."

Medications Used in Treatment

Medications are often used to treat behavioral problems, such as aggression, self-injurious behavior, and severe tantrums, that keep the person with ASD from functioning more effectively at home or school. The medications used are those that have been developed to treat similar symptoms in other disorders. Many of these medications are prescribed "off-label." This means they have not been officially approved by the FDA for use in children, but the doctor prescribes the medications if he or she feels they are appropriate for your child. Further research needs to be done to ensure not only the efficacy but the safety of psychotropic agents used in the treatment of children and adolescents.

A child with ASD may not respond in the same way to medications as typically developing children. It is important that parents work with a doctor who has experience with children with autism. A child should be monitored closely while taking a medication. The doctor will prescribe the lowest dose possible to be effective. Ask the doctor about any side effects the medication may have and keep a record of how your child responds to the medication. It will be helpful to read the "patient insert" that comes with your child's medication. Some people keep the patient inserts in a small notebook to be used as a reference. This is most useful when several medications are prescribed.

Anxiety and depression. The selective serotonin reuptake inhibitors (SSRI's) are the medications most often prescribed for symptoms of anxiety, depression, and/or obsessive-compulsive disorder (OCD). Only one of the SSRI's, fluoxetine, (Prozac®) has been approved by the FDA for both OCD and depression in children age 7 and older. Three that have been approved for OCD are fluvoxamine (Luvox®), age 8 and older; sertraline (Zoloft®), age 6 and older; and clomipramine (Anafranil®), age 10 and older.⁴ Treatment with these medications can be associated with decreased frequency of repetitive, ritualistic behavior and improvements in eye contact and social contacts. The FDA is studying and analyzing data to better understand how to use the SSRI's safely, effectively, and at the lowest dose possible.

Behavioral problems. Antipsychotic medications have been used to treat severe behavioral problems. These medications work by reducing the activity in the brain of the neurotransmitter dopamine. Among the older, typical antipsychotics, such as haloperidol (Haldol®), thioridazine, fluphenazine, and chlorpromazine, haloperidol was found in more than one study to be more effective than a placebo in treating serious behavioral problems.²⁶ However, haloperidol, while helpful for reducing symptoms of aggression, can also have adverse side effects, such as sedation, muscle stiffness, and abnormal movements.

Placebo-controlled studies of the newer "atypical" antipsychotics are being conducted on children with autism. The first such study, conducted by the NIMH-supported Research Units on Pediatric Psychopharmacology (RUPP) Autism Network, was on risperidone (Risperdal®).²⁷ Results of the 8-week study were reported in 2002 and showed that risperidone was effective and well tolerated for the treatment of severe behavioral problems in children with autism. The most common side effects were increased appetite, weight gain and sedation. Further long-term studies are needed to determine any long-term side effects. Other atypical antipsychotics that have been studied recently with encouraging results are olanzapine (Zyprexa®) and ziprasidone (Geodon®). Ziprasidone has not been associated with significant weight gain.

Seizures. Seizures are found in one in four persons with ASD, most often in those who have low IQ or are mute. They are treated with one or more of the anticonvulsants. These include such medications as carbamazepine (Tegretol®), lamotrigine (Lamictal®), topiramate (Topamax®), and valproic acid (Depakote®). The level of the medication in the blood should be monitored carefully and adjusted so that the least amount possible is used to be effective. Although medication usually reduces the number of seizures, it cannot always eliminate them.

Inattention and hyperactivity. Stimulant medications such as methylphenidate (Ritalin®), used safely and effectively in persons with attention deficit hyperactivity disorder, have also been prescribed for children with autism. These medications may decrease impulsivity and hyperactivity in some children, especially those higher functioning children.

Several other medications have been used to treat ASD symptoms; among them are other antidepressants, naltrexone, lithium, and some of the benzodiazepines such as diazepam (Valium®) and lorazepam (Ativan®). The safety and efficacy of these medications in children with autism has not been proven. Since people may respond differently to different medications, your child's unique history and behavior will help your doctor decide which medication might be most beneficial.

Medications (update from Feb 2007)

On October 6, 2006 the U.S. Food and Drug Administration (FDA) approved risperidone (generic name) or Risperdal (brand name) for the symptomatic treatment of irritability in autistic children and adolescents ages 5 to 16. The approval is the first for the use of a drug to treat behaviors associated with autism in children. These behaviors are included under the general heading of irritability, and include aggression, deliberate self-injury and temper tantrums.

Olanzapine (Zyprexa) and other antipsychotic medications are used “off-label” for the treatment of aggression and other serious behavioral disturbances in children, including children with autism. Off-label means a doctor will prescribe a medication to treat a disorder or in an age group that is not included among those approved by the FDA.

Other medications are used to address symptoms or other disorders in children with autism. Fluoxetine (Prozac) and sertraline (Zoloft) are approved by the FDA for children age 7 and older with obsessive-compulsive disorder. Fluoxetine is also approved for children age 8 and older for the treatment of depression.

Fluoxetine and sertraline are antidepressants known as selective serotonin reuptake inhibitors (SSRIs). Despite the relative safety and popularity of SSRIs and other antidepressants, some studies have suggested that they may have unintentional effects on some people, especially adolescents and young adults. In 2004, after a thorough review of data, the Food and Drug Administration (FDA) adopted a “black box” warning label on all antidepressant medications to alert the public about the potential increased risk of suicidal thinking or attempts in children and adolescents taking antidepressants. In 2007, the agency extended the warning to include young adults up to age 25. A “black box” warning is the most serious type of warning on prescription drug labeling. The warning emphasizes that children, adolescents and young adults taking antidepressants should be closely monitored, especially during the initial weeks of treatment, for any worsening depression, suicidal thinking or behavior, or any unusual changes in behavior such as sleeplessness, agitation, or withdrawal from normal social situations.

kristys39295.7873726852Well from reading about it I think it could help, it say irritability and
tantrums and these things are major side effects of Sharlet's anxiety. She is
always so fragile. She also has self injuring when having panic attacks like
gauging at her face and pulling her hair. Anyway, we are going to be doing
it under supervision of her Pediatrician and if it isn't doing what we want in
two weeks we will try something else like a prozac wafer or SSRI or a beta
blocker. We will see how it goes and the dose is going to be tiny of the
Risperdal at first, if 0.2 ml works, we will keep it at that level.

However, if anyone else feels I shouldn't try it, please let me know.
Thanks everyoneI'm hoping for the best. I know it's difficult to make a decision when and
how to medicate your child. I think you are doing a phenomenal job. I am
impressed that educted yourself enough to ASK your doctor for risperdal.
So many parents find themselves researching a medication because the Dr.
recommended it.

You are a wonderful mommy. I trust you will know if risperdal will help
Sharlet. I hope it's an easy journey for you.Well after reading for another 2 hours, I feel pretty confident that this was a
good place to start. It is used to treat sudden mood changes, Agitation,
Irritability and Tachycardia, and these are all things Sharlet suffers from
terribly, It also helps with self harming which is something Sahrlet does
during a panic attack. I know it's not necessarily used to treat phobias and
anxiety, but I feel that all the behavior modification methods that we have
tried for the phobias and anxiety may work for us a lot better if the fore
mentioned issues ease.

We'll see... She took her first dose a few hours ago, and today has been a
terribly difficult day for her Agitation and mood swings, I think I have
already seen her become a little calmer.Allegra39295.9906597222Hoping things are going well, no meds experience, but wanted to add my well wishes, for you and Sharlet!Yes hang in there hun
U are such a great Mum

We are still on the medicine merry-go-round
Ds is in a new program it is a residential rehabilitation program
They have a psychiatrist,psychologist,social worker, nurses, and one on one staff
They goal is to teach him to become self-aware and self-regulate
I miss him terribly
the short visits are so short he will get to come home for 3 hours tonight
they want us to take it slow

Aren't you glad you asked how we were?

I have only had one student who took Risperdal and it had excellent effects on his ability to remain calm, and focused, and socialize! Unfortunately over time he had a significant weight gain and his doctor recommended taking him off of it.

I wish you all the best. If this medication does not work out, another one will. You are such a loving mom doing everything you can for your little girl. She is very lucky.
Although Risperdal was a disaster for my son, many here have had positive results. I hope it works out.Payne is on Risperdal...he takes a 2.25 mg 2 times a day and 2mg at night. Has been on it for over 2 1/2 years now. We tried the Abilify, Seroquel, etc with no relief - actually made it worse. He is also on Prozac for his anxiety of new things/ people. This is a stepping stone. The only concern I have with her is that her ped has EXPERIENCE with this medicine or a pharmacist (ours is the pharm mgr - he knows all of our meds b/c I'm in there so much) that can help. It seems like he's doing the right thing...you start AS LOW AS POSSIBLE and go up until the sx stop. Our dr does not like to go over 6 mg in a day...Payne, however, at one point (before we added the Prozac) was at 10mg in a day. Keeping my fingers crossed for you ...

I swear, everytime I look at a picture of Sharlet, I am moved by her beauty and angelic face. I pray that she can find some peace and balance.... and you too. Maybe this is the answer.

Thanks so much everyone for all the support, the more I read the more I
think it might work for her, but I'm also worried about the weight gain and
other side effects. She has a very poor appetite, so an increase might not be
a bad thing. When she does eat it's a lot of fruit, not that much fattening
food. Mc'Donalds chips maybe twice per week is the worst it gets really. I
will try to keep her diet low fat and sugar, I really don't want to see her
weight balloon...Allegra - I have no experience with meds but have my fingers crossed that this helps Sharlet. Please keep us posted on how she's doing!

I hope so much that Sharlet respond positive to this and it helps her:) Everyone here is cheering for her to get better:)

Please keep us posted on her progress:)

I really hope that this helps.

I think of you every night when I'm putting my little guys in the tub. I hope that one day soon you'll be posting a video for us of Sharlet happily splashing away in the bath.

Best of luck. Please keep us posted.

Hey Allegra how are you all now?

I am still thinking of you
I wish you well in all this
How is the baby doing?
We are hanging in there, It's a nervous time for all of us with starting meds
for the first time and not knowing how they will affect her. And seeing
things in Nina that are worrisome and not knowing how that will turn out.

I hope that things will et better from here on out, if they don't we will keep
trying and keep on hanging in there.

How are you and your son doing?

I'm dying over here...how did it go with the meds?Q has been taking Risperdaol for a little over 2 years now...He takes 0.25mg 3x/day..I remember being told that it would take a few weeks before we would see a change in his behavior.
At the same time he started the Risperdal he was started on Ritalin. we just took him off of the Ritalin so we'll see if his weight goes up...so far his weight is ok.

Hi Allegra,

I am just catching up from being away; can't believe I had to go to page 25 to pick up where I left off!

Just thought I'd bump this to see how Sharlet is doing with the meds. Your family has been in my prayers!

Mary

Hi Mary,

It's working very well for overall behavior, meltdowns and resistance to change, but unfortunately we haven't seen much reduction in panic attacks, phobias and the bath thing hasn't gotten any better yet. Still I'm very happy with the results and the drooling stopped and she is now talking more rather than less like she was at first.
The fact that day to day she is a lot more regulated and calmer and far less irritable has made dealing with the phobias and panic attacks easier if that makes sense. Also I think that the desensitization and behavior modification will work faster and easier with the meds. Overall I'm very glad we did it.

Thanks for asking

hmmm, interesting Sunny, thanks for the info We have had Payne on 6.5 mg Risperdal in a day (broken into 3 doses) for years now...we put him on Prozac (twice a day) b/c of his anxiety around people, new situations, stimuli, etc. and Clonidine for ADHD & impulsivity....He eats constantly but doesn't gain weight. Maybe an anti-anxiety trial would help?? If it doesn't help with the bathing - stop giving it to her. It REALLY helped Payne be able to be in larger groups of kids, disruption of schedule, etc.

ETA - For the record, Payne went into a manic state on stimulants...so if at first don't help - you wouldn't be alone.
Payne's Mom39316.3243171296yes, prozac wafer is our next step if by the end of the school year there is no progress with the behavioral methods.
I will be on my own for approx 4.5 months until school starts the following year so it will have to be prozac if things don't ease by then.
I hate to make it sounds like meds are GREAT...but in our case with Payne (he's over 4 1/2 feet tall, 70 lbs) his mood would reflect where and when we could do ANYTHING, we tried behavioral stuff with him...BCBA, etc. Helped but not enough. I'm just saying ... I'm glad you're at least considering it. I know that she's miserable being exposed to things that she flat out is anxious about...nothing like adrenaline making your heart palpitate to take a bath...you know? If you try it and it helps - wonderful! If it doesn't, stop - it should be out of their system in a day or so - if I remember correctly. Shouldn't be any lasting issues either. CJ has been on Risperdal since last Fall. I saw an immediate change in the rages and tantrums. Honestly, I can barely remember the last time he has had a complete meltdown and I truly think it's because of the Risperdal. The doc knew he needed something when he hauled off and threw a child's laptop computer across the room nearly breaking a window simply because the doctor tried to help him pick it up off of the floor. He used to headbutt me constantly and I don't see any of this behavior now. He is a loving little boy and this medication has helped tremendously. He was on .25 twice a day, but now that he is getting a little bigger his dose is .5 twice a day. Good luck!!

ETA: CJ has not had any weight issues. He is also on Focalin XR (ADHD) and I think they compliment each other well. The focalin decreases his appetite while the Risperdal increases it. So it evens it out.
SunnynCJ39316.2727083333When Skylar started taking it, he started of on .50mg before bedtime. Well I started his first dose at 4pm (due to he takes .1 mg of Clonodine at 6pm and I didn't know what kind of reaction he would have with them taken together). Well let me tell you (and this sounds so terribly bad, but it was funny as hell) his was in liquid form and given in a teaspoon of applesauce, well about 30-45 minutes later, he was stumbling around, talking all kinds of non-sense like a little drunk old man. Speech was very slurred, the whole nine yards. After that night, the following day, I gave him the same dose at the same time and he was fine. NO problems at all. After a few weeks, I was having a hard time seeing that it was making a difference, so I took him off of it. Then about a month later, he went back to his psychiatrist and I explained to him that I took him off of it and that his FocalinXR was doing NO good anymore (which the doc told me that right before school was to start that this would happen and we would change his meds). So, He put him on Concerta 36mg, upped the dose of Risperdal to .75mg at 5pm and kept the Clonodine dose the same. And things have been AWESOME ever since. The aggression is almost completely gone, the tantrums and meltdowns are rare.

I think its a good thing that you are trying it with her, give it a while and see if you can see a difference. IF NOT, then talk to your doctor again about raising the dose. The ONLY side effects that we have seen is weight gain.

Good luck hun, and keep us posted.

Jason just started Risperdal about two weeks ago on half the .25mg dose every night...and he's actually sleeping through now! (Melatonin did not work for that, unfortunately) No more nighttime waking and screaming, and his aggressive behaviors have dramatically reduced! It's picked up this week, what with his older brothers starting back to school and his therapy starting up again (today not a good day). Still, this is nowhere near what it used to be. No kicking, pushing, slapping, or hair pulling, and he seems to feel much happier. He smiles and cuddles more, though I am seeing no increase in appetite or any other side effects whatsoever besides sleepiness, which actually helps him sleep at night, but seems fine during the day. He has also seen a huge decrease in meltdowns...now they are rare.

I went this route because I am having extreme difficulty so far trying to get him in to see a behavioral therapist for the aggressive behaviors. Apparently, they are all too busy to take him on.

I am hoping to phase him off the Risperdal once we've tackled the behaviors thoroughly through therapy. At least now he can settle down and focus! I wasn't expecting that, but I guess that is why the psych didn't want to treat his hyperactivity...he said it would make his aggression worse!

I was extremely nervous giving this to him, (and I hesitate to tell you guys here, I'm afraid of getting whacked over it!) even at half the lowest dosage, but it really seems to be making a difference for him right now. I just hope to have him off it sooner rather than later.