what is a good recommendation for medication???

Sasha - posted on 01/30/2009

It would be so wonderful if we has the medical care in the that you have in the US. Here getting ANY help is an uphill struggle, and they bang kids on drugs and then that's it, and if you don't agree with what the 'pros' say they decide that the offer was made and refused so you clearly don't want help so you can just get on with it. A huge number of families of kids over here who have emotional difficulties stemming from real trauma get chucked on meds and then left to stew, then authorities are suprised when they go around attacking people in their mid to late teens.



If meds are part of a process, they can be a fantastic tool. They are one string in raising childrens who, through no fault of their own, are having huge difficulties sharing our world. In adition the parents need support and advice, reasurence, and to know they have some right of reply if they do not think things are quite right despite the medication. All the best to all of you, and have a little bit of your mind always bancing in the clouds so when it gets hard the rest of your mind has somewhere soft and suishy to go for a hug.

Emily - posted on 01/30/2009

Hola soy Emily crezy

Kate - posted on 01/30/2009

First of all, Kerry, you crack me up: "you can see what nasty traits might come out in him, that really do need meds!" My son is almost 11 now and sometimes it feels like there's always something just around the corner. You get through one challenge and resolve a certain behavior and life just plunks down a new surprise.

To the topic, ds is an Aspie with Mood Disorder. He was diagnosed about 2 years ago and we've tried a variety of approaches. OT, as others have mentioned here, was one of the best things that's ever happened to him. We had a similar breakthrough to the compression therapy mentioned above--once he could ask to be 'squished' we had something we could do to help him, and the therapy relieved a lot of his internal frustration and his behavior at home improved immensely. However, with age he became more volatile and anxious, and has a history of lashing out at school, getting in fights and throwing tantrums. We've tried some dietary modification, the results weren't drastic so we're not religious about it, but some kids are much more responsive to it. My sister-in-law had really good results with it with her Asperger's child.

So now, my son has been on a mood stabilizer (trileptal) for about 8 months and risperdal for one. The mood stabilizer was very helpful for self-destructive thoughts and behaviors - hitting himself, saying he wished he was dead, that kind of thing - and for rages. However, we were still having the tantrums and 'territorial' fights at school and with his sister (12). Since starting the risperdal, we have had no calls from the school (except good ones!). My husband, who works freelance so that he can be home after school and get free easily if there are issues during the day, is accustomed to getting calls from the teachers at my son's school at least twice a week for some behavioral issue. Wednesday MY SON tattled on his SISTER for hitting HIM--and he didn't hit back. Last night, when I turned off the TV even though he had started to watch a new show, and he asked to watch some more, and I said no... he said 'OK'. No crying, no meltdown, no throwing things or stomping or slamming doors. To me this is a minor miracle. In addition, we haven't had any negative side effects so far. He takes the risperdal at night because it does make him sleepy, but he's fine during the day. Now, he is a little stick, and has been since he turned about 2, so I don't know how I would feel if he started gaining an inordinate amount weight. I'm curious how long it took for that to happen from people who had this problem.

I think there are a lot of other things you can do to help your son, and staying alert to any signs of something wrong is important, but from personal as well as parental experience, I think it can be prudent and worthwhile to try medication. If it doesn't work, you'll know it. If it does, it can change your whole family dynamic.

Stacy - posted on 01/29/2009

My son wasdiagnosed with ADHD, Impulse Control Disorder, Obsessive Compulsive Disorder, PDD-NOS and Sensory Integration Disfunction.  I always resisted medication for my son until he started becoming very violent in kindergarten.  My son was not able to communicate what he needed and would lash out against the other children hurting them severely.  I decided to try medication and when he was just under 7 we started him on Ritalin.  We noticed a difference right away in his behavior and ability to focus.  This seemed to work for the most part but we still noticed that it was not quite working on all aspects (he would still have isses if people came into "his space").  When I mentioned this to the doctor she started him on Risperdal and that has been my God send.  You don't notice big differences right away but as time goes on you start seeing little behavioral diffeences and it is awesome!  He is now 12 and along the Risperdal and Ritalin he also takes Chlonodine (one pill at night to sleep and 1/4 pill in the morning to calm him down).  I think that we finally have the meds figured out and I coudn't be happier with the decision to put him on them.  I say only use medication if you are using them along with other therapies as medication itself will not work but if you need the medication, that's what it's there for.  When I questioned his doctor when she wanted to put him on these meds she asked if I would give him medicine for diabetes.  I said yes.  She then asked why then I was hesitant to put him on medication for this problem.  I didn't have a good answer!!  I hope this helps. 

Stacy - posted on 01/29/2009

My son wasdiagnosed with ADHD, Impulse Control Disorder, Obsessive Compulsive Disorder, PDD-NOS and Sensory Integration Disfunction.  I always resisted medication for my son until he started becoming very violent in kindergarten.  My son was not able to communicate what he needed and would lash out against the other children hurting them severely.  I decided to try medication and when he was just under 7 we started him on Ritalin.  We noticed a difference right away in his behavior and ability to focus.  This seemed to work for the most part but we still noticed that it was not quite working on all aspects (he would still have isses if people came into "his space").  When I mentioned this to the doctor she started him on Risperdal and that has been my God send.  You don't notice big differences right away but as time goes on you start seeing little behavioral diffeences and it is awesome!  He is now 12 and along the Risperdal and Ritalin he also takes Chlonodine (one pill at night to sleep and 1/4 pill in the morning to calm him down).  I think that we finally have the meds figured out and I coudn't be happier with the decision to put him on them.  I say only use medication if you are using them along with other therapies as medication itself will not work but if you need the medication, that's what it's there for.  When I questioned his doctor when she wanted to put him on these meds she asked if I would give him medicine for diabetes.  I said yes.  She then asked why then I was hesitant to put him on medication for this problem.  I didn't have a good answer!!  I hope this helps. 

Anne - posted on 01/29/2009

HI there again,

I realized I did my post and didnt say what meds my kids were on *grin*.

My twins- daughter/son- They both are on Zonegran- which is a mood stabilizer- when the meds for ADD dont work, the doctors will evaluate further for Bipolar disorder.  There is a book called "The Bipolar Child" By Dr. and Janis Popolous (sp). Dr. Popolous and his wife wrote the first book for children with Bipolar disorder,  The first edition came out in 2000, the 3rd edition came out last year.  They were on 20/20 in the year 2000.  They interview over 1000 parents for that book.

They are also both on zyprexa, my daughter is on abilify.

They were both on risperidol when they were 9, they gained 40 pounds each on risperidol. They didnt lose the weight until they were both on Zonegran.  Zonegran was also used in a weight loss study. 

We went through multiple medication changes until we got to the Zonegran, Zyprexa combination.

Hope this is helpful,

Anne :)

Heidi - posted on 01/29/2009

my son was diagnosed with asd last nov.he was put on rispiridol at the age of six because of his violent out bursts.i regret agreeing to this as what they dont tell you is that its only a temparary solution.my son became very obese which is 1 of the side affects of the med and when he had to be weened off it his behaviour was worse than ever.he was very violent towards me.if id known then what i know now i wouldnt have gone down that road.

Anne - posted on 01/29/2009

Hi there,

I know what you are going through.  I have 3 children- twins- daughter/son- 18- PDD-NOS, Schizoaffective disorder ( which is one upgrade from BiPolar disorder) my son- ADHD , my daughter- Phonologic disorder.  My younger son is 16- Aspergers, depression- dysthymia, ADD, sleep disorder.

My twins were diagnosed at 3 with expressive/receptive language delay, and my son ADHD.  He was a wall climber, etc.. etc.. etc...  The social worker at their school who we saw every week for family therapy suggested he be on medication.  When he was about 4 the doctor prescribed ritalin.  It didnt work.  I did the diet, everything.  Then the doctor prescribed adderall.

A crisis intervention team even came to our house.  When I showed the psychologist the book 1-2-3 magic that the school gave us, he said to burn that book, that it wasnt going to work with my son.  The crisis intervention team was actually from an autism school in New York where we lived.   A teacher from the school came once a week to our house.

 It wasn't until my twins were 9, in residential treatment, that they had neuropsychological exams and were finally diagnosed PDD-NOS, schizoaffective disorder, my son ADHD, my daughter phonologic disorder (speech).

 My twins have probably been on every mood stabilizer on the market.  It wasn't until 2004, when my son was in the acute care psychiatric unit for 3 weeks that he finally was on the right mediation combination.  My son did so well, when he was discharged, and we went back to their psychiatrist for the follow up, we had my daughter switched to the same meds.

They are 18, they both graduated HS on time, my son is in the culinary program at his school. My daughter hasnt decided what she wants to do, she is on the vocational rehab waiting list.  She worked in her dads office one-two days a week doing filing.

I have friends on facebook here who have a 6 year old son who just went through the same thing.  You can send me a friend request and I can also hook you up with them.

I would suggest a full neuropsychological exam.  You want to find out whats going on.  Psychiatric illnesses- bipolar disorder, etc.. are degenerative brain diseases.  They hae also identified 6 different types of ADD on spect scans.  The earlier the treatment the better the prognosis.

I used to be on a bipolar parent list about 10 years ago, and there was a couple on there who had a 3 year old and they ended up having to put the 3 year old in residential treatment. The 3 year old was diagnosed bipolar and I forget what else.

I hope this was helpful,

Hugs,

Anne :)

Sasha - posted on 01/29/2009

The glasses thing was just curiosity. I have worked with three autistic children who were also deaf, and I remember talking to one of their mums anout how hard it was to get help for anything beyond hearing difficulties. None of those three would keep their aids in, and the youngest managed to get rfused for an implant because of the risk of them ripping it out. Of the three, he was the only one who was mute, and I last saw him at 5 yrs old, so anything could have happened since, but they always stay in my memory. They were three very special (unrelated) children. I count myslef very privilaged to have worked with so many children on the spectrum, I think it has helped with my own son no end.

Janean - posted on 01/29/2009

Hi my son was also Diagnosed very young was violent with other children so angry and frustrated most of the time. I tried everything I new and tried to learn as much as I could on parenting him. I would watch him he wanted to play he wanted to watch cartoons but it was physically impossible for him. I wanted people to see the child I new was inside that only I got to see. It is a personal choice but if the doctor told me he had a heart condition he needs meds I would never question it. Dylan has been on meds for three years he is monitered monthly by his doc and I can tell you the Rage outbursts have ended. We have good days and bad ones we except that It took time and patients to get the write combination

Melissa - posted on 01/29/2009

Hi Daisy, I have a 5 year old with Autism too. If your newly diagnosed I would recommend reading alot of books and searching the net on this syndrome so you can better understand the effect's the syndrome has on your son and you may find he has sensory issues aswell that can cause the hyper activity.
Then try an early intervention programme for at least 6 month's before you consider medication. I've been applying an early intervention programme with my son for about 18 month's now and it has made a huge difference for the better, the programme includes Occupational Therapy, Speech Therapy ect on a opposite weeks and a Teacher's aid who is qualified in the field. I found the more we worked to suit him and his needs the better he responded to the world:) Good Luck! I am happy to talk anytime you need to.
Regard's, Melissa.

Kerry - posted on 01/29/2009

ps. my sons focus issues seemed to be gone when he decided he would not take ritalin anymore, he did not say anything about any problems, and seems to focus on the tv or playstation without any trouble.  possibly another immaturity issue that 'clicks' in??

Kerry - posted on 01/29/2009

hi sasha, see if you can find a peadiatric opthalmologist or someone trained in eye testing for special needs kids.  I think that an AS kid can clearly see the difference that the corrective lenses would make to their sight.  Perhaps the questions by the eye specialist when they use the gadgets, could be is that better or worse? so they could get the prescription right. 

There are really trendy frames available now and kid tough ones too so they dont break as easily.

IF they are needed.  Logic i think would work, If you can see properly you can learn to drive (you need corrected vision to get a license, because the license people DO test you), It is better to see the tv, better to play the games you play.  Logic  and especially if its a biggish correction i think will win in the end. minor corrections i dont know about.  None of my 3 autys has any eyesight problem that needs glasses, if anything they are sensitve to sunlight so that one was easy.

K

Sasha - posted on 01/29/2009

you have raised a very interesting bullet there that I did not have to face. When you a child with AS how do you tackle glasses?

Kerry - posted on 01/29/2009

Hi Daisy, yep thats a hard one alright.  I remember doing the legwork for this situation too. I knew that my son would not deal with school and at preschool age we put him on ritalin to slow down his activity long enough to cope with school(diagnosis was adhd). I remember how proud and impressed i was when he came home with a painting that was a recognisable form and not just 3 or 4 lines of paint on a page. He happily told me it was a spider. And you could definatly see a spider, I still have that painting over 15 years later.

Ritalin helped keep him in the seat for the school day and he could be reasoned with.  Then at about 8 or 9 his teacher told me she thought he has aspergers syndrome as she had a son who had AS and had learned about it the hard way. She said the pointers were theere, he could completely shut out the world if he wanted to, he would not look at people when talking and would not let anyone touch him.  After school testing and paed visits they told me he had classic autism high functioning and adhd and learning difficultys.

We managed to keep him basically on track and not do too much damage to other kids, by giving him ritalin only in school hours. We worked it so his dosages would be definatly worn off by 3 to 4 pm and i did not force the homework issue at all.  As part of his early testing before the AS diagnosis came up, we had his hearing and eyesight fully tested. he would not sit still for the eyesight tests and so i told the opthalmologist that he was hyperactive and i would give him his pill and we could try again.  the Opthalmologist said that yes he needed to sit still as the tests were showint that his eyesight was very very bad and not transmitting images.

After the ritalin started work we tested again, everything was perfect! the specialist looked at me and he said he had heard the medication could do that but had never seen it in action.  The brain and the eyes were now functioning together.  he said that if he wasnt taking the ritalin he would be having trouble seeing and evaluating, so i said i will not give him the medication out of school hours, the specialist then told me that in that case not to bother with homework as there would always be a fight because of the eyesight issue.

So Ritalin was very helpful to get him through the early years of school and when the ritalin was at the right levels and dosages, his autism emerged clearly.  the hyperactivity was hiding the autism.  (I then could try to work with autism, and i would consider this the biggest thing to hurdle).  Early intervention would have helped but by the time we found the autism and realized that he wasnt jsut a naughty little horror, he was a little too old to be helped by things.  The OT could nto get him to cooperate or participate in any sensory integration (he would sit in the corner or hide and refuse).

My oldest son took ritalin for nearly 10 years with no harmful side effects at his strict routine of only for school hours. (remember this is the old breed of ritalin) At aroudn 15 he refused to take it because it made him a "retard" he would sit and stare into space for the first half an hour of the ritalin taking effect (that autism thing) and the other kids at school would tease and call him names.  After he refused the medication he was more naughty on purpose i think, but he felt better about not having the medication, and i felt better about not having such a dangerous drug (dangerous for those who dont require it>>its basically medical grade speed

Becki - posted on 01/28/2009

Hi, my son has been on an ADHD med for a year and it was not my first choice either. However, we did not start meds until he was 7. I've heard it is best to wait until they are at least 6 years old to start. Our reason for meds has to do with controlling behavior -- impulse control. I agree with several of the earlier posts here. It seems that your child would benefit greatly from some OT. And if you have not had your child evaluated for Sensory Integration Disorder, you probably should. There are times still when my son will come to me and actually tell me that he needs to be "squeezed". When he was 2, our OT told me that one day, he would tell me on his own when he needed sensory input. It was actually really funny (in a cute way) the first time. He came up to me and said, "uh mom, I need a squeeze". He was 6 years old. Prior to this age, we could tell when he needed to do "heavy work" because he would be bouncing off the walls. But, once we would give him some heavy work, or squeeze him (meaning, doing compression work with his arms and legs, etc); we noticed how much more centered he was. It is really stunning to see. So, I highly recommend getting him to see an OT -- someone who specializes in Autism and Sensory Disorders.

Tracey - posted on 01/28/2009

It's difficult to make a decision about your child so young and being placed on meds. Our daughter was diagnosed at 2 1/2 with PDDNOS ...severe anxiety, severe sensory issues (especially tactile, oral, and spacial awareness) We put her on prozac and it's worked very well. The biggest support we could have given her was the GFCF diet, coromega fish oil and now zeolite ( a natural mineral that acts as a chelation therapy) She used to get sick all the time and the zeolite is known for boosting the immune system and it's worked wonders. The holistic approach has been the best other than the prozac. We took her off the prozac but had to put her back on with her anxiety issues at school. I'm hoping to try the holistic approach this summer for attacking the anxiety. We tried the add meds and she was a zombie..she walked like she was in a slow motion film..so I'm not eager to try those again. Good luck...every child is different and you'll know what works best for your child.

Nia - posted on 01/28/2009

Hi, my son was diagnosed with a Severe Mood Disorder (onset of Bipolar) recently aged 9. He's violent outburst have devasted my family as he has been like this since birth. After pushing and trying to do the natural things he was admitted to a child's psychiatric ward after the worst ever episode. I thought Medication was not the best thing for my son, but I was wrong in a sense. He has now been on medication and the violence has almost gone, his tantrums have been less. He is now going back to full time school, even though he only eats white meat still, every other aspect of his life has changed dramatically. What I'm trying to say is think seriously about putting your child on medication, if it is the wrong one you will find no difference, but if it is the right one you will hopefully have a happier, not so aggressive child, and your family would not be living in a war zone any more. Best of luck

Sasha - posted on 01/26/2009

just a footnote: my son is 16 now.

Sasha - posted on 01/26/2009

I took my son off all sugar, was religious about any form of stimulants and said no when my GP wanted to put him on drugs at 3. Did I do the right thing? no idea. He has twice during his teenage years had betablockers for short periods, when his behaviour got very dangerous to himself or somone else. Which ever way you go, there will no way to see what would have happened if you took the other path. The best advice I can give is to only ever use meds as a temporary thing, because if it becomes a mainstay you will not have them to fall back on. Having said that, I have no idea if my son doing as brilliantly as he is would have been improved if he had been on constant medication. Not that I can realy see any way for him to be better than he is. He only drives me nuts about 20 times a week now. Never thought it could be this good :)

Katie - posted on 01/25/2009

I put my daughter on Risperdal at her Neurologists recommendation and it has worked very well for her. Medicating is a tough decision to make so speak with as many people as you need to until you feel strong either one way or the other in your decision.

Carie - posted on 01/25/2009

You're not being an overprotective parent, you're just looking out for your child. Only you can make that decision and if you do decide to take the medication route, I would find a professional that specializes in autistic disorders, who is well versed in the medications that are often given to individuals with autism. I waited for my daughter to become a bit older before trying meds. I was also a bit frightened because she wasn't able to tell us how the meds were affecting her, but being a parent of a child with autism, I'm usually on 'hyper-alert' anyway. Luckily, we didn't have any problems and the first medication that we tried, worked.

Lauren - posted on 01/25/2009

I struggle with the medication question also. My daughter appears hyperactive...what I wonder is : is she hyperactive in addition to having sensory issues, or is it all a manifestation of the sensory stuff? My daughter is hyposenstive in all areas, especially proprioceptive (feeling her own body in relation to other things) as well as vestibularly (feeling her body moving) so she seeks lots of movement- jumps on the couch, swinging in a swing or us holding her and spinning her around.



Has your son been evaluated for sensory integration disorder by anyone? I would go that route first, and if it seems that he has sensory issues, see if sensory OT helps him (it helped my daughter tremendously).



Again, I still wonder if she might benefit from an ADHD med but am hesitant to try it now since she would not be able to tell us how she feels as she has a severe speech delay.



Also, something to try first before meds is the gluten-free/casein-free diet (wheat and dairy free)...there is another thread on here about that diet.



Hope this helps some!



~Lauren

Diane - posted on 01/25/2009

Can definitely understand what you're going thru; had to make those same decisions for my daughter at about that age. I have to say that all kids are different and he many need meds but I honestly regret starting my daughter on them that young. Many kids have strange reactions to meds and become much more intense. Have you done any dietary intervention? Keep a food diary and see if certain foods set him off. Also, look into OT for sensory integration. Many kids like this have extreme sensory issues and a tag in a shirt or a wrinkled sock can make them nuts. That had a lot to do with my daughter's issues. Remember that there are no real meds for autism; they're "treating" behavior and there are other ways of doing that. Also...trust your gut feeling. You're being a good parent to not rush into this.

Diane