AUTISM, ADD ADHD Medications & WDW

[BringBackTapestries]

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[Forevryoung]

Congratulations! No rude/negative comments from me!

Just some agreement- I have bipolar/ocd/social anxiety disorder and when I was 16 I was in real bad shape. My parents took me to a psychiatrist who came "recommended". He put me on some meds (I think Ativan, Depakote and zyprexa). They made me feel worse. I was either sleeping (thanks to the zyprexa i can sleep 18+ hours on that stuff) or going to school or crying. So my parents would call my doctor and he would say "up the meds" so they would. A month into things my mom took me to London for my 16th birthday present. We were there for 5 days. I vaguely remember an hour here and an hour there. I mostly remember my breakdown in the tube (subway) and being so tired one night that we brought dinner back to the room (it was very early) and I slept. I attempted suicide because of the meds. I was addicted to the ativan (its a benzo), the depakote (mood stabilizer) made my hair fall out and made me gain weight even though i wasnt eating and i was sleeping on the zyprexa (antipsychotic). Thats not a great way to live- it wasnt a life. After I got out of the hospital, I was on two meds and with minor adjustments over the past four and a half years have been doing great. I would love to go off of them but its not a risk I am willing to take. Not when I can enjoy life!

 

[LisaBi]

Congrats to you! You have to do what works for you, and you know your child best - not the doctors. I'll never pretend to know what is like to walk in your shoes, but I do have one with Down Syndrome and one with ADHD, and lots of friends dealing with ASD, PDD, etc. Your son sounds a lot like my little one's (the one with Down's) best friend. I may just have to forward your post on to his mom. They are constantly trying new meds and things don't improve.

I know I can't take my DS with ADHD off his meds - but then again we are only dealing with one disrorder and one med. Easy to figure out what is doing what.

I think it is wonderful that your son is looking forward to this trip. My 14 year old refuses to go (the one with ADHD). So I just take the younger one alone and we have blast. The one-on-one time brings out the best in him.

Best wishes,
LisaB

 

[BringBackTapestries]

555555

 

[s&k'smom]

No flames from me. Very interesting reading your post thank you so much for sharing. It just goes to show me mums and dads are usually right when it comes to their kids and just need some guidance. Have a wonderful trip and thank you so much for your story.

 

[wide awake]

I'm a teacher and I HATE it when I hear other teachers or school psychologists suggest meds...neither have any training in brain chemistry. That said, my DS is ASD, 14 years, and we've been injecting methyl B-12 for almost two months...very good growth in language. All of a sudden he is using adjectives, DOs, etc...I've read of some miracle cures...like in a week with the vitamin, but that is with younger kids. This is the first time I've let myself really think about what it would be like w/o the autism.

 

[riu girl]

No flames from me. Thanks for sharing. I have to agree with others that YOU know your child best, some show great improvement from meds, some don't. I feel it is a very personal decision and would never flame others who chose to use medication/or not for their kids. DD8 was diagnosed with SID, severe ADHD and ASD tendencies all before age 4. She was also diagnosed as developmentally delayed at age 2 ( This diagnoses has since been removed). Since all of the diagnoses she has only been on meds for one month. She was a failure to thrive baby/young child and was put on a low dose antihistamine for one month'(to increase her appetite). Prior to this she was diagnosed with infantile aneroxia/bulimia. It was a terrible time for us, taking her to the hospital constantly for IV since she was always in a terrible state of dehydration from all the self induced vomiting/simply not eating/drinking. Those meds worked. In the month she was on them she worked through the sensory stuff (tied to eating) and started to eat normally. By age 8 she is 70+ pounds and VERY chubby and LOVES FOOD/TO EAT. When she was very young people thought she had cancer since she always looked so close to death. I was sure she would die. The doctor even sent a nurse tothe house once a week to monitor her. I could cry when I look at her now, she looks so good. She is an entirely different kid then back then.

Sorry , getting off topic. For the other issues, we have decided not to medicate her. We look at alternative stuff such as Yoga.
My opinion: Since your child has been quite medicated and is now meds free, I wonder if you might consider an alternative therapy, such as Yoga, relaxation tapes. The book we use is titled: The compete idiots guide to Yoga with kids. We pick a different page everyday and we have a lot of fun with it. My kids have no idea that is actual therapy for DD8, but just a fun thing to do.

Congratulations for listening to your heart and mind.
Suzy V.

 

[BringBackTapestries]

Well thanks for the posts. They are all swell. I'm closing my posts out so I can <snif snif> go to Disney World tomorrow. Im sure you all know I'd rather be here chatting... NOT! Anyways, it has been fun! Keep the thread going!!! Maybe it'll still be here when I get back! Good luck to all the posts. To the last post... about the relaxation... We have a den that looks like an authentic Indonesian Rainforest. Complete with camoflauge netting on the walls and ceiling, vines hanging all over, trees and bamboo and banana plants and tropical trees climbing up all the walls and even a bamboo floor and 9 foot tall Indonesian stautue! (I could best compare it to a mixture between the Jungle cruise and the Tarzan setting on the great movie ride. We got all the ideas from WDW last Feb (2004) and came home and built it. (It was just a carport in Feb.) We have 2 of the light color changing water fountains that play a variety of music or sounds. The loons and thunderstorm scares my son, but the harps seems to sooth him. I asked him once why he always cut them on, and he says it calms him down. No complaints from me. Children can sence emotions like frustration, fear, anger, and anxiety. My wife is now taking no-doze because something is wrong with her (probably extreme stress) and she *ironically* calms down (even though she gets hyper) when she has a nodoze or several cups of coffee. Weird huh? But trust me... SHE NEEDS THEM!!! Ive seen the difference it makes. From Hyde to Dr. Jekyll! Shhhh dont tell her I said that!

 

[SueM in MN]

Have fun. Hope you have a good trip.

I think two things this thread point out are:
1) No two people react exactly the same to the same medication/treatment. What may be perfect for one person, may be perfectly awful for someone else.

2) Every medication has the potential to have side effects. You have to decide whether the side effects (if any) outweigh the good effects.

 

[Poohnatic]

How wonderful that you found what works.

I think the most frustrating thing for a parent of a child 'on the spectrum' is how little anyone knows. As I equated it to a specialist, it's like we're placed in a maze blindfolded. We have a diagnosis, but that is no where near the end of the road.

I understand the meds thing. For a long time, anything the doctors tried on my son just exacerbated the issues. We had quite a few experiences of not noticing any significant change on a medication, but boy, you noticed when he missed a dose. We are using three right now, and they have improved things tremendously...but we are in for some changes. My son's grown 3 inches and about 10 pounds in the past year, so some adjustments are in order.

Hope the vacation is very enjoyable!

Suzanne

 

[spotdog]

Hang in there. Everyone needs a vacation now and then. Parents need a break sometimes, too.

As a person who lives with mental illness, I experienced the HUGE weight gain with Depakote, the sleepiness with Zyprexa and Risperdal and alot of embarrassing behavior (and it was my own). After years of "trying" different medication, many days in the hospital and being called a "useless welfare person" by a neurologist. I now live in my own apartment, drive a car, work for a living and take only the medications which help control my symptoms with minimum side effects. I have a good relationship with most of my family, now.

It was a long, terrifying road. Since doctors cannot just cut open a brain, find the problem and fix it, I guess sometimes we can be guinea pigs, until they know just what helps.

WDW is my favorite vacation, even though the crowds can "get to me" sometimes.

Don't be afraid to ask for help.

 

[Forevryoung]

Hang in there. Everyone needs a vacation now and then. Parents need a break sometimes, too.

As a person who lives with mental illness, I experienced the HUGE weight gain with Depakote, the sleepiness with Zyprexa and Risperdal and alot of embarrassing behavior (and it was my own). After years of "trying" different medication, many days in the hospital and being called a "useless welfare person" by a neurologist. I now live in my own apartment, drive a car, work for a living and take only the medications which help control my symptoms with minimum side effects. I have a good relationship with most of my family, now.

It was a long, terrifying road. Since doctors cannot just cut open a brain, find the problem and fix it, I guess sometimes we can be guinea pigs, until they know just what helps.

WDW is my favorite vacation, even though the crowds can "get to me" sometimes.

Don't be afraid to ask for help.

You sound very very very much like me. Been there done that with the Depakote and Zyprexa. I havent been to WDW since I was 10 so I know that things will be very different now that I am an adult. Anything that might help with crowds? Any tips in general??
Thanks

 

[riu girl]

Keep in mind that I am basing my opinion on only one WDW trip but my only advice would be to:
1. get to the parks early. At opening and a couple of hours after, the crowds are much lower then going later in the day.
2. Know the basics about the park already. We had maps previous to our holiday and were able to map out a basic touring plan prior to our vacation.

DH suffers from anxiety and he had no major problems. He said that the whole thing was a bit of a sensory overload, but doable. He also said the music was a bit much at Magic Kingdom. At one point he needed a break at magic Kingdon so we left him for about 30 minutes while he closed his eyes (in the kids rented WDW stroller if you can believe it). This gave him some time to relax.

Have a great vacation.

 

[TiggerCate]

Thanks for sharing your experience. It is good to hear the perspective of others and I think way too much medicine is shoved down our childrens' throats. We just started our DS10 on Risperdal. It is the first time he has really been on medication. A doc tried to put him on Ritalin once years ago, but after giving it to him twice, we decided it was not a good idea. So far, the Risperdal is helping. He is very skinnny as it is, so can stand to gain a pound or five. His appetite has gone up slightly, but not alarmingly so.

The good thing is that he hasn't said "I hate you" or attacked anyone since he's been on it. We had hit a really rough patch with him and nothing was working. I was very against medicating him for years and years and finally decided to go out on a limb and try it.

I think it's important that we don't rush to medicate and that we don't overmedicate, though.

 

[BringBackTapestries]

Hello.

 

[eeyoresmountainpals]

No flames here, either! Thanks for sharing. Hope you have a wonderful trip!

LisaBi ~ Your post caught my eye...I also have a child with Down Syndrome and one with ADHD. My son with ADHD is on Adderal XR and he's done wonderfully on it! He's a different child when he takes his medication!

 

[riu girl]

Glad your trip went alright. A thought for your next WDW holiday: Have you ever consdiered renting a WDW stroller or perhaps a wheelchair for your son. DD8 (then 7) at WDW had a rented double stroller and it worked out very well. She is easily distracted and I was so worried about her wandering off, or starting conversations with strangers. I had no idea the stroller would work out so well. It gave her space apart from people, or if she got tired, or just needed a break from all the stimuli. At the time of visit she was 7 and at least 70 pounds (and very tall). She shared the stroller with her 4 year old brohter (about 40 pounds) and they both fit no problem. We had no behaviour issues at the park and I think part of the reason is due to the stroller.
We will be going back when she is 9 and are considering a stroller then but the way she is growing (she does not stop eating, Thank goodness) I don't know if a stroller will be too small for her then.

 

[SueM in MN]

We will be going back when she is 9 and are considering a stroller then but the way she is growing (she does not stop eating, Thank goodness) I don't know if a stroller will be too small for her then.

CMs have posted that the strollers have sizes large enough to fit a small 12 year old. Another thing many people do is rent a double stroller for one child to sit in.