why,why why..advice? | Autism PDD

I feel terrible for you.

I agree with Horizon the meds he is on, are not working.  He needs either the dose adjusted or on different meds all together.

My girlfriend has a son who is very aggressive and has impulsive behaviors his medication had to be adjusted before there was one that she was comfortable with that works for him. 
There is always hope.
They changed Skylar's meds to Concerta 36mg in the am, Risperdal .75mg at 5pm and Clonodine .1mg at 6-6:30pm. I have seen a huge difference in the meltdowns (almost rare that he has them). He seems more like a normal 4 1/2 year old child than he has all year. Hang in there, don't give up. You WILL find what works and things will be ok.

I am so anxious about school starting this coming Monday (27th) and him starting PPCD (pre-k program for children with disabilities) for those of you who don't know what PPCD stands for. lol And Zoe (7) is going into the second grade on the same day. DH has to work and can't take off, so it's all up to me to pull through it and then come home and cry myself completely senseless. LOL
Guess thats why my doc put me on Xanax!
MEGA hug

Sending you many hugs.  

WHAT IS GOING ON?????HIS BROTHER GOT INTO THE CAR AND DROVE HIM AROUNG THE BLOCK WHILE I HAD THE MORNING AIDE LEAVE....(SHE WOULD NOT HAVE BEEN ABLE TO HELP),,ANYWAY HE CAME BACK INTO THE HOUSE..AT LEAST...DROPPED AND HAD HEAD BANGING AND THROWING THINGS..WE USUALLY GO OUT AGAIN FOR A DRIVE AND THEN LUNCH..I TOLD HIM HE LOST THAT TODAY AS HE HURT MOM IN THE CAR...

I AM BARELY HANGING ON..TWO MELT DOWNS IS ALL I CAN WATCH NOW A DAYS..HIS CRIES FROM THE EXPERIENCE OF THE GROUP HOME ARE PIERCING...THEY BREAK MY HEART..I DO NOT SEEM TO BE ABLE TO HELP HIM NO MATTER WHAT I DO...

MY QUESTION IS...IS THERE A CALMING MED OUT THERE THAT IS NATURAL AND NOT A HEAVY DUTY DRUG?  HE IS FINALLY ON SOME LOW DOSES OF THOSE MEDS THAT THE GROUP HOME PUT HIM ON..BUT I AM AT A LOST..WHAT AM I MISSING? ALL OF THIS STARTED WHEN PUBERTY HIT, THE SEIZURES STARTED, AND THE DRUGS CAME INTO HIS LIFE...ALOT OF CHANGES HAVE HAPPENED TO HIM THESE PAST THREE YEARS, HIS BEHAVIORS HAVE GOTTEN WORSE. AND , GOD FORGIVE ME...BUT I AM STARTING TO PRAY EVERYDAY THAT HIS LIFE BE OVER,,MAYBE HE WILL HAVE PEACE THEN...

SORRY FOR THIS VENT..I AM REALLY VERY TIRED.

Oh please don't think this way...there is always hope!

Could this be something to do with seizures?  My son has epilepsy and we see a lot of changes in his behavior when his seizures interfere...whether it's just increased EEG activity or seizures themselves.

Big hugs!

((((HUGS))))

 

 

I know that you want Justin to be at home, but this is dangerous for both of you. He may have to be hospitalized to get him stablized.  IF you are his legal guardian, the doctors will NOT be able to do anything to him or give anything to him that you do not approve.  I believe you must bring him to the ER when he's in this state. He needs help NOW.  Please don't deal with this alone.  You are in CRISIS.  He needs strong drugs and he needs them now.  Justin does not want to be this way. His own brain chemistry is torturing him. There ARE drugs that can help.  You need an expert TODAY.THANK YOU ALL FOR YOUR INPUT. i WILL BE WRITING THESE MEDS DOWN SO I CAN ASK THE DOCTOR..I SO NEED TO FIND THE RIGHT ONE AND I AM THINKING THAT THE NEUROLOGIST IS NOT THE RIGHT ONE FOR THIS. HE ENDED UP HAVING TWO BIG MELTDOWNS TODAY..I ENED UP LOCKED IN THE BATHROOM POURING MY HEART OUT FOR THIS TO END..FORGIVE ME FOR SAYING THAT..I LOVE JUSTIN MORE THAN ANYTHING, AND TO HEAR HIS CRIES ARE TRULLY HEART BREAKING. PLEASE KEEP THE IDEAS AND DIFFERENT COMBOS OF MEDS COMING I WANT TO BE PREPARED.

Karrie

Also i hope you don't mind me saying this but as much as possible (from someone who has been exactly where you are now) I had to be very emotionless when our ds got like this
If i cried and got upset he saw that what he was doing was getting a big reaction

I had to stay very calm
we also got him a blow up punching bag in the living room to pound on instead of our walls


Keep talking about it with us!
IT can get better i promise!
our son is finally getting the help he needs now and we are all safe and getting healthy (happy) again
I was very down and depressed but now i can see the boy he can be

HELLO ALL...JUSTIN HAS AN APPOINTMENT WITH THE NEURLOGIST TOMMORROW...I AM LOOKING NOW FOR A PSYCH. DOCTOR...TZOYA..I APPRECIATE YOUR ADVICE..BUT JUSTIN WILL NOT BE PUT IN A HOSPITAL..THAT WILL MAKE MATTERS FAR WORSE..I KNOW MY SON....I UNDERSTAND THE NEED FOR THE MEDS NOW , AS MUCH AS I HATE TO ADMIT IT, BUT HE WILL BE HOME WITH ME..YOU ARE WELL AWARE OF WHAT HE HAS BEEN THRU..I WILL NOT EVER TO THAT AGAIN....REALITY IS HE TRUSTS NO ONE AND NEITHER DO I....I COME HERE TO VENT, ASK FOR ADVICE AND FIND SUPPORT...I KNOW ALSO THAT HE WAS NOT LIKE THIS AT ALL UNTIL THE SEIZURES CAME AND THE MEDS STARTED..I KNOW I DO NOT LIKE WHAT I HEAR ALSWAYS BUT THAT IS LIFE....

I FIND LATELY THAT IS EASY FOR PEOPLE TO TELL ME TO PUT HIM BACK IN A GROUP HOME..OR PUT HIM IN THE HOSPITAL,,,BUT UNTIL YOU HAVE SEEN AND HEARD WHAT I HAVE IN REGARDS TO WHAT HAPPEN TO HIM, PLEASE UNDERSTAND WHY IT IS SO HARD FOR ME TO PUT HIM INTO THAT TYPE OF SITUATION AGAIN..

IF MY POSTS ARE FRUSTRATING YOU, OR "HERE WE GO AGAIN WITH HER"...I WILL STOP POSTING HERE, AND REALIZE THAT I AM MEANT TO GO THRU THIS ALONE..YES THIS IS DIFFICULT FOR JUSTIN...YES I DO NOT WANT TO SEE HIM GO THRU THIS...YES I AM DOING WHAT I CAN TO GET HIM TO THE RIGHT DOCTOR...YES I HAVE ACCEPTED THE FACT THAT HE NEEDS A DRUG TO HELP... SO ...I GUESS THIS IS MY LAST POST...AND I AM SORRY YOU GOT SO ADAMENT

(SPELLING?) ABOUT HOW DANGEROUS IT IS FOR HIM TO BE HOME WITH ME.

I don't have advice or experience on this...just wanted to let you know I was
thinking about you. (((HUGS)))

The answer will be in CAREFUL drug trials with him, using the care of a doctor who is an expert in medicating those with autism. Risperdal is the one drug that usually works the best in situations like this, but it doesn't work for every person under every circumstance.  It is going to take going regularly to a great doctor and keeping careful logs about how well your son does as the doses are adjusted. If he has seizures (it sounds like he had one in the car), this complicates matters. "Natural" does not mean benign.  Remember, cocaine is "natural."  Medications that are prescribed by doctors have drawbacks, too, but these drawbacks are known and can be monitored.  It seems to me from this long a distance that your son needs the help of the proper medications.  He may need a combination of meds. I know that the meds given to him at the group home did not work, but it's also obvious that getting off meds has not worked. Since you've got him back on Risperdal, I'd work with that med to see if it can be adjusted to work well for Justin, either by itself or in combination with other meds.  This has NOTHING to do with you.  You didn't create autism and you can't cure it.  All you can do is love him (which you clearly do) and stay as healthy as you can so you can continue to monitor the meds until the right combination is found. As someone who has BTDT, once the meds are right (if that turns out to be possible), life can become MUCH, MUCH better.  (((HUGS)))

vcuddy i soooo understand ALL of your feelings our ds is 13 and changed alot with puberty he is in a residential program now getting treatment but he is verbal and can tell how he feels about things most times

we had used PRN's in the past for his meltdowns (quick dissolve under tongue Zyprexa or Zydis  or chlorpromazine which is alot stronger)

the main thing he has had to learn is deep breathing relaxation to calm down and mom too

PM me any time okay i have been there!

mandyanthony: our 5 yr old has been in PPCD for 1 1/5 yrs (since she was almost 4) and is (age-wise) supposed to be in Kinder this year.

However, she's not ready for mainstream kinder, and a young 5 yr old (may 15) so we've decided to hold her back a year and give her time to mature and develop.

So they're enrolling her as a Kinder, got a call from the principal this morning, her regular aid from PPCD that she's known for a year and a half now will pick her up out front of the school (when I drop off the other 2) and walk her to her kinder class, stay with her for the pledge (which is to be her "social studies") and walk her back to PPCD.

She's going half days, just like in PPCD, BUT we're transitioning to the mornings...a good idea I believe. I'll go pick her up at 11.

Sometime during the school year, she's to start spending more time in regular pre-k as she is ready.

If you like your school and teachers (you know, that "mom's gut feeling") then PPCD will be wonderful for your baby. Just be involved, be there as much as you can, let them see that this is your baby and you call the shots.
oh crud, I'm so sorry, most of that should have been another topic. Please accept my apology!

I AM TRYING NOW TO GET THE APPOINTMENT WITH THE NEUROLOGIST FOR THE DRUGS...HE IS NOT ON RESPIRDAL..AS MUCH AS I WANTED HIM OFF THE DRUGS, I AM FINDING OUT HOW DIFFICULT IT IS....CAN THERE BE A COMBINATION OF DRUGS THAT WILL WORK BUT NOT MAKE HIM INTO A WALKING TALKING (NO TALKING) ZOMBIE????

I REMEMBER HIM WHEN THIS WAS NOT AN ISSUE...AM I WRONG TO WANT THAT BACK AGAIN? OR IS THIS THE WAY HIS LIFE IS GOING TO BE...ALSO THE DOCTORS I SEE OF LATE..IF THEY DON'T REFUSE TO SEE HIM, ARE NOT WHAT YOU WOULD CONSIDER AN EXPERT IN AUTISM..HOW DO I FIND ONE OF THOSE?

My son is seeing a psychiatrist. At first he was on FocalinXR 20mg daily, and he did walk around like a zombie, he wouldn't speak loudly, on a whisper. But last week his psychiatrist changed him from the FocalinXR 20mg to Concerta 36mg daily (he takes that at 6am) then upped his Risperdal from .50mg to .75 mg ( at 5pm everyday) and then the Clonodine .1mg at about 6-6:30 pm. He has been a completely different child. He seems almost perfectly "normal". It was the FocalinXR that made him like a walking zombie and I hated it. With the simple change in the adhd med, and slight increase of risperdal, he has changed into my sweet, loving, affectionate child. He speaks more clearly, uses more of his imagination. So many things have changed by just a simple change in meds. I didn't want him medicated from the start, but his was SO bad, that we were left with no other options. He was so bad, that I wouldn't even leave the house with him. Now I take him everywhere.

All I am saying is, Skylar was the worse that I had ever seen, and this mixture of meds has made him into a totally different child (much much better).

I don't know if any of this helps. But if you don't have a psychiatrist for him....GET ONE. Psychiatrist are very aware of these disorders (but make sure that they will treat a child). Ours is AWESOME, and I wish like hell that I could send him your way. Good luck. Hope that I can help more.

I would post a question here asking for an expert physician in autism in your area of California. I have found that in my area, psychiatrist are better than neurologists for this sort of thing. You might try contacting the local chapter of the Autism Society of America.

My son is on 6mg of Risperdal, 60 mg of Buspar and 3 mg of Tenex per day.  He's given these in 4 equal doses (with one dose without Tenex but with Singulair for allergies instead).  This is what works for my 6'2.5" nearly 300 lb. son.  He was a monster and has been a PUSSYCAT since we got the meds right. It took almost a year of VERY carefully working with the doctor. The doses were adjusted about once a month until we got to the point where our son was back to his old self.  He has tics, which are also controlled by these med combo, but no seizures. I post the exact dose not because it might work for Justin, but to show you that medicating can be a complex mix of drugs that only an expert can figure out. And it takes time and patience and lots of feedback.  Risperdal is KNOWN to work in the majority of cases where someone with autism shows aggression.  It works so well for most, that it is the ONLY medication officially approved for use with autism, so it might well be worth trying. My son is not at all a zombie. Not at all.  Just himself. He will sometimes ASK for his meds if I forget.  So they must make him feel better.  Our doctor is a well-known autism expert and is an ARTIST when it comes to medicating, not just a scientist. He is very conservative in his dosing, but he KNOWS that sometimes higher doses are the only way to go in order for the medication to actually do its job.

Please seek out a doctor who really knows what he's doing. That makes ALL the difference.

I have a question Tzoya...how do you know when you have found the right dr...the reason I am asking is because we have been working on finding the right meds for Mason since Jan...the dr we see seems very educated, talks a lot about her reasoning for specific drugs, etc...but we haven't really found the right ones yet...do I need to give it more time or do I need to move on and look for another dr.

Thanks for any advice.

It was easy in my area because our psychiatrist is famous.  You can network in local autism groups and find out. Once you're traveling in the same circles that other parents in the same boat are, you can easily network.  Of course, you can post here and ask the question. Dr. John Pomeroy of the Cody Center is the doctor sought out on Eastern Long Island.   

V -- I've been out of state for a few days and just read your reply to my last post.  PLEASE understand that I totally do not want to tell you what to do. My posts are based on the best advice I know how to give, based on my own experience. They are meant ONLY to be my opinion.  I worry about BOTH of you.  I KNOW your son would never, ever want to hurt you, but he could.  Also, when very strong meds are considered, it's sometimes imperative to take individuals on and off the meds in a safe, hospital environment.  This is done when non-ASD people are on strong meds, too.  It's the only safe way under some circumstances. 

I hope you can find a good doc.  I would DEFINITELY ask about Risperdal. My guess is that, given the size of your son, he will need a high dose, which means a doctor who is TOTALLY familiar with Risperdal and its effects on ASD individuals is the one to use.  I wish I could give you a good recommendation for a doc in your area, but getting in touch with the Autism Society of America chapter nearest where you live is a good start.

We on this board are concerned about both you and your son.  If he hurts you, you may not be able to BE there for him anymore.  Also, he COULD be legally charged and put in jail. Don't discount that. I certainly worry about  that with my own son.  If he hurt me (which he easily could, given his size), he could be charged with assault, even if I didn't choose to press charges.  That is why I'm so happy Risperdal keeps him from being violent.  An act on my son's part that would never hurt someone if he were small and weak could REALLY hurt someone given that he's so big and strong. 

I totally empathize with your position and fear for BOTH of you since your son is not yet on the appropriate medication. You are an EXCELLENT mother, but you are faced with one of life's most difficult challenges. You really, really need a physician to help with this.  Please let us know if you find one. My thoughts and prayers are with both of you.

Quick question, has anyone here had a bad experience in the doctor's office???Today has been a bad day, and I am concern about the visit tomorrow..how did you handle it?

many times vcuddy yes
I talked about it with Dh and next time we went in together and told the doc we need to see someone else
  You are such an encouragement to me and others on this board as well. Your determination and strenght always amaze me, and you can clearly see the love you have for your son. I dont know how you do it, but Justin is so blessed to have a mama like you! You put the fire under those doctors butts like you always do and I bet in a few months we hear Justin is doing much better!

VCuddy....hugs and prayers are all I can offer you tonight.  I have never been in your siutation. However, I know from reading your posts that you are strong and will get through this.  I hope all will go well tomorrow and please let us know what happens.  I think of Justin often and include him in my prayers.  I really hope things will get better for you. 

Know that many here admire you for being the mother you are....in a sometimes very trying situation.

I hadn't realised you've had bad experiences with homes, I've had quite a long break from the board and was jumping back in the deep end. I'm sorry to hear you've had bad experiences with that and the meds too. You clearly have a lot going on and it's a tough road.

The way I see it is this; when some-one is depressed you try to change their lifestyle or way of thinking and if that doesn't help you find a med that will make them feel better. When someone's moods are unpredicable or they are aggressive, then they are not as ease with themselves and we have to find a way to make them feel better too. It should be something that makes him calmer but certainly not a zombie or change his personality. But to bring balance to his moods. You have to work this out with a proffesional, I believe finding the right meds for a person is quite a work of art because we are all unique and respond uniquely to meds. So it's something you'll poss have to work at with your doc. I'm really glad to hear you have an appointment and I hope you can make some regular appointments with this doc until you have found a solution that works for you. 

 Remember those hormones will calm down eventualy, you are just trying to ride this storm through as best you can, it's not always going to be so difficult. I wish you the very best of luck with your appt tomorrow and I look foreward to your post to let us know how it went.

Thinking of you , many (((hugs)))

 

I am so sorry if my post about the wafer meds upset you or added to anything.  I in no way meant for it to cause you to want to leave.  I thought I was being helpful.  I certainly understand why you wouldn't want to take him to a hosp...especially after what you all have been though.  I realize the majority of your post was geared toward someone else but it made me think that maybe I added to the frustration by what I posted.  Please don't leave.  You have so much to offer others and you are a well loved member of this board.

Karrie

yes please dont leave Victoria VCuddy - don't leave. You are going thru some things that I went thru last year. If you want to pm me - please do.  vcuddy just jumping on to wish you luck at the doctors
i hope they can be helpful!
remember we are here for you
never forget it
WE do care!!!!

Please don't leave the forum.  I always read the things you post.  You have a lot to contribute.  I haven't dealt with aggression or puberty (yet) so I don't have any experience to share with you.  However, you might be interested in this article about choosing aggression medication based on its underlying source, which can vary from impulsivity, hyperarousal, anxiety, mood instability, etc.

Here's the link:

http://www.fragilex.org/html/medical1.htm

When you say bad experience at the doctor, are you referring to your son's reaction or dissatisfaction with the doctor?

If it's your son's reaction, this article might help -- very helpful background and advice from the National Autistic Society in the UK. 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1064&a=1144 0

Let us know how everything goes.  I'll be thinking of you.  Hang in there.

I hope things went ok today?!

When you figured a way to get your boy a bit settled it's time to find a way to get you feeling better too, you deserve that, your his mom after all!

Let us know how things are going (((hugs)))

Yeah, I hope you didn't leave - no one wanted anything other than to be helpful.  Let us know how it went :)I hope everything went OK.  Don't stop posting here.  Let us know what's going on.Hey Vcuddy.  How did things go today?  I hope things get better for you soon.  I know how it feels to be bombarded with doc appt after appt as my son has other health issues in addition to the autism.  You are doing an amazing job by just hanging in there.  California is a huge state.  Have you tried an autism advocate in your area or region?  Even if they are not in the same town as you, someone can help you through this.  I found one through my local Easter Seals chapter.  It would also help to at least talk to other parents in your area that have children with autism as well.  Maybe an advocate or your local autism chapter can help in setting that up.  Sometimes venting or talking via telephone or face to face works wonders.  (((HUGS)))
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