Calling doctor on MOnday..sorry long cry

[Guest guest]

I know that the weather channel says the days are getting shorter, but this was the longest day of the summer for us! is on a lot of meds..Depakote, Lamitcal, Topamax, Prozac, Respardol, Serquol, & Strattera. He started the Topamax last Novemebr. SInce that time he is not eatting well, no let me rephrase that meal time used to be a dinner party.. words...now I say it is HELL! He does not want to eat. He has gone from 140 down to 121 since January. Not that he did not have some weight to loss, because he did. His PCP has him on 2/3 Whey Protein and 1/3 Carnation Brkfast mix 3 times a day because he is not wanting to eat. Also since starting Topamax his eyes roll up and vibrate back & forth. The Neruogolist is weaning him off the Topamax in the hopes that these issues resolve themselves. He also appears to be having trouble focusing and will close his right eye

and look sideways if you ask him to look at something. IN the meantime blood test have been drawn to make sure there isn't something else going on. But than again before starting Respardol he had a hard time eatting and ensure was on his IEP. Respardol seemed to have turned off that part if his brain that says he is full and he was hunger all the time when he was on it 4 times a day. His hand tremors have gotten worst. This the doctors beleave is from the depakote (he is on 1000 mg daily). We have noticed the past 5 weeks that he says his hands and knees are shakey, normally he never says anything about. But today he has said it at least 20 times. The doctor feels that the reaction between the lamitcal and respardol is causeing the body termors. But today it really has driven him and`us up a wall. SO it must really be bad for

him. But we can't reduce to many meds at the same time. Respardol has been his world saving med. It has made his world okay. Sensory issues are better with it, He started eating, he was FAR less frustrated, was more social. Now that we have taken away 1 1/2 doses he is whiney, angry at a drop of a hair, he want to hide in the basement and has put the same puzzle together at least 15 times today. He is getting stuck in topics again and can not move on. The only good thing about taking the 3 PM dose of Respardol away is he is not wanting to sleep his day away. He was wanting to go to bed by 4 at the lastest and when we would try to get him up for dinner at 6 he would become upset because he wanted to sleep. This sleeping thing also started when he started Topamax. The problem is that Topamax has been the only thing that has

stopped the grand mals. He has only had 1 small one since Novemeber on it. This beats the 2-3 bad ones he had a month before. The way I see it if he is feeling himself shake so mad that he is having trouble moving past it than something needs to be done. I know that they have to wean him off the meds, they can not just stop them. But we have done tons of drug trials in that past 13 years and have never had this kind of problems. We weaned him off the Serquol for about 3 weeks this summer and it to was a night mare. He would go to bed okay and go to sleep after about 90 minutes, but he would be back up in 3 hours and be up and down all night. So the doctor put him back on it. Gosh guys when does this every get easier? I have 10 binders of medical test, lab

reports, surgicall reports, hospital ER and admission reports. I used to think that someday we would have it right and things would be easier. But it seems as soon as we start hoping that we have it right something else happens and the world crashes around us. I feel bad for Bob also. though he is not happy that he was placed on disabiliy, he figured this would give him the chance to be more active in life full time. He had worked so many hours in the past so I could stay at home with . But with reduction of respardol , like I said, is very angry with no warning. Today he got mad at me because I told him it was time to put his clothes away. response to this was to stomp down the hall and slam his door and dump all his videos on the floor. Bob went in his room and tried to get him to calm down. But wanted nothing to do with him and even raised his fist at Bob. He has not done

this in 10 years. Bob says he understands just can't find the right words to express himself. But it still makes him feel like a bad Dad. All he wanted to do is help understand he could go back to his puzzle after his clothes was put away. I am sorry I am not even sure what I have typed is making sense to anyone but me. Maybe I should just try to get some sleep. Tomorrow..weather permitting..we are taking fishing on the boat. He loves being on the boat and fishing. But I am nervous that it will be a repeat on today but on a 19 foot boot with nowhere for me to walk away. But earned the trip and we can't take it away. Night allBecky Mother to , 15, Autism, Epilepsy, Cerebal Palsy, MR Everybody has barriers and obstacles. If you look at them as containing fences that don't allow you to advance, then you're going to be a failure. If you look at them as hurdles that strengthen you each time you go over one, then you're going to be a success. Carson Surgeon

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

Oh Becky,

My heart goes out to you. You do not need to be dealing with all

of this ... you are such good parents! I have worked with children

and adults more than half of my life, and I have seen first hand

what all of those meds can do. Psychtropic medications are the only

thing that most Neurologists know. I understand that they have

helped a good number of people and they certainly have their place.

But so often, I have seen the results of these drugs accumulating in

people's systems and after awhile, they wreak far more havock than

the person can humaly deal with. I know, I am not a Doctor. But over

the years, I have seen children and adults go into a Neurologist's

or a Pshychiatrist's office with yet more meds piled on top of the

others.

15 years ago, when I worked with adults in the Sheltered

Workshop, A Neurologist decided to put a young, severely autistic

man on a " drug holiday " without hospitalizing him. He was in my

group and they did not tell me what to watch for. Well, let me tell

you, this poor guy was so frustrated, angry and messed up, that he

almost killed me. I'm not exagerating. Out of the blue, he flipped a

heavy work table over and just came after me. The look in his eyes

was absolutely pathetic. He was on fire, but I could just see how

much he hurt inside. We got him calmed down after an episode of self

abuse and I just rubbed his back. He looked like a frightened child,

and he was a grown 25 year old man. Once they " cleaned him up " , they

started all over again, adding one drug back at a time. I'm at the

school now and I am seeing this happen with some of our little ones.

Honestly, I am not knocking meds. They really are very helpful in

many cases. I have seen that first hand, also. But I have seen the

flip side and it isn't pretty.

Have you ever considered consulting with a DAN! Dr? I know that

Dr. DeMio has had a lot of success with older children and adults.

In a recent conversation, he told me about a severely autistic man

in his 50's who after years of being on meds, is responding very

nicely to biomedical treatment. He is able to tell his caregivers

and Dr. DeMio how much better he feels now. He is improving and he

is a much happier person because of it.

The reason we discussed this is because I told him about a

bright, but severely autistic girl who was also bi-polar. I worked

with as her one on one for 3 years, until she graduated. At the

time, she was 19. She had disabled 4 people, one of whom could not

have children after her back was so badly injured, one had neck

surgery after after being grabbed by the hair and pulled down, one

staff sustained an ankle injury and another had been pushed and had

broken her leg. This girl was on so many meds that not only was she

injuring other staff and consumers, but her self injuries resulted

in her having to wear a helmet at all times.

I spoke to her mother, recently, and she asked me how my grandson

was doing. I told her about the biomedical treatment and how Noah is

actually recovering from his dx. She looked at me through tears and

told me that when her dd was 11, they had sent her out of state for

an alternative treatment. Her dd had begun attacking her and other

people, and they knew that they could no longer keep her at home, so

they tried this first. She remebers that the treatment involved

supplements, etc. While she was there, an opening came up at the

Residence and they had no choice but to take it.

This was a long time ago (she's 35 now) and when she entered the

Residential program, she was told in no uncertain terms that what

they were doing was quackery and they would not be doing it there. I

asked the mom if they had seen any improvements while her dd was

being treated, and she said, absolutely. Out of curiosity,I asked

her if she remembered the Dr's name who was treating her. She said,

she did...it was Dr. Bernard Rimland!!!! Oh, how different things

could have been...

Dr.DeMio said that if her parents were interested, he would be

willing to see this girl at the Residence where she still lives.

That was a few weeks ago. I haven't contacted the parents yet, but I

intend to do so. He's just such a kind man.

If you want to check out the website, it's " www.drdemio.com " .

Whatever you decide to do, remember that you are not alone. We

have all come to know and love , just through your posts. He is

a remarkable young man! Good luck to you, and God Bless!

-Trish

--- In , becky griggs <sleeplessohio@...>

wrote:

>

> I know that the weather channel says the days are getting shorter,

but this was the longest day of the summer for us!

>

> is on a lot of meds..Depakote, Lamitcal, Topamax, Prozac,

Respardol, Serquol, & Strattera. He started the Topamax last

Novemebr. SInce that time he is not eatting well, no let me rephrase

that meal time used to be a dinner party.. words...now I say it

is HELL! He does not want to eat. He has gone from 140 down to 121

since January. Not that he did not have some weight to loss, because

he did. His PCP has him on 2/3 Whey Protein and 1/3 Carnation

Brkfast mix 3 times a day because he is not wanting to eat. Also

since starting Topamax his eyes roll up and vibrate back & forth.

The Neruogolist is weaning him off the Topamax in the hopes that

these issues resolve themselves. He also appears to be having

trouble focusing and will close his right eye and look sideways if

you ask him to look at something.

>

> IN the meantime blood test have been drawn to make sure there

isn't something else going on. But than again before starting

Respardol he had a hard time eatting and ensure was on his IEP.

Respardol seemed to have turned off that part if his brain that says

he is full and he was hunger all the time when he was on it 4 times

a day.

>

> His hand tremors have gotten worst. This the doctors beleave is

from the depakote (he is on 1000 mg daily). We have noticed the past

5 weeks that he says his hands and knees are shakey, normally he

never says anything about. But today he has said it at least 20

times. The doctor feels that the reaction between the lamitcal and

respardol is causeing the body termors. But today it really has

driven him and`us up a wall. SO it must really be bad for him. But

we can't reduce to many meds at the same time.

>

> Respardol has been his world saving med. It has made his world

okay. Sensory issues are better with it, He started eating, he was

FAR less frustrated, was more social. Now that we have taken away 1

1/2 doses he is whiney, angry at a drop of a hair, he want to hide

in the basement and has put the same puzzle together at least 15

times today. He is getting stuck in topics again and can not move

on.

>

> The only good thing about taking the 3 PM dose of Respardol away

is he is not wanting to sleep his day away. He was wanting to go to

bed by 4 at the lastest and when we would try to get him up for

dinner at 6 he would become upset because he wanted to sleep. This

sleeping thing also started when he started Topamax. The problem is

that Topamax has been the only thing that has stopped the grand

mals. He has only had 1 small one since Novemeber on it. This beats

the 2-3 bad ones he had a month before.

>

> The way I see it if he is feeling himself shake so mad that he

is having trouble moving past it than something needs to be done. I

know that they have to wean him off the meds, they can not just stop

them. But we have done tons of drug trials in that past 13 years and

have never had this kind of problems.

>

> We weaned him off the Serquol for about 3 weeks this summer and

it to was a night mare. He would go to bed okay and go to sleep

after about 90 minutes, but he would be back up in 3 hours and be up

and down all night. So the doctor put him back on it.

>

> Gosh guys when does this every get easier? I have 10 binders of

medical test, lab reports, surgicall reports, hospital ER and

admission reports. I used to think that someday we would have it

right and things would be easier. But it seems as soon as we start

hoping that we have it right something else happens and the world

crashes around us.

>

> I feel bad for Bob also. though he is not happy that he was

placed on disabiliy, he figured this would give him the chance to be

more active in life full time. He had worked so many hours in

the past so I could stay at home with . But with reduction of

respardol , like I said, is very angry with no warning. Today

he got mad at me because I told him it was time to put his clothes

away. response to this was to stomp down the hall and slam his

door and dump all his videos on the floor. Bob went in his room and

tried to get him to calm down. But wanted nothing to do with

him and even raised his fist at Bob. He has not done this in 10

years. Bob says he understands just can't find the right words

to express himself. But it still makes him feel like a bad Dad. All

he wanted to do is help understand he could go back to his

puzzle after his clothes was put away.

>

> I am sorry I am not even sure what I have typed is making sense

to anyone but me. Maybe I should just try to get some sleep.

Tomorrow..weather permitting..we are taking fishing on the

boat. He loves being on the boat and fishing. But I am nervous that

it will be a repeat on today but on a 19 foot boot with nowhere for

me to walk away. But earned the trip and we can't take it away.

>

> Night all

>

>

> Becky

> Mother to , 15, Autism, Epilepsy, Cerebal Palsy, MR

>

> Everybody has barriers and obstacles. If you look at them as

containing fences that don't allow you to advance, then you're going

to be a failure. If you look at them as hurdles that strengthen you

each time you go over one, then you're going to be a success.

> Carson

> Surgeon

>

>

> ---------------------------------

> Stay in the know. Pulse on the new .com. Check it out.

>

[Guest guest]

WOW Becky!!!!!!!!!!!!!!!!!!! He is taking way to many meds!!!!!! Why would the Dr. give him resperdal AND seraqual at the same time?? They are both in the same family. My JJ has problems with agression too BUt we have lowered the dose of resperdal he takes. We are giving him VitB-12 injections every other day and it has helped some With the agression. I have heard from some others that the kids have told them that when they take the resperdal it makes them feel mean for a while.............I think that happens with my JJ.

I don't know what to say except that he is on way to many meds and needs to be "slowly" weaned off of them. Lois

Calling doctor on MOnday..sorry long cry

I know that the weather channel says the days are getting shorter, but this was the longest day of the summer for us!

is on a lot of meds..Depakote, Lamitcal, Topamax, Prozac, Respardol, Serquol, & Strattera. He started the Topamax last Novemebr. SInce that time he is not eatting well, no let me rephrase that meal time used to be a dinner party.. words...now I say it is HELL! He does not want to eat. He has gone from 140 down to 121 since January. Not that he did not have some weight to loss, because he did. His PCP has him on 2/3 Whey Protein and 1/3 Carnation Brkfast mix 3 times a day because he is not wanting to eat. Also since starting Topamax his eyes roll up and vibrate back & forth. The Neruogolist is weaning him off the Topamax in the hopes that these issues resolve themselves. He also appears to be having trouble focusing and will clo se his right eye and look sideways if you ask him to look at something.

IN the meantime blood test have been drawn to make sure there isn't something else going on. But than again before starting Respardol he had a hard time eatting and ensure was on his IEP. Respardol seemed to have turned off that part if his brain that says he is full and he was hunger all the time when he was on it 4 times a day.

His hand tremors have gotten worst. This the doctors beleave is from the depakote (he is on 1000 mg daily). We have noticed the past 5 weeks that he says his hands and knees are shakey, normally he never says anything about. But today he has said it at least 20 times. The doctor feels that the reaction between the lamitcal and respardol is causeing the body termors. But today it really has driven him and`us up a wall. SO it must really be bad for him. But we can't reduce to many meds at the same time

[Guest guest]

Becky - I second what wrote - we are here for you. I think you and your family are wonderful and I am amazed at how much you all have to face every single day. In an off-hand way, the challenges you face give courage and strength to people like me who read this list. I don't know if you realize the power of one of your emails and how it can give strength to a someone like me but it is amazing. I know you feel you were "venting" but what I got out of your email was a selfless, strong person, married to a wonderful, caring man, with both of you raising a very special, and courageous boy. It helps me put my problems in the right perspective. You are the type of people I look up to and admire. So "vent" all you want. There are several people on this group who I think are amazing and you are one of them.

Just my two cents,

another Becky

----- Original Message -----

From: Biehl

Sent: 8/28/2006 1:22:04 PM

Subject: Re: [ ] Calling doctor on MOnday..sorry long cry

Becky,

Anytime you need to vent let me know. I will always listen. We parents need to do that from time to time. I know how that goes. I wish I had more information for you. But for now I am here to listen if you need someone to talk to.

becky griggs <sleeplessohio > wrote:

I know that the weather channel says the days are getting shorter, but this was the longest day of the summer for us!

is on a lot of meds..Depakote, Lamitcal, Topamax, Prozac, Respardol, Serquol, & Strattera. He started the Topamax last Novemebr. SInce that time he is not eatting well, no let me rephrase that meal time used to be a dinner party.. words...now I say it is HELL! He does not want to eat. He has gone from 140 down to 121 since January. Not that he did not have some weight to loss, because he did. His PCP has him on 2/3 Whey Protein and 1/3 Carnation Brkfast mix 3 times a day because he is not wanting to eat. Also since starting Topamax his eyes roll up and vibrate back & forth. The Neruogolist is weaning him off the Topamax in the hopes that these issues resolve themselves. He also appears to be having trouble focusing and will close his right eye and look sideways if you ask him to look at something.

IN the meantime blood test have been drawn to make sure there isn't something else going on. But than again before starting Respardol he had a hard time eatting and ensure was on his IEP. Respardol seemed to have turned off that part if his brain that says he is full and he was hunger all the time when he was on it 4 times a day.

His hand tremors have gotten worst. This the doctors beleave is from the depakote (he is on 1000 mg daily). We have noticed the past 5 weeks that he says his hands and knees are shakey, normally he never says anything about. But today he has said it at least 20 times. The doctor feels that the reaction between the lamitcal and respardol is causeing the body termors. But today it really has driven him and`us up a wall. SO it must really be bad for him. But we can't reduce to many meds at the same time