Judy

July 13, 2006

Judy,

We have been trying to get my son on the " right " medication and dosage for

over six years. We moved and met this new psychiatrist who told us that

treating OCD patients was worse then trying to treat schizophrenia patients. He

said

,of course it is worse to have schizophrenia , but those patients respond to

medication and therapy. OCD patients sometimes don't respond and if they

do,many times it takes years to get them there. We have found this to be true

with our son. We still don't have the " right " medication for him and haven't

found any medication has helped with out major side affects. The medication

sometimes works for a while and then stops. He gains lots of weight on many of

them and then starts feeling depressed over that. OCD has killed his self

esteem. I have read page after page of parents saying the meds are making there

child worse. We have waited the early side affects of the medication out

like everyone has told us to do and they never go away or get worse. I called

someone who was the head person of the OCD clinic in California, and he said

that lots of people can't find relief in the medication. Personally, I keep

hoping some " miracle " drug comes out that will fix this problem. Sorry I seem so

pessimistic. Good luck with finding the right dosage and medication for your

child. I ,like you, keep trying. Maybe we will get there.

Sheree

July 13, 2006

Judy,

Is your son still doing better? We are sure pulling for you to get through

all of this!

jchabot <jchabot@...> wrote:

The book is really only for kids age 2-12, although you could use it

for a teen, boy or girl. I guess it really depends on how bad the behaviors are.

If totally out of control as my dd sometimes is, my " bible " is The Explosive

Child "

hugs

Judy

mom to Brittany-11-NT -going into 6th gr-high honor student

-Brittany's twin-3-29-95--4-7-95

-9-bp,ocd,adhd,odd,pdd-nos, 50 mg seroquel 75mg trazadone 75mg zoloft

going into reg 5th gr class-504plan

iel 4-ocd, speech problem-going into kindergarten-speech therapy, 2.5mg

prozac

August 29, 2006

Judy,

Is your son doing better on the Zoloft than the Prozac? I have been rooting

for him, poor little guy!

jchabot <jchabot@...> wrote:

Yes, don't give up!!!!

My daughter was soooo bad from the time she was 3, I thought I couldn't handle

another day. She had spent 2 years in and out of hospitals. Dozens of med

combinations and therapists.I should say, refusing therapy. Now she is a

different kid. I still do at times have extreme difficulty with her, but she has

come a very very long way. You would never know she were the same kid.

As frustrating as it is, they usually do better with a little maturity.

hugs

Judy

mom to Brittany-11-NT -going into 6th gr-high honor student

-Brittany's twin-3-29-95--4-7-95

-9-bp,ocd,multiple other anxiety disorders,odd,cyclical vomiting

syndrome, 75mg zoloft,.1mg clonidine,5mg abilify, going into reg 5th gr

class-504plan

iel 4-ocd,multiple anxiety disorders,

speech articulation problem-going into kindergarten-speech therapy, IEP , 12.5mg

zoloft

August 29, 2006

Hi ,

Thanks for asking!

Actually, I don't really know. His bad thoughts are not as frequent, although

he still will whisper them to me several times a day.They are usually of a

sexual nature. His behavior is still off the wall! I'm so nervous about

kindergarten tomorrow.I would die if he said any of these things in school!!!

I'm praying he won't , seeing he'll only be there for 3 hours a day. I would

have to say the zoloft affects him about the same as the prozac. I don't know

what to do about the meds.Something has to change. He takes so long to get to

sleep at night. It's a good thing he goes to school in the pm. Unfortunately, I

have to get up at 5 with my girls. Oh well

Take care and hugs

Judy

November 9, 2006

judy the school mentioned today the can do a pscyhoeducational test

but not neuropsych - did you get yours done elsewhere? - what is the

difference??

eileen

Quoting jchabot <jchabot@...>:

> Hi ,

> My daughter used to be on the benadryl for sleep also, but it was

> to the point she needed 4 tsps to sleep so we had to try other

> avenues. I hate having my kids on meds also, but the sleep

> deprivation alone is a major problem.

> I'm glad that it's working for your daughter because at least the

> benadryl is fairly safe.

>

> I did have my dd take occupational therapy, but unfortunately it

> didn't help her sensory issues. I have heard it does wonders for

> others though.

> Have you had a neuropsychological evaluation done on your dd? We

> found out sooo much from having that done. My daughter is very

> intelligent, but has a difficult time with the reading due to her

> ocd. She will count syllables in her head while reading , so than

> she doesn't comprehend what she's read.

>

> I wish you luck!

> Hugs

> Judy

>

December 28, 2006

was just thinking of that yesterday - hope she's doing better too

eileen

Quoting c ward <cward_ri@...>:

> Judy,

> I think you had posted before Christmas that your daughter was

> having some problems. Have things gotten a little better?

>

> jchabot <jchabot@...> wrote:

> My son (5)( ocd) is awful with pain. He can stub his toe

> and you'd think he was dying. On the other hand my daughter (10) ocd

> and bipolar is the opposite. She once broke her finger and we never

> knew it until a week later. She also had bacterial pneumunia, and

> the doctor said she wasn't acting sick enough to have it. Her lung

> almost collapsed it was so bad,and she had to be hospitalized for 5

> days. Maybe it's the bipolar that makes her that way.

> Hugs

> Judy.

>

December 28, 2006

was just thinking of that yesterday - hope she's doing better too

eileen

Quoting c ward <cward_ri@...>:

> Judy,

> I think you had posted before Christmas that your daughter was

> having some problems. Have things gotten a little better?

>

> jchabot <jchabot@...> wrote:

> My son (5)( ocd) is awful with pain. He can stub his toe

> and you'd think he was dying. On the other hand my daughter (10) ocd

> and bipolar is the opposite. She once broke her finger and we never

> knew it until a week later. She also had bacterial pneumunia, and

> the doctor said she wasn't acting sick enough to have it. Her lung

> almost collapsed it was so bad,and she had to be hospitalized for 5

> days. Maybe it's the bipolar that makes her that way.

> Hugs

> Judy.

>

December 28, 2006

Hi ,

Thanks for asking!

She has actually gotten worse! I really don't know what to do with her anymore.

This has been going on forever! We are going to yet another new psychiatrist on

Jan3. Not that this one will be any different, but I have to keep trying!

Hugs to you

Judy

February 8, 2007

Judy - all that is totally amazing -

First, if you have been following, my CLL was dramatically worsened by a tick bite which gave me babesiosis. The same tick that delivers lyme disease. I'm still struggling with it, and have been for 1-1/2 years......Tick bites can be very troubling, as we do not have the immunities to deal with them like normal people. Do you know what the tick bite gave him?

Second, he's certainly young enough to do well on a transplant......

Third, there are abut 10 points on which they consider whether an out of family donor is acceptable. I have heard that a good match should have at least 8 of these 10 as a good match. I do not know what these 10 parameters are, but they help in determining the validity of a donor.

Dana Farber is in Boston, tops for transplants, better than NYC.

Sounds like you're on the right track, much luck,

February 8, 2007

Hi ,

Yes, I do remember you writing about your trials and tribulations regarding your tick bite... nasty buggers aren't they. I don't recall what the name of the parasite was that Rob had, it settled in his intestines and he had the runs for over a month, they finally found the right antibiotic, doxycycline which he's been on for a few weeks and will continue on it for another month. Scary time. Babesiosis does not sound familiar, so that's not what Rob had, I'll find out what it was and let you know. It's amazing how the body reacts to things with a suppressed immune system, very very frightening.

When I speak with our transplant coordinator, I will ask bout the 10 point thing and find out about that and will let you know what I find out.

Problem with Dana Farber for us is he is out of network on insurance and therefore won't be covered because there are transplant programs that are in our network. We have to stick with what our insurance will cover. It's horrible that insurance companies dictate what we can and cannot do. Rob was eligible for a trial drug program, but the insurance wouldn't cover it and if we paid for it ourselves it would have been between $3,000-4,000 per month for 8 months, which would destroy us financially. We have four kids still at home, no way we could cover that expense and as it turns out, this trial probably wouldn't have worked for him with the type of CLL he has. So far, it's looking like the campath is doing it's thing and we're seeing some positive signs... and speaking of insurance, initially our insurance company gave approval for Rob to get the Campath while he was inpatient at the hospital , but not as an outpatient, so they had to keep him in the hospital for four extra days just to administer the campath, now, how nuts is that? He was ready for release but had to stay just to get the drug. I just shake my head in disbelief over and over. Each time he gets the campath it is $5,000 (three times a week) and the Rituxin is about the same cost (once a week). Just mind blowing how expensive this all is. As much as I complain about how the insurance companies dictate how we get treatment, without this, we'd be destroyed financially.

Anyway, thank you for the info and I will let you know what I find out from the transplant coordinator when we speak. If you or anyone else who has any knowledge about the bone marrow transplant procedure or protocol and can give me any pointers on what to ask or what to look into, I would greatly appreciate it. Thank you so very much, Judy

February 9, 2007

Dear Judy,

I'm not a regular contributor to this group because I don't really have CLL/SLL, but something similar (an unclassified NHL). Not many CLL patients seem to undergo bone marrow transplants, probably because the disease can usually be treated successfully by less drastic means. But since your Rob is heading for a transplant, I just wanted to let you know that I've been reading the articles about transplant on the CLL Topics site, and I find them excellent. There's one about HLA matching, and one about the actual transplant procedure. Obviously, the protocols vary from one centre to another and from one patient to another. I can describe the protocol I went through at the Ottawa General hospital in Ottawa, Canada, if you would like to know the details. I actually had what is called a tandem transplant: first an autologous transplant last April, using my own stem cells collected from my blood, and then a reduced intensity allogeneic transplant, using fresh bone marrow from my matched unrelated donor, on Dec. 6. I am now on Day 64 post-allo transplant and things are going pretty well (no acute GvHD as yet). Both of my transplants were done on an outpatient basis, meaning I was never hospitalized overnight.

If you would like to know more about the chemos and radiation administered, just let me know.

Sybil Whitman, 51

Dx. Oct. 2003 (unclassified NHL), CHOP x 8, R-CVP x 6, auto SCT April 2006, mini-allo BMT Dec. 6, 2006.

Re: Judy

Hi ,

Yes, I do remember you writing about your trials and tribulations regarding your tick bite... nasty buggers aren't they. I don't recall what the name of the parasite was that Rob had, it settled in his intestines and he had the runs for over a month, they finally found the right antibiotic, doxycycline which he's been on for a few weeks and will continue on it for another month. Scary time. Babesiosis does not sound familiar, so that's not what Rob had, I'll find out what it was and let you know. It's amazing how the body reacts to things with a suppressed immune system, very very frightening.

When I speak with our transplant coordinator, I will ask bout the 10 point thing and find out about that and will let you know what I find out.

Problem with Dana Farber for us is he is out of network on insurance and therefore won't be covered because there are transplant programs that are in our network. We have to stick with what our insurance will cover. It's horrible that insurance companies dictate what we can and cannot do. Rob was eligible for a trial drug program, but the insurance wouldn't cover it and if we paid for it ourselves it would have been between $3,000-4,000 per month for 8 months, which would destroy us financially. We have four kids still at home, no way we could cover that expense and as it turns out, this trial probably wouldn't have worked for him with the type of CLL he has. So far, it's looking like the campath is doing it's thing and we're seeing some positive signs... and speaking of insurance, initially our insurance company gave approval for Rob to get the Campath while he was inpatient at the hospital , but not as an outpatient, so they had to keep him in the hospital for four extra days just to administer the campath, now, how nuts is that? He was ready for release but had to stay just to get the drug. I just shake my head in disbelief over and over. Each time he gets the campath it is $5,000 (three times a week) and the Rituxin is about the same cost (once a week). Just mind blowing how expensive this all is. As much as I complain about how the insurance companies dictate how we get treatment, without this, we'd be destroyed financially.

Anyway, thank you for the info and I will let you know what I find out from the transplant coordinator when we speak. If you or anyone else who has any knowledge about the bone marrow transplant procedure or protocol and can give me any pointers on what to ask or what to look into, I would greatly appreciate it. Thank you so very much, Judy

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.411 / Virus Database: 268.17.29/673 - Release Date: 2/6/2007

February 12, 2007

Hi Sybil

First of all, thank you so much for responding. I'm happy to hear you are doing well. Your situation sounds very different than Rob's, in that he will have to undergo the transplant in patient and will have to be in isolation for quite some time from what I hear. We still have some treatment time with the Campath left before we go up to Rochester to meet with the transplant team, but once we do and I find out more about what to expect I'll be happy to share that info. Right now we don't have a time frame as they need to do the campath for about four months at least.

I've come to learn that although someone has CLL or SLL, it can vary greatly within the disease itself and what's going to work for one may not work for others. Rob underwent the normal protocol but it didn't work. Thank you again for contacting me with your experience, you were very sweet to do so and I wish you well. Judy

March 24, 2007

Thank you I'll look further into both trials.

JudyAOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

March 25, 2007

Here are the two trials Judy is looking into. A tough call.

(Judy: Dr. Furman asked.....)

Hi ,

I wanted you to know that we heard from the oncologist up in Rochester, she's asking to think about going on one of two clinical trials she's running in the P. Wilmot Cancer Center at Strong Memorial Hospital. One is HuMax-CD20. They are allowing 100 people in the study, it has four phases and may last up to 4 years. For six months there will be 13 visits, for a 1 1/2 year period there will be 7 visits and for two years following that, a total of 8 visits. During treatment he will be getting 8 weekly infusions and then 4 monthly infusions. And, this is at no cost to the patient, as a matter of fact the patient receives $30.00 per day for reimbursement of costs such as parking, meals, etc.

The other trial she's sent him to look over is for R935788 also known as R788 this is for 60 subjects. Twelve subjects will be enrolled in phase 1 and will complete 28 days of treatment (a pill) and then in phase 2 there will be 48 more subjects. This is a drug normally used for people with arthritis and they are trying it out on people with B-cell lymphoma. This will be once a week for 4 weeks and the subject will have to be in the clinic for up to 4 hours after taking the drug and blood tests will be done to measure the amount of R406 (R788 becomes R406 in the body). Then there are visits once every 2 weeks during the second four weeks of the study. There will be visits every 12 weeks. There is no cost to the subject and no compensation is given. Either way it's a frequent schlep up to Rochester, but we'll do what we have to do. Any thoughts or suggestions? Again thank you, JudyAOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

March 25, 2007

what trials are we talking about?

Med Advisor

>

> Thank you I'll look further into both trials.

> Judy

>

> ************************************** AOL now offers free email to

everyone.

> Find out more about what's free from AOL at http://www.aol.com.

>

March 25, 2007

Thank you Ellen, that was beautiful and inspiring.

Jean

Re: Judy

what trials are we talking about?Med Advisor>> Thank you I'll look further into both trials. > Judy> > > > ************************************** AOL now offers free email to everyone. > Find out more about what's free from AOL at http://www.aol.com.>

March 25, 2007

Both drugs are very interesting. The HuMax-CD20 trial is probably the better choice at this time. HuMax-CD20 has already been through a great deal of clinical development and is known to be safe and effective. The current trial is trying to ascertain how safe and effective. The other agent is a syk kinase inhibitor. I suspect we will be hearing a great deal about this agent in the future. Zap-70 is a member of the syk kinase family. This agent, R788, may be able to help overcome some of what drives the zap-70 positive, and even negative, CLL cases. But the R788 trial is an early stage trial and thus there is much less clinical information available. There are no data regarding any preliminary efficacy in CLL. Thus, it would be best to go with the agent that has a more proven track record.jb50192@... wrote: Here are the two trials Judy is looking into. A tough call. (Judy: Dr. Furman asked.....) Hi , I wanted you to know that we heard from the oncologist up in Rochester, she's asking to think about going on one of two clinical trials she's running in the P. Wilmot Cancer Center at Strong Memorial Hospital. One is HuMax-CD20. They are allowing 100 people in the study, it has four phases and may last up to 4 years. For six months there will be 13 visits, for a 1 1/2 year period there

will be 7 visits and for two years following that, a total of 8 visits. During treatment he will be getting 8 weekly infusions and then 4 monthly infusions. And, this is at no cost to the patient, as a matter of fact the patient receives $30.00 per day for reimbursement of costs such as parking, meals, etc. The other trial she's sent him to look over is for R935788 also known as R788 this is for 60 subjects. Twelve subjects will be enrolled in phase 1 and will complete 28 days of treatment (a pill) and then in phase 2 there will be 48 more subjects. This is a drug normally used for people with arthritis and they are trying it out on people with B-cell lymphoma. This will be once a week for 4 weeks and the subject will have to be in the clinic for up to 4 hours after taking the drug and blood tests will be done to measure the amount of R406 (R788 becomes R406 in the body). Then there are visits once every 2 weeks during the second four weeks of the study.

There will be visits every 12 weeks. There is no cost to the subject and no compensation is given. Either way it's a frequent schlep up to Rochester, but we'll do what we have to do. Any thoughts or suggestions? Again thank you, Judy AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

It's here! Your new message!Get

new email alerts with the free Toolbar.

March 26, 2007

Thank you to and Dr. Furman for responding to my email regarding the two trials presented, your responses have been very helpful in our decision making process. You, and the work you do with this support group is wonderful, extremely helpful and very appreciated. I encourage everyone to make a donation to the website to help keep this going, the support and information that is shared here is invaluable.

JudyAOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

November 16, 2007

Now, I did the same thing at home. I figured if no one would be his friend, I

would be. I would go out and play whatever he wanted to play. I made it look

so enticing that other kids wanted to come play ... start baseball games,

kickball, nerf blasters. Then I would kind of let them have it! I don't really

understand why you want to come and play ... said you guys weren't

really friends anymore, that would never let him play. What I found out is that

usually there was a ring leader of the boys and one would say not to play with

someone and the others tended to follow but really had no idea why, and really

didn't even know what they were doing. I tgot much better. I would bring out

homemade cookie, brownies, drinks, etc. Maybe I bought the friends for him ...

but things got much better.

c ward <cward_ri@...> wrote: Oh the recess saga! My son went

through this and I just went in for recess and played really fun games with him.

Of course, the other kids wanted to play with us. I said only his friends could

play and so as long as they were his friend, they could play with us ... but if

not, they had to go elsewhere. I made the other kids feel special, too, and I

would always talk about how awesome my son was. We played lots of imagination

games and I really had a fun time. It helped him alot and I got to see what the

others were playing and how to help him fit in better ... or branch off and lead

in another game.

Can you do something similar with him?

jchabot <jchabot@...> wrote:

Hi

Thanks so much for sharing! I have always had that fear of something like this

happening to one of my kids, because it happened to me also. I remember in high

school going into the bathroom at lunchtime because I had nobody to sit with.

This has never happened to my girls, but my son is definitely getting picked on,

and the boys in the neighborhood don't want to play with him anymore either. He

really is so loud and diffficult, but Geez! He's only a little 6 yr old boy. He

just turned 6 the end of September.I keep thinking that maybe if he gets

stabilized this will all go away. I feel so bad for him. I will try some of your

suggestions.

Thanks so much for being there! It really helps to know others have gone through

this with their kids!

Hugs

Judy

<@...> wrote: (((hugs)))

It's hard when feeling left out. What kind of playground is it?

Are there things he can do for himself (climbing, sliding. monkey

bars...)? I would tell him I know it hurts to be left out, etc.,

but spend the time doing " climbing, monkey bars... " and don't worry

about the others (yeah, easier said than done).

I remember my oldest son in 5th grade. The guys would go out and

play basketball. They would choose teams. No one chose him, he

sucked at it. So I tried to turn him toward the other things he

could do. Heck, being older he could have brought cards to play

solitaire or something or a book.... I did speak to the teacher

about it. I know growing up that some days we had " free time " just

to run around and then other days we had the " organized " play where

teacher had us all playing kick ball or other (just ask that kids

don't pick teams, teacher divides up). I think his teacher didn't

organize them (they were 5th graders) and I think she also said

something to the entire class which backfired on me as she didn't

name names but of course all students (boys anyway) figured my son's

mom had said something so KNEW it had to do with him, and thus he

was mad at me.

UGH! No easy answers but I sure can empathize. I had similar when

I was young too and still couldn't get answers for my son in the

same situation. But I did just try to stay busy on my own with

things that I could do (like climbing, swinging...).

((hugs))

--

..

November 16, 2007