Re: Kim

[Guest guest]

Kim --

Thanks for your support on the " wild toddler " issue! Where do you live? We're

in Highland Park, which you probably know is about 25 mi. north of Chicago.

When we moved here in 1996, I never dreamed (nightmare is more like it) that

living two blocks from Highland Park Hospital would turn out to be so handy!

Thanks again --

(mom to , age 2, antibody def, IgA, IgM, IgG def - not on IGIV yet)

[Guest guest]

Hi, Kim. Don't feel guilty about the OCD. You did not cause it and anything

could have brought it out. Your son is so lucky to have you. You are

looking for answers for him and helping him to get well. That's wonderful! I

spent

my entire childhood with untreated OCD and would have done anything to feel

better. Think of all the things you have done that were good for your

son--when I start thinking about the times I yelled at my youngest for not going

to

bed, I remind myself of the countless times I didn't yell at her. She would

have been an easy child to abuse because she was so difficult and when I start

feeling guilty I have to remind myself of all the times I didn't get mad and all

the times I gave her what she needed. We can only do our best and you are

doing so much now! Don't worry about the meds right now. Sometimes it takes a

hefty dose of medication to knock the OCD on its butt and then the meds can be

adjusted down. Relief is on its way and it will feel so good to your family!

Kelley in NV

[Guest guest]

Kelley,

You are such an encourager! Thanks for your message!

When you were a child did you realize you had a problem? My son's psychiatrist

thinks he has schizophrenia as well as the OCD because he doesn't seem to know

that something is not right, and when he does acknowledge that he is different

than he used to be, he says he doesn't want to go back to how he used to be

because it is " easier " now. (I don't see how it can be easier, though, with all

the things he has to do just to eat something or get his laundry washed,

etc....) I have to say that I want it not to be schizophrenia (partly because it

sounds scarier to other people because of " famous " schizophrenics like Son of

Sam, etc.) Now that I am starting to understand a little bit of what OCD is all

about I would rather it be that (not that I get a choice!!!)

Thanks again for the words of encouragement!

Kim

[Guest guest]

Kim, My 12 yr old daughter has said similar things and neither I nor the

doc believes she is schiz. OCD is a great liar and convinced my daughter

that she didn't want to be her old self and that she liked OCD! Children

often have poor insight into OCD. Also, my daughter at times would say

there is a 'voice'...of course this concerned me thinking she is

psychotic. Shortly afterwards, I read about several patients 'hearing

the OCD voices'. I'm no psych, but unless there are other indicators, I

would be hesitant to call it schizophrenia. Is your psych thoroughly

familiar with OCD? Are there other symptoms that suggest schiz?

God bless,

cristey

On Sat, 3 Jul 2004 17:29:27 -0500 " & Kim Cotter "

writes:

> Kelley,

> You are such an encourager! Thanks for your message!

>

> When you were a child did you realize you had a problem? My son's

> psychiatrist thinks he has schizophrenia as well as the OCD because

> he doesn't seem to know that something is not right, and when he

> does acknowledge that he is different than he used to be, he says he

> doesn't want to go back to how he used to be because it is " easier "

> now. (I don't see how it can be easier, though, with all the things

> he has to do just to eat something or get his laundry washed,

> etc....) I have to say that I want it not to be schizophrenia

> (partly because it sounds scarier to other people because of

> " famous " schizophrenics like Son of Sam, etc.) Now that I am

> starting to understand a little bit of what OCD is all about I would

> rather it be that (not that I get a choice!!!)

>

> Thanks again for the words of encouragement!

> Kim

>

>

>

[Guest guest]

Christey,

The psych seems to be quite familiar with OCD. Personally, I feel that the what

she sees as him being detached is that he is concentrating on not spitting, etc.

while we are talking about the things that make him spit.

I just copied these symptoms of schizophrenia from a website, but can attribute

them to OCD and depression:

a.. Social withdrawal <was worse before anti-depressant, OCD tells him his

room is the safest place>

b.. Depersonalization (intense anxiety and a feeling of being unreal)

<seperation anxiety, bad things are going to happen if... those sound like OCD

to me, too>

c.. Loss of appetite <contaminated food, also improving with zoloft/risperdal>

d.. Loss of hygiene <contaminated shower, we cleaned up, sanitized, and spray

painted our " emergency " shower, which no one else uses, in the basement.

Immediate hygiene improvement>

e.. Delusions <thinks he's stronger now than before, could be a pubescent boy

notion, though>

f.. Hallucinations (eg, hearing things not actually present) <says he only

hears his name and not often>

g.. The sense of being controlled by outside forces <he thinks his ideas are

coming from himself, not from some other source>

So, I don't think it's schiz. I think that when she started seeing him he was

just so under the control of the OCD that he probably seemed schizo. He was

acting out then, too, and trying to run away. That has stopped. Fortunately,

she has not formally diagnosed him as schizo at this point, and maybe she won't

if we continue to see improvement.

Thanks for making me think more about symptoms! Have a happy Independence Day!

Kim

[Guest guest]

Kim,

Most children are not aware that their own inner monologues or the little voice

or conscience is not unique to them. Whatever you choose to call it. Since

your son has so many other problems, it is possible he isn't able to articulate

to the doctor that his OCD voice is telling him to do these things rather than

the " other " voices that are common to schizophrenics.

R.

---------------------------------

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[Guest guest]

,

If he talks about why he does things he says that the idea came from his own

mind, not from somewhere else. The psych dr. thinks he is " hearing other

voices " but is so " out of it " he may just think they are his own inner voice. I

think he would admit and be afraid if he was actually hearing " other " voices.

She also partly based her opinion on his deterioration of personal hygiene

issues, which was really a contamination fear and has improved since we provided

alternate toilet and showering facilities for him.

Thanks for your insight.

Kim

Re: Kim

Kim,

Most children are not aware that their own inner monologues or the little

voice or conscience is not unique to them. Whatever you choose to call it.

Since your son has so many other problems, it is possible he isn't able to

articulate to the doctor that his OCD voice is telling him to do these things

rather than the " other " voices that are common to schizophrenics.

R.

---------------------------------

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[Guest guest]

Hi Kim, Thanks for your respond, I am from Montreal, unless there would be in Montreal as well but if not... Do you know if these pharmacies would send to Montreal if I order there. and do I need a prescreption for it or is it sold on the counter? thank you so much. ChrisKim Authier Quinn wrote: Chris; Where do you live in Canada? In Ontario (Toronto) there are 2 compounding pharmacies ('s and York Downs) that supply MB12 injectables and nasal spray. If you're interested I can pass along their

numbers... Kim (also in Canada) :-) Re: Stan, any idea about this for Valtrex Hi Stan,Thanks for your suggestion, I would appreciate if you tell me a bit more about Methylcobalamin Nasal Spray (MB12). Is

it like B12 but in Nasal Spray form? what is it prescriped for exactly? I am from Canada and I am not sure if anybody knows about MB12.ThanksChris-- In mb12 valtrex , "Stan Kurtz" wrote:>> Hi > > I don't have a lot of experience with CFS and Valtrex. So, what I'm telling you regarding > Valtrex is just opinion. If you ever see your eyes turning yellow for any reason, I would > discontinue the therapy and call your doctor. I'm glad you stopped the Valtrex when you > saw the yellow eyes. I would suggest your doctor do a full work up including liver > enzymes. 3 grams (3000mg) is the adult dosage, but I think there is something else going > on, possibly from your chronic issues. These viruses may have been in your liver for

some > time now and you might need to start slower or work on liver support first. I wish I could > be of more help. We typically are using MB12 for CFS. You may want to consider talking > with your doctor about starting that first.> > We've not seen this issue in children at all. > > Typically what we've seen good results in adults with CFS is the Methylcobalamin Nasal > Spray (MB12) and you can find out the dosages in the Database section of the group under > FAQ MB12 Spray.> > - Stan> > > >> > Hi Stan> > > > I am new to this list, and I have few questions on Valtrex.> > > > My doctor prescribed me valtrex 3 gram a day for 2 weeks then lower> > it to 2 gram for a month than lowered it again for 3 times 500

for> > another 2 weeks, I have positive HHV6, EBV, my white blood cell> > and NK are low, all this from more than one year. I also have CFS> > since 11 year.> > > > 1. I felt so terrible on Valtrex, but it is not similar to a flu > > like symptom, it is more like intense fatigue, diseness, and huge > > weakness, that I had hard time standing up or walking even inside > > the house feel my legs and all my body so weak, and very fatigued, > > also my eyes were so yellow, I am wondring if this reaction is > > normal? and could be Valtrex harsh on the liver and that why i had > > yellow eyes?> > > > I actually stopped the drug for about a week and I felt the same> > symptoms for the last whole week after stopping it, but less intense> > every day.> > > > I tried to

reach my doctor since last week, but did not get any> > answer from him yet. would appreciate so much any advice from the> > group.> > > > 2.I noticed that the group talks more about children, wondring if> > any adults on this list are on Valtrex or is the group is more for> > children?> > > > thank you in advance for your reply> > and God bless> > Chris> >>

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[Guest guest]

Hi Chris;

Yes, you do need a prescription for MB12 injectables and MB12 nasal spray.

Sorry, I'm unsure if there are any compounding pharmacies in Montreal. I live about an hour north of Toronto, and I get meds shipped to my house. The pharmacies in Toronto would probably ship to Montreal, however I don't know if they would ship something that needs to be refrigerated over such a long distance. Here are their phone numbers:

's Pharmacy -

York Downs Pharmacy -

Good luck,

Kim :-)

Re: Stan, any idea about this for Valtrex

Hi Stan,Thanks for your suggestion, I would appreciate if you tell me a bit more about Methylcobalamin Nasal Spray (MB12). Is it like B12 but in Nasal Spray form? what is it prescriped for exactly? I am from Canada and I am not sure if anybody knows about MB12.ThanksChris-- In mb12 valtrex , "Stan Kurtz" wrote:>> Hi > > I don't have a lot of experience with CFS and Valtrex. So, what I'm telling you regarding > Valtrex is just opinion. If you ever see your eyes turning yellow for any reason, I would > discontinue the therapy and call your doctor. I'm glad you stopped the Valtrex when you > saw the yellow eyes. I would suggest your doctor do a full work up including liver > enzymes. 3 grams (3000mg) is the adult dosage, but I think there is something else going > on, possibly from your chronic issues. These viruses may have been in your liver for some > time now and you might need to start slower or work on liver support first. I wish I could > be of more help. We typically are using MB12 for CFS. You may want to consider talking > with your doctor about starting that first.> > We've not seen this issue in children at all. > > Typically what we've seen good results in adults with CFS is the Methylcobalamin Nasal > Spray (MB12) and you can find out the dosages in the Database section of the group under > FAQ MB12 Spray.> > - Stan> > > >> > Hi Stan> > > > I am new to this list, and I have few questions on Valtrex.> > > > My doctor prescribed me valtrex 3 gram a day for 2 weeks then lower> > it to 2 gram for a month than lowered it again for 3 times 500 for> > another 2 weeks, I have positive HHV6, EBV, my white blood cell> > and NK are low, all this from more than one year. I also have CFS> > since 11 year.> > > > 1. I felt so terrible on Valtrex, but it is not similar to a flu > > like symptom, it is more like intense fatigue, diseness, and huge > > weakness, that I had hard time standing up or walking even inside > > the house feel my legs and all my body so weak, and very fatigued, > > also my eyes were so yellow, I am wondring if this reaction is > > normal? and could be Valtrex harsh on the liver and that why i had > > yellow eyes?> > > > I actually stopped the drug for about a week and I felt the same> > symptoms for the last whole week after stopping it, but less intense> > every day.> > > > I tried to reach my doctor since last week, but did not get any> > answer from him yet. would appreciate so much any advice from the> > group.> > > > 2.I noticed that the group talks more about children, wondring if> > any adults on this list are on Valtrex or is the group is more for> > children?> > > > thank you in advance for your reply> > and God bless> > Chris> >>

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