New member

[Guest guest]

In a message dated 1/26/2007 7:06:02 P.M. Eastern Standard Time,

maryhohman@... writes:

after the teacher has explained how to do a

problem, my daughter will almost always go up to her and ask for

confirmation of the explanation. (Her teacher says that my daughter

always has the explanation right, but apparently needs the

confirmation.)

Welcome to the group. My daughter also had this type of issue -although we

never had too much of an issue with it in school (she was always able to

handle it on her own to a certain degree - we didn't have to involve the school

with an explanation). We found it took forever for her to do her homework, in

part due to the fact that she read everything multiple times (even just a

paragraph) because she constantly doubted that she understood what she read -

even if it was something she actually already knew, she would still doubt it &

reread multiple times. This would also happen throughout normal daily

activity. She would have to ask us if something was ok - no matter how

inconsequential.

Exactly how upset does your dd (darling daughter) get when her routine is

interrupted? Is it complete melt down until she can get it right - refusing to

move on to anything else until she does it the right way? If yes, then

you're dealing with OCD.

While I understand the doctor saying he must meet with your daughter as

well, personally I don't see anything wrong with your request to meet with the

doctor prior to bringing your child in for evaluation. Maybe he thought you

wanted to come in & talk to him and not be charged for an appointment? Perhaps

if you asked his office for a consultation for informational purposes for

you as the parent....? Did you try another doctor?

Getting a diagnosis is a starting point. You can get a list of doctors who

treat OCD on the foundation's website at _www.OCFoundation.org_

(http://www.OCFoundation.org) along with lots of information.

Good luck to you & your daughter.

LT

[Guest guest]

Hi ,

My daughter was diagnosed with us in the room. We had an hour discussing her

symptoms while she played with some toys. She would also add a few word in

sometimes. I had found it beneficial for us to be all together. It was

impossible for us to hide our concerns from her. From doing her rituals all

night and needing constant reassurance.

Once we understood it was OCD then it was easier to move along accept it and

start working it out. This group will definitely help you along the way. I

wish I would have found this earlier. Now I appreciate reading others parents

trials and errors, emotions since I have gone through alot of it. Your on the

right track.

LD

nna <mdonlon@...> wrote:

Hi , and Welcome,

This sounds like cut-and-dry OCD to me, I am curious why you think it

could be OCPD? If she were 2 or 3, I could pass off some of the

rigidity to the age, but at 9 (mine is 9 as well) these things should

not bother her so much. The key is that she gets " very very upset " .

That is classic behavior when an OCD ritual is interrupted.

I think you have a problem with your physician - why does he insist on

seeing her with you? Have you told him in general what the issues

are? I agree you should talk with him privately.

nna.

NY

PS) Always trust your motherly instinct - if you think something's

" not right " , it probably is the case

>

> Hi everyone,

> Thanks to someone from another group, I found this group.

> I am a mom of a just-turned 9 year old girl. I am beginning to

> wonder if she has OCD or perhaps obsessive-compulsive personality

> disorder. I wanted to make an appointment with her physician to talk

> about her behavior for an initial evaluation and possible referral,

> but I wanted to do it without her at first. He won't see me unless

> she is there too, and I don't want to alarm her with my concerns

> just yet. I have been doing some research because I don't know if

> I'm being overly sensitive to her personality or if she does have

> the beginnings of OCD or OCPD. Since this group seems to have a lot

> of early childhood onset experience, I thought I would pose my

> question here.

>

> My daughter is a delightful and loving girl but in the last year or

> so, I have noticed that she is becoming more rigid in her behavior.

> She is very much a perfectionist. She likes things to be

> done evenly (like a night-time ritual that involves goodnight kisses

> has turned into a perfunctory number of kisses and hugs on each side

> and if it's not done that way she gets upset.) She feels she has to

> say that she loves me 4 times in a row and if she doesn't she says

> it doesn't feel right. If our bedtime ritual together is

> interrupted or doesn't start right on time she gets very, very

> upset. I am the only one she wants to be involved with her night-

> time ritual. She is very smart and does very well in school but her

> teacher did mention that after the teacher has explained how to do a

> problem, my daughter will almost always go up to her and ask for

> confirmation of the explanation. (Her teacher says that my daughter

> always has the explanation right, but apparently needs the

> confirmation.) When she was younger she was really obsessed about me

> dying and she was always afraid of that. These are some of the

> behaviors that I'm concerned about but there are more.

> So, I'm sorry for this long post but I was wondering what you all

> might think about this. Sometimes I think I'm overreacting and

> should cancel her doctor appointment and other times I feel that if

> it is something like OCD or OCDP then she would benefit from

> therapy. What do you think?

> Thanks so much!

>

>

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

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bargains.

[Guest guest]

,

Your daughter sounds a lot like mine. Were I you, I would keep the

appointment. If it turns out she does have OCD, then the sooner therapy begins,

the better. If she doesn't, then you can be relieved knowing she doesn't.

P.

maryhohman <maryhohman@...> wrote:

Hi everyone,

Thanks to someone from another group, I found this group.

I am a mom of a just-turned 9 year old girl. I am beginning to

wonder if she has OCD or perhaps obsessive-compulsive personality

disorder. I wanted to make an appointment with her physician to talk

about her behavior for an initial evaluation and possible referral,

but I wanted to do it without her at first. He won't see me unless

she is there too, and I don't want to alarm her with my concerns

just yet. I have been doing some research because I don't know if

I'm being overly sensitive to her personality or if she does have

the beginnings of OCD or OCPD. Since this group seems to have a lot

of early childhood onset experience, I thought I would pose my

question here.

My daughter is a delightful and loving girl but in the last year or

so, I have noticed that she is becoming more rigid in her behavior.

She is very much a perfectionist. She likes things to be

done evenly (like a night-time ritual that involves goodnight kisses

has turned into a perfunctory number of kisses and hugs on each side

and if it's not done that way she gets upset.) She feels she has to

say that she loves me 4 times in a row and if she doesn't she says

it doesn't feel right. If our bedtime ritual together is

interrupted or doesn't start right on time she gets very, very

upset. I am the only one she wants to be involved with her night-

time ritual. She is very smart and does very well in school but her

teacher did mention that after the teacher has explained how to do a

problem, my daughter will almost always go up to her and ask for

confirmation of the explanation. (Her teacher says that my daughter

always has the explanation right, but apparently needs the

confirmation.) When she was younger she was really obsessed about me

dying and she was always afraid of that. These are some of the

behaviors that I'm concerned about but there are more.

So, I'm sorry for this long post but I was wondering what you all

might think about this. Sometimes I think I'm overreacting and

should cancel her doctor appointment and other times I feel that if

it is something like OCD or OCDP then she would benefit from

therapy. What do you think?

Thanks so much!

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

The fish are biting.

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[Guest guest]

at first I thought it was wrong to talk about her like she's not there

but now I realize she's there and can pop in and fill us in on stuff

we may not have known

eileen

Quoting Lise <aldol32003@...>:

> Hi ,

> My daughter was diagnosed with us in the room. We had an hour

> discussing her symptoms while she played with some toys. She would

> also add a few word in sometimes. I had found it beneficial for us

> to be all together. It was impossible for us to hide our concerns

> from her. From doing her rituals all night and needing constant

> reassurance.

> Once we understood it was OCD then it was easier to move along

> accept it and start working it out. This group will definitely help

> you along the way. I wish I would have found this earlier. Now I

> appreciate reading others parents trials and errors, emotions since

> I have gone through alot of it. Your on the right track.

> LD

>

>

> nna <mdonlon@...> wrote:

> Hi , and Welcome,

>

> This sounds like cut-and-dry OCD to me, I am curious why you think it

> could be OCPD? If she were 2 or 3, I could pass off some of the

> rigidity to the age, but at 9 (mine is 9 as well) these things should

> not bother her so much. The key is that she gets " very very upset " .

> That is classic behavior when an OCD ritual is interrupted.

>

> I think you have a problem with your physician - why does he insist on

> seeing her with you? Have you told him in general what the issues

> are? I agree you should talk with him privately.

>

> nna.

> NY

>

> PS) Always trust your motherly instinct - if you think something's

> " not right " , it probably is the case

>

>

>>

>> Hi everyone,

>> Thanks to someone from another group, I found this group.

>> I am a mom of a just-turned 9 year old girl. I am beginning to

>> wonder if she has OCD or perhaps obsessive-compulsive personality

>> disorder. I wanted to make an appointment with her physician to talk

>> about her behavior for an initial evaluation and possible referral,

>> but I wanted to do it without her at first. He won't see me unless

>> she is there too, and I don't want to alarm her with my concerns

>> just yet. I have been doing some research because I don't know if

>> I'm being overly sensitive to her personality or if she does have

>> the beginnings of OCD or OCPD. Since this group seems to have a lot

>> of early childhood onset experience, I thought I would pose my

>> question here.

>>

>> My daughter is a delightful and loving girl but in the last year or

>> so, I have noticed that she is becoming more rigid in her behavior.

>> She is very much a perfectionist. She likes things to be

>> done evenly (like a night-time ritual that involves goodnight kisses

>> has turned into a perfunctory number of kisses and hugs on each side

>> and if it's not done that way she gets upset.) She feels she has to

>> say that she loves me 4 times in a row and if she doesn't she says

>> it doesn't feel right. If our bedtime ritual together is

>> interrupted or doesn't start right on time she gets very, very

>> upset. I am the only one she wants to be involved with her night-

>> time ritual. She is very smart and does very well in school but her

>> teacher did mention that after the teacher has explained how to do a

>> problem, my daughter will almost always go up to her and ask for

>> confirmation of the explanation. (Her teacher says that my daughter

>> always has the explanation right, but apparently needs the

>> confirmation.) When she was younger she was really obsessed about me

>> dying and she was always afraid of that. These are some of the

>> behaviors that I'm concerned about but there are more.

>> So, I'm sorry for this long post but I was wondering what you all

>> might think about this. Sometimes I think I'm overreacting and

>> should cancel her doctor appointment and other times I feel that if

>> it is something like OCD or OCDP then she would benefit from

>> therapy. What do you think?

>> Thanks so much!

>>

>>

>

>

>

>

>

>

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

> Finding fabulous fares is fun.

> Let FareChase search your favorite travel sites to find

> flight and hotel bargains.

>

>

[Guest guest]

Thanks, and everyone else who responded to my concerns. I

have to say that I am both relieved and thankful for your responses,

but also scared. I liked a lot of everyone's suggestions. When I

originally called the doctor's office about it, I spoke with the

nurse and told her I wanted an appointment with the doctor first and

she said that he wanted to see the both of us together on the first

appointment. So, I think I'll write a letter to her physician as a

heads up, then get a book about OCD in childhood and read it with my

daughter and set up the appointment. She is sort of in denial about

some of the things she does, so perhaps a book will help. I think

Eileen asked me why I think it's OCPD rather than OCD. From some of

the stuff I've read, it seems like to be diagnosed with OCD, the

person has to be occupied with the obsessions or compulsions for

more than an hour a day, and I don't think that's true for my

daughter. Right now. However, am I understanding that perhaps OCD

starts kind of slow, then builds up and possibly gets worse after

the onset of more stressful things in life? I'm starting to read

the files on this forum so I'll learn more as I go on. Thanks again

for everyone's support on this.

[Guest guest]

Thanks, and everyone else who responded to my concerns. I

have to say that I am both relieved and thankful for your responses,

but also scared. I liked a lot of everyone's suggestions. When I

originally called the doctor's office about it, I spoke with the

nurse and told her I wanted an appointment with the doctor first and

she said that he wanted to see the both of us together on the first

appointment. So, I think I'll write a letter to her physician as a

heads up, then get a book about OCD in childhood and read it with my

daughter and set up the appointment. She is sort of in denial about

some of the things she does, so perhaps a book will help. I think

Eileen asked me why I think it's OCPD rather than OCD. From some of

the stuff I've read, it seems like to be diagnosed with OCD, the

person has to be occupied with the obsessions or compulsions for

more than an hour a day, and I don't think that's true for my

daughter. Right now. However, am I understanding that perhaps OCD

starts kind of slow, then builds up and possibly gets worse after

the onset of more stressful things in life? I'm starting to read

the files on this forum so I'll learn more as I go on. Thanks again

for everyone's support on this.

[Guest guest]

Hi , OCD can consume some people all during their waking hours

but it can also just be applied to having to do certain things,

having to do them certain ways maybe...it differs.

But it's still OCD. Your daughter might not be spending much time

with any one thing (or even all of them adding up to an hour) but it

was enough to make you question it, a teacher has noted something,

your daughter can get very upset...so I think you're definitely right

in trying to address it now.

Also a lot of times, things parents didn't know about are actually

going on with their children too. You might be surprised later at

what else she does or thinks that she hasn't mentioned or you haven't

yet picked up on as OCD or related to it. There's no way to tell if

her OCD would ever get worse but for some people it can seem to begin

slowly, i.e., with just a few little things.

Just some quick thoughts. Let us know how things are going. And if

you get a book, what she thinks of it.

>

> Thanks, and everyone else who responded to my concerns. I

> have to say that I am both relieved and thankful for your

responses,

> but also scared. I liked a lot of everyone's suggestions. When I

> originally called the doctor's office about it, I spoke with the

> nurse and told her I wanted an appointment with the doctor first

and

[Guest guest]

I read " mr worry " and " up and down the worry hill " with my daughter. I took

special time, alone with just she and I. She was engrossed in the stories and

sympathized with the kids. At the end, we talked about them and I asked her,

Lindsey is that you feel sometimes, like the children in those books. She

looked at me and said, No, I never feel like that -- but they were good stories,

mom! Ahhhh!!!!!!!1

maryhohman <maryhohman@...> wrote:

Thanks, and everyone else who responded to my concerns. I

have to say that I am both relieved and thankful for your responses,

but also scared. I liked a lot of everyone's suggestions. When I

originally called the doctor's office about it, I spoke with the

nurse and told her I wanted an appointment with the doctor first and

she said that he wanted to see the both of us together on the first

appointment. So, I think I'll write a letter to her physician as a

heads up, then get a book about OCD in childhood and read it with my

daughter and set up the appointment. She is sort of in denial about

some of the things she does, so perhaps a book will help. I think

Eileen asked me why I think it's OCPD rather than OCD. From some of

the stuff I've read, it seems like to be diagnosed with OCD, the

person has to be occupied with the obsessions or compulsions for

more than an hour a day, and I don't think that's true for my

daughter. Right now. However, am I understanding that perhaps OCD

starts kind of slow, then builds up and possibly gets worse after

the onset of more stressful things in life? I'm starting to read

the files on this forum so I'll learn more as I go on. Thanks again

for everyone's support on this.

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

The fish are biting.

Get more visitors on your site using Search Marketing.

[Guest guest]

LOL!!!!! my dd loved those books and was relieved that " they're like

me " - question though - have any of you had them read to the class??

my school is totally against even acknowledging the ocd or talking

about it it seems - any other experiences?????

eileen

Quoting c ward <cward_ri@...>:

> I read " mr worry " and " up and down the worry hill " with my daughter.

> I took special time, alone with just she and I. She was engrossed

> in the stories and sympathized with the kids. At the end, we

> talked about them and I asked her, Lindsey is that you feel

> sometimes, like the children in those books. She looked at me and

> said, No, I never feel like that -- but they were good stories,

> mom! Ahhhh!!!!!!!1

>

>

>

> maryhohman <maryhohman@...> wrote:

> Thanks, and everyone else who responded to my concerns. I

> have to say that I am both relieved and thankful for your responses,

> but also scared. I liked a lot of everyone's suggestions. When I

> originally called the doctor's office about it, I spoke with the

> nurse and told her I wanted an appointment with the doctor first and

> she said that he wanted to see the both of us together on the first

> appointment. So, I think I'll write a letter to her physician as a

> heads up, then get a book about OCD in childhood and read it with my

> daughter and set up the appointment. She is sort of in denial about

> some of the things she does, so perhaps a book will help. I think

> Eileen asked me why I think it's OCPD rather than OCD. From some of

> the stuff I've read, it seems like to be diagnosed with OCD, the

> person has to be occupied with the obsessions or compulsions for

> more than an hour a day, and I don't think that's true for my

> daughter. Right now. However, am I understanding that perhaps OCD

> starts kind of slow, then builds up and possibly gets worse after

> the onset of more stressful things in life? I'm starting to read

> the files on this forum so I'll learn more as I go on. Thanks again

> for everyone's support on this.

>

>

>

>

>

>

>

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

> The fish are biting.

> Get more visitors on your site using Search Marketing.

>

>

[Guest guest]

Hi Maureen and welcome to the group. Sorry things have taken a difficult turn

for your son and your family. I think you'll find a lot of support here, some

useful information and a place to vent. You mentioned that your son's symptoms

exploded suddenly after a bout with pneumonia. Are you (or your providers)

familiar with PANDAS? Essentially it is OCD that seems to appear overnight that

is triggered by a strep infection (or in my daughter's case just exposure to

strep). Since your son was very sick is it possible that he had strep too? If

it is PANDAS, the good news is that his OCD symptoms will respond quickly to

antibiotics. It doesn't make the OCD go away completely but just to give you my

experience in a nutshell- my daughter woke up one day last year (she was 3 at

the time) and everything was contaminated. She wouldn't eat or brush her teeth

and was essentially non-functioning for 3 days. My other daughter had strep

throat at the time and our wonderful

pediatrician suspected that might have PANDAS. Both girls started

antibiotics and within days was eating, brushing her teeth and even

laughing again. A year later, we put her on prophylactic antibiotics during the

Fall and Winter months. Some of her OCD behaviors that were almost gone over

the Spring and Summer we are seeing again now that it's the height of strep

season but we are a million miles away from the horror of last year. We did not

need to use any SSRI's, so far the antibiotics have been enough to help .

I think it's worth checking it out with your son's doctors. Good luck and

welcome.

Jill

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

Get amazing travel prices for air and hotel in one click on FareChase

[Guest guest]

Jill-

THANK YOU. We are aware of PANDAS and our pediatrician doesn't believe in it as

a valid diagnosis but L's psychiatrist totally does. With L's onset at 5 we did

have a Strep test that came back negative, but I'm not 100% certain that this

isn't PANDAS-related. His symptoms flared with this recent upper-respiratory

infection and L has never really been back to full health since the pneumonia.

We are actually on our way this afternoon for a strep test and it's my hope that

he'll be put on prophylactic antibiotics. I'm going to push for it, if to just

rule it out as a medical intervention. Your story was great and just gives me

more reason to push this, especially in light of the problems with the SSRIs.

Thanks so much. I feel as though I've learned more real-life and useful

information in the last few days than in all the book research I've done since

his onset.

Maureen

Re:New Member

Hi Maureen and welcome to the group. Sorry things have taken a difficult turn

for your son and your family. I think you'll find a lot of support here, some

useful information and a place to vent. You mentioned that your son's symptoms

exploded suddenly after a bout with pneumonia. Are you (or your providers)

familiar with PANDAS? Essentially it is OCD that seems to appear overnight that

is triggered by a strep infection (or in my daughter's case just exposure to

strep). Since your son was very sick is it possible that he had strep too? If it

is PANDAS, the good news is that his OCD symptoms will respond quickly to

antibiotics. It doesn't make the OCD go away completely but just to give you my

experience in a nutshell- my daughter woke up one day last year (she was 3 at

the time) and everything was contaminated. She wouldn't eat or brush her teeth

and was essentially non-functioning for 3 days. My other daughter had strep

throat at the time and our wonderful

pediatrician suspected that might have PANDAS. Both girls started

antibiotics and within days was eating, brushing her teeth and even

laughing again. A year later, we put her on prophylactic antibiotics during the

Fall and Winter months. Some of her OCD behaviors that were almost gone over the

Spring and Summer we are seeing again now that it's the height of strep season

but we are a million miles away from the horror of last year. We did not need to

use any SSRI's, so far the antibiotics have been enough to help .

I think it's worth checking it out with your son's doctors. Good luck and

welcome.

Jill

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

Get amazing travel prices for air and hotel in one click on FareChase

[Guest guest]

Hi Maureen, welcome! I want to respond to your first/intro post

later (only have a moment now) but wanted to ask in regards to PANDAS

if you also have read about PITANDS? PANDAS falls under PITANDS (I

believe). PANDAS relates more to strep but PITANDS includes other

type infections.

Quickly doing a " search " on this, there's some criteria on both that

I'll copy & paste below.

My just-turned 18 yr old son is dealing with things similar to your

son, so hope to have a chance to write more later today!

single mom, 3 sons

, 18, with OCD, dysgraphia and Aspergers

********

PITANDS diagnostic criteria

(1) At some time in his or her life, the patient must have met

diagnostic criteria (DSM IV) for one of the following

neuropsychiatric disorders: Obsessive Compulsive Disorder, Tic

Disorder (including Tourette's), Autism, (or Autistic Spectrum

Disorder).

(2) Pediatric onset: symptoms of the disorder first become evident

between 18 months of age and the beginning of puberty.

(3) The onset of clinically significant symptoms must be sudden (with

or without a sub clinical prodrome), and/or there must be a pattern

of sudden, recurrent, clinically significant symptom exacerbation and

remissions ( " wax and waning pattern " ). Onset of a specific episode

typically can be assigned to a particular day or week, at which time

symptoms seem to " explode " in severity, and they are frequently

associated with an infectious episode.

(4) There must be evidence of an antecedent or concomitant infection.

Such evidence might include a positive throat culture, positive

streptococcal serologic findings (e.g. anti-streptolysin O or anti-

streptococcal DNAse , or a history of illness (e.g. pharyngitis,

sinusitis, infection with Epstein-Barr virus, influenza, ?recurrent

otitis media), and possibly recent exposure to childhood vaccination.

(5) Presence of auto antibodies (anticardiolipin, antineuronal,

antibody/antigen complexes, etc.)

(6) During the exacerbation, the majority of patients will have an

abnormal neuropsychiatric examination, frequently with hyperactivity

and adventitious movements ( " choreiform " movements).

(7) Measurable clinical improvement following " Steroid Burst " .

PANDAS diagnostic criteria

(1) Current presence of symptoms (DSM IV) of Obsessive Compulsive

Disorder, Tic Disorder (including Tourette's), Autism or Autistic

Spectrum Disorder, and Anorexia Nervosa*.

(2) Symptom onset between 18 months of age and puberty.

(3) Episodic course of symptom severity characterized by the abrupt

onset of symptoms and/or frequent, dramatic symptom exacerbation.

(4) Symptom exacerbation associated with beta-haemolytic

streptoccocal infection.

(5) Presence of abnormal neuropsychiatric examination, including

motor hyperactivity, adventitious movements, tics, etc.

(6) Measurable clinical improvement following " Steroid Burst " .

DISQUALIFYING FACTORS (absolute): Presence of symptoms before 1 year

of age.

DISQUALIFYING FACTORS (relative): Confirmed Dg. of Autism and/or

Autistic Spectrum Disorder in sibling(s).

(*) Male patients with Anorexia Nervosa should be of a particular

interest.

Modified " criteria " (from Albert J. Group A Streptococcal

Infections and Childhood Neuropsychiatric Disorders CNS Drugs Oct.

1997 8(4) 267-275

http://www.webpediatrics.com/pandas.html

[Guest guest]

are they doing blood or throat strep tests??

eileen

Quoting Pete and Maureen <the.joneses@...>:

> Jill-

>

> THANK YOU. We are aware of PANDAS and our pediatrician doesn't

> believe in it as a valid diagnosis but L's psychiatrist totally

> does. With L's onset at 5 we did have a Strep test that came back

> negative, but I'm not 100% certain that this isn't PANDAS-related.

> His symptoms flared with this recent upper-respiratory infection and

> L has never really been back to full health since the pneumonia.

> We are actually on our way this afternoon for a strep test and it's

> my hope that he'll be put on prophylactic antibiotics. I'm going

> to push for it, if to just rule it out as a medical intervention.

> Your story was great and just gives me more reason to push this,

> especially in light of the problems with the SSRIs. Thanks so much.

> I feel as though I've learned more real-life and useful

> information in the last few days than in all the book research I've

> done since his onset.

>

> Maureen

> Re:New Member

>

>

> Hi Maureen and welcome to the group. Sorry things have taken a

> difficult turn for your son and your family. I think you'll find a

> lot of support here, some useful information and a place to vent.

> You mentioned that your son's symptoms exploded suddenly after a

> bout with pneumonia. Are you (or your providers) familiar with

> PANDAS? Essentially it is OCD that seems to appear overnight that is

> triggered by a strep infection (or in my daughter's case just

> exposure to strep). Since your son was very sick is it possible that

> he had strep too? If it is PANDAS, the good news is that his OCD

> symptoms will respond quickly to antibiotics. It doesn't make the

> OCD go away completely but just to give you my experience in a

> nutshell- my daughter woke up one day last year (she was 3 at the

> time) and everything was contaminated. She wouldn't eat or brush her

> teeth and was essentially non-functioning for 3 days. My other

> daughter had strep throat at the time and our wonderful

> pediatrician suspected that might have PANDAS. Both girls

> started antibiotics and within days was eating, brushing her

> teeth and even laughing again. A year later, we put her on

> prophylactic antibiotics during the Fall and Winter months. Some of

> her OCD behaviors that were almost gone over the Spring and Summer

> we are seeing again now that it's the height of strep season but we

> are a million miles away from the horror of last year. We did not

> need to use any SSRI's, so far the antibiotics have been enough to

> help .

> I think it's worth checking it out with your son's doctors. Good

> luck and welcome.

> Jill

>

>

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

> Get amazing travel prices for air and hotel in one click on

> FareChase

>

>

[Guest guest]

Chris-

Thank you so much for the information. I had not heard of PITANDS and am 'glad'

to read that other infections can be part of this, too. Just returned from MD

-- L had pneumonia again, so he's back on antibiotics, which, God willing, might

impact this recent episode. Maureen

Re:New Member

Hi Maureen, welcome! I want to respond to your first/intro post

later (only have a moment now) but wanted to ask in regards to PANDAS

if you also have read about PITANDS? PANDAS falls under PITANDS (I

believe). PANDAS relates more to strep but PITANDS includes other

type infections.

Quickly doing a " search " on this, there's some criteria on both that

I'll copy & paste below.

My just-turned 18 yr old son is dealing with things similar to your

son, so hope to have a chance to write more later today!

single mom, 3 sons

, 18, with OCD, dysgraphia and Aspergers

********

PITANDS diagnostic criteria

(1) At some time in his or her life, the patient must have met

diagnostic criteria (DSM IV) for one of the following

neuropsychiatric disorders: Obsessive Compulsive Disorder, Tic

Disorder (including Tourette's), Autism, (or Autistic Spectrum

Disorder).

(2) Pediatric onset: symptoms of the disorder first become evident

between 18 months of age and the beginning of puberty.

(3) The onset of clinically significant symptoms must be sudden (with

or without a sub clinical prodrome), and/or there must be a pattern

of sudden, recurrent, clinically significant symptom exacerbation and

remissions ( " wax and waning pattern " ). Onset of a specific episode

typically can be assigned to a particular day or week, at which time

symptoms seem to " explode " in severity, and they are frequently

associated with an infectious episode.

(4) There must be evidence of an antecedent or concomitant infection.

Such evidence might include a positive throat culture, positive

streptococcal serologic findings (e.g. anti-streptolysin O or anti-

streptococcal DNAse , or a history of illness (e.g. pharyngitis,

sinusitis, infection with Epstein-Barr virus, influenza, ?recurrent

otitis media), and possibly recent exposure to childhood vaccination.

(5) Presence of auto antibodies (anticardiolipin, antineuronal,

antibody/antigen complexes, etc.)

(6) During the exacerbation, the majority of patients will have an

abnormal neuropsychiatric examination, frequently with hyperactivity

and adventitious movements ( " choreiform " movements).

(7) Measurable clinical improvement following " Steroid Burst " .

PANDAS diagnostic criteria

(1) Current presence of symptoms (DSM IV) of Obsessive Compulsive

Disorder, Tic Disorder (including Tourette's), Autism or Autistic

Spectrum Disorder, and Anorexia Nervosa*.

(2) Symptom onset between 18 months of age and puberty.

(3) Episodic course of symptom severity characterized by the abrupt

onset of symptoms and/or frequent, dramatic symptom exacerbation.

(4) Symptom exacerbation associated with beta-haemolytic

streptoccocal infection.

(5) Presence of abnormal neuropsychiatric examination, including

motor hyperactivity, adventitious movements, tics, etc.

(6) Measurable clinical improvement following " Steroid Burst " .

DISQUALIFYING FACTORS (absolute): Presence of symptoms before 1 year

of age.

DISQUALIFYING FACTORS (relative): Confirmed Dg. of Autism and/or

Autistic Spectrum Disorder in sibling(s).

(*) Male patients with Anorexia Nervosa should be of a particular

interest.

Modified " criteria " (from Albert J. Group A Streptococcal

Infections and Childhood Neuropsychiatric Disorders CNS Drugs Oct.

1997 8(4) 267-275

http://www.webpediatrics.com/pandas.html

[Guest guest]

They did a repeat throat culture today and we talked about doing the blood

panel. It ended up that L, once again, has pneumonia; the kid who rarely caught

anything before this school year. I'm watching carefully to see how the OCD

reacts to the antibiotics. Maureen

Re:New Member

>

>

> Hi Maureen and welcome to the group. Sorry things have taken a

> difficult turn for your son and your family. I think you'll find a

> lot of support here, some useful information and a place to vent.

> You mentioned that your son's symptoms exploded suddenly after a

> bout with pneumonia. Are you (or your providers) familiar with

> PANDAS? Essentially it is OCD that seems to appear overnight that is

> triggered by a strep infection (or in my daughter's case just

> exposure to strep). Since your son was very sick is it possible that

> he had strep too? If it is PANDAS, the good news is that his OCD

> symptoms will respond quickly to antibiotics. It doesn't make the

> OCD go away completely but just to give you my experience in a

> nutshell- my daughter woke up one day last year (she was 3 at the

> time) and everything was contaminated. She wouldn't eat or brush her

> teeth and was essentially non-functioning for 3 days. My other

> daughter had strep throat at the time and our wonderful

> pediatrician suspected that might have PANDAS. Both girls

> started antibiotics and within days was eating, brushing her

> teeth and even laughing again. A year later, we put her on

> prophylactic antibiotics during the Fall and Winter months. Some of

> her OCD behaviors that were almost gone over the Spring and Summer

> we are seeing again now that it's the height of strep season but we

> are a million miles away from the horror of last year. We did not

> need to use any SSRI's, so far the antibiotics have been enough to

> help .

> I think it's worth checking it out with your son's doctors. Good

> luck and welcome.

> Jill

>

>

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

> Get amazing travel prices for air and hotel in one click on

> FareChase

>

>

[Guest guest]

Hi again Maureen!

Wanted to comment/compare on some things you wrote.

" He has terrible thoughts of what a horrible person he is and,

because is so quiet and thoughtful, most people have no idea what's

going on in his head. "

A little over a year ago, my son (now 18) had his OCD return with bad

thoughts & scrupulosity issues. He is also the quiet and thoughtful

type. I've always said that I've never met a nicer person than

. Of course he hates that comment since he's such a " terrible

person " with these bad thoughts and mean thoughts about others and

such a sinner.... He won't relate the " particulars " of most of his

thoughts to me. His other problem with scrupe is all these

promises/vows he made to God dating all the way back to elementary

school apparently (and this bout of OCD all began in 11th grade so

now, of course, those promises way back then apparently " count " ! or

he had forgotten them until now or something).

Now 's OCD, the disorder, began right after he began 6th

grade. Also seemed to be abrupt in its onset. But no recent illness

at the time that I knew of. He had his OC tendencies at younger ages

but nothing that was a problem, disrupting, etc. Suddenly in 6th

grade he had compulsions all day! -- The return of his OCD in 11th

grade - well, it was never really " gone " but very much in the

background - came after quite a few months of being on no

medication. He quit his Celexa at the end of 10th grade, felt he

could handle OCD on his own! He doesn't want to try medication

again, sigh!

Regarding your son's medication - I think that I would also be

hesitant or wondering about adding another medication and one that is

for ADHD. Just seems to me that he couldn't handle the higher dose

of Zoloft. His body just may not have " settled back down " yet from

the higher dosage. Have you tried other SSRI medications yet or is

Zoloft the first? -- And did he begin that just recently?

I ask as so many parents (not me luckily) have had to trial more than

one SSRI to find one that worked for their child. And some had

similar bad reactions like your son but, say, the 3rd or 4th SSRI

tried was *the* one that worked and worked wonders! So...I'm

thinking why would the doctor treat for ADHD if those symptoms

weren't present before the Zoloft increase?? (if I understood that

correctly) I know doctors often add a 2nd medication to the SSRI to

help the effect of the SSRI though. (for your's and others' info,

here's one article:

http://www.homestead.com/westsuffolkpsych/OCDmeds.html

Of course I'm certainly no doctor, just another parent.

Sorry if I rambled a bit, I'm bad about that, LOL!

[Guest guest]

Maureen, sorry that he has pneumonia again, the poor kid! Just an FYI, my

daughter's throat culture was negative and the strep panel showed her titers to

be within the normal range. However, both the pediatrician and the psychiatrist

said that since we don't have a baseline titer number before the OCD, we don't

know what is " normal " for and therefore the numbers may have been

elevated for her. Luckily, we're all in agreement that the numbers don't matter

because she fits PANDAS in every other way and responds to treatment with

antibiotics. Your son has probably been on some pretty strong antibiotics to

treat the pneumonia, he just may need a longer course to treat the OCD (if it is

in fact PANDAS). As you will read in many posts, most kid's OCD gets worse when

they're sick. i think their immune systems are so busy fighting whatever

illness they might have that there's not much left over to fight the OCD so

there are flare-ups.

Good luck, keep pushing and keep us posted. Jill

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

Don't get soaked. Take a quick peak at the forecast

with the Search weather shortcut.

[Guest guest]

Chris-

Thanks for your note re: your experiences. And you did not ramble -- it's so

great to get other people's stories in full. I am not going to have my son go

on any additional medications right now (if ever). I think that the ADHD-type

reaction was to the higher dose of Zoloft. He's never been at more than 25 mg

and he did okay at 37.5 mg. The problems started right away with the hike to

50mg. The prescribing MD had even said that a number of kids don't reach a

therapeutic dose until 100mg! That just seems like so much for such a young

body. The REALLY interesting thing that came about over the weekend is that I

listened to my gut and took him in to the MD to check for strep and a sinus

infection and he ended up having pneumonia! I'm calling it " running around "

pneumonia instead of " walking pneumonia " because you would have never known he

was that sick. Anyways, he was put on a strong antibiotic and he told me this

afternoon that he's already feeling less stressed about everything, after just 3

days! Can you say PANDAS? This just really confirms for me that, most likely,

the onset of his symptoms is infection-related and that his ADHD-like symptoms

are indeed related to the Zoloft. He had been on Prozac four years a go for a

very brief time -- total disinhibition. So I think we can rule that out and, if

need be, try another SSRI, but not until after we see what 2 weeks of

antibiotics might bring us. I have to say I'm unbelievably relieved.

I am also realizing what a " mild " case of OCD we've had to deal with thus far in

comparison to SO many other people's challenges.

Thanks for listening! Maureen

Re: New Member

Hi again Maureen!

Wanted to comment/compare on some things you wrote.

" He has terrible thoughts of what a horrible person he is and,

because is so quiet and thoughtful, most people have no idea what's

going on in his head. "

A little over a year ago, my son (now 18) had his OCD return with bad

thoughts & scrupulosity issues. He is also the quiet and thoughtful

type. I've always said that I've never met a nicer person than

. Of course he hates that comment since he's such a " terrible

person " with these bad thoughts and mean thoughts about others and

such a sinner.... He won't relate the " particulars " of most of his

thoughts to me. His other problem with scrupe is all these

promises/vows he made to God dating all the way back to elementary

school apparently (and this bout of OCD all began in 11th grade so

now, of course, those promises way back then apparently " count " ! or

he had forgotten them until now or something).

Now 's OCD, the disorder, began right after he began 6th

grade. Also seemed to be abrupt in its onset. But no recent illness

at the time that I knew of. He had his OC tendencies at younger ages

but nothing that was a problem, disrupting, etc. Suddenly in 6th

grade he had compulsions all day! -- The return of his OCD in 11th

grade - well, it was never really " gone " but very much in the

background - came after quite a few months of being on no

medication. He quit his Celexa at the end of 10th grade, felt he

could handle OCD on his own! He doesn't want to try medication

again, sigh!

Regarding your son's medication - I think that I would also be

hesitant or wondering about adding another medication and one that is

for ADHD. Just seems to me that he couldn't handle the higher dose

of Zoloft. His body just may not have " settled back down " yet from

the higher dosage. Have you tried other SSRI medications yet or is

Zoloft the first? -- And did he begin that just recently?

I ask as so many parents (not me luckily) have had to trial more than

one SSRI to find one that worked for their child. And some had

similar bad reactions like your son but, say, the 3rd or 4th SSRI

tried was *the* one that worked and worked wonders! So...I'm

thinking why would the doctor treat for ADHD if those symptoms

weren't present before the Zoloft increase?? (if I understood that

correctly) I know doctors often add a 2nd medication to the SSRI to

help the effect of the SSRI though. (for your's and others' info,

here's one article:

http://www.homestead.com/westsuffolkpsych/OCDmeds.html

Of course I'm certainly no doctor, just another parent.

Sorry if I rambled a bit, I'm bad about that, LOL!

[Guest guest]

Jill- As I wrote to , L's reaction to the antibiotic's is already

evident. He is on an antibiotic that is even stronger than the one for the

pneumonia in the fall, just as a precaution. I'm very happy with the results

thus far but I know that it's only been a few days and that this is just one

little part of the OCD puzzle. I do believe we've been looking at PANDAS all

along; L's OCD fits the criteria perfectly. We'll see how it goes from here but

I'm very hopeful. Thanks--

Maureen

Re: New Member

Maureen, sorry that he has pneumonia again, the poor kid! Just an FYI, my

daughter's throat culture was negative and the strep panel showed her titers to

be within the normal range. However, both the pediatrician and the psychiatrist

said that since we don't have a baseline titer number before the OCD, we don't

know what is " normal " for and therefore the numbers may have been

elevated for her. Luckily, we're all in agreement that the numbers don't matter

because she fits PANDAS in every other way and responds to treatment with

antibiotics. Your son has probably been on some pretty strong antibiotics to

treat the pneumonia, he just may need a longer course to treat the OCD (if it is

in fact PANDAS). As you will read in many posts, most kid's OCD gets worse when

they're sick. i think their immune systems are so busy fighting whatever illness

they might have that there's not much left over to fight the OCD so there are

flare-ups.

Good luck, keep pushing and keep us posted. Jill

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

Don't get soaked. Take a quick peak at the forecast

with the Search weather shortcut.

[Guest guest]

Hi

My son, Evan goes to Dr. in Erie. He was diagnosed at 3m old and is

now in his seventh cast! You can read his story on www.infantilescoliosis.org.

Good luck with Ethan and keep us informed on how he does in April.

Feel free to ask any questions you have, it's best to arm yourself with

everything you can before your first appointment. You're in good hands w/Dr.

. Feel free to email me anytime.

and Evan-18m

blwaldrep wrote:

I just wanted to introduce myself. My name is , mother of 3,

from

Gainesville GA. a-8, Chastain-5, and Ethan-9m. Chastain has down

syndrome and Ethan has infantile scoliosis.

In Dec. Ethan's 1st xray measured the curve at 25 degrees and most

recent x-ray (2/28/07) measured at 50 degrees. We were referred to Dr.

Khoury by our local Ortho from Children's Heathcare of Atlanta. He had

been to conferences and such with Dr. Khoury. We also were told of Dr.

Khoury's leaving (to Alabama). And that his patients could follow if

they wanted to. Ethan's appointment is with Dr. for his 1st

cast on April 10. I'm nervous, but your site has helped alot. Very

Informative!! The pics of the casting table at Erie were awesome. Thank

You So, So Much!

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

8:00? 8:25? 8:40? Find a flick in no time

with the Search movie showtime shortcut.

[Guest guest]

You Are Not 6 Feet Under So No Honey Its Not To Late.

I WILL EMAIL MORE LATER. LOVE d

--- Hepatitis CSupportGroupForDummies

<martamendez57@...> wrote:

> Hello Everyone:

> My name is Marta and I live in St. sburg, FL.

> I was diagnosed on a fluke in 1996, a biopsy gone

bad.

> During a biopsy of my kidney, the doctor mistakenly

took a piece of

> my liver. Under testing procedures, the HepC was

found.

> A shocker because I always thought diseases like

this only happened

> to IV drug users. Goodness, was I wrong!

> How do you cope with the fatigue (actually constant

exhaustion),

> depression, most of all, the ITCHING! Its driving me

crazy.

> I am presently on Hydroxyzine and Setraline for this

and it works

> temporarily, but the side effects enhance my

fatigue. I sleep so

> much I miss most of the day.

> I was on " the treatment " . At the end of my course

of treatment,

> there was minimal change. I don't wish to go

through that experience

> again. And anyway, it may be too late for me.

> Only my family and a few friends know I have HepC.

> I was to be married the year I was diagnosed but

didn't go thru with

> it and never told him why. I have been alone ever

since, afraid to

> share my secret with anyone. Only recently do I

have this feeling of

> loneliness that at times its overwhelming. I don't

necessarily miss

> the sexual intimacy, but the closeness, hugging,

touching, caressing,

> and all those lovely feelings you get when you have

that special

> person. How do you tell a person you profess to

care about that you

> have HepC, when sometimes doctors are afraid to

treat you for

> anything for fear of contracting this death

sentence?

> Do you know how dirty it makes me feel when

medical/dental

> professionals treat me in such a fashion? Its gotten

to a point where

> I don't tell my condition unless absolutely

necessary. I have even

> gone to the extreme to avoid going to doctors

altogether because I

> don't want to face the humiliation again and again.

> I have so much more to share with all of you.

> Thank you for your time

> Marta

>

>

>

________________________________________________________________________________\

____

Sucker-punch spam with award-winning protection.

Try the free Beta.

http://advision.webevents./mailbeta/features_spam.html

[Guest guest]

Hello Marta, I'm SuZie from Thunder Bay, Ontario, Canada, diagnosed HCV+ since 1990 but I've had it since probably the late '60s. My doctor had me on cholestramine for the itchies but they come & go. What's worse is the fatigue. I had to go on disability because my sleeping patterns changed so much I could never haul my butt out of bed with enough consistency to keep a job - I got fired from my last job for "persistent & habitual tardiness" I've been on tx(treatment) twice with no response & was going to try again when my doctor said no 'cause I'm now in ESLD(end stage liver disease) also known as decompensated cirrhosis & tx could make things worse not better. All of my family & most of my friends know about I have Hep C. I feel it's important to educate people, yes doctors too, about this disease. There is too much ignorance about HCV so I tell everyone who has anything to do with my blood. It's worth the occasional bad reaction. Please don't avoid medical professionals just because of a few ignoramuses, you need to keep yourself healthy while you wait for a new tx. What has your doctor told you about your present status? What genotype, viral load etc? Have you had a liver biopsy? Anything you want to know, just ask. That's what we're here for. SuZieMarta Mendez <martamendez57@...> wrote: Hello Everyone:My name is Marta and I live in St. sburg, FL.I was diagnosed on a fluke in 1996, a biopsy gone bad.During a biopsy of my kidney, the doctor mistakenly took a piece of my liver. Under testing procedures, the HepC was found.A shocker because I always thought diseases like this only happened to IV drug users. Goodness, was I wrong!How do you cope with the fatigue (actually constant exhaustion), depression, most of all, the ITCHING! Its driving me crazy.I am presently on Hydroxyzine and Setraline for this and it works

temporarily, but the side effects enhance my fatigue. I sleep so much I miss most of the day.I was on "the treatment". At the end of my course of treatment, there was minimal change. I don't wish to go through that experience again. And anyway, it may be too late for me.Only my family and a few friends know I have HepC.I was to be married the year I was diagnosed but didn't go thru with it and never told him why. I have been alone ever since, afraid to share my secret with anyone. Only recently do I have this feeling of loneliness that at times its overwhelming. I don't necessarily miss the sexual intimacy, but the closeness, hugging, touching, caressing, and all those lovely feelings you get when you have that special person. How do you tell a person you profess to care about that you have HepC, when sometimes doctors are afraid to treat you for anything for fear of contracting this death sentence?Do you know

how dirty it makes me feel when medical/dental professionals treat me in such a fashion? Its gotten to a point where I don't tell my condition unless absolutely necessary. I have even gone to the extreme to avoid going to doctors altogether because I don't want to face the humiliation again and again.I have so much more to share with all of you. Thank you for your timeMarta

Next time I'm coming back as a cat

[Guest guest]

Welcome, Betsy! I'm rather new, too, so no wisdom here! We are in

a testing phase for mbl deficiency. One child is missing this

protein. We'll find out about the rest of us in about two to three

weeks.

Peace,

momma to Ramsey 5/05, 8/01, Collin 7/99, Cassidy 5/97, and my

little saint in heaven Kaden + Aug. 1994 - May 2005 +

>

> Hi,

> I am a new member here. This is the info I sent to the moderator

on

> my application:

>

> My 3 yr old son, Sam, is in the middle of testing for a PID. We

live

> Texas. He is seeing an allergist/immunologist at a major

children's

> hospital. He has been sick since he was 7 days old - nothing too

> major but tons of viruses and ear/sinus/throat infections. He had

his

> tonsils out last fall. He has had mono and mollescum. He has had

> numerous diaper rashes. He has eczema and many food allergies. He

was

> diagnosed with allergic colitis at 5 months of age. He has chronic

> diarrhea. He had a very high fever with the MMR vaccination (108

F).

> He is ALWAYS sick. I tracked all illnesses for 3 months for the

> doctor and he had 12 in those 3 months. I also have food allergies

> and an autoimmune disease (sjogren's syndrome). I get sick a lot

too.

> My older son has a metabolic disorder and some of the kids also

have

> PID's that seem related.

> The immunologist has not been communicating very well with me so I

am

> feeling confused and in the dark. So far, we know Sam did not

react

> to the candida skin test. He also did not show titers to previous

> immunizations. His lymphocytes (?sp) were also off and have been

> redrawn. At the last appointment they took 7 vials of blood and

said

> they were looking at the lymphocytes again. He was given the

> pneunovax (?sp) vaccine and will be tested for titers in 4 weeks

and

> then we go back a few weeks after that for another consultation.

He

> did not have antibodies to it from receiving it previously.

> The doc is saying that there could be nothing wrong with Sam. That

> some typical kids test in this way. She also said that 12

illnesses

> in 3 months is not that unusual - I disagree. I am really careful

> about his exposure because of my older son who has the metabolic

> disorder. Sam is in a little preschool. There are 9 other kids and

> the teachers are super careful about washing hands and toys. I

also

> do not take him places that are germ pits and we are excellent

about

> hand washing at home. She says if it is anything it may be

> a " specific deficiency that most doctors don't consider a disorder

> anyway and we would just watch infections closely and give him

> antibiotics when he is sick " . I am frustrated with the lack of

> communication. I called a week ago to change doctors and get the

lab

> work results that are back and have not heard back from them yet.

I

> am ready for a second opinion!!!

>

>

>

>

> Today I talked to the fellow at the clinic, he was more helpful

and

> said that Sam had not developed antibodies to his vaccinations -

he

> asked me twice if he had been immunized. He does not think it is

a

> specific antibody deficiency but something like CVID. Now I am

> really confused. The office is sending me all the lab work and we

go

> back for the lab draw on the 30th and to see the doc on April

17th.

> I could not get him in to another doc until 9-25! so I am waiting

on

> that for now.

>

>

> Any advice or thoughts on what is going on so far?

>

> I am looking forward to getting to know you all!

>

> Thanks,

> Betsy

> Mom to Henry and Sam

>

[Guest guest]

> Today I talked to the fellow at the clinic, he was more helpful and

> said that Sam had not developed antibodies to his vaccinations - he

> asked me twice if he had been immunized. He does not think it is a

> specific antibody deficiency but something like CVID. Now I am

> really confused.

The office is sending me all the lab work and we go

> back for the lab draw on the 30th and to see the doc on April 17th.

Betsy, sounds like you are in the right place to get some answers. Sam

is definitely dealing with a Primary Immune Deficiency. When a child

doesn't build titers to his vaccinations -- something is wrong with the

B-cells.

Now, what I've found with immunologist is that as a group they are

pretty closed-mouthed until they finish all the testing. That drives

parents crazy! I had a list of 5,000 questions and I couldn't get a

single one of them answered until they had drawn blood twice and made me

wait for answers. I thought I would go insane waiting. After the first

one, my pediatrician told me " We think it's an immune deficiency, but we

need to re-test in 6 months to be sure. But don't go researching that,

because it's pretty scary stuff and you'll just worry. " You are darn

tooting I was worried. I read everything I could get my hands on. So,

when the diagnosis was given, I already knew what we were up against.

I believe that you are in the right place to get that information and

prepare yourself for whatever diagnosis this turns out to be. There's

not a whole lot of difference between a specific antibody defiicency and

CVID. The only difference is that generally a " specific antibody

deficiency means you are missing one Immunoglobulin, whereas CVID

generally means that you are missing two or more. But missing is

missing. If Sam is not building antibodies -- something is definitely

missing. Your immunologist may be trying to pin down exactly what is

going on -- the immune system is very complicated and it makes a lot of

difference whether it's B-cells or T-cells that are not working. It

makes a whole world of difference whether you have a little IgA or no

IgA. All of those details make a difference in the diagnosis and

prognosis for Sam. Your immunologist may just be one of those guys that

doesn't like to give out information until he's got it all figured out.

So, if I were you I would wait until mid April and find out what

he/she has to say.

If at that time, what he has to say, doesn't add up to what you've

learned so far by your research, I would look for a second opinion.

More than likely, once the Immunologist completes his testing, he will

make recommendations for Sam to start therapy -- either IVIG or SCIG.

Like I made the suggestion to our other newest member, I highly

recommend that you contact the Immune Deficiency Foundation at

1-800-296-4433 and ask for their Patient and Family Handbook so that you

can start learning about the different PIDs and possible therapy options.

Best wishes. Really, really, the diagnosis phase is the hardest. Once

you get the diagnosis -- the treatment takes some getting used to, but

then you start moving into find a new normal that's generally pretty

livable! My daughter was 11 when she became suddenly ill and never

got better. She was just piggy-backing one infection on top of another

continuously. She was bedfast for about 6 months before we finally got

the diagnosis. She was finally diagnosed with CVID at the age of 13 and

started IVIG. It took several years for her to regain her strength, but

she managed to graduate with her peers and went to college, took

Cardiokickboxing in college and partied and played just like all the

other college kids (maybe too much!). In other words, she went ahead

with her life. She's married now and doing great.

Hope that encourages you some,

In His service,

dale

[Guest guest]

Thank you so much Dale! What you wrote makes me feel so much better! I am very

impatient and have worried that this child git sick too easily since he was tiny

and the doc always said he was just " one of those kids " . His neurologist (he

has migraines - started at 17 months) referred him to the immunologist b/c every

time she saw him or talked to me he was sick. We saw the pedi today - he is

sick with a virus we think- and she basically said what you said - there is

definitely a problem if he is not making titers to his antibodies. I feel

better that I am on this list and feel connected! Thanks so much!!!

Betsy

Dale Weatherford <dale@...> wrote:

> Today I talked to the fellow at the clinic, he was more helpful and

> said that Sam had not developed antibodies to his vaccinations - he

> asked me twice if he had been immunized. He does not think it is a

> specific antibody deficiency but something like CVID. Now I am

> really confused.

The office is sending me all the lab work and we go

> back for the lab draw on the 30th and to see the doc on April 17th.

Betsy, sounds like you are in the right place to get some answers. Sam

is definitely dealing with a Primary Immune Deficiency. When a child

doesn't build titers to his vaccinations -- something is wrong with the

B-cells.

Now, what I've found with immunologist is that as a group they are

pretty closed-mouthed until they finish all the testing. That drives

parents crazy! I had a list of 5,000 questions and I couldn't get a

single one of them answered until they had drawn blood twice and made me

wait for answers. I thought I would go insane waiting. After the first

one, my pediatrician told me " We think it's an immune deficiency, but we

need to re-test in 6 months to be sure. But don't go researching that,

because it's pretty scary stuff and you'll just worry. " You are darn

tooting I was worried. I read everything I could get my hands on. So,

when the diagnosis was given, I already knew what we were up against.

I believe that you are in the right place to get that information and

prepare yourself for whatever diagnosis this turns out to be. There's

not a whole lot of difference between a specific antibody defiicency and

CVID. The only difference is that generally a " specific antibody

deficiency means you are missing one Immunoglobulin, whereas CVID

generally means that you are missing two or more. But missing is

missing. If Sam is not building antibodies -- something is definitely

missing. Your immunologist may be trying to pin down exactly what is

going on -- the immune system is very complicated and it makes a lot of

difference whether it's B-cells or T-cells that are not working. It

makes a whole world of difference whether you have a little IgA or no

IgA. All of those details make a difference in the diagnosis and

prognosis for Sam. Your immunologist may just be one of those guys that

doesn't like to give out information until he's got it all figured out.

So, if I were you I would wait until mid April and find out what

he/she has to say.

If at that time, what he has to say, doesn't add up to what you've

learned so far by your research, I would look for a second opinion.

More than likely, once the Immunologist completes his testing, he will

make recommendations for Sam to start therapy -- either IVIG or SCIG.

Like I made the suggestion to our other newest member, I highly

recommend that you contact the Immune Deficiency Foundation at

1-800-296-4433 and ask for their Patient and Family Handbook so that you

can start learning about the different PIDs and possible therapy options.

Best wishes. Really, really, the diagnosis phase is the hardest. Once

you get the diagnosis -- the treatment takes some getting used to, but

then you start moving into find a new normal that's generally pretty

livable! My daughter was 11 when she became suddenly ill and never

got better. She was just piggy-backing one infection on top of another

continuously. She was bedfast for about 6 months before we finally got

the diagnosis. She was finally diagnosed with CVID at the age of 13 and

started IVIG. It took several years for her to regain her strength, but

she managed to graduate with her peers and went to college, took

Cardiokickboxing in college and partied and played just like all the

other college kids (maybe too much!). In other words, she went ahead

with her life. She's married now and doing great.

Hope that encourages you some,

In His service,

dale