Re: I REALLY NEED SOME ADVICE...

[Guest guest]

> What do I do now? I am so upset and want to make sure I am very well

> armed with info before taking the baby into our current immuno and

> talking this all over with him. Please, any info that you all can

> share would be gratefully appreciated.

>

Melody, I don't know that there is any greater potential that you could

have two immune deficient kids than that you have two THI kids. We know

that both can be random -- not heriditary, but that both can also be

familial -- meaning it runs in families. We don't have all the answers

yet. Someday we will -- there's lots of research going on right now!

All we know is that CVID -- which is the category where your boys would

fall since they are low in IgG and one other (either IgA or IgM)-- is

genetic even though we haven't found the gene.

I will repeat what I said earlier to another post. THI is just that --

if it has not resolved or is in the process of resolving by age 2 --

there's something wrong! And there's something seriously wrong when a

child's clinical picture is terrible and no one is starting treatment

when there is an obvious diagnosis of CVID. Even if the diagnosis is

THI -- if a child is in clinical distress -- meaning continuing to have

infections that could result in scarring and permanent damage -- he/she

should be treated for the underlying problem -- not just " watched " to

see if damage occurs!!!!!!!

When a child does not have enough IgG to produce antibodies for the

vaccinations he/she has recieved -- and prophylactic antibiotics are not

keeping the clinical picture stable (meaning not preventing infections

that could produce scarring of the sinuses, gut or lungs OR not able to

relieve the constant/recurring infections) then action needs to be taken.

You asked for advice, I would seriously consider letting the ID doctor

talk to you about his recommendations for treatment before returning to

an immunologist who is not content to " wait and see " when your boys have

such serious problems.

That's my $.02 worth.

Hope it helps,

In His service,

dale

[Guest guest]

" ...inpatient recently for an MRSA infection...tentatively dx him with transient

hypogam...' titers not being drawn or checked for 18 mos despite me

asking and my other son 's ongoing illness issues...since Oct when he hit

6 mos...He offered to test them both for titers and Ig levels...My older son is

still low...my younger son ...is 13 mos old and numbers came back as:

IGG=305 (453-916); IGA=17 (20-100); IGM=28 (19-146); IGE <2..I am not sure how

much I trust our immuno after this last hospitalization...how likely is it that

we could have 2 kiddos in the same family with transient...What do I do now? "

Hi, Melody.

It's here, again. I am so sorry that you have been going in circles

for the last year and, as a parent, it is your job to try to end this cycle. If

your kids are suffering the way you describe, they are not getting proper

medical care. I suppose this is why you are writing for help. Yes?

Just a few questions and thoughts...

If Dr. Miles is testing levels and function (finally) then does this mean that

you are trying to work with him rather than finding another immuno?

How do you feel about IVIG?

How do you feel about the ID doc? Will the GI doc go to bat for you? I know

he was written off by your immuno in the past and, I think, you said the GI

thought it was hypogam.

If your boys need IVIG than the ID and GI doc should demand that their patient

(your sons) are taken care of. Dr. Miles may come around and do something --

given the new round of bloodwork/clinical info if it is crystal clear. You can

help by making sure all of the laboratory results and illnesses are documented.

Put your problem list under his nose. Written (even informal emails) can be

very powerful.

But, if he still does not work with you, can you get the GI and ID doc to go

to bat for you ASAP?

When the numbers are this low and the children are suffering from these type

of infections, it is hard to imagine that the decision for IgG replacement

should be postponed indefinitely. I'm not sure how a child can successfully

overcome a serious infection with IgG 304 -- even if function is there. The

fact that BOTH of your kids have low numbers, chronic infections, and what

appear to be immune driven " syndromes " is a big red flag for CVID. But, only

time will tell. I hope that, for the time being, you can get your kids

appropriate treatment.

If I was in your shoes, knowing what I know now, I would push for QUICK

testing and IVIG. Get all of the needed tests done and freeze some blood (if

possible) before starting any treatment.

You mentioned the possibility of another underlying disease. Anything is

possible but it is hard to imagine searching for new reasons for all of the

infections when the primary issue has not been addressed -- your kids may have

hypogam. Regardless of whether it is transient or not, it needs to be dealt

with.

Sorry to throw some many questions back your way. But, it seems like you need

more help and there are some real professionals in reach that can do something.

It is our job as parents to assert ourselves when our kids are sick. If not,

the doc will assume that you are managing just fine.

Go forth!

mom to CVIDer

[Guest guest]

In a message dated 8/30/2006 11:36:42 A.M. Eastern Standard Time,

pba1221d@... writes:

Can

anybody PLEASE give me some advice who may already have experience.

I am just SO very much dying inside to have my boy back to himself

and I will do anything I can to help.

Dana -

I got tears in my eyes when I read that statement in your email.

Definitely keep up the search for someone who can help with therapy - ask

about ERP not just CBT.

As generous as the offer the school made sounds ( I've never heard of a

school offering to give lesson plans, etc., like yours did - at least it's a

good

sign that they truly are committed to working with you in any way they can

to help your son) BUT, I have to think that your gut feeling is correct,

especially if he's already showing some separation anxiety at this point. I

would have to think that keeping him at home (even though he would know it's

just

temporarily) is just going to make that worse.

It's hard to accept sometimes that the best way to help your child for the

long haul is actually going to cause them more suffering right now. There may

be a point when it is best to pull him out - that's a decision that needs to

be based on the individual circumstance, child involved, and probably best

made with some professional input.

I hope you find a therapist soon.

LT

[Guest guest]

Because of the huge problem of bullying our school committee formed a sub

committee to study the issue and came up with an anti bullying policy that

applies to all grades, school bus, any where on school property. This policy

was voted on by the school committee and was unanimously approved. We have seen

a huge improvement with children's behaviors. We have also brought in guest

speaker like author of Odd Girl Out to do a workshop with the

kids to see how they might be deliberately or unknowingly hurting others, the

kids were amazed at what they felt and learned. You might want to ask the

superintendent about looking into something like this for your district. Making

an antibullying policy gives the principle and the teachers and the bus drivers

muscle. Kathy

Adele Mahan <adelem@...> wrote:

Dana,

I am writing to you at 11:30 after just picking my son up from school due to

not feeling well. I totally understand where you are coming from and feel

your pain. I wish I had the answers but I don't as I am trying to figure it

all out myself. My son has a added burden like many others that the boys on

the bus are calling him mommas boy, baby, etc. Our therapist wanted us to

keep him on the bus and learn how to deal with all this, my gut feeling is

that it is just too much. Right now I think I need to do anyting to just get

him in school and keep him there. Anyway, know that there are many here that

are struggling the same. Your child is not alone and neither are you.

Keep me posted and hopefully we can all together come up with the solutions.

DP

_____

From:

[mailto: ] On Behalf Of Dana

Sent: Wednesday, August 30, 2006 11:31 AM

Subject: I REALLY NEED SOME ADVICE...

I need some advice from people who understand. My son, age 12, and

has OCD (strep-related or not..who knows???) he is on Zoloft

100mg. He has been on 100mg for just two days, but on Zoloft for

one month.

His obsession is the stomach flu. He is afraid that he is going to

get it. He wonders if others have it. He has gotten better with

the repetitive questions asking me about it, but he still does a few

times a day.

Here is my problem...please if anyone could advise. He started a

different school this year of his own choosing. He seems to like

the school, the teacher's are very supportive and so is the office

staff.

He started last Wednesday and almost every day I have had to go in

and take him home early. He gets himself SO worked up. One day a

girl vomitted in his class, and another day one of the kids said

they didn't feel well. Today, the vice principal asked me if I

thought it would be beneficial for him to stay home and just have

the teachers write me a lesson plan and do it that way until the

Zoloft really kicks in well. I had to go pick him up today from

school by the way.

He has ALOT of seperation stuff right now with me and I'm not sure

letting him stay home is a good thing. I think that he should go

and try to make it through the days. Am I wrong? Does it seem like

he should try to continue going to school?? This has been a

nightmare. I am right now trying to find him a

counselor/phychologist that treat OCD and specialize in CBT. Can

anybody PLEASE give me some advice who may already have experience.

I am just SO very much dying inside to have my boy back to himself

and I will do anything I can to help. Thanks for any who answer.

Dana

[Guest guest]

The bus!! What is the goal here....getting your child to successfully ride the

bus or be in a positive frame of mind, make it through the school day, and

learn? Perhaps the bus might be too much.

" In order to move forward...

you need to know where you are going. " (Lori Rilat)

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

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

[Guest guest]

No way, I would keep him in school. You said almost every day ... so there are

some days you have not had to go in?

Have you seen improvement on the 100 mg Zoloft and how long do the doctors say

it will take to tell?

Could he have a place at school to go when things get bad ... a safe place ...

the nurse, a counselor, etc.

My TOP PRIORITY would be to get that psychologist. Every one I talk to, I

would make an appointment with - keep track of everything, and then just cancel

the ones you decide not to use. If you try to call back later, it will be even

longer until you get the appointment. Explain to the office staff you would

like for them to call you back (all of mine have) and see who you feel most

comfortable with - who you think would be able to help your son the most. I was

not able to find one in my area who did ERT, but I felt comfortable in that she

said if she felt like it got to that point, she would be very honest and say my

son needed more.

Good Luck!

Dana <pba1221d@...> wrote:

I need some advice from people who understand. My son, age 12, and

has OCD (strep-related or not..who knows???) he is on Zoloft

100mg. He has been on 100mg for just two days, but on Zoloft for

one month.

His obsession is the stomach flu. He is afraid that he is going to

get it. He wonders if others have it. He has gotten better with

the repetitive questions asking me about it, but he still does a few

times a day.

Here is my problem...please if anyone could advise. He started a

different school this year of his own choosing. He seems to like

the school, the teacher's are very supportive and so is the office

staff.

He started last Wednesday and almost every day I have had to go in

and take him home early. He gets himself SO worked up. One day a

girl vomitted in his class, and another day one of the kids said

they didn't feel well. Today, the vice principal asked me if I

thought it would be beneficial for him to stay home and just have

the teachers write me a lesson plan and do it that way until the

Zoloft really kicks in well. I had to go pick him up today from

school by the way.

He has ALOT of seperation stuff right now with me and I'm not sure

letting him stay home is a good thing. I think that he should go

and try to make it through the days. Am I wrong? Does it seem like

he should try to continue going to school?? This has been a

nightmare. I am right now trying to find him a

counselor/phychologist that treat OCD and specialize in CBT. Can

anybody PLEASE give me some advice who may already have experience.

I am just SO very much dying inside to have my boy back to himself

and I will do anything I can to help. Thanks for any who answer.

Dana

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

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

[Guest guest]

I totally agree, thanks!

_____

From:

[mailto: ] On Behalf Of Lori Rilat

Sent: Wednesday, August 30, 2006 12:04 PM

Subject: RE: I REALLY NEED SOME ADVICE...

The bus!! What is the goal here....getting your child to successfully ride

the bus or be in a positive frame of mind, make it through the school day,

and learn? Perhaps the bus might be too much.

" In order to move forward...

you need to know where you are going. " (Lori Rilat)

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

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

[Guest guest]

I agree with everything Lori has said. I have been through this many times with

my daughter, and my son.. As hard as it is, try and keep your child at school.

If after a period of time he's not doing well, than you may want to reconsider,

but if he knows your going to come get him, it will be more and more difficult

each day.

I was letting my daughter stay home from school in 3rd grade due to her ocd,

and after just 3 days I literally had to drag her out of bed, dress her, and

drive her screaming her head off to school. It seems like if you give an inch

and they take a mile. Also, the schools don't want to deal with anything, so

naturally they want you to come get him.

Hang in there

Hugs

Judy

[Guest guest]

I agree with everything Lori has said. I have been through this many times with

my daughter, and my son.. As hard as it is, try and keep your child at school.

If after a period of time he's not doing well, than you may want to reconsider,

but if he knows your going to come get him, it will be more and more difficult

each day.

I was letting my daughter stay home from school in 3rd grade due to her ocd,

and after just 3 days I literally had to drag her out of bed, dress her, and

drive her screaming her head off to school. It seems like if you give an inch

and they take a mile. Also, the schools don't want to deal with anything, so

naturally they want you to come get him.

Hang in there

Hugs

Judy

[Guest guest]

I haven't been through this but had to say my heart goes out to you -

and my gut says keep him there too and find a therapist asap

hang in :-)

Quoting Dana <pba1221d@...>:

> I need some advice from people who understand. My son, age 12, and

> has OCD (strep-related or not..who knows???) he is on Zoloft

> 100mg. He has been on 100mg for just two days, but on Zoloft for

> one month.

>

> His obsession is the stomach flu. He is afraid that he is going to

> get it. He wonders if others have it. He has gotten better with

> the repetitive questions asking me about it, but he still does a few

> times a day.

>

> Here is my problem...please if anyone could advise. He started a

> different school this year of his own choosing. He seems to like

> the school, the teacher's are very supportive and so is the office

> staff.

>

> He started last Wednesday and almost every day I have had to go in

> and take him home early. He gets himself SO worked up. One day a

> girl vomitted in his class, and another day one of the kids said

> they didn't feel well. Today, the vice principal asked me if I

> thought it would be beneficial for him to stay home and just have

> the teachers write me a lesson plan and do it that way until the

> Zoloft really kicks in well. I had to go pick him up today from

> school by the way.

>

> He has ALOT of seperation stuff right now with me and I'm not sure

> letting him stay home is a good thing. I think that he should go

> and try to make it through the days. Am I wrong? Does it seem like

> he should try to continue going to school?? This has been a

> nightmare. I am right now trying to find him a

> counselor/phychologist that treat OCD and specialize in CBT. Can

> anybody PLEASE give me some advice who may already have experience.

> I am just SO very much dying inside to have my boy back to himself

> and I will do anything I can to help. Thanks for any who answer.

>

> Dana

>

>

>

>

>

[Guest guest]

I haven't been through this but had to say my heart goes out to you -

and my gut says keep him there too and find a therapist asap

hang in :-)

Quoting Dana <pba1221d@...>:

> I need some advice from people who understand. My son, age 12, and

> has OCD (strep-related or not..who knows???) he is on Zoloft

> 100mg. He has been on 100mg for just two days, but on Zoloft for

> one month.

>

> His obsession is the stomach flu. He is afraid that he is going to

> get it. He wonders if others have it. He has gotten better with

> the repetitive questions asking me about it, but he still does a few

> times a day.

>

> Here is my problem...please if anyone could advise. He started a

> different school this year of his own choosing. He seems to like

> the school, the teacher's are very supportive and so is the office

> staff.

>

> He started last Wednesday and almost every day I have had to go in

> and take him home early. He gets himself SO worked up. One day a

> girl vomitted in his class, and another day one of the kids said

> they didn't feel well. Today, the vice principal asked me if I

> thought it would be beneficial for him to stay home and just have

> the teachers write me a lesson plan and do it that way until the

> Zoloft really kicks in well. I had to go pick him up today from

> school by the way.

>

> He has ALOT of seperation stuff right now with me and I'm not sure

> letting him stay home is a good thing. I think that he should go

> and try to make it through the days. Am I wrong? Does it seem like

> he should try to continue going to school?? This has been a

> nightmare. I am right now trying to find him a

> counselor/phychologist that treat OCD and specialize in CBT. Can

> anybody PLEASE give me some advice who may already have experience.

> I am just SO very much dying inside to have my boy back to himself

> and I will do anything I can to help. Thanks for any who answer.

>

> Dana

>

>

>

>

>

[Guest guest]

Dana,

My son's (14) problem tends to be germs/vomiting also.

I don't know if you have read up on CBT but maybe you

could do a little therapy on your own while waiting

for a therapist.

One possible session that comes to my mind:

(It's all about facing fears and learning you'll

survive)

FIRST: make sure you have a totally non-judgemental

attitude inside yourself before bringing up the idea

of doing a little therapy but be firm that you'all are

going to give it a try.

Then:

1) say we're going to try a little exposure therapy

(to beat back the %#*^%@ & $!()()^$#@ & *^ that is OCD)

2) hand him things out of a box that you say might

have germs on them ( if he's really anxious tell him

it's just pretend germs for now--but that he needs to

try to tell himself they are germy in order to cause

anxiety.)

3) do this every day several times a day until it's

getting easier. If pretending makes it too easy

then tell him they really are germy. Use humor at

times as it releases tension but not all the time cuz

you're trying to create anxiety. Maybe eventually

tell him you gathered the things off the playground at

school.

5) try to have him delay or resist any ritual (like

handwashing or any thing else he might be doing to

decrease his anxiety during these exposures and

immediately after.

6) just aim at a little progress each time.

7) praise all successes AND serious attempts.

Not knowing more about your sit. -- can only hope this

helps a little. Do you need any book recommendation

about CBT?

Exposure therapy (with lots of humor) worked magic

with my son (so far--fingers crossed)

Lynn

--- Dana <pba1221d@...> wrote:

> I need some advice from people who understand. My

> son, age 12, and

> has OCD (strep-related or not..who knows???) he is

> on Zoloft

> 100mg. He has been on 100mg for just two days, but

> on Zoloft for

> one month.

>

> His obsession is the stomach flu. He is afraid that

> he is going to

> get it. He wonders if others have it. He has

> gotten better with

> the repetitive questions asking me about it, but he

> still does a few

> times a day.

>

> Here is my problem...please if anyone could advise.

> He started a

> different school this year of his own choosing. He

> seems to like

> the school, the teacher's are very supportive and so

> is the office

> staff.

>

> He started last Wednesday and almost every day I

> have had to go in

> and take him home early. He gets himself SO worked

> up. One day a

> girl vomitted in his class, and another day one of

> the kids said

> they didn't feel well. Today, the vice principal

> asked me if I

> thought it would be beneficial for him to stay home

> and just have

> the teachers write me a lesson plan and do it that

> way until the

> Zoloft really kicks in well. I had to go pick him

> up today from

> school by the way.

>

> He has ALOT of seperation stuff right now with me

> and I'm not sure

> letting him stay home is a good thing. I think that

> he should go

> and try to make it through the days. Am I wrong?

> Does it seem like

> he should try to continue going to school?? This

> has been a

> nightmare. I am right now trying to find him a

> counselor/phychologist that treat OCD and specialize

> in CBT. Can

> anybody PLEASE give me some advice who may already

> have experience.

> I am just SO very much dying inside to have my boy

> back to himself

> and I will do anything I can to help. Thanks for

> any who answer.

>

> Dana

>

>

>

>

>