update

[Guest guest]

Marcel, I'm so glad that things are working out so well! And GREAT

that she is actually getting excited herself about how well she's

doing and looking forward to showing the therapist!!! And I'm glad

you can get some rest now too!

> I wanted to give an update of what happened sins last week. We were

having a

> hard time with our oldest daughter bedtime routine. She thinks that

she

> urinate on everything. So at bed time it gets even worse. We had a

few night

> that we were up pretty much all night, and we were very tired

during the

> day. So we talked on Monday with the therapist and she said that we

need to

> hang in there. As long we are consistent with the plan this all

will get

> better in a few weeks. The therapist also told our daughter that

getting

> angry at us was not going to help her. To make a long story short,

That

> night our daughter went to sleep without our help, she slept

through the

> night and the next day she started to keep track of how she was

doing She

> went to the bathroom without wiping herself, she started to do her

exercises

> or homework. Last night she woke up at 2:00 o' clock, she got angry

yelled a

> while but calmed down after about 30 minutes. The next 30 min she

made some

> more charts and went to bed. So we are very excited, because she is

taking

> charge here to help her self. I know we still have to go a long

hard way,

> but it feels good to see glimpses of improvement. Last night she

went even

> to bed without wiping, what is very hard for her to do especially at

> bedtime. Today she is going to see her therapist again and she is

excited to

> show her all her charts. What seems like hell a week ago is now

clearing up

> slowly. So I thank you for all the help and support you have given

us and I

> thank the people who have talked to my wife to comfort her, but

most of all

> I thank GOD for giving us strength, patience, and endurance through

these

> hard times. So for the people who are just starting the therapy,

hang in

> there follow the plan and pray a lot.

>

>

>

[Guest guest]

Marcel--Wow-what progress in such a short time--

Suzy- WI

Marcel Rutten wrote:

> I wanted to give an update of what happened sins last week. We were

> having a

> hard time with our oldest daughter bedtime routine. She thinks that

> she

> urinate on everything. So at bed time it gets even worse. We had a few

> night

> that we were up pretty much all night, and we were very tired during

> the

> day. So we talked on Monday with the therapist and she said that we

> need to

> hang in there. As long we are consistent with the plan this all will

> get

> better in a few weeks. The therapist also told our daughter that

> getting

> angry at us was not going to help her. To make a long story short,

> That

> night our daughter went to sleep without our help, she slept through

> the

> night and the next day she started to keep track of how she was doing

> She

> went to the bathroom without wiping herself, she started to do her

> exercises

> or homework. Last night she woke up at 2:00 o' clock, she got angry

> yelled a

> while but calmed down after about 30 minutes. The next 30 min she made

> some

> more charts and went to bed. So we are very excited, because she is

> taking

> charge here to help her self. I know we still have to go a long hard

> way,

> but it feels good to see glimpses of improvement. Last night she went

> even

> to bed without wiping, what is very hard for her to do especially at

> bedtime. Today she is going to see her therapist again and she is

> excited to

> show her all her charts. What seems like hell a week ago is now

> clearing up

> slowly. So I thank you for all the help and support you have given us

> and I

> thank the people who have talked to my wife to comfort her, but most

> of all

> I thank GOD for giving us strength, patience, and endurance through

> these

> hard times. So for the people who are just starting the therapy, hang

> in

> there follow the plan and pray a lot.

>

>

>

[Guest guest]

Marcel--Wow-what progress in such a short time--

Suzy- WI

Marcel Rutten wrote:

> I wanted to give an update of what happened sins last week. We were

> having a

> hard time with our oldest daughter bedtime routine. She thinks that

> she

> urinate on everything. So at bed time it gets even worse. We had a few

> night

> that we were up pretty much all night, and we were very tired during

> the

> day. So we talked on Monday with the therapist and she said that we

> need to

> hang in there. As long we are consistent with the plan this all will

> get

> better in a few weeks. The therapist also told our daughter that

> getting

> angry at us was not going to help her. To make a long story short,

> That

> night our daughter went to sleep without our help, she slept through

> the

> night and the next day she started to keep track of how she was doing

> She

> went to the bathroom without wiping herself, she started to do her

> exercises

> or homework. Last night she woke up at 2:00 o' clock, she got angry

> yelled a

> while but calmed down after about 30 minutes. The next 30 min she made

> some

> more charts and went to bed. So we are very excited, because she is

> taking

> charge here to help her self. I know we still have to go a long hard

> way,

> but it feels good to see glimpses of improvement. Last night she went

> even

> to bed without wiping, what is very hard for her to do especially at

> bedtime. Today she is going to see her therapist again and she is

> excited to

> show her all her charts. What seems like hell a week ago is now

> clearing up

> slowly. So I thank you for all the help and support you have given us

> and I

> thank the people who have talked to my wife to comfort her, but most

> of all

> I thank GOD for giving us strength, patience, and endurance through

> these

> hard times. So for the people who are just starting the therapy, hang

> in

> there follow the plan and pray a lot.

>

>

>

[Guest guest]

You wrote: Today she is going to see her therapist

again and she is excited to

show her all her charts. What seems like hell a week

ago is now clearing up

slowly.

This update is great! Your daughter is taking charge

and though it is not easy she is proving it can be

done.

I think she is so mature to 'get' that being mad at

her parents isn't going to help. Sounds like you all

have a great working relationship with your therapist.

Vivian

__________________________________________________

[Guest guest]

You wrote: Today she is going to see her therapist

again and she is excited to

show her all her charts. What seems like hell a week

ago is now clearing up

slowly.

This update is great! Your daughter is taking charge

and though it is not easy she is proving it can be

done.

I think she is so mature to 'get' that being mad at

her parents isn't going to help. Sounds like you all

have a great working relationship with your therapist.

Vivian

__________________________________________________

[Guest guest]

Yes we had a good start there, but that only worked for 2 to 3 days. We are

still having problems with the night time to get here to calm down and to

put herself to sleep. And during the day she is constantly telling us her

worries. We ignore her when she is telling her worries, but because we are

not saying anything, she finds still comfort just telling us her worries

eventhough we do not answer her. She has been making progress with going to

the bathroom and brushing her teeth. She does not wipe at all after going

potty, and she is fine with that, but she is still worried that she is going

potty on everything. The interesting thing is also, that sins we started

therapy, her worries increased tremendous. She has so many different worries

and they are so bizarre, it is hard to believe that your mind can come up

with such bizarre worries. So we are going up and down and making slowly

progress. How long does CBT therapy takes before you see that your child is

enjoying the day again being able to manage the worries ????

> Re: Update

>

> You wrote: Today she is going to see her therapist

> again and she is excited to

> show her all her charts. What seems like hell a week

> ago is now clearing up

> slowly.

>

> This update is great! Your daughter is taking charge

> and though it is not easy she is proving it can be

> done.

> I think she is so mature to 'get' that being mad at

> her parents isn't going to help. Sounds like you all

> have a great working relationship with your therapist.

> Vivian

>

>

> __________________________________________________

>

[Guest guest]

Yes we had a good start there, but that only worked for 2 to 3 days. We are

still having problems with the night time to get here to calm down and to

put herself to sleep. And during the day she is constantly telling us her

worries. We ignore her when she is telling her worries, but because we are

not saying anything, she finds still comfort just telling us her worries

eventhough we do not answer her. She has been making progress with going to

the bathroom and brushing her teeth. She does not wipe at all after going

potty, and she is fine with that, but she is still worried that she is going

potty on everything. The interesting thing is also, that sins we started

therapy, her worries increased tremendous. She has so many different worries

and they are so bizarre, it is hard to believe that your mind can come up

with such bizarre worries. So we are going up and down and making slowly

progress. How long does CBT therapy takes before you see that your child is

enjoying the day again being able to manage the worries ????

> Re: Update

>

> You wrote: Today she is going to see her therapist

> again and she is excited to

> show her all her charts. What seems like hell a week

> ago is now clearing up

> slowly.

>

> This update is great! Your daughter is taking charge

> and though it is not easy she is proving it can be

> done.

> I think she is so mature to 'get' that being mad at

> her parents isn't going to help. Sounds like you all

> have a great working relationship with your therapist.

> Vivian

>

>

> __________________________________________________

>

[Guest guest]

Dear Marcel,

Two steps forward and one step back. It sounds like

things are challenging at your house. Keep

communicating with the therapist. Don't give up. Night

time can be rough when everyone is so tired anyway and

then you have to be patient at bedtime hoping and

praying for a quick settled down period.

How do you ignore her worries? I would talk to the

therapist about that and come up with a plan.

Good to see she is making progress on the

bathroom/teeth brushing. It is always great to see

some progress!

I was reading Aureens post to you about how CBT is 80%

effctive in helping with OCD. Isn't that amazing. What

a great tool to give your child. Hang in there.

Vivian

--- Marcel Rutten wrote:

> Yes we had a good start there, but that only worked

> for 2 to 3 days. We are

> still having problems with the night time to get

> here to calm down and to

> put herself to sleep. And during the day she is

> constantly telling us her

> worries. We ignore her when she is telling her

> worries, but because we are

> not saying anything, she finds still comfort just

> telling us her worries

> eventhough we do not answer her. She has been making

> progress with going to

> the bathroom and brushing her teeth. She does not

> wipe at all after going

> potty, and she is fine with that, but she is still

> worried that she is going

> potty on everything. The interesting thing is also,

> that sins we started

> therapy, her worries increased tremendous. She has

> so many different worries

> and they are so bizarre, it is hard to believe that

> your mind can come up

> with such bizarre worries. So we are going up and

> down and making slowly

> progress. How long does CBT therapy takes before you

> see that your child is

> enjoying the day again being able to manage the

> worries ????

>

> > Re: Update

> >

> > You wrote: Today she is going to see her therapist

> > again and she is excited to

> > show her all her charts. What seems like hell a

> week

> > ago is now clearing up

> > slowly.

> >

> > This update is great! Your daughter is taking

> charge

> > and though it is not easy she is proving it can be

> > done.

> > I think she is so mature to 'get' that being mad

> at

> > her parents isn't going to help. Sounds like you

> all

> > have a great working relationship with your

> therapist.

> > Vivian

> >

> >

> > __________________________________________________

> >

[Guest guest]

Dear Marcel,

Two steps forward and one step back. It sounds like

things are challenging at your house. Keep

communicating with the therapist. Don't give up. Night

time can be rough when everyone is so tired anyway and

then you have to be patient at bedtime hoping and

praying for a quick settled down period.

How do you ignore her worries? I would talk to the

therapist about that and come up with a plan.

Good to see she is making progress on the

bathroom/teeth brushing. It is always great to see

some progress!

I was reading Aureens post to you about how CBT is 80%

effctive in helping with OCD. Isn't that amazing. What

a great tool to give your child. Hang in there.

Vivian

--- Marcel Rutten wrote:

> Yes we had a good start there, but that only worked

> for 2 to 3 days. We are

> still having problems with the night time to get

> here to calm down and to

> put herself to sleep. And during the day she is

> constantly telling us her

> worries. We ignore her when she is telling her

> worries, but because we are

> not saying anything, she finds still comfort just

> telling us her worries

> eventhough we do not answer her. She has been making

> progress with going to

> the bathroom and brushing her teeth. She does not

> wipe at all after going

> potty, and she is fine with that, but she is still

> worried that she is going

> potty on everything. The interesting thing is also,

> that sins we started

> therapy, her worries increased tremendous. She has

> so many different worries

> and they are so bizarre, it is hard to believe that

> your mind can come up

> with such bizarre worries. So we are going up and

> down and making slowly

> progress. How long does CBT therapy takes before you

> see that your child is

> enjoying the day again being able to manage the

> worries ????

>

> > Re: Update

> >

> > You wrote: Today she is going to see her therapist

> > again and she is excited to

> > show her all her charts. What seems like hell a

> week

> > ago is now clearing up

> > slowly.

> >

> > This update is great! Your daughter is taking

> charge

> > and though it is not easy she is proving it can be

> > done.

> > I think she is so mature to 'get' that being mad

> at

> > her parents isn't going to help. Sounds like you

> all

> > have a great working relationship with your

> therapist.

> > Vivian

> >

> >

> > __________________________________________________

> >

[Guest guest]

Thanks Ray! Fortunately, can take pills, so we're avoiding that

horrible smell!

Sandi

[Guest guest]

Hi Ursula,

We have not tested 's levels yet. His Ped has been thinking that

will hopefully grow out of his PID. But lately, I have had some

concerns about that. is out of antibiotics, except for Clindomycin--he

has grown a resistance to everything else. The next step up (in antibiotic

therapy) is only approved for children over the age of twelve. So, I have

been thinking about having Bri see an Immunologist and asking about IVIG.

Even if we put in ear tubes, we will still be dealing with his chronic sinus

infections. I know he already has severe scarring in his sinuses, and I am

wondering if it is time to put an end to all of this, if possible??

Sandi

[Guest guest]

Hi Ursula,

We have not tested 's levels yet. His Ped has been thinking that

will hopefully grow out of his PID. But lately, I have had some

concerns about that. is out of antibiotics, except for Clindomycin--he

has grown a resistance to everything else. The next step up (in antibiotic

therapy) is only approved for children over the age of twelve. So, I have

been thinking about having Bri see an Immunologist and asking about IVIG.

Even if we put in ear tubes, we will still be dealing with his chronic sinus

infections. I know he already has severe scarring in his sinuses, and I am

wondering if it is time to put an end to all of this, if possible??

Sandi

[Guest guest]

Ursula,

Thanks for the heads up regarding the sinus infections and IVIG. has

never had his levels done--I am going to push for this before his heart

surgery. I do not want him going in there with unspecified PID--I think it

is too dangerous. The ear tubes will help, if only we can get this set to

stay in longer. Do you know anything about the Titanium ear tubes?

Sandi

[Guest guest]

Poor having to take Clindymicin. I know the smell was horrible when

Autumn took it. She was a real trooper & drank it right down--but I wanted

to gag every time I opened the bottle. Hope he gets better soon!

Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan (10 months)

[Guest guest]

Poor having to take Clindymicin. I know the smell was horrible when

Autumn took it. She was a real trooper & drank it right down--but I wanted

to gag every time I opened the bottle. Hope he gets better soon!

Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan (10 months)

[Guest guest]

Sandi - I'm curious, it says in your signature that

has a suspected IgG deficiency. Has he had levels

done recently? Generally a deficiency has to be

confirmed with non-responding antibodies before they'll

consider IVIG. These days they're not even infusing

based soley on low IgG. The antibody response is

driving many immunologists to dose IVIG. I would think

about testing 's antibody function also.

--

Ursula Holleman

Macey's mom (6 yr. old with CVID,

asthma, sinus

disease, GERD, kidney reflux,

Sensory Integration

Disorder, Diabetes Insipidus)

http://home.att.net/~maceyh/

PedPI

D

[Guest guest]

Sandi - I'm curious, it says in your signature that

has a suspected IgG deficiency. Has he had levels

done recently? Generally a deficiency has to be

confirmed with non-responding antibodies before they'll

consider IVIG. These days they're not even infusing

based soley on low IgG. The antibody response is

driving many immunologists to dose IVIG. I would think

about testing 's antibody function also.

--

Ursula Holleman

Macey's mom (6 yr. old with CVID,

asthma, sinus

disease, GERD, kidney reflux,

Sensory Integration

Disorder, Diabetes Insipidus)

http://home.att.net/~maceyh/

PedPI

D

[Guest guest]

I wish I could tell you that IVIG would put an end to

his sinus problems but with so little IgA in IVIG and

the sinuses being lined with it then I would be

misleading you. Macey's sinuses have stayed a point of

contention with us. Les also has serious sinus issues

and last week was told that his starting IVIG would not

help that area. Has had levels taken in the

past? How old was he and what were they? The

immunology consult sounds like a good thing and the ear

tubes should help.

--

Ursula Holleman

Macey's mom (6 yr. old with CVID,

asthma, sinus

disease, GERD, kidney reflux,

Sensory Integration

Disorder, Diabetes Insipidus)

http://home.att.net/~maceyh/

PedPI

D

[Guest guest]

I wish I could tell you that IVIG would put an end to

his sinus problems but with so little IgA in IVIG and

the sinuses being lined with it then I would be

misleading you. Macey's sinuses have stayed a point of

contention with us. Les also has serious sinus issues

and last week was told that his starting IVIG would not

help that area. Has had levels taken in the

past? How old was he and what were they? The

immunology consult sounds like a good thing and the ear

tubes should help.

--

Ursula Holleman

Macey's mom (6 yr. old with CVID,

asthma, sinus

disease, GERD, kidney reflux,

Sensory Integration

Disorder, Diabetes Insipidus)

http://home.att.net/~maceyh/

PedPI

D

[Guest guest]

Ray,

The Clindamycin pills are actually quite small--did you ever read my post

(quite a while ago) about putting the pills under the child's tongue? Dale

suggested practicing with small candy, like the miniature M & Ms. Bri has been

taking pills with this method since he was at least 4. It might be a good

project for you guys (like you don't have enough other things to do .

Seriously, it makes life easier for us.

Sandi

[Guest guest]

Sandi,

Has tried nasal washes to help relieve some of the sinus problems. We

do those for Autumn & she hasn't had a sinus infection since! We've been

doing them since the fall of 2000. She used to get a sinus infection every

14-20 days & we'd end up on tons of antibiotics & sometimes even in the

hospital. Her sinus scarring was not as severe, but it was starting.

We're still dealing with the constant ear infections, but hoping that this

round of antibiotics will help kick it. We're on bactrim for another 14

days & it seems to be doing great. If it doesn't work, we're having

titanium tubes put in. Maybe then her poor body will get a break.

Good luck with . . .I know how tough these decisions can get.

Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan (10 months)

[Guest guest]

You're so lucky! Autumn still can't take pills. . .I told the ped last time

no Clindimycin. . .he laughed & agreed with me!

Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan (10 months)

> Thanks Ray! Fortunately, can take pills, so we're avoiding

that

> horrible smell!

> Sandi

[Guest guest]

I don't remember about putting pills under the tongue. . .so far, the ped

has been reluctant to prescribe pills. He has for Tabitha (age 6.5), but

feels Autumn's too young. I'll think about the mini-m & m's. Maybe that'll

be a good starting point for us.

Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan (10 months)

> The Clindamycin pills are actually quite small--did you ever read my

post

> (quite a while ago) about putting the pills under the child's tongue?

[Guest guest]

Annette,

{HUGS}} I don;t know what to say. You will all be in our prayers

pattie

[Guest guest]

! I am so glad that the doctors are finally getting there act

together for ! Praying for him, I can't even imagine how painful

his ear must be. Poor kid. Kody has gotten yeast infections in his ear

before, it was a long time ago, and I can't remember but it seems to me

that we used ear drops instead of antibiotics. Kody has also gotten

strep infections in his ears, those were hard to get rid of. I think

soon they are going to culture his sinus' to find out exactly what it is

in there too. Hugs to , and one to mommy too!

Diane, Mom to Kody