Update

[Guest guest]

Good News about Grandma Annie!

--

Visit our website at onnetmall.com/mall/sistersdiscjockey

[Guest guest]

Good News about Grandma Annie!

--

Visit our website at onnetmall.com/mall/sistersdiscjockey

[Guest guest]

,

Glad to hear that your husband is doing better. Now if the rest of you

could just get back on an even keel! Even though it feels like anything

but, in some ways it's a blessing that you're still pregnant because your

body is protecting the baby from these illnesses with your girls. Here's

hoping that by his arrival (hopefully MUCH sooner!) all of what you're

enduring now will just be a bad memory and those two big sisters will be

ready to spoil their little brother rotten. You know they're going to be too

cute together! Hang in there, things are bound to start making a turn

around for you soon.

, Chad's mom, age 9, " Hypo " , GERD, Asthma/Bronchitis, " Allergy King " ,

Scoliosis, ??IGA Nephropathy, Anemia

Update

> Autumn woke up this morning with a VERY stuffy nose. Her dad left for

work early & she absolutely refused to let me do a nasal wash. So, I told

her I would wait and see how she was at school today & then decide what to

do. I brought some saline spray with me just in case. She gets a breathing

treatment this afternoon, so I could probably do them at the same time. I

changed her treatments to every 8 hours because she's not wheezing at all.

I think the treatments will break up the congestion better if I do them more

frequently, but now she's having trouble sleeping because of too much

albuterol. So, we're compromising.

>

> (my husband--don't think I've ever mentioned his name) is doing

much better today. His eyes are not swollen & are just a little red. They

still sting from all the debris and I think he may have scratched the whites

of his eyes a little. Luckily, the eye heals faster than any other part of

the body so he will probably be fine by this evening or tomorrow. I've got

some gentamiacin (sp?) drops that I'll use if they start to look infected.

>

> As for me, I can not rest at all. The last two nights, I've gotten less

than 5 hours of sleep, despite going to bed at 10 p.m. I wake up & am not

able to get back to sleep. I've got a cold from the Fifth Disease & cannot

breathe very well through my nose. The Allegra-D the dr gave me is not

helping much & he's out of the office today. So, when I go in Monday for my

regular appointment I'll ask him about it if I'm still not better. I'm

expecting this " cold " to last longer than normal since the incubation period

on the virus is 4-20 days.

>

> We are spring cleaning this weekend and buying new beds for the girls.

So, we've got to find a sitter for Autumn while we do the " heavy " cleaning.

What fun! You're right, : when it rains, it FLOODS!

>

> Thanks for the positive thoughts.

>

> Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan Avery due 5/17/01

>

>

>

[Guest guest]

,

Glad to hear that your husband is doing better. Now if the rest of you

could just get back on an even keel! Even though it feels like anything

but, in some ways it's a blessing that you're still pregnant because your

body is protecting the baby from these illnesses with your girls. Here's

hoping that by his arrival (hopefully MUCH sooner!) all of what you're

enduring now will just be a bad memory and those two big sisters will be

ready to spoil their little brother rotten. You know they're going to be too

cute together! Hang in there, things are bound to start making a turn

around for you soon.

, Chad's mom, age 9, " Hypo " , GERD, Asthma/Bronchitis, " Allergy King " ,

Scoliosis, ??IGA Nephropathy, Anemia

Update

> Autumn woke up this morning with a VERY stuffy nose. Her dad left for

work early & she absolutely refused to let me do a nasal wash. So, I told

her I would wait and see how she was at school today & then decide what to

do. I brought some saline spray with me just in case. She gets a breathing

treatment this afternoon, so I could probably do them at the same time. I

changed her treatments to every 8 hours because she's not wheezing at all.

I think the treatments will break up the congestion better if I do them more

frequently, but now she's having trouble sleeping because of too much

albuterol. So, we're compromising.

>

> (my husband--don't think I've ever mentioned his name) is doing

much better today. His eyes are not swollen & are just a little red. They

still sting from all the debris and I think he may have scratched the whites

of his eyes a little. Luckily, the eye heals faster than any other part of

the body so he will probably be fine by this evening or tomorrow. I've got

some gentamiacin (sp?) drops that I'll use if they start to look infected.

>

> As for me, I can not rest at all. The last two nights, I've gotten less

than 5 hours of sleep, despite going to bed at 10 p.m. I wake up & am not

able to get back to sleep. I've got a cold from the Fifth Disease & cannot

breathe very well through my nose. The Allegra-D the dr gave me is not

helping much & he's out of the office today. So, when I go in Monday for my

regular appointment I'll ask him about it if I'm still not better. I'm

expecting this " cold " to last longer than normal since the incubation period

on the virus is 4-20 days.

>

> We are spring cleaning this weekend and buying new beds for the girls.

So, we've got to find a sitter for Autumn while we do the " heavy " cleaning.

What fun! You're right, : when it rains, it FLOODS!

>

> Thanks for the positive thoughts.

>

> Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan Avery due 5/17/01

>

>

>

[Guest guest]

,

Glad to hear that your husband is doing better. Now if the rest of you

could just get back on an even keel! Even though it feels like anything

but, in some ways it's a blessing that you're still pregnant because your

body is protecting the baby from these illnesses with your girls. Here's

hoping that by his arrival (hopefully MUCH sooner!) all of what you're

enduring now will just be a bad memory and those two big sisters will be

ready to spoil their little brother rotten. You know they're going to be too

cute together! Hang in there, things are bound to start making a turn

around for you soon.

, Chad's mom, age 9, " Hypo " , GERD, Asthma/Bronchitis, " Allergy King " ,

Scoliosis, ??IGA Nephropathy, Anemia

Update

> Autumn woke up this morning with a VERY stuffy nose. Her dad left for

work early & she absolutely refused to let me do a nasal wash. So, I told

her I would wait and see how she was at school today & then decide what to

do. I brought some saline spray with me just in case. She gets a breathing

treatment this afternoon, so I could probably do them at the same time. I

changed her treatments to every 8 hours because she's not wheezing at all.

I think the treatments will break up the congestion better if I do them more

frequently, but now she's having trouble sleeping because of too much

albuterol. So, we're compromising.

>

> (my husband--don't think I've ever mentioned his name) is doing

much better today. His eyes are not swollen & are just a little red. They

still sting from all the debris and I think he may have scratched the whites

of his eyes a little. Luckily, the eye heals faster than any other part of

the body so he will probably be fine by this evening or tomorrow. I've got

some gentamiacin (sp?) drops that I'll use if they start to look infected.

>

> As for me, I can not rest at all. The last two nights, I've gotten less

than 5 hours of sleep, despite going to bed at 10 p.m. I wake up & am not

able to get back to sleep. I've got a cold from the Fifth Disease & cannot

breathe very well through my nose. The Allegra-D the dr gave me is not

helping much & he's out of the office today. So, when I go in Monday for my

regular appointment I'll ask him about it if I'm still not better. I'm

expecting this " cold " to last longer than normal since the incubation period

on the virus is 4-20 days.

>

> We are spring cleaning this weekend and buying new beds for the girls.

So, we've got to find a sitter for Autumn while we do the " heavy " cleaning.

What fun! You're right, : when it rains, it FLOODS!

>

> Thanks for the positive thoughts.

>

> Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan Avery due 5/17/01

>

>

>

[Guest guest]

:

Thank you so much for your post. It really helps to know that people care.

Lately with everyone so needy and so demanding i feel like a rubber band

being stretched in so many directions.

I live in New Jersey. I have an HMO and the insurance approval for my

's operation is an absolute nightmare. They recently after 15 years

decided to deny her tube feedings and I have only 1 more month supply left.

My children also have medicaid, which may pay for the formula eventually with

many letters of necessity, however this surgery has been stalled since last

FEBRUARY when we were evaluated at Cornell. My baby seized in the surgeons

arms and he was ready to do the surgery the same week - but I knew better -

and here we sit still waiting 1 year later for the insurance approval. I am

about ready to go to the newspapers - that is if I can ever get everyone

stablized in this house.

My daughter has been on 3 different antidepressants. First they told

me she was bi-polar and put her on Depakote, then after 3 months of no

improvements, another doctor told me she was NOT bipolar and switched the

medication to Effexor, still no improvement and even worse, now after this

recent hospitalization she is on Wellbutrin and nauseous and vomiting ALL THE

TIME and again no improvement.

She is impulsive and unstable and i keep telling the counselors that we are

in a crisis here and no one listens. If there is anyone you can suggest I

would be deeply appreciative.

Thank you again for your post and any advice you have. We have an

appointment today with s new out patient psychiatrist , hopefully he

will change the medication again! A scary thought though.

Tina

(Mike 15 CVID, JRA and asthma)

[Guest guest]

:

Thank you so much for your post. It really helps to know that people care.

Lately with everyone so needy and so demanding i feel like a rubber band

being stretched in so many directions.

I live in New Jersey. I have an HMO and the insurance approval for my

's operation is an absolute nightmare. They recently after 15 years

decided to deny her tube feedings and I have only 1 more month supply left.

My children also have medicaid, which may pay for the formula eventually with

many letters of necessity, however this surgery has been stalled since last

FEBRUARY when we were evaluated at Cornell. My baby seized in the surgeons

arms and he was ready to do the surgery the same week - but I knew better -

and here we sit still waiting 1 year later for the insurance approval. I am

about ready to go to the newspapers - that is if I can ever get everyone

stablized in this house.

My daughter has been on 3 different antidepressants. First they told

me she was bi-polar and put her on Depakote, then after 3 months of no

improvements, another doctor told me she was NOT bipolar and switched the

medication to Effexor, still no improvement and even worse, now after this

recent hospitalization she is on Wellbutrin and nauseous and vomiting ALL THE

TIME and again no improvement.

She is impulsive and unstable and i keep telling the counselors that we are

in a crisis here and no one listens. If there is anyone you can suggest I

would be deeply appreciative.

Thank you again for your post and any advice you have. We have an

appointment today with s new out patient psychiatrist , hopefully he

will change the medication again! A scary thought though.

Tina

(Mike 15 CVID, JRA and asthma)

[Guest guest]

:

Thank you so much for your post. It really helps to know that people care.

Lately with everyone so needy and so demanding i feel like a rubber band

being stretched in so many directions.

I live in New Jersey. I have an HMO and the insurance approval for my

's operation is an absolute nightmare. They recently after 15 years

decided to deny her tube feedings and I have only 1 more month supply left.

My children also have medicaid, which may pay for the formula eventually with

many letters of necessity, however this surgery has been stalled since last

FEBRUARY when we were evaluated at Cornell. My baby seized in the surgeons

arms and he was ready to do the surgery the same week - but I knew better -

and here we sit still waiting 1 year later for the insurance approval. I am

about ready to go to the newspapers - that is if I can ever get everyone

stablized in this house.

My daughter has been on 3 different antidepressants. First they told

me she was bi-polar and put her on Depakote, then after 3 months of no

improvements, another doctor told me she was NOT bipolar and switched the

medication to Effexor, still no improvement and even worse, now after this

recent hospitalization she is on Wellbutrin and nauseous and vomiting ALL THE

TIME and again no improvement.

She is impulsive and unstable and i keep telling the counselors that we are

in a crisis here and no one listens. If there is anyone you can suggest I

would be deeply appreciative.

Thank you again for your post and any advice you have. We have an

appointment today with s new out patient psychiatrist , hopefully he

will change the medication again! A scary thought though.

Tina

(Mike 15 CVID, JRA and asthma)

[Guest guest]

Tina,

I'm so sorry things have hit your household so hard these last few months.

It is very wearing on us as parents when we have one constant crisis after

another and no time to rest in between. Have you looked into respite care

for yourself? I may be able to get you some information on a respite care

network for your state if you'll tell me where you live. I've got lots of

contacts in that area. Time to yourself is just as important as caring for

your family & seeing that they get well also.

I hope feels better soon and that the infections subside. I guess

if you have to go back on IVIG that's better than battling one infection

after another. At least it would be some relief for him.

As for your Nichole's seizures--please push the insurance company on this.

I know it's hard when you have to wait for their approval, but is there a

way your doctor can provide you with an advocate to push this process along.

Some doctors in our area work with local advocates who help negotiate the

maze of health care. Sometimes having someone speak for you is more

effective than you doing it yourself.

I know the mental health issues with are equally as difficult. Is she

taking medication? Does she take it regularly--that makes a difference. It

takes so long for many of those antidepressants to take hold in the system

that if she misses a dose, you'll be starting over again. Again, I might be

able to find some resources for you but I need to know where you live.

God bless you during this difficult time. You'll definitely be in my

prayers.

Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan Avery due 5/17/01

[Guest guest]

Tina,

I'm so sorry things have hit your household so hard these last few months.

It is very wearing on us as parents when we have one constant crisis after

another and no time to rest in between. Have you looked into respite care

for yourself? I may be able to get you some information on a respite care

network for your state if you'll tell me where you live. I've got lots of

contacts in that area. Time to yourself is just as important as caring for

your family & seeing that they get well also.

I hope feels better soon and that the infections subside. I guess

if you have to go back on IVIG that's better than battling one infection

after another. At least it would be some relief for him.

As for your Nichole's seizures--please push the insurance company on this.

I know it's hard when you have to wait for their approval, but is there a

way your doctor can provide you with an advocate to push this process along.

Some doctors in our area work with local advocates who help negotiate the

maze of health care. Sometimes having someone speak for you is more

effective than you doing it yourself.

I know the mental health issues with are equally as difficult. Is she

taking medication? Does she take it regularly--that makes a difference. It

takes so long for many of those antidepressants to take hold in the system

that if she misses a dose, you'll be starting over again. Again, I might be

able to find some resources for you but I need to know where you live.

God bless you during this difficult time. You'll definitely be in my

prayers.

Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan Avery due 5/17/01

[Guest guest]

Tina,

I'm so sorry things have hit your household so hard these last few months.

It is very wearing on us as parents when we have one constant crisis after

another and no time to rest in between. Have you looked into respite care

for yourself? I may be able to get you some information on a respite care

network for your state if you'll tell me where you live. I've got lots of

contacts in that area. Time to yourself is just as important as caring for

your family & seeing that they get well also.

I hope feels better soon and that the infections subside. I guess

if you have to go back on IVIG that's better than battling one infection

after another. At least it would be some relief for him.

As for your Nichole's seizures--please push the insurance company on this.

I know it's hard when you have to wait for their approval, but is there a

way your doctor can provide you with an advocate to push this process along.

Some doctors in our area work with local advocates who help negotiate the

maze of health care. Sometimes having someone speak for you is more

effective than you doing it yourself.

I know the mental health issues with are equally as difficult. Is she

taking medication? Does she take it regularly--that makes a difference. It

takes so long for many of those antidepressants to take hold in the system

that if she misses a dose, you'll be starting over again. Again, I might be

able to find some resources for you but I need to know where you live.

God bless you during this difficult time. You'll definitely be in my

prayers.

Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan Avery due 5/17/01

[Guest guest]

Tina,

I am sorry to hear that things are so rough for you and your family right

now. I cannot imagine the stress of dealing with three sick children. I

hope that you are able to find answers to help all of them. (((HUGS))) I

will keep your family in my prayers.

Grace Caroline 8/14/97

Caelan 8/26/99

[Guest guest]

Tina,

I am sorry to hear that things are so rough for you and your family right

now. I cannot imagine the stress of dealing with three sick children. I

hope that you are able to find answers to help all of them. (((HUGS))) I

will keep your family in my prayers.

Grace Caroline 8/14/97

Caelan 8/26/99

[Guest guest]

Tina,

I am sorry to hear that things are so rough for you and your family right

now. I cannot imagine the stress of dealing with three sick children. I

hope that you are able to find answers to help all of them. (((HUGS))) I

will keep your family in my prayers.

Grace Caroline 8/14/97

Caelan 8/26/99

[Guest guest]

Dear Tina,

Please know that I am thinking of you right now. It really sounds like your

plate is quite overloaded. I hope and pray that things will turn in a more

positive direction for you soon. Take care and consider yourself hugged.

Autumn (Mom to Mark Cd5-Cd19 PID and )

Re: UPDATE

> Tina,

> I'm so sorry things have hit your household so hard these last few months.

> It is very wearing on us as parents when we have one constant crisis after

> another and no time to rest in between. Have you looked into respite care

> for yourself? I may be able to get you some information on a respite care

> network for your state if you'll tell me where you live. I've got lots of

> contacts in that area. Time to yourself is just as important as caring

for

> your family & seeing that they get well also.

>

> I hope feels better soon and that the infections subside. I guess

> if you have to go back on IVIG that's better than battling one infection

> after another. At least it would be some relief for him.

>

> As for your Nichole's seizures--please push the insurance company on this.

> I know it's hard when you have to wait for their approval, but is there a

> way your doctor can provide you with an advocate to push this process

along.

> Some doctors in our area work with local advocates who help negotiate the

> maze of health care. Sometimes having someone speak for you is more

> effective than you doing it yourself.

>

> I know the mental health issues with are equally as difficult. Is

she

> taking medication? Does she take it regularly--that makes a difference.

It

> takes so long for many of those antidepressants to take hold in the system

> that if she misses a dose, you'll be starting over again. Again, I might

be

> able to find some resources for you but I need to know where you live.

>

> God bless you during this difficult time. You'll definitely be in my

> prayers.

>

> Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma,

> chronic sinusitis, and allergies), and Duncan Avery due 5/17/01

>

>

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

>

>

[Guest guest]

Tina,

Just a thought, have the psychiatrists ever mentioned OCD as a diagnosis?

Sometimes you can see a deep depression with OCD (Obsessive Compulsive

disorder). There are specific medications for OCD. I hope that I am not

over stepping the line by suggesting that this could be a possibility. It

was just a thought as I have seen this in so many teenagers that also had

depression.

Autumn (Mom to Mark Cd5-Cd19 PID and )

Re: UPDATE

> :

> Thank you so much for your post. It really helps to know that people care.

> Lately with everyone so needy and so demanding i feel like a rubber band

> being stretched in so many directions.

> I live in New Jersey. I have an HMO and the insurance approval for my

> 's operation is an absolute nightmare. They recently after 15 years

> decided to deny her tube feedings and I have only 1 more month supply

left.

> My children also have medicaid, which may pay for the formula eventually

with

> many letters of necessity, however this surgery has been stalled since

last

> FEBRUARY when we were evaluated at Cornell. My baby seized in the

surgeons

> arms and he was ready to do the surgery the same week - but I knew

better -

> and here we sit still waiting 1 year later for the insurance approval. I

am

> about ready to go to the newspapers - that is if I can ever get everyone

> stablized in this house.

> My daughter has been on 3 different antidepressants. First they

told

> me she was bi-polar and put her on Depakote, then after 3 months of no

> improvements, another doctor told me she was NOT bipolar and switched the

> medication to Effexor, still no improvement and even worse, now after this

> recent hospitalization she is on Wellbutrin and nauseous and vomiting ALL

THE

> TIME and again no improvement.

> She is impulsive and unstable and i keep telling the counselors that we

are

> in a crisis here and no one listens. If there is anyone you can suggest I

> would be deeply appreciative.

> Thank you again for your post and any advice you have. We have an

> appointment today with s new out patient psychiatrist , hopefully he

> will change the medication again! A scary thought though.

> Tina

> (Mike 15 CVID, JRA and asthma)

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

>

>

[Guest guest]

Tina,

Just a thought, have the psychiatrists ever mentioned OCD as a diagnosis?

Sometimes you can see a deep depression with OCD (Obsessive Compulsive

disorder). There are specific medications for OCD. I hope that I am not

over stepping the line by suggesting that this could be a possibility. It

was just a thought as I have seen this in so many teenagers that also had

depression.

Autumn (Mom to Mark Cd5-Cd19 PID and )

Re: UPDATE

> :

> Thank you so much for your post. It really helps to know that people care.

> Lately with everyone so needy and so demanding i feel like a rubber band

> being stretched in so many directions.

> I live in New Jersey. I have an HMO and the insurance approval for my

> 's operation is an absolute nightmare. They recently after 15 years

> decided to deny her tube feedings and I have only 1 more month supply

left.

> My children also have medicaid, which may pay for the formula eventually

with

> many letters of necessity, however this surgery has been stalled since

last

> FEBRUARY when we were evaluated at Cornell. My baby seized in the

surgeons

> arms and he was ready to do the surgery the same week - but I knew

better -

> and here we sit still waiting 1 year later for the insurance approval. I

am

> about ready to go to the newspapers - that is if I can ever get everyone

> stablized in this house.

> My daughter has been on 3 different antidepressants. First they

told

> me she was bi-polar and put her on Depakote, then after 3 months of no

> improvements, another doctor told me she was NOT bipolar and switched the

> medication to Effexor, still no improvement and even worse, now after this

> recent hospitalization she is on Wellbutrin and nauseous and vomiting ALL

THE

> TIME and again no improvement.

> She is impulsive and unstable and i keep telling the counselors that we

are

> in a crisis here and no one listens. If there is anyone you can suggest I

> would be deeply appreciative.

> Thank you again for your post and any advice you have. We have an

> appointment today with s new out patient psychiatrist , hopefully he

> will change the medication again! A scary thought though.

> Tina

> (Mike 15 CVID, JRA and asthma)

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

>

>

[Guest guest]

Tina, I have a suggestion on how to get your HMO moving in your favor, which

comes from personal experience. The HMO you are on is regulated by a state

entity, most likely the Department of Insurance in New Jersey. I suggest

you contact the regulator for your HMO and tell them you want to file a

complaint against your health plan. If the Insurance Department isn't the

regulator, they'll get you to someone that is. The thing that is most

problematic for HMOs is when members file complaints through regulators,

when members go to the media and get their story told in the press, and when

members file lawsuits. Also, many states now have mandatory " external

review " which requires an HMO to allow a member to go outside the network

for a review by an independent party if certain criteria exists. Please

check into these opportunities for resolution to some of your challenges. I

know these things because I work in a regulatory compliance role for an HMO,

and have done so for 10 1/2 years. Good luck!

Shari (Mom to Braden, 4, mild CVID, and , 6)

> Re: UPDATE

>

> :

> Thank you so much for your post. It really helps to know that people care.

>

> Lately with everyone so needy and so demanding i feel like a rubber band

> being stretched in so many directions.

> I live in New Jersey. I have an HMO and the insurance approval for my

> 's operation is an absolute nightmare. They recently after 15 years

>

> decided to deny her tube feedings and I have only 1 more month supply

> left.

> My children also have medicaid, which may pay for the formula eventually

> with

> many letters of necessity, however this surgery has been stalled since

> last

> FEBRUARY when we were evaluated at Cornell. My baby seized in the

> surgeons

> arms and he was ready to do the surgery the same week - but I knew better

> -

> and here we sit still waiting 1 year later for the insurance approval. I

> am

> about ready to go to the newspapers - that is if I can ever get everyone

> stablized in this house.

> My daughter has been on 3 different antidepressants. First they

> told

> me she was bi-polar and put her on Depakote, then after 3 months of no

> improvements, another doctor told me she was NOT bipolar and switched the

> medication to Effexor, still no improvement and even worse, now after this

>

> recent hospitalization she is on Wellbutrin and nauseous and vomiting ALL

> THE

> TIME and again no improvement.

> She is impulsive and unstable and i keep telling the counselors that we

> are

> in a crisis here and no one listens. If there is anyone you can suggest I

>

> would be deeply appreciative.

> Thank you again for your post and any advice you have. We have an

> appointment today with s new out patient psychiatrist , hopefully he

> will change the medication again! A scary thought though.

> Tina

> (Mike 15 CVID, JRA and asthma)

>

> This forum is open to parents and caregivers of children diagnosed with a

> Primary Immune Deficiency. Opinions or medical advice stated here are the

> sole responsibility of the poster and should not be taken as professional

> advice.

>

>

[Guest guest]

Tina, I have a suggestion on how to get your HMO moving in your favor, which

comes from personal experience. The HMO you are on is regulated by a state

entity, most likely the Department of Insurance in New Jersey. I suggest

you contact the regulator for your HMO and tell them you want to file a

complaint against your health plan. If the Insurance Department isn't the

regulator, they'll get you to someone that is. The thing that is most

problematic for HMOs is when members file complaints through regulators,

when members go to the media and get their story told in the press, and when

members file lawsuits. Also, many states now have mandatory " external

review " which requires an HMO to allow a member to go outside the network

for a review by an independent party if certain criteria exists. Please

check into these opportunities for resolution to some of your challenges. I

know these things because I work in a regulatory compliance role for an HMO,

and have done so for 10 1/2 years. Good luck!

Shari (Mom to Braden, 4, mild CVID, and , 6)

> Re: UPDATE

>

> :

> Thank you so much for your post. It really helps to know that people care.

>

> Lately with everyone so needy and so demanding i feel like a rubber band

> being stretched in so many directions.

> I live in New Jersey. I have an HMO and the insurance approval for my

> 's operation is an absolute nightmare. They recently after 15 years

>

> decided to deny her tube feedings and I have only 1 more month supply

> left.

> My children also have medicaid, which may pay for the formula eventually

> with

> many letters of necessity, however this surgery has been stalled since

> last

> FEBRUARY when we were evaluated at Cornell. My baby seized in the

> surgeons

> arms and he was ready to do the surgery the same week - but I knew better

> -

> and here we sit still waiting 1 year later for the insurance approval. I

> am

> about ready to go to the newspapers - that is if I can ever get everyone

> stablized in this house.

> My daughter has been on 3 different antidepressants. First they

> told

> me she was bi-polar and put her on Depakote, then after 3 months of no

> improvements, another doctor told me she was NOT bipolar and switched the

> medication to Effexor, still no improvement and even worse, now after this

>

> recent hospitalization she is on Wellbutrin and nauseous and vomiting ALL

> THE

> TIME and again no improvement.

> She is impulsive and unstable and i keep telling the counselors that we

> are

> in a crisis here and no one listens. If there is anyone you can suggest I

>

> would be deeply appreciative.

> Thank you again for your post and any advice you have. We have an

> appointment today with s new out patient psychiatrist , hopefully he

> will change the medication again! A scary thought though.

> Tina

> (Mike 15 CVID, JRA and asthma)

>

> This forum is open to parents and caregivers of children diagnosed with a

> Primary Immune Deficiency. Opinions or medical advice stated here are the

> sole responsibility of the poster and should not be taken as professional

> advice.

>

>

[Guest guest]

Tina,

I haven't had the chance to see a post from you since joining the group

here. Your story is very heartbreaking and I will be sending many prayers

on your behalf. I hope that you will be able to get some breakthroughs in

all the many things you are dealing with. I'll pray for your strength

through all of this. May God be with you and your family.

, mother to Chad, age 9, " Hypo " , GERD, Asthma/Bronchitis, " Allergy

King " , Scoliosis, ??IGA Nephropathy, Anemia

UPDATE

> Hi everyone,

> I am so sorry to hear about all the hard times everyone on the list seems

to

> be having lately. I have not been able to post for a long time and post

> after post I have read is about how most of the pumpkins are sick or in

the

> hospital again.

> We have not been well here either.

> My son has been suffering terribly with sinus/migraine/allergy

> symptoms with terrible ear pain as well. We are not sure if what to

> attribute all of these problems to at this point. We are in the process

of

> setting up appointments with the immuno, neuro, allergist, ent to see what

> can be done. We are contemplating going back on IVIG and I am told that

> there is a trial going on for kids on IVIG which works on B cells? I

don't

> know too much about it except I was asked if would like to

> participate so I am waiting for the protocol to review it and I will send

in

> the information to the list as soon as I get it in the mail.

> My middle child, as I posted in the past was hospitalized for

> depression - has just returned home again from another hospitalization

this

> week - clearly not ready to be released. I am currently traveling the

mental

> health roads in search of answers as much as I am searching for physcial

> answers for and my child who is critically ill with seizures.

> 's seizures are currently ranging about 150 to 200 a day and we are

> waiting insurance approval (now for more than 1 year) to get an operation

> called the VNS which may reduce her seizures of up to 50%. I fired one of

> her full time nurses for sleeping in her room with a pillow and a blanket

> while is on her life support equipment while she sleeps for sleep

> apnea.

> To make matters worse, my husband is in the hospital now with another DVT

> (blood clot in his leg). He had this problem a year ago, was on blood

> thinners almost 1 year, after a repeat doppler and a clean bill of health

> from a vascular doctor, he was taken off the blood thinners only to

produce 3

> more blood clots!!!!!!! Now he is being tested for a condition called

factor

> 5 ?? which appears to be a clotting problem which would mean he would be

on

> blood thinners for life. I think there was someone on this list who had

a

> problem with clots as well? Wondering how and where to search for

> information for this condition???

> So that completes the list of ailments in this house currently.

> I just wanted to let you all know while I can't post all the time, I try

to

> keep up with your posts as often as I can and I keep all of your children

in

> my prayers each night.

>

> Ursula, has had several bowel impactions, as has . We have

> tried every laxative, every stool softener on the market to no avail.

Our

> G.I. doctor from Columbia in New York has on Go lytely at home 6

ozs

> twice a day every other day and it really seems to help. He told us it is

> harmless and the couple of times we tried to discontinue it our problems

came

> back. We still have problems with 's bowels every week. I hope

they

> can get to the bottom of the situation and resolve this situation with

Macey!

> You sure do need a Mommy's day out - as do most of you on line.

> I truly hope spring brings more than allergys to you all - I hope it

brings

> peace and better health and happier days ahead.

> Take care and God bless you all

> Tina

> (Mike, 15 CVID,JRA and Asthma)

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

>

>

[Guest guest]

Tina,

I cannot believe what you are going through at the moment. Can anyone cope

with so much????? I hope you have a good support network to help you get

through this.

You asked about info on blood clots. Its me with the recurring pelvic DVTs.

I'll post you privately with some links.

, and s mom

UPDATE

> Hi everyone,

> I am so sorry to hear about all the hard times everyone on the list seems

to

> be having lately. I have not been able to post for a long time and post

> after post I have read is about how most of the pumpkins are sick or in

the

> hospital again.

> We have not been well here either.

> My son has been suffering terribly with sinus/migraine/allergy

> symptoms with terrible ear pain as well. We are not sure if what to

> attribute all of these problems to at this point. We are in the process

of

> setting up appointments with the immuno, neuro, allergist, ent to see what

> can be done. We are contemplating going back on IVIG and I am told that

> there is a trial going on for kids on IVIG which works on B cells? I

don't

> know too much about it except I was asked if would like to

> participate so I am waiting for the protocol to review it and I will send

in

> the information to the list as soon as I get it in the mail.

> My middle child, as I posted in the past was hospitalized for

> depression - has just returned home again from another hospitalization

this

> week - clearly not ready to be released. I am currently traveling the

mental

> health roads in search of answers as much as I am searching for physcial

> answers for and my child who is critically ill with seizures.

> 's seizures are currently ranging about 150 to 200 a day and we are

> waiting insurance approval (now for more than 1 year) to get an operation

> called the VNS which may reduce her seizures of up to 50%. I fired one of

> her full time nurses for sleeping in her room with a pillow and a blanket

> while is on her life support equipment while she sleeps for sleep

> apnea.

> To make matters worse, my husband is in the hospital now with another DVT

> (blood clot in his leg). He had this problem a year ago, was on blood

> thinners almost 1 year, after a repeat doppler and a clean bill of health

> from a vascular doctor, he was taken off the blood thinners only to

produce 3

> more blood clots!!!!!!! Now he is being tested for a condition called

factor

> 5 ?? which appears to be a clotting problem which would mean he would be

on

> blood thinners for life. I think there was someone on this list who had

a

> problem with clots as well? Wondering how and where to search for

> information for this condition???

> So that completes the list of ailments in this house currently.

> I just wanted to let you all know while I can't post all the time, I try

to

> keep up with your posts as often as I can and I keep all of your children

in

> my prayers each night.

>

> Ursula, has had several bowel impactions, as has . We have

> tried every laxative, every stool softener on the market to no avail.

Our

> G.I. doctor from Columbia in New York has on Go lytely at home 6

ozs

> twice a day every other day and it really seems to help. He told us it is

> harmless and the couple of times we tried to discontinue it our problems

came

> back. We still have problems with 's bowels every week. I hope

they

> can get to the bottom of the situation and resolve this situation with

Macey!

> You sure do need a Mommy's day out - as do most of you on line.

> I truly hope spring brings more than allergys to you all - I hope it

brings

> peace and better health and happier days ahead.

> Take care and God bless you all

> Tina

> (Mike, 15 CVID,JRA and Asthma)

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

>

>

[Guest guest]

> The ped called today and the jist of it is, did her Hib fizzle out or did it

> never mount in the first place? And guess what that means, yessss another

> Hib was given today to test for response (called a " challenge " ) and they

> gave her MMR which will hopefully booster her mumps level. The tetanus Dr.

> Myers was ok with.

Don't forget that as Macey gets older Hib should be less of

a threat - it is most dangerous for infants and children

under the age of five. will be 14 this summer, has no

response to Hib, and is doing pretty well as long as any

infection is treated immediately (no waiting around to

see if he'll " get over it " on his own). His overall IgG is

further out of range now than it was when he was sick ALL

the time, IgG subclass 2 is a little closer to normal

range, but not much, but he is doing better than he ever

has.

Hang in there Ursula!

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

Conatser

conatser@...

[Guest guest]

> The ped called today and the jist of it is, did her Hib fizzle out or did it

> never mount in the first place? And guess what that means, yessss another

> Hib was given today to test for response (called a " challenge " ) and they

> gave her MMR which will hopefully booster her mumps level. The tetanus Dr.

> Myers was ok with.

Don't forget that as Macey gets older Hib should be less of

a threat - it is most dangerous for infants and children

under the age of five. will be 14 this summer, has no

response to Hib, and is doing pretty well as long as any

infection is treated immediately (no waiting around to

see if he'll " get over it " on his own). His overall IgG is

further out of range now than it was when he was sick ALL

the time, IgG subclass 2 is a little closer to normal

range, but not much, but he is doing better than he ever

has.

Hang in there Ursula!

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

Conatser

conatser@...

[Guest guest]

- The ped did mention that older kids didn't need as much Hib, what

Duke wants to see is if she has the ability to mount a response. Duke said

her level (77) wasn't that awful (even though <100 is the norm) and that she

could live with that. So response seems to be the thing.

Thanks for the email.

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/

[Guest guest]

- The ped did mention that older kids didn't need as much Hib, what

Duke wants to see is if she has the ability to mount a response. Duke said

her level (77) wasn't that awful (even though <100 is the norm) and that she

could live with that. So response seems to be the thing.

Thanks for the email.

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/