Here we go AGAIN

[Guest guest]

That is fabulous Gail!! Tara is doing great!!!

Sara

--On Saturday, March 10, 2001, 8:41 AM -0500 GVanHouten <rjvh@...>

wrote:

> Tara was just assest in OT, skills scattered from 17mos to 23mos.....

[Guest guest]

My daughter has the worst problems with her ears. We had tubes put in last year due to a flat tynpanegram....since she has had constant fluid, drainage and infections! It is enough to drive a person nuts. I think I know the problem though...water is getting in her ears during bathtime. I have started to dab with a q-tip right after bath and then we blow dry her hair and aiming the air into her ears a little. She hasn't had much drainage since. For awhile I was taking her to the ENT each week to have her ears cleaned out....quite an ordeal with a four year old, her two year old twin and a newborn with the ENT being 40 miles a way. I have an appt. this month and we are having her hearing tested again.

With ya on the ear problems,

[Guest guest]

Wow Stacey,

What a project getting to the ENT with your brood, and the distance to boot!

Glad to hear that the drainage has cleared up. When my older son was small and had tubes, we put earplugs in his ears during bathtime. Have you tried that? He got tubes just after his second birthday and had them until he was almost 4. Maybe his age made the difference in getting (and keeping!) them in. Good luck!

Casey, mom to (DS) and , 16 mo.

[Guest guest]

That is great news. It also makes me feel better. Davey had tubes put in his ears when he was 9 months old. He has not had fluid or an ear infection since. This was in November. Our ENT told us that Davey would probably need new tube sometime this summer, since he put the smallest tubes in Davey's ears. I am hoping that his tubes last longer. Both boys were sick for their first birthday. Will was sick for the first time. He did have an ear infection and 104 degree temperature. Davey's was all in his nose and throat, but his ears looked great. wife of , mom to Amy 13, Kelsey10, Davy 12 months, and Will 12months here we go again Hello allTara is scheduled for her second set of ear tubes on March 20th. It isjust one years time since the 1st set, not bad her ENT said, since somekids her age have had 3 or 4 sets.....her left ear still has the tube inand is clear, the right side tube has been out since Dec, not infectedbut, has had fluid in the canal since Dec...........planning my twins2nd birthday party for March 25th..........our IEP is up for year two,Tara was just assest in OT, skills scattered from 17mos to 23mos.....Ijust look back at what she was up to this time last year, she was justcrawling, now she is just about walking independently.........I'mlooking forward to a better Spring/Summer time with all my kids thisyear as aposed to last year esp if Tara will be walking..............Gail........Bobby 7, Jillian 4 1/2, and Tara{Ds} 23mos

[Guest guest]

Wow Gail - I can't believe they're going to be 2 so

soon!!! Will keep Tara in my thoughts and prayers on

the 20th.

Judi-Mom to Sam & , 4, Identical Twins

__________________________________________________

[Guest guest]

Hiya!

We've had so many problems with ears and tubes too...that's a great idea

with the hair dryer. I sometimes use the hairdryer on bottoms if there's a

bad diaper rash, but I never thought of using it near the ears. When we take

to swim therapy, we use wax/silicone type earplugs over tiny pieces

of cotton in the ears to keep water out and I sometimes use them for

bathtime too. You can get them at I think pretty much any pharmacy, and you

can get a headband type cover to keep them in better from " The Right Start "

catalog...they have a website too. Works well. Also, there are open caps

that can go over their heads to keep water out of the eyes, etc that might

help too. We also have a sprayer attached to the utility sink faucet (where

we give baths (saves the back and fits them well)) which is great for

directing the water away from the ears. Our ped also recommended that,

rather than using q-tips, take the corner of a tissue and roll it in your

fingers making a long pointy needle shape. You can put that in the ears all

the way in to soak up extra fluid without any risk of damaging the drum

because it will collapse before it gets near that area. We've been doing

that with no problems at all. Just some more suggestions for anyone on the

list who might be looking for something like this who also has ear trouble.

Have a nice day,

My daughter has the worst problems with her ears. We had tubes put in last

year due to a flat tynpanegram....since she has had constant fluid, drainage

and infections! It is enough to drive a person nuts. I think I know the

problem though...water is getting in her ears during bathtime. I have

started to dab with a q-tip right after bath and then we blow dry her hair

and aiming the air into her ears a little. She hasn't had much drainage

since. For awhile I was taking her to the ENT each week to have her ears

cleaned out....quite an ordeal with a four year old, her two year old twin

and a newborn with the ENT being 40 miles a way. I have an appt. this month

and we are having her hearing tested again.

With ya on the ear problems,

______________________________________________

FREE Personalized Email at Mail.com

Sign up at http://www.mail.com/?sr=signup

[Guest guest]

Hi , Great suggestions!! I'll have to use

some of those. Landon has just had his fifth ear

infection since November.We have tubes too but they

don't appear to be helping. I'm getting pretty

concerned about him becoming immuned to antibiotics.

I'm going to call the E & T this week because something

has got to give . mom to Landon (Ds) and Ashton

33 months

--- Izzo <cabevizzo@...> wrote:

> Hiya!

>

> We've had so many problems with ears and tubes

> too...that's a great idea

> with the hair dryer. I sometimes use the hairdryer

> on bottoms if there's a

> bad diaper rash, but I never thought of using it

> near the ears. When we take

> to swim therapy, we use wax/silicone type

> earplugs over tiny pieces

> of cotton in the ears to keep water out and I

> sometimes use them for

> bathtime too. You can get them at I think pretty

> much any pharmacy, and you

> can get a headband type cover to keep them in better

> from " The Right Start "

> catalog...they have a website too. Works well. Also,

> there are open caps

> that can go over their heads to keep water out of

> the eyes, etc that might

> help too. We also have a sprayer attached to the

> utility sink faucet (where

> we give baths (saves the back and fits them well))

> which is great for

> directing the water away from the ears. Our ped also

> recommended that,

> rather than using q-tips, take the corner of a

> tissue and roll it in your

> fingers making a long pointy needle shape. You can

> put that in the ears all

> the way in to soak up extra fluid without any risk

> of damaging the drum

> because it will collapse before it gets near that

> area. We've been doing

> that with no problems at all. Just some more

> suggestions for anyone on the

> list who might be looking for something like this

> who also has ear trouble.

>

>

> Have a nice day,

>

>

> My daughter has the worst problems with her ears.

> We had tubes put in last

> year due to a flat tynpanegram....since she has had

> constant fluid, drainage

> and infections! It is enough to drive a person

> nuts. I think I know the

> problem though...water is getting in her ears during

> bathtime. I have

> started to dab with a q-tip right after bath and

> then we blow dry her hair

> and aiming the air into her ears a little. She

> hasn't had much drainage

> since. For awhile I was taking her to the ENT each

> week to have her ears

> cleaned out....quite an ordeal with a four year old,

> her two year old twin

> and a newborn with the ENT being 40 miles a way. I

> have an appt. this month

> and we are having her hearing tested again.

>

> With ya on the ear problems,

>

>

>

> ______________________________________________

> FREE Personalized Email at Mail.com

> Sign up at http://www.mail.com/?sr=signup

>

__________________________________________________

[Guest guest]

Hi. My daughter Kaitlyn has been getting infusions for 6 years. She is 9.

We have had vomiting after a treatment. It is awful, but usually the next

day is okay. Prayers are with you. Xan

here we go again

> Has anyone had vomiting non stop for 2 hours as a post infusion reaction?

We

> get home from Cassie's infusion last night and she could not stop the

> vomiting. Last time she vomited with the infusion and I thought it was

> because all the meds they had given her in the E.R. from the whole port

> fiasco. Now, I am wondering.

>

> Cassie's infusion went just as terrible yesterday in the hospital with the

> port. She had to be accessed 3 times and even though the medicine never

> infiltrated into the chest, we had a terrible time keeping the thing from

> occluding. She literally had to be totally still and not be able to move

at

> all. Every time she would change any position, the alarms would go off

and

> the nurse would have to figure out a new position. Needless to say, a

> normally 4 hour infusion lasted about 7 hours of being still. That was

> difficult for Cassie because her arm kept falling asleep and she would get

> all kinds of cramps. We spoke to the immunologist and are going to see

the

> surgeon before her next infusion to see what he thinks. Personally, I

think

> they should just take the thing out and put in a new one instead of keep

> trying to figure out what is wrong with this one. Lots of nurses have

> commented that the port has shifted. It is now almost under Cassie's

armpit

> and it was right above her breast bone when they initially put it in 4

years

> ago.

>

> Well, I do hope that all are doing well today. We will keep you all in

our

> prayers.

>

> Belinda Rose,

> Mom to Allyssa (10) and Cassie (8), igg immunodeficient, asthma,

sinusitis,

> IVIG for 6 years, heart condition

>

>

>

[Guest guest]

Don't worry about it. Great encouragers need encouragement too!

8o)

Keep us posted on Brittany.

God bless,

Wenoka

Re: here we go again

In a message dated 4/23/2005 10:02:23 A.M. Eastern Daylight Time,

yhwhworship@... writes:

(PS - Sometimes there may not be time for a written response, but with these

ladies, I can guarantee that there will ALWAYS be a praying response!)

I have to apologize to everyone. I am sooo sorry. I was just so upset and

worried and at times like that we can feel no one cares. I know this isn't

true

at all. I know ALL of us on here care about each other very much and we are

ALL have kids with a PID that we love and care for daily. Please except my

apologies!

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

Don't worry about it. Great encouragers need encouragement too!

8o)

Keep us posted on Brittany.

God bless,

Wenoka

Re: here we go again

In a message dated 4/23/2005 10:02:23 A.M. Eastern Daylight Time,

yhwhworship@... writes:

(PS - Sometimes there may not be time for a written response, but with these

ladies, I can guarantee that there will ALWAYS be a praying response!)

I have to apologize to everyone. I am sooo sorry. I was just so upset and

worried and at times like that we can feel no one cares. I know this isn't

true

at all. I know ALL of us on here care about each other very much and we are

ALL have kids with a PID that we love and care for daily. Please except my

apologies!

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

Steph,

I can sooo relate to your post. My son is 16 year old Asperger's

Syndrome. When you described the meltdown, it was my son to a tee.

We have been very lucky that SO FAR (crossing fingers) that he has

not melted down in school yet. The part that really struck me was

when you mentioned that his Dad and stepmom want to take him and

that they feel that it's just " normal " teenage acting out. Boy, is

that my ex-husband. My son was living with him for the last 3 years

and my ex is in complete denial about the Asperger's......thinks

that my son can control all of his outbursts and all of his

behavior. He went so far as to put my son in a HOMELESS SHELTER this

past January. When I went there and tried to get him out, they would

not let me. They kept telling me that since I didn't sign him in, I

couldn't sign him out. My poor son had to stay there until April

10th. I had to pay my attorney $4000 to have an emergency hearing to

get him out and now I have custody and he lives with me. But my ex

still tells him all the time on the phone and in person that this is

all within his control! My son's therapist has a fit when we tell

her this. We are going to try to have my ex take my son to the

therapist so SHE can try to tell him to LAY OFF telling my son these

things, which just destroy his self-esteem and make him angry. I

just keep telling my son that sometimes when a parent is in denial,

it's because they are so hurt and heartbroken over this that it

takes time for them to accept it and that eventually, hopefully, he

will come around and accept this. We have another son, who is 11,

who is autistic. My ex is not in denial regarding him, but he is

severly autistic.

Hang in there! I don't understand why the school won't listen to you

either as far as not touching your son when he's having a meltdown.

[Guest guest]

Steph,

I can sooo relate to your post. My son is 16 year old Asperger's

Syndrome. When you described the meltdown, it was my son to a tee.

We have been very lucky that SO FAR (crossing fingers) that he has

not melted down in school yet. The part that really struck me was

when you mentioned that his Dad and stepmom want to take him and

that they feel that it's just " normal " teenage acting out. Boy, is

that my ex-husband. My son was living with him for the last 3 years

and my ex is in complete denial about the Asperger's......thinks

that my son can control all of his outbursts and all of his

behavior. He went so far as to put my son in a HOMELESS SHELTER this

past January. When I went there and tried to get him out, they would

not let me. They kept telling me that since I didn't sign him in, I

couldn't sign him out. My poor son had to stay there until April

10th. I had to pay my attorney $4000 to have an emergency hearing to

get him out and now I have custody and he lives with me. But my ex

still tells him all the time on the phone and in person that this is

all within his control! My son's therapist has a fit when we tell

her this. We are going to try to have my ex take my son to the

therapist so SHE can try to tell him to LAY OFF telling my son these

things, which just destroy his self-esteem and make him angry. I

just keep telling my son that sometimes when a parent is in denial,

it's because they are so hurt and heartbroken over this that it

takes time for them to accept it and that eventually, hopefully, he

will come around and accept this. We have another son, who is 11,

who is autistic. My ex is not in denial regarding him, but he is

severly autistic.

Hang in there! I don't understand why the school won't listen to you

either as far as not touching your son when he's having a meltdown.

[Guest guest]

>From: " cooldudesmom " <jstewart15@...>

>Steph,

>

>I can sooo relate to your post. My son is 16 year old Asperger's

>Syndrome. When you described the meltdown, it was my son to a tee.

I am so glad that someone recognized something in what I wrote. I have had

so many problems explaining his meltdowns and having someone actually

believe that it was a meltdown - not a deliberate show of defiance and

obstinacy. I can give them material that explains his meltdowns and his

diagnoses and they will still say that he is doing it intentionally. I have

the feeling that I have become known as the mother that will do anything to

make excuses for her child.

>We have been very lucky that SO FAR (crossing fingers) that he has

>not melted down in school yet. The part that really struck me was

>when you mentioned that his Dad and stepmom want to take him and

>that they feel that it's just " normal " teenage acting out.

His dad is the king of denial. I was married to him for eleven years and

for a large majority of that time it was a very abusive marriage. To hear

him after we split - he never touched me. This is the environment that

grew up in. I think the reason that the schools don't believe me is

that when meltsdown he first gets loud then agitated then as he melts

down he can become physically aggressive if the person trying to get control

of him gets in his face or physically tries to move him.

is dad's only living child. We had a stillborn son eighteen months

before was born (and then he was born at 32 weeks after weeks of

leaking amniotic fluid.) Dad and stepmom have been trying to have a child

but with no luck. She had a tubal pregnancy last spring but has been unable

to conceive since then. It's almost funny that she is the reason that he

and I ended up together in the first place (she insisted that he act on his

attraction) and when he and I split - the first thing I told him was to try

and find her again as I knew he had never gotten over her. I am thrilled

that they are together and happy - but I don't want them just swooping in

and taking away.

Boy, is

>that my ex-husband. My son was living with him for the last 3 years

>and my ex is in complete denial about the Asperger's......thinks

>that my son can control all of his outbursts and all of his

>behavior. He went so far as to put my son in a HOMELESS SHELTER this

>past January. When I went there and tried to get him out, they would

>not let me. They kept telling me that since I didn't sign him in, I

>couldn't sign him out. My poor son had to stay there until April

>10th. I had to pay my attorney $4000 to have an emergency hearing to

>get him out and now I have custody and he lives with me.

Oh my god! How horrible for you. I would have just died had that happened

to me. Thank god that you now have custody!!!

But my ex

>still tells him all the time on the phone and in person that this is

>all within his control!

Why can't non custodial parents just get it that they are just fracturing

their child's world when they do that? I have explained to that I am

friends with his dad because we all love him and want the best for him -

that we are going to present a united front on discipline -etc. I truly

feel (and it is my parental motto) that a child is most blessed when they

have all the adults in their lives being friendly and working together for

the child's best interest.

My son's therapist has a fit when we tell

>her this.

I don't blame her!

We are going to try to have my ex take my son to the

>therapist so SHE can try to tell him to LAY OFF telling my son these

>things, which just destroy his self-esteem and make him angry.

Good idea!

I

>just keep telling my son that sometimes when a parent is in denial,

>it's because they are so hurt and heartbroken over this that it

>takes time for them to accept it and that eventually, hopefully, he

>will come around and accept this.

You handled it wonderfully.

We have another son, who is 11,

>who is autistic. My ex is not in denial regarding him, but he is

>severly autistic.

>Hang in there! I don't understand why the school won't listen to you

>either as far as not touching your son when he's having a meltdown.

I will hang in there. I don't have any choice. This child is my life. I

very nearly lost him before he was born - and have worried since he was born

prematurely that I would lose him. I want him to grow up to be able to be

independent - to be able to go for whatever passion fuels his life and to be

able to reach for the stars and touch them.

>

Thank you so much for your support . I appreciate it so very

much!

Hugs

Steph

(PS I have a daughter named ...)

[Guest guest]

>From: " cooldudesmom " <jstewart15@...>

>Steph,

>

>I can sooo relate to your post. My son is 16 year old Asperger's

>Syndrome. When you described the meltdown, it was my son to a tee.

I am so glad that someone recognized something in what I wrote. I have had

so many problems explaining his meltdowns and having someone actually

believe that it was a meltdown - not a deliberate show of defiance and

obstinacy. I can give them material that explains his meltdowns and his

diagnoses and they will still say that he is doing it intentionally. I have

the feeling that I have become known as the mother that will do anything to

make excuses for her child.

>We have been very lucky that SO FAR (crossing fingers) that he has

>not melted down in school yet. The part that really struck me was

>when you mentioned that his Dad and stepmom want to take him and

>that they feel that it's just " normal " teenage acting out.

His dad is the king of denial. I was married to him for eleven years and

for a large majority of that time it was a very abusive marriage. To hear

him after we split - he never touched me. This is the environment that

grew up in. I think the reason that the schools don't believe me is

that when meltsdown he first gets loud then agitated then as he melts

down he can become physically aggressive if the person trying to get control

of him gets in his face or physically tries to move him.

is dad's only living child. We had a stillborn son eighteen months

before was born (and then he was born at 32 weeks after weeks of

leaking amniotic fluid.) Dad and stepmom have been trying to have a child

but with no luck. She had a tubal pregnancy last spring but has been unable

to conceive since then. It's almost funny that she is the reason that he

and I ended up together in the first place (she insisted that he act on his

attraction) and when he and I split - the first thing I told him was to try

and find her again as I knew he had never gotten over her. I am thrilled

that they are together and happy - but I don't want them just swooping in

and taking away.

Boy, is

>that my ex-husband. My son was living with him for the last 3 years

>and my ex is in complete denial about the Asperger's......thinks

>that my son can control all of his outbursts and all of his

>behavior. He went so far as to put my son in a HOMELESS SHELTER this

>past January. When I went there and tried to get him out, they would

>not let me. They kept telling me that since I didn't sign him in, I

>couldn't sign him out. My poor son had to stay there until April

>10th. I had to pay my attorney $4000 to have an emergency hearing to

>get him out and now I have custody and he lives with me.

Oh my god! How horrible for you. I would have just died had that happened

to me. Thank god that you now have custody!!!

But my ex

>still tells him all the time on the phone and in person that this is

>all within his control!

Why can't non custodial parents just get it that they are just fracturing

their child's world when they do that? I have explained to that I am

friends with his dad because we all love him and want the best for him -

that we are going to present a united front on discipline -etc. I truly

feel (and it is my parental motto) that a child is most blessed when they

have all the adults in their lives being friendly and working together for

the child's best interest.

My son's therapist has a fit when we tell

>her this.

I don't blame her!

We are going to try to have my ex take my son to the

>therapist so SHE can try to tell him to LAY OFF telling my son these

>things, which just destroy his self-esteem and make him angry.

Good idea!

I

>just keep telling my son that sometimes when a parent is in denial,

>it's because they are so hurt and heartbroken over this that it

>takes time for them to accept it and that eventually, hopefully, he

>will come around and accept this.

You handled it wonderfully.

We have another son, who is 11,

>who is autistic. My ex is not in denial regarding him, but he is

>severly autistic.

>Hang in there! I don't understand why the school won't listen to you

>either as far as not touching your son when he's having a meltdown.

I will hang in there. I don't have any choice. This child is my life. I

very nearly lost him before he was born - and have worried since he was born

prematurely that I would lose him. I want him to grow up to be able to be

independent - to be able to go for whatever passion fuels his life and to be

able to reach for the stars and touch them.

>

Thank you so much for your support . I appreciate it so very

much!

Hugs

Steph

(PS I have a daughter named ...)

[Guest guest]

>From: " cooldudesmom " <jstewart15@...>

>

>Steph,

>

>Thank you so much for your kind words! It's almost spooky how much

>we have in common.

It really is spooky - but cool!

I, too, was in that abusive marriage for 13

>years......verbal and physical. He got married again 2 months after

>we got divorced. That marriage ended last year and he moved in with

>yet another woman the week after he moved out from wife #2. They got

>married a few months ago.....that fits the pattern of controlling,

>abusive men perfectly!

Absolutely. Don't you wish that we had better radar when we met them? I

mean - I wouldn't give up my son for anything - but I don't think I would

have stayed in the marriage so long. There were other things that also led

to the demise of my marriage - betrayal so serious that I couldn't forgive

it (no . .. not another woman). I just think and I would be

healthier mentally had I ended it sooner.

Also, when you said that you very nearly lost

>your child....when I was pregnant with my older Asperger's son, I

>got meningitis at 11 weeks...none of the doctors could tell me what

>this might do to my baby. They had never treated a pregnant woman

>with meningitis. Then at 35 weeks of pregnancy, I developed toxemia

>and he had to be delivered 5 weeks early. 4 days after he was born,

>he was so jaundiced that he had to be hospitalized. His bilirubin

>level was 23 (anything over 20 is brain damaging levels) for 2 days

>before it finally came down. He literally came within minutes of

>having a complete exchange transfusion where they would remove all

>of his blood and replace it with donated blood.

Oh my god. How traumatic for you. A friend's daughter had a bili level of

20 so I know how frightening that can be.

Then when I was

>pregnant with the autistic 11 year old, that was also a miracle that

>I carried him to term. I had had cervical cancer and had most of my

>cervix removed. My doctor was ADAMANT that I not get pregnant. I

>assured him that I would not...but, whoops! 8 months later I was

>pregnant..and with hardly a cervix at all. I went on complete

>bedrest for 4 months and he came 5 weeks early (but still weighed

>7'4 " ). In addition to the severe autism, he is also legally blind.

>He has occular albinism (it's being an albino, except just in the

>eyes) which is VERY rare. So he has the double challenge of that.

Double oh my god. Obviously your precious eleven year old was meant to be

born - was meant to have a very special purpose here on earth.

>But he is SO smart and happy and they are both the joys of my life.

My children are the most important thing in the world to me. I love them

more than I thought I could ever love anyone.

>I have a 23 year old daughter (different father) who is fine and

>blessed me with a grandson 4 months ago.

I have three older daughters - the youngest one has blessed me with a

granddaughter - grandson and is now pregnant with another son. I just love

being a grandma!

It feels wonderful to be

>able to correspond with people who UNDERSTAND what all of this feels

>like and it really helps!

I feel exactly the same way. I think perhaps in some ways we are sisters in

spirit.

>Best wishes and hang in there!

Thanks - you too.

>

I tried taking to school today - just like Monday and yesterday he

was fine as we left the house and by the time we made it to school (three

miles away) he was apprehensive and anxious. The principal told him to go

back home and asked me to get another appointment with the med dr. She is

concerned that the she is seeing is not the she knew last

year. I talked with his last year's resource teacher who said that she had

been trying to get ahold of me - that his counselor had gone against the IEP

and had scheduled him for more classes than we agreed to last spring. We

had an impromptu conference and she mentioned that she thought that I needed

to have him see the TS doc in Iowa City again. She mentioned his lack of

social skills - how he misreads cues and prompts. I believe she is finally

seeing what I have seen all along. I am going to call the TS doc - but it

may be a while before I can get him in. They are very busy as it is at the

University Hospital (biggest hospital in Iowa). Perhaps we can finally get

things straightened out. We are going to modify the IEP as well - take him

back to a little over a half day and then work on the other classes at home

(kinda like homeschooling for those classes) She is his algebra teacher and

said that she would come over every week or so to help him with those

concepts that he doesn't get. This is how we did last year and by the end

of the year he was going 6 of 7 classes. Working on some of the classes at

home also means that he won't get too credit deficit.

On top of everything today my daughters husband called to tell me that

had made the newspaper. Right there in the police blotter column it

lists his name address and charges. Boy what a set up for teasing and

bullying at school. I always thought that they couldn't put a child's name

in the paper unless they were over 18.

Well better run. I gotta get up really early in the morning. I am hoping to

get to work at 7 so that I can be off work by noon. Got bills to pay

tomorrow afternoon.

Take care and hugs!

Steph

[Guest guest]

, I am glad it sounds like you are making progress with the school!! I would call the paper and complain. If they cannot release the name they should be aware they broke a law!

__________________________________________________

[Guest guest]

In a message dated 4/21/2005 3:02:09 PM Pacific Standard Time,

BBsmart2@... writes:

Britt came home with a swollen painful, paritoid gland today.

Janet--

I can't believe this is happening again!! I can't remember, did they ever

test Britt for Sjogren's Syndrome?? If she had it, it would be completely

normal for her Paratoid glands to be swollen and painful.

Sandi, Mom to , age 12. CVID, Tetrology of Fallot, Pulmonary valve

transplant (2003), asthma, Carnitine deficiency, GERD

[Guest guest]

Dear Janet

So sorry about Brittany, I will say a prayer for her that she heals quickly

and the pain gets better, and of course for your strength.

Hang in there

Amy

here we go again

>

>Britt came home with a swollen painful, paritoid gland today. We are

already

>scheduled to see her immune doc tom. in Cleveland. Hope now that she is

on

>IVIG she will only have to take oral antibiotics. Every time before she

had

>to have IV antibiotics. This is soooo painful for her, I hate seeing her

in

>this much pain.

>

>Janet, Mom to Brittany, CVID, age 14

>

>

>

>

[Guest guest]

In a message dated 4/22/2005 4:04:54 P.M. Eastern Daylight Time,

sassykay59@... writes:

I can't believe this is happening again!! I can't remember, did they ever

test Britt for Sjogren's Syndrome?? If she had it, it would be completely

normal for her Paratoid glands to be swollen and painful.

Hi Sandi, I just have a second but Brittany was admitted to the hospital.

Her paritoid is infected again! No, they never checked for Sjogrens, that I

know of. Her immune doctor did order blood work to check a few things. The

hospital had to stick her over and over to get the IV started. We thought is

was

because she was dehydrated but even after fluids her IV had to be changed in

the middle of the night and again it took several people and several pokes!

Her IVIG is going to be every 3 weeks now. I don't know how we are going to do

that because of her veins! It was just awful all night!!

BTW, Thanks for responding no one else did after 2 emails!!

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

So sorry to hear she's in the hospital again! I hope they get this figured

out and under control soon! Sending positive thoughts and prayer your way...

-- Re: here we go again

In a message dated 4/22/2005 4:04:54 P.M. Eastern Daylight Time,

sassykay59@... writes:

I can't believe this is happening again!! I can't remember, did they ever

test Britt for Sjogren's Syndrome?? If she had it, it would be completely

normal for her Paratoid glands to be swollen and painful.

Hi Sandi, I just have a second but Brittany was admitted to the hospital.

Her paritoid is infected again! No, they never checked for Sjogrens, that I

know of. Her immune doctor did order blood work to check a few things. The

hospital had to stick her over and over to get the IV started. We thought

is was

because she was dehydrated but even after fluids her IV had to be changed

in

the middle of the night and again it took several people and several pokes!

Her IVIG is going to be every 3 weeks now. I don't know how we are going to

do

that because of her veins! It was just awful all night!!

BTW, Thanks for responding no one else did after 2 emails!!

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

Dear Janet

Make sure they are using hot packs to dilate the veins before they try to

stick her and ask for who ever is the best from the start. I know you may

already be doing this, but many nurses will try once or twice because that

is policy before asking for help. Many hospitals will have Anesthesia start

the hard starts and they typically get it the first time.

Some Doctors will feel children who have tough starts should get ports. It

may be something to discuss also. My immunologist didn't feel it was a safe

option for , but that isn't the case all the time.

Hang in there

Amy

I hope she feels better really soon.

Take care

Amy

Re: here we go again

>

>

>In a message dated 4/22/2005 4:04:54 P.M. Eastern Daylight Time,

>sassykay59@... writes:

>

>I can't believe this is happening again!! I can't remember, did they ever

>test Britt for Sjogren's Syndrome?? If she had it, it would be completely

>normal for her Paratoid glands to be swollen and painful.

>

>

>

>Hi Sandi, I just have a second but Brittany was admitted to the hospital.

>Her paritoid is infected again! No, they never checked for Sjogrens, that

I

>know of. Her immune doctor did order blood work to check a few things. The

>hospital had to stick her over and over to get the IV started. We thought

is was

>because she was dehydrated but even after fluids her IV had to be changed

in

>the middle of the night and again it took several people and several

pokes!

>Her IVIG is going to be every 3 weeks now. I don't know how we are going

to do

>that because of her veins! It was just awful all night!!

>BTW, Thanks for responding no one else did after 2 emails!!

>

>Janet, Mom to Brittany, CVID, age 14

>

>

>

>

[Guest guest]

Janet,

Poor Brittney!

Rather than a port, is there any chance of doing daily subq injections? I

remember you saying Brittney has no body fat, but if it were broken down to

daily injections instead of 1 or 2 infusions/week, she may well do ok with that.

And talk about keeping the levels even! Plus, since she is 14, she could

probably do it herself after initial supervision. It may well be a great way to

help her in preparing to manage her health after she is no longer at home.

After reading the recent posts about daily injections, my husband and I have

discussed it and are planning to bring it up to the doc at our next appointment.

Not that has ANY problem with having enough body fat, but it sounds like

that is not an issue with the daily injections.

God bless,

Wenoka

(PS - Sometimes there may not be time for a written response, but with these

ladies, I can guarantee that there will ALWAYS be a praying response!)

Re: here we go again

In a message dated 4/22/2005 4:04:54 P.M. Eastern Daylight Time,

sassykay59@... writes:

I can't believe this is happening again!! I can't remember, did they ever

test Britt for Sjogren's Syndrome?? If she had it, it would be completely

normal for her Paratoid glands to be swollen and painful.

Hi Sandi, I just have a second but Brittany was admitted to the hospital.

Her paritoid is infected again! No, they never checked for Sjogrens, that I

know of. Her immune doctor did order blood work to check a few things. The

hospital had to stick her over and over to get the IV started. We thought is

was

because she was dehydrated but even after fluids her IV had to be changed in

the middle of the night and again it took several people and several pokes!

Her IVIG is going to be every 3 weeks now. I don't know how we are going to

do

that because of her veins! It was just awful all night!!

BTW, Thanks for responding no one else did after 2 emails!!

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

Janet, we send all our prayers to you and your family. Dawn mother of

--- BBsmart2@... wrote:

>

> In a message dated 4/22/2005 4:04:54 P.M. Eastern Daylight Time,

> sassykay59@... writes:

>

> I can't believe this is happening again!! I can't remember, did they

> ever

> test Britt for Sjogren's Syndrome?? If she had it, it would be

> completely

> normal for her Paratoid glands to be swollen and painful.

>

>

>

> Hi Sandi, I just have a second but Brittany was admitted to the

> hospital.

> Her paritoid is infected again! No, they never checked for Sjogrens,

> that I

> know of. Her immune doctor did order blood work to check a few things.

> The

> hospital had to stick her over and over to get the IV started. We

> thought is was

> because she was dehydrated but even after fluids her IV had to be

> changed in

> the middle of the night and again it took several people and several

> pokes!

> Her IVIG is going to be every 3 weeks now. I don't know how we are going

> to do

> that because of her veins! It was just awful all night!!

> BTW, Thanks for responding no one else did after 2 emails!!

>

> Janet, Mom to Brittany, CVID, age 14

>

>

>

>

[Guest guest]

Janet,

I am sorry I ddin't respond. It was not becasue I didn't care. I have been

having my own medical problems and I am still a newbie learning what all

these disorders are for Mathieu. I can't imagine how frustrating it is for

you to have started her on a treatment plan, that is now beginning to be

ineffective. I totally sympathize with the vein issues. Mathieu (27

months) was going in once a week for blood withdrawls and his arms looked

awful, not to mention the fact that he doesn't understand why we are

torturing him.

I hope they get it under control, and I hope Brittany and the family can

find peace and strength to get through the challenges. I may not respond

everytime, but my heart hurts everytime I read each and evryone one of your

difficulties on this listserv.

Keep us posted on her health,

Jay

Mom to

6 yrs

Mathieu (27 months) undiagnosed since 5 months old, recently tested low on

IgG and IgA. Anxious for treamtent and diagnosis!!!! Hisotry of chronic

fevers, diarrhea, conjuctivitis, sinus infections, croup, bronchitis, ear

infections, extremely slow growth (below 3%), poor vision, but excellent

strength and endurance which keeps me hopeful.

> that because of her veins! It was just awful all night!!

> BTW, Thanks for responding no one else did after 2 emails!!

>

> Janet, Mom to Brittany, CVID, age 14

>

[Guest guest]

Janet,

I, too, am sorry I didn't post right away. In order to have some sense of

control over these health issues, my way of dealing with them is to research,

research, research. My plan was to look up the gland Brittany is having trouble

with and try to figure out some new angle on why it is a recurrent problem.

Wow, in writing that seems like a lofty ideal, but I've just seen so many people

on this list come up with new suggestions or the benefit of experience, I

would like to try to do that too.

Of course, I haven't had the chance to do the research! But I was thinking of

you and Brittany, and you were in our prayers. We sure hope she's responding

to treatment and will be feeling better soon...

(mom to , 6yrs old, polysaccharide antibody def)