Re: Skyeler

[Guest guest]

Sharon,

You don't need to try to learn, it will just happen!! Trust me. If the

Docs think it is viral, they don't give shots of Rocephin. The tricky thing

is, our kids can get viral infections which frequently turn into bacterial

infections. That is a very common occurrence here. Also, most of our kids

can go from viral to bacterial very quickly. My son has literally gotten

raging ear infections over night. I hope the Rocephin is doing it's job--it's

an excellent antibiotic. When 's ears are infected for over two weeks

at a time, he starts asking for the Rocephin shot, because he knows he will

feel better the next day. How is feeling today?

Sandi--Mom to , age 10. Suspected IgA def., Tetrology of Fallot, chronic

sinusitis, chronic ear infections, asthma, severe allergies, GERD. Heart

surgery pending.

[Guest guest]

In a message dated 3/15/2003 10:30:16 AM Pacific Standard Time,

SGrubb@... writes:

> Is it just , or do your kids complain about the Rocephin injection

> being very painful?

>

> Lacey is one who never complains about getting stuck. She never

> cries........just puts her arm out and barely flinches when she gets stuck

> for IV's , lab draws, even attempts at a picc line....even if she has to be

> stuck several times. However, when she has to get shots in her legs, she

> definitely cries big tears!!

Belinda

Lacey's mom, (15, CdLS, IgG deficiency)

Pittsburg, CA

<A HREF= " http://www.cdls-support.org/family/aug2001/index.html " >CdLS OSG:

Featured Family of August 2001</A>

[Guest guest]

Skyeler

Hello to all. I am new in this group and I come to you will love in

my heart for all of you as well a need.

My son, Skyeler, is now 6 years old and has been sick since he has

been 4 months old. A short history of what we have been through

includes, being born without a soft spot and cranio surgery to

correct, over 25 ear infections our first year of life, 2 set of

tubes at ages 1 and 3. 3 " window " sinus surgeries, 4 sinus

irrigation surgeries, tonsils and adnoids removed.

Finally after many specialist and me being to think I was crazy,

Skyeler was diagnosised with CVID in September 2002. We began IVIG

treatments in October 2002. We have now completed 5 IVIG treatments

and our 6th one is scheduled this week (3/21).

Recently on one of our sick visits, our doctor informed us that on a

scale of 1-10, Skyeler has improved a 1. We have been referred to

National Jewish Medical Center in Denver, CO. for a complete

evaluation of his case.

My questions include have any of you experienced the same type of

findings with IVIG treatment, if so what are you doing now? Also,

have any of you been to National Jewish for treatment and what were

your feelings about your experience.

I am really eager to hear from any and all of you. As I tell my

husband () this is really taking a toll on me as I work full-

Welcome ,

Sharon here, mom to 11 Igg def. First let me say welcome to this group.

I am new here also, and can tell you the group is wonderful. This is a group

of incredibly caring, knowledgeable caregivers. My daughter also has

been sick most of her life, with 5 sets of ear tubes, tonsillectomy, hernia

repairs, chronic sinus infections, chronic chronic stomach pain (still have not

figured this one out, nothing works all that great but she deals with it) . I

too work full time, so I completely understand where you are coming from. It

absolutely does take a toll on you. has received 3 IVIG treatments, and

I can honestly say that I do not see much improvement, HOWEVER I am very hopeful

as says she thinks they are helping some. I think the main thing is

to not give up hope. I know that this is easier said than done, especially when

you are running on empty .

From what I have been told it can take up to 6 months or more to really see an

improvement. I highly encourage you to ask as many questions as you can and

VENT, VENT VENT. Also , have you contacted the IDF foundation? They can send

you some really good reading material and give you the name of a representative

in your local area. Most everyone here can relate to what you are going through

and can offer valuable advice, and support, and trust me you WILL need it.

Thanks to all the well wishes for . I wish I could say she is doing

better, however she woke up today (4th day of fever) with a 102.7 fever and is

miserable. I can get it down with meds, and baths, but this offers temporary

relief. It is really wearing her down. . I feel so bad for her. The Rocephin

did not touch it which leads me to believe it is viral. Is it just , or

do your kids complain about the Rocephin injection being very painful?

is a trooper with lab sticks and never flinches with her IVIG's, but when she

has to get Rocephin, oh my gosh!!! Her IVIG is not until Wednesday, so I am

hopeful that will help her ward whatever she is dealing with off. The weather

here is beautiful sunny and 60. We had 20's last week.

Hope everyone has a good weekend

Love and hugs to all

Sharon

Mom to 11 IGG def 20 Wife to Ken

11 PID

[Guest guest]

O.K. Correction,

Just hung up from the doctor. (I am still learning bear with me) Strep throat,

and ear infections are bacterial not viral, thus the need for the Rocephin.

Yi Yi Yi.... SO MUCH TO LEARN.

Sharon

Lauerns mom

advice stated here are the sole responsibility of the poster and should not be

taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: /messages

[Guest guest]

Sharon,

Thank you for the words of encouragement. It sounds like you have had your

hands full for the last few days!!

I hope your daughter is doing better by the time you receive this message.

The wild thing about my son and his CVID is that he does not run a

temperature so for the last 6 years when I tell his doctors he is not feeling

well they would blow me off because he was not feverish!! I have now found

who I believe to be the best doctors in our area.

I have not recently contacted the IDF but have been receiving mailings from

them and surveys for the past few years. I was unaware that they had area

representatives. Thank you for this bit of information.

I will keep you and in my prayers!

[Guest guest]

Belinda,

Thanks for your response. I remember as a child getting Bi-Cyllin (spelling???)

shots. They were so painful. I have horrible memories. My mom tells me I

actually would pass out in the doctors office, from the anxiety. I remember

this!!!

All I can say is that our kids have to put up with so much, and when they are

very sick their coping skills are at a minimum. When gets to this

point, there is little I can do to console her. 4 days of 102 ^^ and up fever

, and muscle/joint ache , loss of hearing (no ear pain, but both ears are

infected??), stomach pain , hot - red throat, strep throat headache, and

just feels miserable!!!! I can hardly blame her for not wanting to deal with

any more. It is when we get to this point that we both have a difficult time

coping. If it were not for my faith , I think I would wither away, or you would

find me in fetal position somewhere whimpering. " I " would rather take the

pain than see her suffer like this!!!

Sorry for my negativity but I am sleep deprived, and worried sick as I just took

her temp and we are spiking again and she is moaning in discomformt. Please

pray for us!!!! I am signing off for the time being...... Thanks for

listening and keeping me somewhat sane. : - (

Tomorrow will be another day....... One day at a time...........

Love and Hugs to you all

Sharon

: Lacey449@... [mailto:Lacey449@...]

Sent: Saturday, March 15, 2003 5:22 PM

Subject: Re: Skyeler

In a message dated 3/15/2003 10:30:16 AM Pacific Standard Time,

SGrubb@... writes:

> Is it just , or do your kids complain about the Rocephin injection

> being very painful?

>

> Lacey is one who never complains about getting stuck. She never

> cries........just puts her arm out and barely flinches when she gets stuck

> for IV's , lab draws, even attempts at a picc line....even if she has to be

> stuck several times. However, when she has to get shots in her legs, she

> definitely cries big tears!!

Belinda

Lacey's mom, (15, CdLS, IgG deficiency)

Pittsburg, CA

<A HREF= " http://www.cdls-support.org/family/aug2001/index.html " >CdLS OSG:

Featured Family of August 2001</A>

[Guest guest]

Hi ,

Welcome to the group!!! My son , who is now 10 has CVID

also and when he was little he also never ran a fever. When he was

on the IVIG for about a year he started to run fevers when he got

ill. Now I look at it as a good thing because his immune system is

at least responding right!!!! I just get nervous when it gets too

high!

Take care,

mom to , CVID, ADHD, & dyslexia

[Guest guest]

Sharon:

Yes, the Rocephin shots are terribly painful. calls them the " yellow

shots " and whenever I prepare her by telling her we are getting a stick that

day she always asks, " Is it the yellow shot? " and is relieved when it's not!

They mix lidocaine or something in ours but I hear that burns going in, so it

has its downfalls too. We've tried the soft fleshy part of the hip (top of

the buttocks) to see if that would be better but it was worse.

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4, dairy

intolerant -- currently has polysaccharide antibody def, previously had

transient IgG, IgA, t-cell & other defs)

[Guest guest]

LOL! Hey have you been talking to Pattie?? Her favorite expression is Aye Yi Yi

Yi!!!! LOLOL!!! Hang in there, Sharon, you'll learn! I'm a regular walking

encyclopedia now I think...LOL!!!

Diane, Mom to Kody

RE: Skyeler

O.K. Correction,

Just hung up from the doctor. (I am still learning bear with me) Strep throat,

and ear infections are bacterial not viral, thus the need for the Rocephin.

Yi Yi Yi.... SO MUCH TO LEARN.

Sharon

Lauerns mom

advice stated here are the sole responsibility of the poster and should not be

taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: /messages

[Guest guest]

Hi

was diagnosed when he was about a year of age but they

did not treat him until after he was 2 and had brake thru

infections. For the reason of the immune system not being fully

developed until after the age of 2. He stoppped growing and loosing

weight also which was another huge push in that direction. I didn't

notice a huge change until we were closer to the 1 year mark. It was

more slow steady improvements. Before I new it though, he never got

sick, he did awesome on the IVIG, just the occasional stomach bug,

mild colds.

Take care

[Guest guest]

---Hello and welcome. you have come to the right place. This is a

wonderful web site. I am so sorry for everything you have been

through with skyeler. Where do you live? Do you have good doc's?

My name is Karin,, my son is IgA def. He to had alot of ear

infections his first year of life.....52 to be exact. It took until

he was about 15 months old and alot of tests, docs etc. (and everyone

including me thinking I was crazy) for to be diagnoised.

Although I don't know anything about IVIG the people here do.

So again welcome .

Karin, mom to , IgA def, chronic sinus infections and uri's,

asthma and , asthma

In , " " <nf0608@a...> wrote:

> Hello to all. I am new in this group and I come to you will love in

> my heart for all of you as well a need.

>

> My son, Skyeler, is now 6 years old and has been sick since he has

> been 4 months old. A short history of what we have been through

> includes, being born without a soft spot and cranio surgery to

> correct, over 25 ear infections our first year of life, 2 set of

> tubes at ages 1 and 3. 3 " window " sinus surgeries, 4 sinus

> irrigation surgeries, tonsils and adnoids removed.

>

> Finally after many specialist and me being to think I was crazy,

> Skyeler was diagnosised with CVID in September 2002. We began IVIG

> treatments in October 2002. We have now completed 5 IVIG treatments

> and our 6th one is scheduled this week (3/21).

>

> Recently on one of our sick visits, our doctor informed us that on a

> scale of 1-10, Skyeler has improved a 1. We have been referred to

> National Jewish Medical Center in Denver, CO. for a complete

> evaluation of his case.

>

> My questions include have any of you experienced the same type of

> findings with IVIG treatment, if so what are you doing now? Also,

> have any of you been to National Jewish for treatment and what were

> your feelings about your experience.

>

> I am really eager to hear from any and all of you. As I tell my

> husband () this is really taking a toll on me as I work full-

> time, my husband is a fireman and we also have a 9 yr old daughter

> (Sammantha).

>

> Thanks for listening,

>