Here we go AGAIN

[Guest guest]

Amy,

I hope things are going a little better for you. I just thought I would

share that my daughter is on her second port and it has been the best thing

ever. She was a hard stick and now one stick and we are done. Hope you

guys can make the best decision for you

Lorri ( 15 CVID)

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]

Hi Janet,

I just saw your email, poor Brittany! I hope they gat her infection under

control soon. I hate the thought of her getting all those sticks, was a

poor stick as well, makes you feel terrible for them. You are all in our

prayers. Let us know how she is doing.

mom to - CVID, asthma, GERD

Re: here we go again

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

sassykay59@...<mailto: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]

In a message dated 4/23/2005 8:02:08 A.M. Eastern Daylight Time,

ajunes@... writes:

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.

Amy, thank you for your well wishes! They did try a warm washcloth. After

how many nurses and even IV team they finally called Anesthesia and they got it

first poke! It took them about 3 hours to get the IV restarted!

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

In a message dated 4/23/2005 8:54:09 A.M. Eastern Daylight Time,

asolomon1@... writes:

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...

Thanks ! This paritoid infection has happened to her many times

before. The immune doctor said it's common with kids with no or low IGA.

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

In a message dated 4/23/2005 8:54:09 A.M. Eastern Daylight Time,

asolomon1@... writes:

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...

Thanks ! This paritoid infection has happened to her many times

before. The immune doctor said it's common with kids with no or low IGA.

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

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

yhwhworship@... writes:

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.

Wenoka, What a great memory you have! Yes, she is very thin. I didn't

realize you could do them daily. I will check into that with the doctor.

Thanks!

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

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]

In a message dated 4/23/2005 12:03:25 P.M. Eastern Daylight Time,

nwd30@... writes:

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

Thank you Dawn! It means a lot to me.

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

In a message dated 4/23/2005 12:30:18 P.M. Eastern Daylight Time,

jbrethen@... writes:

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.

Jay, I know it's so hard when they are too young to understand. When

Britt's major problems came she was old enough to understand. My heart goes out

to

you and your precious son! This is a great group of people. I have learned so

much here. I am very thankful for this group. I'm sure you will feel the

same way.

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

In a message dated 4/23/2005 5:22:15 P.M. Eastern Daylight Time,

bunneegirl@... writes:

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...

, You are very kind. Thank you! Thank you! She is feeling better today.

Tom. I'm sure she will feel better tom.

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

In a message dated 4/23/2005 5:22:15 P.M. Eastern Daylight Time,

bunneegirl@... writes:

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...

, You are very kind. Thank you! Thank you! She is feeling better today.

Tom. I'm sure she will feel better tom.

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

In a message dated 4/23/2005 7:22:09 P.M. Eastern Daylight Time,

rn4premies@... writes:

I hope they gat her infection under control soon. I hate the thought of her

getting all those sticks, was a poor stick as well, makes you feel

terrible for them. You are all in our prayers.

Thanks ! How did they finally manage with ? is a

beautiful name BTW!

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

In a message dated 4/23/2005 7:22:09 P.M. Eastern Daylight Time,

rn4premies@... writes:

I hope they gat her infection under control soon. I hate the thought of her

getting all those sticks, was a poor stick as well, makes you feel

terrible for them. You are all in our prayers.

Thanks ! How did they finally manage with ? is a

beautiful name BTW!

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

In a message dated 4/23/2005 4:56:10 AM Pacific Standard Time,

BBsmart2@... writes:

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!!

Hi Janet,

I'm sorry you guys are having such a rough time. Have you considered a

port for Britt?? Please give her a hug from me and take care of yourself, too.

At least eat some chocolate!!!

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

transplant (2003), asthma, Carnitine deficiency, GERD

[Guest guest]

Just a quick note. has no fat either but the daily sub Q works well.

It is almost like giving a intradermal injection because you just go under

the skin tiny bit. His immunologist was comfortable doing weekly ones this

way also but the dial is ideal when they are so thin.

A port goes in the chest area under the skin. It is a access area for nurses

to use for infusions, etc. They can still go swimming after it heals. They

need surgery/anesthesia to place it. With this there is always a chance of

infection, so they need to weigh the risks and benefits. Most of the time

with hard starts in young children they will think it is the best option.

Our doctor didn't feel it was a safe option for since he can do sub q,

she felt that was a better way to go. He never has been a very tough start

though.

Sorry not so quick

Take care

Amy

Re: here we go again

>

>

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

>yhwhworship@... writes:

>

>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.

>

>

>Wenoka, What a great memory you have! Yes, she is very thin. I didn't

>realize you could do them daily. I will check into that with the doctor.

Thanks!

>

>Janet, Mom to Brittany, CVID, age 14

>

>

>

>

[Guest guest]

Amy, thank you, that was very informative! I will discuss these option with

the doc when Britt gets well. I need to know my options here, so thank you! I

talked with her a little about it today and she seems afraid of subQ. I'm

sure it's just fear of the unknown. If she talked with someone who does it she

may change her mind. I have to get her doctors view on this first I guess.

Today when I told the doctor what happened he shook his head and said he would

fix it. (LOL) That is easy to say! He is just the one that helps her immune

doc with the infusions and serious infections here where our insurance pays.

He is very good with Britt so far and very nice. He is learning a lot from

Britt!

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

Amy, thank you, that was very informative! I will discuss these option with

the doc when Britt gets well. I need to know my options here, so thank you! I

talked with her a little about it today and she seems afraid of subQ. I'm

sure it's just fear of the unknown. If she talked with someone who does it she

may change her mind. I have to get her doctors view on this first I guess.

Today when I told the doctor what happened he shook his head and said he would

fix it. (LOL) That is easy to say! He is just the one that helps her immune

doc with the infusions and serious infections here where our insurance pays.

He is very good with Britt so far and very nice. He is learning a lot from

Britt!

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

Thanks Janet,

For her sticks it was 7 mgs of Valium, 2 hours before and 4 nurses to hold her

down, no talking her into relaxing at all, the minute they came to do the iv,

the effects of the Valium vanished, she is so strong, Oh yah, Emla cream as

well. Now with her port, the first time was tough, we used Emla cream, she

rolled up into the fetal positon, started whining, " I don't want this etc " makes

me feel like the worse mom in the world I tell you. she was crying too, all

tense than said to her nurse " just tell me when it's done " she had my hand in a

vise grip, crying and shaking, well the nurse inserted the Huber needle and

says OK Tori it's done. Well her face was hysterically funny, the surprise! "

It's in? are you sure it will work " well she uncurled from her ball, all smiles

etc. Now we go in no Valium, she just site there relaxed as can be, " ok put it

in " not a care in the world. So great, the anxiety is gone. It was an

excruciating decision for the port, I hate surgery for her, but it was truly

worth it for her.

thanks for the compliment on her name, we came up with it for Victory, 7 years

of trying, tons of infertility drugs, pre term labor, etc. But she is great.

mom to Tori

Re: here we go again

In a message dated 4/23/2005 7:22:09 P.M. Eastern Daylight Time,

rn4premies@...<mailto:rn4premies@...> writes:

I hope they gat her infection under control soon. I hate the thought of her

getting all those sticks, was a poor stick as well, makes you feel

terrible for them. You are all in our prayers.

Thanks ! How did they finally manage with ? is a

beautiful name BTW!

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

In a message dated 4/24/2005 5:22:45 P.M. Eastern Daylight Time,

rn4premies@... writes:

So great, the anxiety is gone. It was an excruciating decision for the port,

I hate surgery for her, but it was truly worth it for her.

thanks for the compliment on her name, we came up with it for Victory, 7

years of trying, tons of infertility drugs, pre term labor, etc. But she is

great.

Wow, the port is a blessing for her then. Just like she is a blessing for

you! My pet groomer just had twins after invetro. They had tried invetro many

times before and she had got pregnant and lost it in the early stages. This

time her new doc implanted 5 eggs instead of the usual 3 and two took. She just

gave birth to two so far healthy babies! Isn't that exciting? A boy and a

girl.

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

Anytime. was very scared at first also. Now he asks for his numbing

cream and looks forward to doing it because he gets that one on one time

with us. He has always tolerated things so well though, his such a trooper.

The first week was tough and he really didn't like when they did a weekly

size dose. Since he was so tiny his legs looked like they had a tennis ball

size welt in them. he gets a cherry size welt from the daily dose but the

emla cream takes care of the discomfort.

I think so much of what they are forced to go through is traumatic but with

time it gets easier. Hope she is well very soon

Amy

Re: here we go again

>

>Amy, thank you, that was very informative! I will discuss these option

with

>the doc when Britt gets well. I need to know my options here, so thank

you! I

>talked with her a little about it today and she seems afraid of subQ. I'm

>sure it's just fear of the unknown. If she talked with someone who does it

she

>may change her mind. I have to get her doctors view on this first I guess.

>Today when I told the doctor what happened he shook his head and said he

would

>fix it. (LOL) That is easy to say! He is just the one that helps her

immune

>doc with the infusions and serious infections here where our insurance

pays.

>He is very good with Britt so far and very nice. He is learning a lot from

>Britt!

>

>Janet, Mom to Brittany, CVID, age 14

>

>

>

>

[Guest guest]

Anytime. was very scared at first also. Now he asks for his numbing

cream and looks forward to doing it because he gets that one on one time

with us. He has always tolerated things so well though, his such a trooper.

The first week was tough and he really didn't like when they did a weekly

size dose. Since he was so tiny his legs looked like they had a tennis ball

size welt in them. he gets a cherry size welt from the daily dose but the

emla cream takes care of the discomfort.

I think so much of what they are forced to go through is traumatic but with

time it gets easier. Hope she is well very soon

Amy

Re: here we go again

>

>Amy, thank you, that was very informative! I will discuss these option

with

>the doc when Britt gets well. I need to know my options here, so thank

you! I

>talked with her a little about it today and she seems afraid of subQ. I'm

>sure it's just fear of the unknown. If she talked with someone who does it

she

>may change her mind. I have to get her doctors view on this first I guess.

>Today when I told the doctor what happened he shook his head and said he

would

>fix it. (LOL) That is easy to say! He is just the one that helps her

immune

>doc with the infusions and serious infections here where our insurance

pays.

>He is very good with Britt so far and very nice. He is learning a lot from

>Britt!

>

>Janet, Mom to Brittany, CVID, age 14

>

>

>

>

[Guest guest]

Tara, has your son undergone gentic testing? Your son's story sounds awfully

familiar, with the episodes starting for my son at 6 months being somewhat

irregular and then coming full blast and regular starting at about age 5 to 6

years. This apparently is pretty typical for FMF which my son wound up being

diagnosed with at almost 9 years. I'm not saying that I think that your son has

FMF, as I said before, your sons history and symptoms could be my sons history.

Pat, mom to PJ, FMF, 13yo

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

Find Great Deals on Holiday Gifts at

[Guest guest]

>Pat,

Evan started with his fevers at one month old, and he was finally

diagnosed with at 18 months. It has been so long since his

testing, but I know he was tested for FMF and one other period fever

syndrome similar - I cannot think of the name right now. He had his

tonsils and adenoids removed at 2 1/2 years old when he was cycling

every 2 weeks and had severe tonsil involvement. In brief, he had an

episode that same day, and I had to administer the prednisone.

Since then, for about the past three years his episodes have been

much milder - fevers about 9-10 months apart and able to control

with advil and tylenol. In between the fevers he would get joint

discomfort in his knees and back and his feet and hands would burn -

but that could be controlled with advil also - and were less

frequent. But now, all of a sudden he has had two episodes one

month apart - 105+ full blown just like he was over 3 years ago. He

couldn't even walk on Thursday, his knees hurt so bad. It is heart

breaking and I don't understand it. I know that many here are

praying for the relief that Evan had over the past three years, but

now it seems like I am back at the beginning. And, if they find

that his adenoids have not grown back - and he keeps cycling, I

don't know where to go from there. Of course, our ped. rheumy is

wonderful - so all our trust will go into him once more. But I

thought the worst was over.

Sorry to be rambling, thank you for your concern. Evan was lucky to

be diagnosed so early. I know that many - like your son takes

years, and my thoughts and prayers go out to everyone to find a fast

diagnosis and treatment to relieve these symptoms - and someday a

cure!

-Tara

Mom to Evan( age 5 1/2) and age 7

> Tara, has your son undergone gentic testing? Your son's story

sounds awfully familiar, with the episodes starting for my son at 6

months being somewhat irregular and then coming full blast and

regular starting at about age 5 to 6 years. This apparently is

pretty typical for FMF which my son wound up being diagnosed with at

almost 9 years. I'm not saying that I think that your son has FMF,

as I said before, your sons history and symptoms could be my sons

history.

>

> Pat, mom to PJ, FMF, 13yo

>

>

> ---------------------------------

>

> Find Great Deals on Holiday Gifts at

>

>

[Guest guest]

Tara, PJ also tested negatively for FMF. In fact, he has tested negative for all

of the genetic fever disorders. The day we were first seen at NIH, he was on day

one of an episode and as I described how it would progress, Dr. Kastner decided

to start him on Colchicine immediately. It was a miracle drug for us.

Because he responded so well to the colchicine, greatly decreasing the

frequency and severity of the episodes, NIH diagnosed him with " Clinical FMF " .

That means that they believe he has FMF, they just haven't discovered the

mutation responsible in his case.

They do know that Colchicine only works on FMF. It would have no effect if he

had Pfapa or one of the other fever disorders. That in itself can be used for a

diagnosis.

I wish you and your family well on this road that you are on.

Pat

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

Find Great Deals on Holiday Gifts at

[Guest guest]

Tara,

I am so sorry I have not gotten back to you sooner. I have not had a chance to

check my emails in about a week.

Yes, we just used the Indocin again this past Sunday/Monday and again it worked

wonders for my son!

Did you get it in time to try it on Evan? Sorry that I did not warn you that is

not something the pharmacies stock. I had the same problem the first time we

tried to get the script filled.

I hope by now Evan is feeling better! Please let me know if the Indocin helped.

Prayers!

mom to (6 yrs, )

and Luke (3 yrs)

-------------- Original message --------------

From: " gottiert " <gottiert@...>

First of all, Fran - my thoughts and prayers are with you always. I

have been with this group since there were only 60 members. Your hard

work and determination is so very much appreciated. Good luck with

ph. Stay strong and you know your family is in all of our prayers.

I posted about a month ago regarding my concern with Evan's fever

coming back with a vengeance. Well here we are a month later and -

boom - here it is again. - we tried to get the indocin

prescribed, but no pharmacy carried it in liquid supsension form! I

was forced to give the prednisone after calling 6 pharmacies in the

area. Evan went to 105+ and couldn't even walk. His knees, his

hands, his feet - it was awful. Today he is much better, of course.

The prednisone always works fast. I made an appointment with our ENT

in early January. I want to see if his adenoids grew back. I just

don't understand what else could bring these episodes back again so

strong. We have a trip planned to Disney at the end of February. The

kids have never been before - nor have I! I hope we can resolve

everything by then.

Anyway, the Indocin script will be in today after 3:00. I will pick

it up for next time.

, have you had to use it again since the last time?

My thoughts and prayers go out to everyone here. I know how difficult

this disorder is and I am so disheartened after having extremely mild

infrequent episodes over the past 2-3 years that this is back.

Here we go again!

-Tara

Mom to Evan ( age 5 1/2) and age 7

Connecticut