Re: /Savannah

[Guest guest]

Hello Sandy...

Savannah has a lot of similarities to , but her Dr. is not even

discussing any other treatments right now. I thought that Selective

IgA was well, sort of incurable if you will. Perhaps 's level is

lower. Savannah's when she is ill can be in the teens and when

she is well can go into the 30's.

She also has asthma and reflux. Next week or so they will be doing

a follow up test to the gastric emptying test she had. The test showed

that her stomach was not emptying in the normal range. I don't remember the

name of the test but they put some sort of wire down

through the nose and into the Stomach and they video tape it for

24 hours. Uuughhhh!!! I couldn't do it myself. Its amazing the strength

that she has. I really admire her.

I guess there is a lot that I don't know about this illness, I will do my

best to learn everything about it. It is my only defense.

See the thing that gives us some sort of hope right now, other than

I am giving her the very Medicine that is harming her, is that maybe

when she grows out of the Seizures, her IgA levels will return normal.

I don't know how that will affect her Asthma or Reflux.

Thanks for making me feel a little better at being qualified to teach.

As long as it is the early grades, after about 3rd grade though I will

need to be home schooled.

Happy Holiday to everyone.

Sandy and Savannah

[Guest guest]

Sandy help explain something to me. If the IVIG is IgA depleted then how is

it of any help to an IgA deficient patient? I had always heard from IgA

patients that that was the awful thing about being IgA deficient is that

they don't have the option of IVIG therapy.

Any info would help me understand this better.

Ursula Holleman

Macey's mom (3 yr. old with CVID, asthma, GERD, sinus disease, grade I

left kidney reflux, Sensory Integration Disorder)

ICQ # 28592349

http://www.icq.com

 

PedPID email list archives

http://www.netpage.org/PedPID/_PedPID/

 

PedPID email list introductions

http://www.netpage.org/PedPID/_PedPID/introduction.htm

 

 

/Savannah

Hello ...

My name too is (Sandy), my son (Adam, also 6) was just diagnosed

with Selective IgA deficiency. Oh, how our stories are parallel. Woe

to the children whose parents are not proactive in seeking explanations

for their ills. Kudos to you for pursuing your doctor(s)!!!

I too am having to home-school my son. He did not return to school

after Thanksgiving because of 24-hour oxygen requirements after his last

bout of pneumonia. Nurse, teacher, mom, wife, etc. all weigh heavy,

don't they?

Have your docs considered IVIg for Savannah? We are awaiting a lab test

(july... long story) that will determine if Adam can have IVIg, since he

is IgA deficient (they can't guarantee that IVIg will be 100% IgA

depleted and he could anaphalax and die).

If IVIg doesn't pan out, we're considering a bone marrow transplant.

He's been typed and is in the registry now. How about you guys?

This list has truly been a Godsend, now I don't feel so isolated.

Peace to you, and happy Resurrection Day!

Sandy

Adam's Mom (IgA deficient, CVID, chronic everything)

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

Did you know that we have over 85,000 e-mail communities at Onelist?

http://www.onelist.com

Come visit our new web site and explore a new interest

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

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]

Dear Sandy and Savannah,

Both of my children have GERD/Reflux. They each have had a pH Probe, in fact

had one a year ago and will have one on April 8th. has very severe

reflux and consideration is being made for fundoplacation surgery (which I am

going to ask be deferred). He will also undergo his fifth EGD in later

April. Mark's reflux is more under control but he does suffer from severe

delayed gastric emptying. He just had the test done again and it was grossly

delayed according to GI. Please know that you are not alone with this. I

hope that the procedure will be uneventful for her....it does take some

getting used to at first but after a while they are o.k. Getting it in is

half the battle, after that things should be o.k..at least I hope. Good luck

to you!

Autumn Mom to Mark Cd5 PID/ Samter's syndrome, A1A

[Guest guest]

Dear Sandy and Autum:

Awe geez, you guys make me feel so much better. Thank you for

that. Savannah has a sinus infection as we speak and is on another

round of antibiotics this time for a month. Do you know the long

term affects of this? She has been on them more than off her entire

life. I am now starting to notice her teeth discoloring. In the long

end I know that she must have them but what about the discoloring?

This past year she's only been off them for about 4 weeks total. Guess

I better start saving for " caps " someday.

Happy Easter

and Savannah

[Guest guest]

Dear ,

Regarding the long-term effects of antibiotics...it is not a good thing for

anybody. With all the " super bugs " out there these days, there is the risk

that after taking a certain antibiotic for long-term that the " bug " will

become resistant to it. Long-term antibiotics can also play havoc on the gut

and cause some problems there, as well. The problem is, that sometimes we

just do not have any other options. I guess it is a " weigh the odds "

game....a long-term infection of the sinuses poses much greater risk for more

serious infections. I wish there were an easier answer for Savanah. Please

remind me, is she on IVIG? I know first hand how frustrating this is, as my

6 year old has an immune dysregulation problem...too many inflammatory

cells..far too many. This causes him to basically live on antibiotics, and

he has since 3 months of age. He has infection after infection. We stop the

antibiotic and 2 weeks later we are culturing another bacteria. It is good

that they are putting Savanah on antibiotics for a month for the sinus

infection. Studies have shown that sinus infections really require about 3-4

weeks of antibiotics to completely kill the " bug " .....I hope this works for

her.

Good luck....

Autumn Mom to Mark Cd5 PID/ Samter's syndrome, A1A

[Guest guest]

Autum,

No, Savannah is not on anything other than the Antibiotics, Pulmicort,

Depakote and Flonase. But I feel like that is a lot. Except for the

Flonase all are pretty much indefinite. I guess I am not the only

one with long term Antibiotic use. Sound pretty status quo.

But with Selective IgA, I thought the only course of treatment was

to treat the symptoms? This is so new to me, I was trying to get a hold

on Epilepsy, and JRA and just when I felt I had read everything on

these two I get a new one. And a new one that most aren't even

familiar with. Its funny when I tell people, I gotta go through this

whole thing, and they always say, " well, then boost her immune

system! " Duh! Why didn't I think of that? LOL They try to be helpful,

but I must say I am done with thinking there is a magic pill, unless of

course any of you may know of one.

and Savannah

[Guest guest]

Hi!

I just wanted to add that my Austin has been on antibiotics everyday for

almost 7 years and he is doing fine. We do switch to a different antibiotic

for infections and he has to be on one for 3-8 weeks with an infection.

Then we return to are other antibiotics. He also takes mega antibiotics

when seeing a dentist, but this is only because of his heart condition not

his PID.

Take Care!

Lori Mother of Austin Di Syndrome etc.

Re: /Savannah

>From: Autti@...

>

>

>

>Dear ,

>

>Regarding the long-term effects of antibiotics...it is not a good thing for

>anybody. With all the " super bugs " out there these days, there is the risk

>that after taking a certain antibiotic for long-term that the " bug " will

>become resistant to it. Long-term antibiotics can also play havoc on the

gut

>and cause some problems there, as well. The problem is, that sometimes we

>just do not have any other options. I guess it is a " weigh the odds "

>game....a long-term infection of the sinuses poses much greater risk for

more

>serious infections. I wish there were an easier answer for Savanah.

Please

>remind me, is she on IVIG? I know first hand how frustrating this is, as

my

>6 year old has an immune dysregulation problem...too many inflammatory

>cells..far too many. This causes him to basically live on antibiotics, and

>he has since 3 months of age. He has infection after infection. We stop

the

>antibiotic and 2 weeks later we are culturing another bacteria. It is good

>that they are putting Savanah on antibiotics for a month for the sinus

>infection. Studies have shown that sinus infections really require about

3-4

>weeks of antibiotics to completely kill the " bug " .....I hope this works for

>her.

>

>Good luck....

>

>

>Autumn Mom to Mark Cd5 PID/ Samter's syndrome, A1A

>

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

>We have a new web site!

>http://www.onelist.com

>Onelist: The leading provider of free email community services

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

>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.

>

________________________________________________________

NetZero - We believe in a FREE Internet. Shouldn't you?

Get your FREE Internet Access and Email at

http://www.netzero.net/download.html