Re: Our update(would love advise and opinions!!)

[Guest guest]

Hi, I don't post often either, but I can tell you that my 8 year old son was

diagnosed with CVID at the age of 4 and has been on IVIG since. He has normal

levels of B-cell but they do not produce antibodies. His IGG was 35, IGM was 16

and IGA was <1 when they finally tested him. My Dr. said those numbers were so

low, they were virtually zero. Dr. said it was a miracle that he never got

deathly ill. His T-cell function is normal. Originally they thought he had

XLA, but when they found out that he had normal numbers of B-cells, they changed

his diagnosis to CVID. The B-cells are there, but there is a defect that does

not allow them to produce antibodies.

I am not convinced, however, that he doesn't have XLA, he was never officially

tested. I know there is someone on the board that told me their brother had

normal numbers of B-cells and was later diagnosed with XLA after her children

became ill. If your out there, am I correct? After 4 years, I still can't get

your story off my mind. It bothers me so much, I am asking them to test him

this spring. My sister has 2 boys that have not been chronically ill, but have

had a couple of somewhat rare issues. And I worry about my daughter being a

carrier.

Well, good luck to you. I hope you find your answers.

Kim - Mom to 8 - CVID

Our update(would love advise and opinions!!)

>

>

> Sorry to be such a sporatic poster, but life just keeps handing me

> more then I think at the time I can handle, and then by the Grace

> of

> God when I think have made it through. I take a breath and I get

> handed alot more to deal with. I'm sure the Grace of God will pull

> me through again!) (but sometimes its so hard to see that until

> it

> happens!)

> I think the last time I posted I was asking about a g-tube. The

> decision on that one is still out. I have yet to have any of the

> drs

> tell me that if we put a tube in, that it will actually help with

> Zach's issue of not gaining weight. He does have times where he

> doesn't eat, but the real issue seems to be that when he does eat,

> he just doesn't gain from a large amount of eating and calories.

> He

> has been on the enzymes for almost two months, and he hasn't had

> the

> big gain we were hoping to see. Depending on the day you weigh

> him,

> his weight is up or down, so right now we are just only

> maintaining.

> So at this point I'm just going to leave the decision in the hands

> of the drs, and hopefully we will come up with a plan on how to

> handle it. Because I feel completely torn on what to do. I want

> Zach

> to grown & gain, and I want it to be done the best way, with

> avoiding as much trauma and pain as possible.

>

> Now for our mystery. I was talking to our immunologist last week.

> Seems like we have no clue exactly what is going on with Zachary.

> She proceeds to tell me that Zachary's immune deficiency doesn't

> make sense to them, and even though he is classified PID-

> hypogammaglobulinemia, he technically isn't. WHAT????? Zach has

> low

> IgG total, Low subclasses 1 & 4(no detectable level in 4) and Low

> IgA.

> Now when we first started testing him when he was 18 months,and it

> was just the total IgG and Subclass 1, every 3-6 months we tested

> his levels they continued to fall, then he also became deficient

> in

> his IgA, and after testing for 3 years(and complete isolation) we

> finally started the IVIG. He does have a antibody dysfuction(which

> was IgG & T cell related), found through a bacteriophage that was

> done. But she says Zachary's T and B cells levels are fine.

> HUH????

> The immunologist said that somewhere Zach is lossing his IgG. They

> at one point thought maybe he was losing it through his GUT, BUT

> every test we have done for malabsorption has been negative.(and

> we

> have done a TON of testing!)

> Can you produce enough T & B Cells and they still not work

> right???

> I asked her if there was a way of testing it, but she said no.

> Does

> anyone know if there is?? Does anyone have a clue??? Nothing ever

> seems to make sense with Zachary. He has constantly stumped the

> drs,

> which we again heard Monday when we visited Genetics for our first

> visit. After leaving that appt, I didn't feel that we were any

> closer to figuring exactly what is going on with Zachary. I guess

> after waiting 6 months to see her, and not really understanding

> Genetics, and what those drs do, I was just a little more then

> disappointed with the outcome of the appt. She didn't order any

> testing,didn't even want to look at any labs, evaluations, or

> tests

> results, took our family history, examined Zach, and then said

> that

> in about 3 wks I would get a report from her, and it will include

> what they think needs to be done, and she wants us back in a YEAR.

> She said even though Zach is very complex, and has alot of issues,

> that she didn't feel that it was necessary to order any blood

> tests

> because she didn't feel his problem was chromosonal. Is that all

> Geneticists deal with?? or is it just this one?? GRRRRR In the

> meantime I think I might just go insane. I was just trying to

> resolve myself that all Zachary's health issues were due to his

> PID

> and that I was not going to worry anymore, and just deal with what

> is handed to us each day. His immunologist is insisting we have

> another condition we are dealing with. And honestly my gut has

> been

> saying the same, there is just too many things wrong, too many odd

> labs, and tests results...and as always NO answers!!.~MG & Zach(5-7-99)

> monthly IVIG,IgG total deficiency,IgG1 & 4deficiency, IgA

> deficiency,Antibiody Dysfunction, Asthma,GERD,Chronic Sinus,

> Diarrhea and skin infections,FTT,Speech and Fine Motor Delays,

> central apnea,hypoapnea,bowel and urine incontience, and way too

> much more.....

>

>

>

>

>

>

[Guest guest]

in refernce to the folowing post mgt66. My name is Dawn Souza I have a 3

year old boy named . he has hypo--- as well also severe acid

reflux disease and many delays. his t and b cells are also normal but low

igg, iga, igm ige all three sub-class. What i was told by our

immunologist was that the communication betweeen t and b cells was his

problem. When he gets an infection I guess the t cells or b cells I am

not sure which does what but the cell tells the other what to produce in

response to that infection and then the cells do the work to kill the

bacteria or virus. With our son the communication breaks down in that

process. We also get ivig too every three weeks. Our son has severe

eating problems too and numerous other issues. He seems to be doing well.

We were once offered the feeding tube. I said I would fight not to have

it. They put him on pediasure and that's his primary source of nutrition.

He takes in some bread, waffles or cereal but not much. He has gone from

-5% to 50 at three. It took awhiole and alot of work but we avoided the

feed tube and we are greatful for that. I also don't post all the time it

gets busy around here. Our son is having asthma trouble right now. He is

on singulair but is starting to have breathing issues he has had psmonia

three times. So with our kids it is always something and it took me a

long time to just look at the good and run with it because it doesn't

always stay that way for long. Keep at the doc and if they don't give you

answeres find another one. I did and it was the best thing I could do for

my son and also the hardest. I picked the doc and it was great for my

very well nine year old but when it came to he thought I was

crazy...But in the end my son benefited from it. I hope this helps...we

also saw a genetic doc and she couldn't find anything. They said to come

back in two year when technology was better....If you need my personal

e-mail let me know I will be glad to help. Thanks to everyone here they

are great. Dawn mother to cvid, acid reflux, deleopmental

delay,and many other issues too. take care

--- mgt66 <mgt66@...> wrote:

>

> Sorry to be such a sporatic poster, but life just keeps handing me

> more then I think at the time I can handle, and then by the Grace of

> God when I think have made it through. I take a breath and I get

> handed alot more to deal with. I'm sure the Grace of God will pull

> me through again!) (but sometimes its so hard to see that until it

> happens!)

> I think the last time I posted I was asking about a g-tube. The

> decision on that one is still out. I have yet to have any of the drs

> tell me that if we put a tube in, that it will actually help with

> Zach's issue of not gaining weight. He does have times where he

> doesn't eat, but the real issue seems to be that when he does eat,

> he just doesn't gain from a large amount of eating and calories. He

> has been on the enzymes for almost two months, and he hasn't had the

> big gain we were hoping to see. Depending on the day you weigh him,

> his weight is up or down, so right now we are just only maintaining.

> So at this point I'm just going to leave the decision in the hands

> of the drs, and hopefully we will come up with a plan on how to

> handle it. Because I feel completely torn on what to do. I want Zach

> to grown & gain, and I want it to be done the best way, with

> avoiding as much trauma and pain as possible.

>

> Now for our mystery. I was talking to our immunologist last week.

> Seems like we have no clue exactly what is going on with Zachary.

> She proceeds to tell me that Zachary's immune deficiency doesn't

> make sense to them, and even though he is classified PID-

> hypogammaglobulinemia, he technically isn't. WHAT????? Zach has low

> IgG total, Low subclasses 1 & 4(no detectable level in 4) and Low IgA.

> Now when we first started testing him when he was 18 months,and it

> was just the total IgG and Subclass 1, every 3-6 months we tested

> his levels they continued to fall, then he also became deficient in

> his IgA, and after testing for 3 years(and complete isolation) we

> finally started the IVIG. He does have a antibody dysfuction(which

> was IgG & T cell related), found through a bacteriophage that was

> done. But she says Zachary's T and B cells levels are fine. HUH????

> The immunologist said that somewhere Zach is lossing his IgG. They

> at one point thought maybe he was losing it through his GUT, BUT

> every test we have done for malabsorption has been negative.(and we

> have done a TON of testing!)

> Can you produce enough T & B Cells and they still not work right???

> I asked her if there was a way of testing it, but she said no. Does

> anyone know if there is?? Does anyone have a clue??? Nothing ever

> seems to make sense with Zachary. He has constantly stumped the drs,

> which we again heard Monday when we visited Genetics for our first

> visit. After leaving that appt, I didn't feel that we were any

> closer to figuring exactly what is going on with Zachary. I guess

> after waiting 6 months to see her, and not really understanding

> Genetics, and what those drs do, I was just a little more then

> disappointed with the outcome of the appt. She didn't order any

> testing,didn't even want to look at any labs, evaluations, or tests

> results, took our family history, examined Zach, and then said that

> in about 3 wks I would get a report from her, and it will include

> what they think needs to be done, and she wants us back in a YEAR.

> She said even though Zach is very complex, and has alot of issues,

> that she didn't feel that it was necessary to order any blood tests

> because she didn't feel his problem was chromosonal. Is that all

> Geneticists deal with?? or is it just this one?? GRRRRR In the

> meantime I think I might just go insane. I was just trying to

> resolve myself that all Zachary's health issues were due to his PID

> and that I was not going to worry anymore, and just deal with what

> is handed to us each day. His immunologist is insisting we have

> another condition we are dealing with. And honestly my gut has been

> saying the same, there is just too many things wrong, too many odd

> labs, and tests results...and as always NO answers!!.~MG & Zach(5-7-99)

> monthly IVIG,IgG total deficiency,IgG1 & 4deficiency, IgA

> deficiency,Antibiody Dysfunction, Asthma,GERD,Chronic Sinus,

> Diarrhea and skin infections,FTT,Speech and Fine Motor Delays,

> central apnea,hypoapnea,bowel and urine incontience, and way too

> much more.....

>

>

>

>

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