Re: Dx'd without an immune system-No B Cells/Anyone else going thru this?-long

[Guest guest]

Hi Joy, It's been a long time...we had regular contact when our kids were younger. I think, it was around the time we were both adopting from CA as Kit is also now 10. We are also in Ohio, too. I'm so sorry to hear a out and all he's/you've been through. I wish i had some info to give you, but don't. Just wanted to let you know that I'm thinking of you and hope you get some answers. JillMom to Mac and KitSent from my iPadx.

Hi I'm Joy, Please forgive the length of this. I really do not have anyone to talk to about this, or anyone that even remotely understands or seems to give a hoot so thanks in advance if you care to keep reading.

I'm primarily a reader and haven't posted in ages. As some of you may remember us, I have have 8 children, 2 of which have down syndrome. My one little guy who has ds, , is now 10yrs old, and in August of 2009 was dx'd with AAL (acute lymphatic leukemia) and has been undergoing treatment since. As part of his treatment, he gets blood workups every month and 6 months ago we found that he has no immune system, that now has him getting IVIG weekly on top of everything else (it's actually now sub-q and I give it at home). To be exact, is not producing B cells, hence causing him to not have an immune system. The b cells that were being produced were leukemic. It was one of those situations that isn't common and so the research began to find out if this is something chemo related, which is what they thought in the beginning of this 6 months ago, or if it was something he was born with so they tested. Part of their research had the drs pull

his records from his birth (until he was about 9 weeks old) which were in Loma , CA (his birth place) to see what tests they ran and what the outcome. was born with TOF and his 1st surgery was in Loma which is why he was there for 9 weeks. We live in OH, so all other records are here. After the records came here, the drs found he was tested for immunity levels and that he was born without an immune system-or lack of b cells. Just seems Loma knew his lack of immunity, but didn't send me with that information, or even tell me. I would have thought this would be pertinent information for a little guy who had open heart surgery at 17 days old and another one at 6 months old. We have been blessed that until his AAL dx, he had frequent ear infections and nothing any more serious than that. Since the chemo began, has been sicker than what they ever expected for his situation which caused them to take a

close look at his blood work history and thats when this was found. As some of you know, is adopted which is why he was in CA at birth and now in OH. In the information we were given about him,from the agency and hospital, which was supposed to be everything, noone in his birth family has any of these health issues, so it's just something with him.

I just would like to know if anyone else is going through anything similar or has heard of anything like this before. I did ask if this lack of producing b cells is something found more in children who have ds, or not, and the drs have said it's not something that's found more often in children with or even children without ds. Generally children show signs from early in childhood that alarm the drs there's a problem that leads them to test and find this, but in his situation, all the tube placements and ear infections apparently wasn't enough to cause anyone to dig and find this out. Even though he was born with this, the blood work they took 6 months ago to test to see if they could find anything genetic came back negative.

So receives IVIG (immunity given to him weekly) and will have to receive this the rest of this life. Just one more thing but no big deal compared to all the other things we've had to deal with, that is until it's time for another weekly treatment, and then moans and groans about it for days after and then he finally stops about it, only to have to do it all over again. It's not something real painful to have to receive, but he psychs himself up every single week over getting poked even though he has his numbing cream, and then we deal with his issues with tape, which I think is worse for him than receiving these tiny little pokes without using the cream and tape to hold it there. After 6 months he still complains about it and the way it seems to be going, I don't think that will ever end. I feel so bad for him. He's been through so much and the worst part of all of it I think is having tape removed because it pulls his skin and hurts (we

don't always have dettach all, actually we rarely do) no matter how gentle or how quick, or how anything that's one of the hardest parts of any of this.

So Anyone have anything like this going on...anyone having issues with b cells or lack of b cells? What have you experienced? What did the drs have to say? Is it a life long issue? What else have you learned about this and have you been offered any better options than say weekly IVIG (or sub-q which is what we're doing now) Any suggestions or ideas or anything?

Thanks for your time and thanks for anyone who took the time to read this.

Joy

[Guest guest]

Dear Joy,

 

I will be keeping in our prayers, I have no experience with this, but thought I could offer a suggestion for the tape situation.

 

Our daughter, now 10 as well, I recall you on this list quite some time ago......Isabella needing the numbing cream (we used emla cream) for awhile for steroid shots when she was 7 months old. We gave her shots at home and at one point we ran out of the tegaderms the drs gave us so we used plastic wrap instead. We wrapped it around her leg and then easily unwrapped it when it had numbed the area. Maybe this would work for ? At least it may be worth a try.

 

Take care,

Caroline

 

 Hi I'm Joy,  Please forgive the length of this. I really do not have anyone to talk to about this, or anyone that even remotely understands or seems to give a hoot so thanks in advance if you care to keep reading.

 

I'm primarily a reader and haven't posted in ages. As some of you may remember us, I have have 8 children, 2 of which have down syndrome. My one little guy who has ds, , is now 10yrs old, and in August of 2009 was dx'd with AAL (acute lymphatic leukemia) and has been undergoing treatment since. As part of his treatment, he gets blood workups every month and 6 months ago we found that he has no immune system, that now has him getting IVIG weekly on top of everything else (it's actually now sub-q and I give it at home). To be exact, is not producing B cells, hence causing him to not have an immune system. The b cells that were being produced were leukemic. It was one of those situations that isn't common and so the research began to find out if this is something chemo related, which is what they thought in the beginning of this 6 months ago, or if it was something he was born with so they tested. Part of their research had the drs pull his records from his birth (until he was about 9 weeks old) which were in Loma , CA (his birth place) to see what tests they ran and what the outcome. was born with TOF and his 1st surgery was in Loma which is why he was there for 9 weeks. We live in OH, so all other records are here. After the records came here, the drs found he was tested for immunity levels and that he was born without an immune system-or lack of b cells.  Just seems Loma knew his lack of immunity, but didn't send me with that information, or even tell me. I would have thought this would be pertinent information for a little guy who had open heart surgery at 17 days old and another one at 6 months old. We have been blessed that until his AAL dx, he had frequent ear infections and nothing any more serious than that. Since the chemo began, has been sicker than what they ever expected for his situation which caused them to take a close look at his blood work history and thats when this was found. As some of you know,  is adopted which is why he was in CA at birth and now in OH. In the information we were given about him,from the agency and hospital, which was supposed to be everything, noone in his birth family has any of these health issues, so it's just something with him.

I just would like to know if anyone else is going through anything similar or has heard of anything like this before. I did ask if this lack of producing b cells is something found more in children who have ds, or not, and the drs have said it's not something that's found more often in children with or even children without ds. Generally children show signs from early in childhood that alarm the drs there's a problem that leads them to test and find this, but in his situation, all the tube placements and ear infections apparently wasn't enough to cause anyone to dig and find this out. Even though he was born with this, the blood work they took 6 months ago to test to see if they could find anything genetic came back negative.

So receives IVIG (immunity given to him weekly) and will have to receive this the rest of this life. Just one more thing but no big deal compared to all the other things we've had to deal with, that is until it's time for another weekly treatment, and then moans and groans about it for days after and then he finally stops about it, only to have to do it all over again. It's not something real painful to have to receive, but he psychs himself up every single week over getting poked even though he has his numbing cream, and then we deal with his issues with tape, which I think is worse for him than receiving these tiny little pokes without using the cream and tape to hold it there. After 6 months he still complains about it and the way it seems to be going, I don't think that will ever end. I feel so bad for him. He's been through so much and the worst part of all of it I think is having tape removed because it pulls his skin and hurts (we don't always have dettach all, actually we rarely do) no matter how gentle or how quick, or how anything that's one of the hardest parts of any of this.

So Anyone have anything like this going on...anyone having issues with b cells or lack of b cells? What have you experienced? What did the drs have to say? Is it a life long issue? What else have you learned about this and have you been offered any better options than say weekly IVIG (or sub-q which is what we're doing now)  Any suggestions or ideas or anything?

Thanks for your time and thanks for anyone who took the time to read this.

                                                                                                                Joy

 

 

[Guest guest]

Jill,

Hi, How are you? I do remember you and your little ones, well, not so little any more now I bet. Mine have grown like weeds and I bet yours too. It's good to hear from you. I've been on group for a long time, but hardly ever get a chance to get on the computer, let alone have a minute to me to read or post, but thought I'm going to make a minute. I'm glad I did. It's good to hear from you and hope you and yours are doing well. Thanks. Take care and God bless,

Joy

Hi I'm Joy, Please forgive the length of this. I really do not have anyone to talk to about this, or anyone that even remotely understands or seems to give a hoot so thanks in advance if you care to keep reading.

I'm primarily a reader and haven't posted in ages. As some of you may remember us, I have have 8 children, 2 of which have down syndrome. My one little guy who has ds, , is now 10yrs old, and in August of 2009 was dx'd with AAL (acute lymphatic leukemia) and has been undergoing treatment since. As part of his treatment, he gets blood workups every month and 6 months ago we found that he has no immune system, that now has him getting IVIG weekly on top of everything else (it's actually now sub-q and I give it at home). To be exact, is not producing B cells, hence causing him to not have an immune system. The b cells that were being produced were leukemic. It was one of those situations that isn't common and so the research began to find out if this is something chemo related, which is what they thought in the beginning of this 6 months ago, or if it was something he was born with so they tested. Part of their research had the drs pull

his records from his birth (until he was about 9 weeks old) which were in Loma , CA (his birth place) to see what tests they ran and what the outcome. was born with TOF and his 1st surgery was in Loma which is why he was there for 9 weeks. We live in OH, so all other records are here. After the records came here, the drs found he was tested for immunity levels and that he was born without an immune system-or lack of b cells. Just seems Loma knew his lack of immunity, but didn't send me with that information, or even tell me. I would have thought this would be pertinent information for a little guy who had open heart surgery at 17 days old and another one at 6 months old. We have been blessed that until his AAL dx, he had frequent ear infections and nothing any more serious than that. Since the chemo began, has been sicker than what they ever expected for his situation which caused them to take a

close look at his blood work history and thats when this was found. As some of you know, is adopted which is why he was in CA at birth and now in OH. In the information we were given about him,from the agency and hospital, which was supposed to be everything, noone in his birth family has any of these health issues, so it's just something with him.

I just would like to know if anyone else is going through anything similar or has heard of anything like this before. I did ask if this lack of producing b cells is something found more in children who have ds, or not, and the drs have said it's not something that's found more often in children with or even children without ds. Generally children show signs from early in childhood that alarm the drs there's a problem that leads them to test and find this, but in his situation, all the tube placements and ear infections apparently wasn't enough to cause anyone to dig and find this out. Even though he was born with this, the blood work they took 6 months ago to test to see if they could find anything genetic came back negative.

So receives IVIG (immunity given to him weekly) and will have to receive this the rest of this life. Just one more thing but no big deal compared to all the other things we've had to deal with, that is until it's time for another weekly treatment, and then moans and groans about it for days after and then he finally stops about it, only to have to do it all over again. It's not something real painful to have to receive, but he psychs himself up every single week over getting poked even though he has his numbing cream, and then we deal with his issues with tape, which I think is worse for him than receiving these tiny little pokes without using the cream and tape to hold it there. After 6 months he still complains about it and the way it seems to be going, I don't think that will ever end. I feel so bad for him. He's been through so much and the worst part of all of it I think is having tape removed because it pulls his skin and hurts (we

don't always have dettach all, actually we rarely do) no matter how gentle or how quick, or how anything that's one of the hardest parts of any of this.

So Anyone have anything like this going on...anyone having issues with b cells or lack of b cells? What have you experienced? What did the drs have to say? Is it a life long issue? What else have you learned about this and have you been offered any better options than say weekly IVIG (or sub-q which is what we're doing now) Any suggestions or ideas or anything?

Thanks for your time and thanks for anyone who took the time to read this.

Joy

[Guest guest]

Thanks Caroline, I'm putting plastic wrap in his "to go" bag now so it's there. We will also try it here at home with the IVIG and see how that goes if he'll keep it on:) I can only try and it's not going to hurt him which has to be a win-win. Thanks again. Take care and God bless,

Joy

Hi I'm Joy, Please forgive the length of this. I really do not have anyone to talk to about this, or anyone that even remotely understands or seems to give a hoot so thanks in advance if you care to keep reading.

I'm primarily a reader and haven't posted in ages. As some of you may remember us, I have have 8 children, 2 of which have down syndrome. My one little guy who has ds, , is now 10yrs old, and in August of 2009 was dx'd with AAL (acute lymphatic leukemia) and has been undergoing treatment since. As part of his treatment, he gets blood workups every month and 6 months ago we found that he has no immune system, that now has him getting IVIG weekly on top of everything else (it's actually now sub-q and I give it at home). To be exact, is not producing B cells, hence causing him to not have an immune system. The b cells that were being produced were leukemic. It was one of those situations that isn't common and so the research began to find out if this is something chemo related, which is what they thought in the beginning of this 6 months ago, or if it was something he was born with so they tested. Part of their research had the drs pull

his records from his birth (until he was about 9 weeks old) which were in Loma , CA (his birth place) to see what tests they ran and what the outcome. was born with TOF and his 1st surgery was in Loma which is why he was there for 9 weeks. We live in OH, so all other records are here. After the records came here, the drs found he was tested for immunity levels and that he was born without an immune system-or lack of b cells. Just seems Loma knew his lack of immunity, but didn't send me with that information, or even tell me. I would have thought this would be pertinent information for a little guy who had open heart surgery at 17 days old and another one at 6 months old. We have been blessed that until his AAL dx, he had frequent ear infections and nothing any more serious than that. Since the chemo began, has been sicker than what they ever expected for his situation which caused them to take a

close look at his blood work history and thats when this was found. As some of you know, is adopted which is why he was in CA at birth and now in OH. In the information we were given about him,from the agency and hospital, which was supposed to be everything, noone in his birth family has any of these health issues, so it's just something with him.

I just would like to know if anyone else is going through anything similar or has heard of anything like this before. I did ask if this lack of producing b cells is something found more in children who have ds, or not, and the drs have said it's not something that's found more often in children with or even children without ds. Generally children show signs from early in childhood that alarm the drs there's a problem that leads them to test and find this, but in his situation, all the tube placements and ear infections apparently wasn't enough to cause anyone to dig and find this out. Even though he was born with this, the blood work they took 6 months ago to test to see if they could find anything genetic came back negative.

So receives IVIG (immunity given to him weekly) and will have to receive this the rest of this life. Just one more thing but no big deal compared to all the other things we've had to deal with, that is until it's time for another weekly treatment, and then moans and groans about it for days after and then he finally stops about it, only to have to do it all over again. It's not something real painful to have to receive, but he psychs himself up every single week over getting poked even though he has his numbing cream, and then we deal with his issues with tape, which I think is worse for him than receiving these tiny little pokes without using the cream and tape to hold it there. After 6 months he still complains about it and the way it seems to be going, I don't think that will ever end. I feel so bad for him. He's been through so much and the worst part of all of it I think is having tape removed because it pulls his skin and hurts (we

don't always have dettach all, actually we rarely do) no matter how gentle or how quick, or how anything that's one of the hardest parts of any of this.

So Anyone have anything like this going on...anyone having issues with b cells or lack of b cells? What have you experienced? What did the drs have to say? Is it a life long issue? What else have you learned about this and have you been offered any better options than say weekly IVIG (or sub-q which is what we're doing now) Any suggestions or ideas or anything?

Thanks for your time and thanks for anyone who took the time to read this.

Joy