Lurker - Roll Call

[Guest guest]

Another lurker coming out of the shadows. I've been on the list for a few

weeks, and am trying to learn more about what's going on with my kids. I know

I'll eventually have questions, but right now, I don't even know where to start.

Name:

Location: Missouri

PID Pumpkin: , 5

Diagnosed at age 4 with IgG def., low numbers of NK cells, and more that I don't

understand at this point.

Additional Health Concerns: has ulcerative colitis, and autism. He takes

bactrim daily as a prophylactic as well as risperdal and sulfasalazine for his

other issues. He's been sick for the last 3 weeks, but had been pretty healthy

for about 12 weeks before that.

PID Pumpkin: Connor, 2

Diagnosed at 16 months with IgG deficiency. They've screwed up his blood work a

couple of times, and at this, we don't have a clear picture of what's going on

with him.

Additional Health Concerns: Connor also has autism and has been treated since

infancy for severe reflux. He just had an endoscopy last week that was

beautiful, showed no signs of reflux, but he still seems to be in pain. He's

taking Omnicef as a prophylactic and Nexium and carafate for the reflux. They

want to keep him on the reflux meds despite the perfect endoscopy. He has tubes

and will be getting his second pair in a few weeks when they take out his

adenoids. They are talking about IVIG for him.

I've learned a lot just hanging out here. Thanks so much!

[Guest guest]

,

I can't say I understand what it is like to parent a child with

autism (or two in your case) but I worked with kids with varying

degrees of autism for years, as well as their parents. I know the

stress it can be on a family, and then add this on top of

it..yikes! If you ever want to talk therapy(I did ABA, though I

don't endorse it as a cure all for all kids) I would be more than

willing to listen. Use this group to vent, you have two special

kids, but I'm sure it is overwhelming!

Fritze

Ana, 13mo IgG def, FTT, atopic and ???

>

> Another lurker coming out of the shadows. I've been on the list

for a few weeks, and am trying to learn more about what's going on

with my kids. I know I'll eventually have questions, but right now,

I don't even know where to start.

>

> Name:

> Location: Missouri

>

> PID Pumpkin: , 5

> Diagnosed at age 4 with IgG def., low numbers of NK cells, and

more that I don't understand at this point.

> Additional Health Concerns: has ulcerative colitis, and

autism. He takes bactrim daily as a prophylactic as well as

risperdal and sulfasalazine for his other issues. He's been sick

for the last 3 weeks, but had been pretty healthy for about 12 weeks

before that.

>

> PID Pumpkin: Connor, 2

> Diagnosed at 16 months with IgG deficiency. They've screwed up

his blood work a couple of times, and at this, we don't have a clear

picture of what's going on with him.

> Additional Health Concerns: Connor also has autism and has been

treated since infancy for severe reflux. He just had an endoscopy

last week that was beautiful, showed no signs of reflux, but he

still seems to be in pain. He's taking Omnicef as a prophylactic

and Nexium and carafate for the reflux. They want to keep him on

the reflux meds despite the perfect endoscopy. He has tubes and

will be getting his second pair in a few weeks when they take out

his adenoids. They are talking about IVIG for him.

>

> I've learned a lot just hanging out here. Thanks so much!

>

>

>

>

>

>

>

>

[Guest guest]

Thanks ! ABA rocks! It's made a world of difference for my younger son.

Truth be told, the immune issues have always played second fiddle to the autism,

but as they are getting older, the health issues are becoming more and more of

an issue, and I'm hoping if we can get a handle on their health that the

behavioral issues will lessen some. Thanks again for the support!

, 5 IgG def. and autism

Connor, 2 IgG def. and autism

Re: Lurker - Roll Call

,

I can't say I understand what it is like to parent a child with

autism (or two in your case) but I worked with kids with varying

degrees of autism for years, as well as their parents. I know the

stress it can be on a family, and then add this on top of

it..yikes! If you ever want to talk therapy(I did ABA, though I

don't endorse it as a cure all for all kids) I would be more than

willing to listen. Use this group to vent, you have two special

kids, but I'm sure it is overwhelming!

Fritze

Ana, 13mo IgG def, FTT, atopic and ???