Re: No protocol for newborn

[Guest guest]

Well, the immuno says there's no protocol at all for the baby-to-be. They

assume this child will not have any problems. Which is a wonderful thought

and all, but we didn't know had problems until she almost died, we had

litte forewarning -- her first cold turned to first ear infection, two

courses of amoxicillin... then two days after she went off the abx she had

the big M. Can you blame us for being paranoid?

I guess I'll just use common sense and make everybody wash hands before

touching the baby, no sickies visiting (obviously), plus maybe we'll

re-instate our no-exceptions-you-wash-hands-upon-coming-in-the-door at home

policy of the bad old days. One thing that always irritated me with

when she was an infant, is people think nothing of coming up and pawing a

baby without asking. No preamble, just grab their hands and pinch their

cheeks, etc. Anybody have a polite way to stop that without diving in front

of the child or speaking sharply? When was in isolation I would have a

medical face mask dangling on the hood of the stroller, you could see it but

she wasn't wearing it. Seemed to help. But we're assuming this child is fine,

we just want to be careful. I also do NOT want to get into a whole story

" well his/her sister has an immune disorder " blah blah blah. Help!

My MIL will probably poison the baby with bleach for fear of germs. She is

sooo over the top with disinfecting things. She bought a new cup and

since she was out of clorox, she used COMET to clean it!! I about died!! I

told her dish soap and hot water would do!!!! Sheesh. Her heart's in the

right place but I'm not so sure about her head most days.

(mom to , age 3. Currently has polysaccharide antibody def,

previously had transient IgG, IgA, t-cell & other defs)

[Guest guest]

I have to add my dollar here....LOL.... I've got more than a few cents on this

one... ha ha

I would FORCE them to test the baby. F-O-R-C-E them. Sorry for being so

blunt. I have two kids with Shwachman-Diamond Syndrome. is 15 months

older than ph and ph was already born before was diagnosed.....

and when they dx him with SDS, I said, " ph has these symptoms of SDS' we

were told I was paranoid, that I shouldn;t be going on a wild goose chase, et,

etc...

I would test the baby just to be sure...if not for anything more than your peace

of mind.

We are all more likely than the AVERAGE family to have another child with an

immune problem.

We have had 13 pregnancy losses now.... and if we ever have another baby, they

will be forced to test them before we can SEE any symptoms.

Just my opinion! (don;t you just love me for it?)

><>Pattie

Well, the immuno says there's no protocol at all for the baby-to-be. They

assume this child will not have any problems. Which is a wonderful thought

and all, but we didn't know had problems until she almost died, we had

litte forewarning -- her first cold turned to first ear infection, two

courses of amoxicillin... then two days after she went off the abx she had

the big M. Can you blame us for being paranoid?

[Guest guest]

I forgot to add that I forced them to test ph and guess what? he has

SDS.....

It took them until ph was 2 to diagnose him. I think he would be healthier

if he had been diagnosed earlier. I brought it to their attention when he was

6-10 months old, wrote letters, etc.... it was NUTS...

Pattie

[Guest guest]

Pattie - what are you going to test them for? What labs could they draw?

There are only maternal antibodies in the baby so of course the labs are

going to be normal and not show anything. You can't draw response levels at

birth because they haven't been immunized to anything.

Possibly the only test that could be run at birth is a CBC with

differential. The differential is the key to this. A low lymphocyte count

would indicate a T-cell abnormality and the possibility of SCIDs. But if

the family history is positive for a b-cell problem then the CBC w/Diff

won't show anything abnormal.

B-cell problems (unless Bruton's which is DNA testable) are usually

difficult to diagnose until after the first year.

Ursula Holleman uahollem@... <mailto:uahollem@...>

and Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

wife to Les, 35, CVID

http://www..com

[Guest guest]

Pattie - what are you going to test them for? What labs could they draw?

There are only maternal antibodies in the baby so of course the labs are

going to be normal and not show anything. You can't draw response levels at

birth because they haven't been immunized to anything.

Possibly the only test that could be run at birth is a CBC with

differential. The differential is the key to this. A low lymphocyte count

would indicate a T-cell abnormality and the possibility of SCIDs. But if

the family history is positive for a b-cell problem then the CBC w/Diff

won't show anything abnormal.

B-cell problems (unless Bruton's which is DNA testable) are usually

difficult to diagnose until after the first year.

Ursula Holleman uahollem@... <mailto:uahollem@...>

and Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

wife to Les, 35, CVID

http://www..com

[Guest guest]

Pattie - remind me again what SDS is and what type of primary immune

deficiency it is?

Ursula Holleman uahollem@... <mailto:uahollem@...>

and Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

wife to Les, 35, CVID

http://www..com

[Guest guest]

Pattie - remind me again what SDS is and what type of primary immune

deficiency it is?

Ursula Holleman uahollem@... <mailto:uahollem@...>

and Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

wife to Les, 35, CVID

http://www..com

[Guest guest]

SDS is Shwachman-Diamond Syndrome, a genetic bone marrow failure syndrome which

includes pancreatic insufficiency (just like CF)...my has SDS and CVID.....

there is no genetic test available for SDS, but there are tests that they can do

to r/o it out...

My boys have neutropenia. leukopenia, lymphopenia and have 10% blasts in heir

bone marrow (early myelodysplastic syndrome...possible leukemia developing) they

have overexpression of p53 protein in their marrow cells, left shift in their

marrow, also has slight anemia and the CVID (deficient in total IgG (and

subclass 1 and 4) and IgM)

I didn;t know that you couldn;t test for the others until after 1 year. Sorry

about that! Certain SDS tests are more reliable once the child is older, but

there are several they can do...

><>Pattie

Pattie - remind me again what SDS is and what type of primary immune

deficiency it is?

Ursula Holleman uahollem@... <mailto:uahollem@...>

and Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

wife to Les, 35, CVID

http://www..com

[Guest guest]

SDS is Shwachman-Diamond Syndrome, a genetic bone marrow failure syndrome which

includes pancreatic insufficiency (just like CF)...my has SDS and CVID.....

there is no genetic test available for SDS, but there are tests that they can do

to r/o it out...

My boys have neutropenia. leukopenia, lymphopenia and have 10% blasts in heir

bone marrow (early myelodysplastic syndrome...possible leukemia developing) they

have overexpression of p53 protein in their marrow cells, left shift in their

marrow, also has slight anemia and the CVID (deficient in total IgG (and

subclass 1 and 4) and IgM)

I didn;t know that you couldn;t test for the others until after 1 year. Sorry

about that! Certain SDS tests are more reliable once the child is older, but

there are several they can do...

><>Pattie

Pattie - remind me again what SDS is and what type of primary immune

deficiency it is?

Ursula Holleman uahollem@... <mailto:uahollem@...>

and Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

wife to Les, 35, CVID

http://www..com