T and A

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Macey does not have tonsils but did have her adenoids removed when she was 2

and had a second set of tubes put in her ears. She still continues to sleep

very soundly and also had problems with nocturia until she was 7 or so. We

started DDAVP which helps but there is an endocrine problem also and that's

been better managed. She has had problems with anesthesia and surgery so

we've avoided scopes and surgeries if at all possible. If there is any

chance that he will start IVIG I would wait if possible and do the surgery

after his levels have normalized.

Ursula - mom to Macey (10,CVID) and (13)

http://members.cox.net/maceyh

Immune Deficiency Foundation http://www.primaryimmune.org

Pediatric PID email list

Modell Foundation http://jmfworld.org

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In a message dated 2/10/2006 12:04:48 PM Pacific Standard Time,

osdbmom@... writes:

........IF the chronic sinus infections are caused from the PID,

and possibly doing the IVIG would help it, is it worth a try to put

him thru the surgery for the T and A?

Or, should we try the T and A first, and then maybe the IVIG would

give him a better start? I just am having a hard time

deciding......once we see the neuro guy and ID guy I need to make the

follow up with the ENT.

,

If I had it to do all over again, I would have made sure Bri had IVIG first

then considered removing his adenoids and tonsils (not to mention sinus

surgeries). His infections are so much better--he only has a three or four

sinus

infections a year. Before IVIG, he had chronic (every two or three weeks)

sinus, strep or ear infections--sometimes two or three of these at the same

time.

The surgeries never helped--only IVIG helped. The ENT really wanted to help

him with surgery, but was looking at my son as if he were a normal child, not

a child with an immune deficiency. Just my two cents. You can always revisit

the idea of surgery if the IVIG isn't working for you.

Sandi, Mom to --age 13--CVID

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In a message dated 2/10/2006 12:04:48 PM Pacific Standard Time,

osdbmom@... writes:

........IF the chronic sinus infections are caused from the PID,

and possibly doing the IVIG would help it, is it worth a try to put

him thru the surgery for the T and A?

Or, should we try the T and A first, and then maybe the IVIG would

give him a better start? I just am having a hard time

deciding......once we see the neuro guy and ID guy I need to make the

follow up with the ENT.

,

If I had it to do all over again, I would have made sure Bri had IVIG first

then considered removing his adenoids and tonsils (not to mention sinus

surgeries). His infections are so much better--he only has a three or four

sinus

infections a year. Before IVIG, he had chronic (every two or three weeks)

sinus, strep or ear infections--sometimes two or three of these at the same

time.

The surgeries never helped--only IVIG helped. The ENT really wanted to help

him with surgery, but was looking at my son as if he were a normal child, not

a child with an immune deficiency. Just my two cents. You can always revisit

the idea of surgery if the IVIG isn't working for you.

Sandi, Mom to --age 13--CVID

[Guest guest]

Ok, here is what we learned today. The neuro that was supposed to be a

quick rule out so we could get on with the T and A, does not want us

to go ahead just yet. Reason being, I have 5 immediate family members

with severe epilepsy, I and several other family member have RLS(which

is neuro), and donovan exhibits some signs of a nocturnal neuro

problem. So , he pulled up his former sleep study, and while I was

informed that it was normal and no OSA, no one let me know that while

there was no OSA that night, he had major leg jerkings at least 15

times in every hr. Which could quite possibly indicate RLS or another

seizure disorder. So, we are going to do a more in depth sleep study,

with an actual EEG in place, so he doesnt have to go thru both, and

with an esophageal pressure monitor(he is going to love that) to see

if, even though his ox sats were normal the last time, he could be

having pressure internally...he explained it like this to

me........imagine sleeping, and only breathing thru a straw...yea, you

could get used to it and sleep, and your ox sats would probably be ok,

but, that is a sleep/breating problem that should be addrressed. So,

if that is the case, then the T and A is in, if only to open his

airway esp. at night. If the pressure monitor looks ok, but he is

still jerking thru the night , we need to possibly look more into a

seizure disorder that is causing is sleep problems, and not his

adenoids. So, I think, right now, we will wait on those results, and

see what the ID guy says. IF he wants donovan on IVIG, we'll give it a

go and see how the sinus/adenoid infections go. If we resolve the

sleep issues, and IVIG doesnt help, THEN, I think, we will go with the

T and A. Thanks for all the input. Sometimes its just so hard to have

all these things rattling around in your brain and needing someone to

bounce them off of.

Valarie

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In a message dated 2/13/2006 8:42:37 PM Pacific Standard Time,

osdbmom@... writes:

So, I think, right now, we will wait on those results, and

see what the ID guy says. IF he wants donovan on IVIG, we'll give it a

go and see how the sinus/adenoid infections go. If we resolve the

sleep issues, and IVIG doesnt help, THEN, I think, we will go with the

T and A. Thanks for all the input. Sometimes its just so hard to have

all these things rattling around in your brain and needing someone to

bounce them off of.

,

I'm happy to hear that you have some great Docs giving you good direction.

I would, however, call the hospital where the sleep study was done and find

out why you weren't notified about the abnormal results??

Hang in there--

Sandi, Mom to --age 13--CVID