UPDATE..(Now we may have an Immune Deficient CHild)

[Guest guest]

First and forremost, Thank you EACH AND EVERY ONE OF YOU who has taken the time

out to reply. I was very very upset and pretty much beside myself last night.

All of your response helped lift me up. Thank You.

 

So we had 's Sinus CT and CHest CT today. Sinus wise he had thickening but

looked good, turbinates are swollen, but antrostomies are still open. They

admitted that his one side is small, ( duh I told them that) and that he really

doesn't have any aeration in his frontal sinus' so they must be small as well.

His Chest CT had " thickening " (so in essance not normal, noticable changes) but

of course that is because he has uncontrolled asthma according to them. It

couldn't possibly be because of lung infections.

 

From there they entertained a few ?? from me but part way through I could tell

they were done with me. I was welcome to call them with any further ??, even get

both me and my husband on the line at the same time if I wanted.

 

They basically discounted the fact he ever had any true invasive fungal

infection because kids who get fungal infections never clear their sinus CT's.

And that he really doesnt see any orbital floor dehiscence (even though I could

see from across the room the fat pad pouching out into his maxillary sinus. When

I poiinted this out they said their radiologist didnt see anything. NOT an ENT

mind you who has previously read our CT's)

 

They also said again that he's allergic and that its all about asthma control

and sinus prevention and if we treat that then there will be no more issues. (Oh

yeah and no more sinus surgery either, I guess that is the evil of all evil~we

havent needed sinus surgery in a few years but they make it seem like yesterday)

When I asked how they would have treated my kids had they treated them from the

get go and they said more aggressive asthma management and sinus rinses etc.

Hellooo we were on daily oral steroids, maxed inhaled steroids, you name it we

were on it. Again they were hearing none of it.

 

They ended with that if we decide to " trust " their opinion and have the

" courage " to take their plan, that if he needs IVIG (in their eyes) then he will

get it and then he would be on it for life. They also said that IF his vaccine

titers came back low, they would repeat the lab because they wouldn't

necessarily trust it. But IF he went back on IVIG then they would look into

genetic components at that time. All of this I was so frustrated and not ok

with. If you arent going to trust a lab then why do it in the first place?

 

So.....

Luckily I still keep in contact with my old pediatricians. So I called my one in

MN last night upset and we talked. I emailed the immunology group and my ped

talked to her as well and explained the situation to her. She was appalled and

stated to my Ped that in her opinion NEEDS his IVIG, especially coming into

cold/flu season. She also stated that 's asthma is fairly well controlled.

So this group has a new immunologist from Seattle and this person has agreed to

be an objective 3rd party and look at the boys stuff for us to try and sort this

out, since I dont know what will happen when we return to NM now. (Our old

Immuno's are in MN)

 

So all in all, todays visit other than the CT's was a waste. This guy WOULDN " T

entertain at ALL the idea of any genetic testing until after we re-vaccinate and

test. (but of course in their eyes his vaccines will be fine.) He didn't even

want to retest Max's antibody testing AT ALL. When I asked about the 23 valent

pneumococcus he said no I would only give prevnar.

 

One more question though... Isnt there a way to test antibody function without

revaccinating?

 

So we are still dealing with all sort of emotions. Especiallly since my mom was

with me for the intial visit and when He said the boys are normal they dont'

have an immune deficiency that's all she heard. So NOW I'm the crazy one.

 

If anyone has any more experiences about what you did afterwards, etc I would

love to hear them, I think I'm going to try and compile them together to make my

point valid to our family.

 

Missy

[Guest guest]

I do have a couple of thoughts. One is that if you are not using nasal rinses

with a bottle or the water pik kind then you are not getting an optimum clearing

of the sinuses. We had tried everything as far as meds with very little results

But as soon as we started the daily rinses with salt water and I think it also

has soda Gas well as in our case we are using pulmicort in the nasal rinse. This

has made more difference than ANYTHING we have used as far as steroid sprays or

antibiotics or anything. My son use to hate it but we purchased a Grochen unit

and it has changed the course of his sinuses. I know from our previous

immunlogists that they are very strong on it a National Jewish.

AND I will NEVER take my mom again to any medical appointments. My mom is a

nurse practitioner and I have found that she generally overreacts in one

direction or another. I just prefer to do it on my own or take a friend.

BARBIE

UPDATE..(Now we may have an Immune Deficient CHild)

First and forremost, Thank you EACH AND EVERY ONE OF YOU who has taken the time

out to reply. I was very very upset and pretty much beside myself last night.

All of your response helped lift me up. Thank You.

So we had 's Sinus CT and CHest CT today. Sinus wise he had thickening but

looked good, turbinates are swollen, but antrostomies are still open. They

admitted that his one side is small, ( duh I told them that) and that he really

doesn't have any aeration in his frontal sinus' so they must be small as well.

His Chest CT had " thickening " (so in essance not normal, noticable changes) but

of course that is because he has uncontrolled asthma according to them. It

couldn't possibly be because of lung infections.

From there they entertained a few ?? from me but part way through I could tell

they were done with me. I was welcome to call them with any further ??, even get

both me and my husband on the line at the same time if I wanted.

They basically discounted the fact he ever had any true invasive fungal

infection because kids who get fungal infections never clear their sinus CT's.

And that he really doesnt see any orbital floor dehiscence (even though I could

see from across the room the fat pad pouching out into his maxillary sinus. When

I poiinted this out they said their radiologist didnt see anything. NOT an ENT

mind you who has previously read our CT's)

They also said again that he's allergic and that its all about asthma control

and sinus prevention and if we treat that then there will be no more issues. (Oh

yeah and no more sinus surgery either, I guess that is the evil of all evil~we

havent needed sinus surgery in a few years but they make it seem like yesterday)

When I asked how they would have treated my kids had they treated them from the

get go and they said more aggressive asthma management and sinus rinses etc.

Hellooo we were on daily oral steroids, maxed inhaled steroids, you name it we

were on it. Again they were hearing none of it.

They ended with that if we decide to " trust " their opinion and have the

" courage " to take their plan, that if he needs IVIG (in their eyes) then he will

get it and then he would be on it for life. They also said that IF his vaccine

titers came back low, they would repeat the lab because they wouldn't

necessarily trust it. But IF he went back on IVIG then they would look into

genetic components at that time. All of this I was so frustrated and not ok

with. If you arent going to trust a lab then why do it in the first place?

So.....

Luckily I still keep in contact with my old pediatricians. So I called my one in

MN last night upset and we talked. I emailed the immunology group and my ped

talked to her as well and explained the situation to her. She was appalled and

stated to my Ped that in her opinion NEEDS his IVIG, especially coming into

cold/flu season. She also stated that 's asthma is fairly well controlled.

So this group has a new immunologist from Seattle and this person has agreed to

be an objective 3rd party and look at the boys stuff for us to try and sort this

out, since I dont know what will happen when we return to NM now. (Our old

Immuno's are in MN)

So all in all, todays visit other than the CT's was a waste. This guy WOULDN " T

entertain at ALL the idea of any genetic testing until after we re-vaccinate and

test. (but of course in their eyes his vaccines will be fine.) He didn't even

want to retest Max's antibody testing AT ALL. When I asked about the 23 valent

pneumococcus he said no I would only give prevnar.

One more question though... Isnt there a way to test antibody function without

revaccinating?

So we are still dealing with all sort of emotions. Especiallly since my mom was

with me for the intial visit and when He said the boys are normal they dont'

have an immune deficiency that's all she heard. So NOW I'm the crazy one.

If anyone has any more experiences about what you did afterwards, etc I would

love to hear them, I think I'm going to try and compile them together to make my

point valid to our family.

Missy

[Guest guest]

I'm sorry you've have to put up with those Dr's:( Yes there are ways they

can test without revax'ing but for the life of me I can't remember what they

did for dd. I know one of the tests had something to do with the ability to

fight yeast. There's another mom or 2 on here that do not vax, perhaps they

will chime in on how they got dx?

UPDATE..(Now we may have an Immune Deficient CHild)

First and forremost, Thank you EACH AND EVERY ONE OF YOU who has taken the

time out to reply. I was very very upset and pretty much beside myself last

night. All of your response helped lift me up. Thank You.

So we had 's Sinus CT and CHest CT today. Sinus wise he had thickening

but looked good, turbinates are swollen, but antrostomies are still open.

They admitted that his one side is small, ( duh I told them that) and that

he really doesn't have any aeration in his frontal sinus' so they must be

small as well. His Chest CT had " thickening " (so in essance not normal,

noticable changes) but of course that is because he has uncontrolled asthma

according to them. It couldn't possibly be because of lung infections.

From there they entertained a few ?? from me but part way through I could

tell they were done with me. I was welcome to call them with any further ??,

even get both me and my husband on the line at the same time if I wanted.

They basically discounted the fact he ever had any true invasive fungal

infection because kids who get fungal infections never clear their sinus

CT's. And that he really doesnt see any orbital floor dehiscence (even

though I could see from across the room the fat pad pouching out into his

maxillary sinus. When I poiinted this out they said their radiologist didnt

see anything. NOT an ENT mind you who has previously read our CT's)

They also said again that he's allergic and that its all about asthma

control and sinus prevention and if we treat that then there will be no more

issues. (Oh yeah and no more sinus surgery either, I guess that is the evil

of all evil~we havent needed sinus surgery in a few years but they make it

seem like yesterday) When I asked how they would have treated my kids had

they treated them from the get go and they said more aggressive asthma

management and sinus rinses etc. Hellooo we were on daily oral steroids,

maxed inhaled steroids, you name it we were on it. Again they were hearing

none of it.

They ended with that if we decide to " trust " their opinion and have the

" courage " to take their plan, that if he needs IVIG (in their eyes) then he

will get it and then he would be on it for life. They also said that IF his

vaccine titers came back low, they would repeat the lab because they

wouldn't necessarily trust it. But IF he went back on IVIG then they would

look into genetic components at that time. All of this I was so frustrated

and not ok with. If you arent going to trust a lab then why do it in the

first place?

So.....

Luckily I still keep in contact with my old pediatricians. So I called my

one in MN last night upset and we talked. I emailed the immunology group and

my ped talked to her as well and explained the situation to her. She was

appalled and stated to my Ped that in her opinion NEEDS his IVIG,

especially coming into cold/flu season. She also stated that 's asthma

is fairly well controlled. So this group has a new immunologist from Seattle

and this person has agreed to be an objective 3rd party and look at the boys

stuff for us to try and sort this out, since I dont know what will happen

when we return to NM now. (Our old Immuno's are in MN)

So all in all, todays visit other than the CT's was a waste. This guy

WOULDN " T entertain at ALL the idea of any genetic testing until after we

re-vaccinate and test. (but of course in their eyes his vaccines will be

fine.) He didn't even want to retest Max's antibody testing AT ALL. When I

asked about the 23 valent pneumococcus he said no I would only give prevnar.

One more question though... Isnt there a way to test antibody function

without revaccinating?

So we are still dealing with all sort of emotions. Especiallly since my mom

was with me for the intial visit and when He said the boys are normal they

dont' have an immune deficiency that's all she heard. So NOW I'm the crazy

one.

If anyone has any more experiences about what you did afterwards, etc I

would love to hear them, I think I'm going to try and compile them together

to make my point valid to our family.

Missy