A few questions regarding THI??

[Guest guest]

This may be a dumb question. But Iafter reading some of the posts I

am wondering about my son, Aidan. He is two and just diagnosed with

XLA. His numbers are IgG <48, IgM of 28, IgA of 3. The doctor will

run genetic tests soon. In the meantime, I have been looking for any

possibilty that this is THI and that he will grow out of it.I read a

about a several cases where the childeren did not grow out of it

unil 36-39 months.I know;I should probably not think that but I was

wondering what exactly is the difference between the two? Are his

numbers too low to be anything else?

My other concern is that now that he is getting subQ treatment will

the doctor ever be able to tell if he would ever start producing his

own antibodies. The doctor said he would be checking twice a year

for his counts and to make sure the dosage is correct and at that

time would be able to tell if he is producing his own antibodies or

not. I don't understand how this is possible?

I am sorry if I seem so clueless! We just found out about this April

14th so I have been getting a crash course in PID! Thanks for your

help!

, mom of Aidan 2 years (XLA)

[Guest guest]

If Aidan is truly dxed with XLA, then your doc should have run two tests to

distinguish THI from XLA:

B and T cell Flow Cytometry

Humoral Immune Panel

He should not have made a dx of XLA with simple IG levels, since there are

other possibilities with simple IG deficiency. So I would assume that the above

tests have been run----and I would ask for the results.

If they have been done, and the results point to XLA, then THI is ruled out

and is not a possibility. Since your son is very young, like mine, XLA would be

the only probable dx. even without the genetic test.

I know that the B and T cell test shows whether or not there are mature

B-cells. If there ARE mature B-cells, then THI would be the dx. Without mature

B-cells, it is XLA. I believe that the immune panel looks for response to

specific vaccinations---someone else on the list can probably tell you more

about that test and what it means.

I would be surprised if your doc said " XLA " without " doing his

homework " .....XLA is a diagnosis for life, but IG is VERY GOOD at filling the

holes in our sons' immune system. On SCIG and prophylactic abx, my son Calvin

is pretty much a normal little kid and quite healthy.

For more info, if you have not already, hop on over to

XLA_community and join up. It is a group for XLA patients and

their families...and it is relatively quiet to this group, but will perk right

up if you have questions. I have really enjoyed getting to know the older XLA

patients who are adults and seeing how well they are doing on IG replacement.

Hope this helps

Fisher

mom of Calvin, 5yo, XLA

oshanegt <melissaoshane@...> wrote:

This may be a dumb question. But Iafter reading some of the posts I

am wondering about my son, Aidan. He is two and just diagnosed with

XLA. His numbers are IgG <48, IgM of 28, IgA of 3. The doctor will

run genetic tests soon. In the meantime, I have been looking for any

possibilty that this is THI and that he will grow out of it.I read a

about a several cases where the childeren did not grow out of it

unil 36-39 months.I know;I should probably not think that but I was

wondering what exactly is the difference between the two? Are his

numbers too low to be anything else?

My other concern is that now that he is getting subQ treatment will

the doctor ever be able to tell if he would ever start producing his

own antibodies. The doctor said he would be checking twice a year

for his counts and to make sure the dosage is correct and at that

time would be able to tell if he is producing his own antibodies or

not. I don't understand how this is possible?

I am sorry if I seem so clueless! We just found out about this April

14th so I have been getting a crash course in PID! Thanks for your

help!

, mom of Aidan 2 years (XLA)

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[Guest guest]

Welcome new parents and !

-

I am not an expert in PIDs either but my daughter is currently classified as

CVID and needs IVIG but there are still many ways to monitor her immune

function.

For example, IgM is an indicator of immune function and there are antibodies

associated with it. If IgM and IgA numbers/function are not improving, then it

is likely that IgG is not either. T-cells numbers and function can still be

easily tested. B-cells can be monitored (as discussed) and, if certain ones

are low (which is the case with XLA), the body will not have the capacity to

manufacture enough immunoglobulin. I believe that if IgG levels are going up,

and your child's IgG is being monitored, you will see spikes in his " trough "

levels. This could be evidence of natural improvement. There is also the

bacteriophage study which can be done while on IVIG (to test for antibody

function). However, with numbers as low as you report, I don't see the point in

doing this test or thinking too hard about THI -- as this may be false hope.

Aiden is blessed to have you as his mother. Seems like you went to the right

places for help. With early intervention and proper treatment, it is possible

to have a relatively " normal " life.

mom to CVIDer

[Guest guest]

Thank you and for your responses. It helped so much. I

knew I was getting my hopes up I just needed someone to tell me!

I am feeling much better than I first did with his dx. It does take

adjustment as I am sure you are all greatly aware of. I really

appreciete this support group-it has kept my sanity!

I have a call into the doctor with another battery of questions. I

usually am on the phone with him for a half hour at a time. I am

sure my neurotic tenedency will soon calm down. I trust that he is a

good doctor. But from what I have seen from these posts and online

PID is still so rare and there does not seem to be that many

experienced doctors.

The doctor did mention the possibilty of hyper-IgM syndrome, which I

am not sure if he still thinks this or not. I beleive this was

before further testing he did. I believe he did the other two tests

that you mentioned but I don't know the results. I will ask.I assume

this confirmed his dx of XLA but he had also said there was still a

possibilty it was not XLA. ugh! But what on earth could it possibly

be then?

Sorry to vent!! I know I am fortunate to have some kind of dx at

least.

Again thank you for your responses they were such a great help.

Take care,

, mom of Aidan 2 yrs old (XLA)

>

> Welcome new parents and !

>

> -

>

> I am not an expert in PIDs either but my daughter is currently

classified as CVID and needs IVIG but there are still many ways to

monitor her immune function.

>

> For example, IgM is an indicator of immune function and there

are antibodies associated with it. If IgM and IgA numbers/function

are not improving, then it is likely that IgG is not either. T-

cells numbers and function can still be easily tested. B-cells can

be monitored (as discussed) and, if certain ones are low (which

is the case with XLA), the body will not have the capacity to

manufacture enough immunoglobulin. I believe that if IgG levels are

going up, and your child's IgG is being monitored, you will see

spikes in his " trough " levels. This could be evidence of natural

improvement. There is also the bacteriophage study which can be

done while on IVIG (to test for antibody function). However, with

numbers as low as you report, I don't see the point in doing this

test or thinking too hard about THI -- as this may be false hope.

>

> Aiden is blessed to have you as his mother. Seems like you went

to the right places for help. With early intervention and proper

treatment, it is possible to have a relatively " normal " life.

>

>

> mom to CVIDer

>

>

>

[Guest guest]

,

You are so very smart! I am so happy to see you put in writing so

eloquently what my brain has been saying....

's IGM is going down...which to me has meant his immune system

isn't kicking in....I think that it is almost more concerning as we are

replacing his IGG, so shouldn't his IGM be going up as it is the

precursor for the IGG???

Thanks for what you share with us...

Re: A few questions regarding THI??

Welcome new parents and !

-

I am not an expert in PIDs either but my daughter is currently

classified as CVID and needs IVIG but there are still many ways to

monitor her immune function.

For example, IgM is an indicator of immune function and there are

antibodies associated with it. If IgM and IgA numbers/function are not

improving, then it is likely that IgG is not either. T-cells numbers

and function can still be easily tested. B-cells can be monitored (as

discussed) and, if certain ones are low (which is the case with

XLA), the body will not have the capacity to manufacture enough

immunoglobulin. I believe that if IgG levels are going up, and your

child's IgG is being monitored, you will see spikes in his " trough "

levels. This could be evidence of natural improvement. There is also

the bacteriophage study which can be done while on IVIG (to test for

antibody function). However, with numbers as low as you report, I don't

see the point in doing this test or thinking too hard about THI -- as

this may be false hope.

Aiden is blessed to have you as his mother. Seems like you went to

the right places for help. With early intervention and proper

treatment, it is possible to have a relatively " normal " life.

mom to CVIDer