Lucile Packard will give us IVIG

[mama2alex]

Okay, any input on this would be much appreciated. My son has been diagnosed with an immune deficiency (Selective Antibody Deficiency to strep pneumoniae), and Lucile Packard is planning to give him monthly IVIG. We are very happy and thankful for this, BUT the problem is, through an unusual set of circumstances, we haven't actually seen the immunologist there yet and through the nurse he's saying he's "not comfortable" giving 2g/kg to start. He's only willing to give 1g/kg. I know he prescribed 2g/kg for another family, so I don't know what's going on behind the scenes. We saw an immunologist at UCLA who ordered the tests, so maybe he called the immuno at Lucile Packard and recommended the lower dose. Or maybe it's just because he hasn't seen my son yet and hasn't seen his Cunningham results.

 

In any event, I'm very frustrated and upset because this is just a random dosage, not the dosage used by Dr. K in Chicago or by Susan Swedo. I'm so upset my stomach is in knots - I hate to say it, but I knew there would be some kind of roadblock thrown up. I told the nurse about the Swedo study and said I knew another PANDAS child had been given 2g/kg. I also asked her to have him call me.

 

I need some input on what to say to him - I do NOT want to do this half way! My son is suffering so much, I have not worked for 5 months to get him help only to get a lower dose than we need!

[Buster]

First and foremost, go see him. He's a lot easier to convince in person. We did 1g/kg but on two consecutive days. Perhaps he'll do that too. The high dose in one day takes forever at the standard infusion rates and you'll be in for > 10 hours if you try it in one day.

 

We were trying for the single dose rather than monthly since we did not have the Selective Antibody Deficiency diagnosis. Go see him in person. He sort of complained that he really can't treat someone without seeing them :-) I actually agree with that so really, truly recommend seeing him if you can.

 

Remember to recruit him otherwise he'll probably send you back to UCLA....

 

By the way, LP is quite expensive for IVIG (like 10x) -- be glad for insurance...

 

Buster

 

Okay, any input on this would be much appreciated. My son has been diagnosed with an immune deficiency (Selective Antibody Deficiency to strep pneumoniae), and Lucile Packard is planning to give him monthly IVIG. We are very happy and thankful for this, BUT the problem is, through an unusual set of circumstances, we haven't actually seen the immunologist there yet and through the nurse he's saying he's "not comfortable" giving 2g/kg to start. He's only willing to give 1g/kg. I know he prescribed 2g/kg for another family, so I don't know what's going on behind the scenes. We saw an immunologist at UCLA who ordered the tests, so maybe he called the immuno at Lucile Packard and recommended the lower dose. Or maybe it's just because he hasn't seen my son yet and hasn't seen his Cunningham results.

 

In any event, I'm very frustrated and upset because this is just a random dosage, not the dosage used by Dr. K in Chicago or by Susan Swedo. I'm so upset my stomach is in knots - I hate to say it, but I knew there would be some kind of roadblock thrown up. I told the nurse about the Swedo study and said I knew another PANDAS child had been given 2g/kg. I also asked her to have him call me.

 

I need some input on what to say to him - I do NOT want to do this half way! My son is suffering so much, I have not worked for 5 months to get him help only to get a lower dose than we need!

[EAMom]

Don't panic until you see Dr. Lewis in person. Make sure you have your Dr. Cunningham results with you.

 

Bring the Swedo paper that says (highlighted) 1 gm/kg on two consecutive days...then write in the margins "= 2gm/kg total dose".

 

It wouldn't hurt to also send Dr. K. an e-mail to ask him which dose he would recommend 1.5mg/kg or 2.0mg/kg. He might rec. the lower 1.5mg/kg but at least you would have that on paper to show Dr. Lewis...which might be a good amount, esp. if you are following up with lower monthly infusions.

 

Tell him it would be a shame to go through IVIG but not (at least initially) do it at a dose that would address the PANDAS (and not just the immune def.).

[mama2alex]

Thanks EAMom and Buster. We scheduled an appointment with him a while back, but it's not for another 2 1/2 weeks, which seems like forever. Do you think I should just have them wait until we see him then? Or do you think if I took in the CamKinase results and a list of symptoms (it's long and impressive!) and gave it to the nurse, he might go ahead and order the higher dose without seeing us. I wish I could move up the appointment, but I've called them 5 times in the last few weeks to try to reschedule and he never has any cancellations.

 

 

Don't panic until you see Dr. Lewis in person. Make sure you have your Dr. Cunningham results with you.

 

Bring the Swedo paper that says (highlighted) 1 gm/kg on two consecutive days...then write in the margins "= 2gm/kg total dose".

 

It wouldn't hurt to also send Dr. K. an e-mail to ask him which dose he would recommend 1.5mg/kg or 2.0mg/kg. He might rec. the lower 1.5mg/kg but at least you would have that on paper to show Dr. Lewis...which might be a good amount, esp. if you are following up with lower monthly infusions.

 

Tell him it would be a shame to go through IVIG but not (at least initially) do it at a dose that would address the PANDAS (and not just the immune def.).

[Buster]

Hard to say. I found that he, like many other doctors, are very pressed for time and it's super unlikely he'll read material until you are there with him. Then realize he'll probably send in some graduate student who will take a history -- don't try to convince the grad student -- he's just there for the history. Hand the grad student (fellow) your history or recite it to him. It's odd, but they really like to hear it orally and don't worry about it, just read it out loud or use it as a crib sheet. Be crisp, be clear, go at a comfortable writing pace. He'll probably interrupt you and ask:

* any history of rheumatic fever

* any subcutaneous nodules

* any recent trauma

*...

 

It'll drive you a bit nuts, but keep it simple, direct and matter of fact. Eventually the grad student will go out and then bring the doctor in. It reminded me of being in a car salesman situation :-)

 

Our 20 min appointment took almost 1.5 hours and our dd was going a bit nuts waiting around -- the good part is the doctor got to see some of the odd behavior.

 

My point is that the doctor sees a lot of folks who have likely been misdiagnosed by others (hence why they are seeing him). He comes across as discounting parental observation and not thinking other doctors know what they are doing. Don't worry about it. Realize this is just his style. In our case, he needed to run all his own blood work to rule out something else before we could progress to the next stage. It was extremely frustrating but we just swallowed hard and walked through the steps. He held all the cards so we just kept very rational and direct. Remember, he can always tell you to go back to UCLA so he's an approval body and probably doesn't want to be the PANDAS doc.

 

On the CaM Kinase II, he knows the material, and also is very aware that this is a research study. This means he'll use it as strictly another piece in the puzzle rather than being diagnostic. The anti-lysogangliosides are probably going to be more meaningful to him than the CaM Kinase -- but it does help that the Kirvan papers are in Nature and JNI.

 

My strongest recommendation is to see him in person, let him speak, listen to his arguments and let him know your reasons. I know it all seems like giant toll-booths on the way to a solution and lord knows we were frustrated by how many hoops or gates to jump through, but if you just treat it like it is just a process and you stay calm, I think you'll get a good result.

 

Wishing you calm...

 

Buster

 

 

 

Thanks EAMom and Buster. We scheduled an appointment with him a while back, but it's not for another 2 1/2 weeks, which seems like forever. Do you think I should just have them wait until we see him then? Or do you think if I took in the CamKinase results and a list of symptoms (it's long and impressive!) and gave it to the nurse, he might go ahead and order the higher dose without seeing us. I wish I could move up the appointment, but I've called them 5 times in the last few weeks to try to reschedule and he never has any cancellations.

[sf_mom]

We had a very similar experience.... I think we blew his graduate student out of the water with information. Dr. Lewis is a very reasonable person and will openly discusses his theories. I think a sticking point he had with our case was the negative anti-DNAse-B and only slightly elevated ASO of 244. Again, he wasn't willing to give Corsa a specific immune deficiency without revaccinating which we were unwilling to do. One suggestion would be to fax all the information you want to discuss with him in advance. I saw him reading it and reviewing with graduate student prior to meeting with us. Our appointment was also 1.5 hours long and Corsa was getting so restless so we had to cut it short.

 

I know you'll get it all figured out but definitely wait to meet with him before you push too hard. I know the 2 1/2 weeks feels like a lifetime but you are definitely heading in the right direction.

 

-Wendy

[ShaesMom]

Okay, any input on this would be much appreciated. My son has been diagnosed with an immune deficiency (Selective Antibody Deficiency to strep pneumoniae), and Lucile Packard is planning to give him monthly IVIG. We are very happy and thankful for this, BUT the problem is, through an unusual set of circumstances, we haven't actually seen the immunologist there yet and through the nurse he's saying he's "not comfortable" giving 2g/kg to start. He's only willing to give 1g/kg. I know he prescribed 2g/kg for another family, so I don't know what's going on behind the scenes. We saw an immunologist at UCLA who ordered the tests, so maybe he called the immuno at Lucile Packard and recommended the lower dose. Or maybe it's just because he hasn't seen my son yet and hasn't seen his Cunningham results.

 

In any event, I'm very frustrated and upset because this is just a random dosage, not the dosage used by Dr. K in Chicago or by Susan Swedo. I'm so upset my stomach is in knots - I hate to say it, but I knew there would be some kind of roadblock thrown up. I told the nurse about the Swedo study and said I knew another PANDAS child had been given 2g/kg. I also asked her to have him call me.

 

I need some input on what to say to him - I do NOT want to do this half way! My son is suffering so much, I have not worked for 5 months to get him help only to get a lower dose than we need!

 

We received a total of 2 g/kg over a two day period. I believe this amount is standard for autoimmune illnesses.

[mama2alex]

Thanks Buster. This is great advice. Thankfully, I think we've done all the labs they'll ever need (much of it at Lucile Packard), and they've already identified his immune deficiency. So hopefully we'll just need to discuss the initial dosage.

 

I will try to stay calm and be patient a little longer.l

 

Thanks again,

Jennifer

 

Hard to say. I found that he, like many other doctors, are very pressed for time and it's super unlikely he'll read material until you are there with him. Then realize he'll probably send in some graduate student who will take a history -- don't try to convince the grad student -- he's just there for the history. Hand the grad student (fellow) your history or recite it to him. It's odd, but they really like to hear it orally and don't worry about it, just read it out loud or use it as a crib sheet. Be crisp, be clear, go at a comfortable writing pace. He'll probably interrupt you and ask:

* any history of rheumatic fever

* any subcutaneous nodules

* any recent trauma

*...

 

It'll drive you a bit nuts, but keep it simple, direct and matter of fact. Eventually the grad student will go out and then bring the doctor in. It reminded me of being in a car salesman situation :-)

 

Our 20 min appointment took almost 1.5 hours and our dd was going a bit nuts waiting around -- the good part is the doctor got to see some of the odd behavior.

 

My point is that the doctor sees a lot of folks who have likely been misdiagnosed by others (hence why they are seeing him). He comes across as discounting parental observation and not thinking other doctors know what they are doing. Don't worry about it. Realize this is just his style. In our case, he needed to run all his own blood work to rule out something else before we could progress to the next stage. It was extremely frustrating but we just swallowed hard and walked through the steps. He held all the cards so we just kept very rational and direct. Remember, he can always tell you to go back to UCLA so he's an approval body and probably doesn't want to be the PANDAS doc.

 

On the CaM Kinase II, he knows the material, and also is very aware that this is a research study. This means he'll use it as strictly another piece in the puzzle rather than being diagnostic. The anti-lysogangliosides are probably going to be more meaningful to him than the CaM Kinase -- but it does help that the Kirvan papers are in Nature and JNI.

 

My strongest recommendation is to see him in person, let him speak, listen to his arguments and let him know your reasons. I know it all seems like giant toll-booths on the way to a solution and lord knows we were frustrated by how many hoops or gates to jump through, but if you just treat it like it is just a process and you stay calm, I think you'll get a good result.

 

Wishing you calm...

 

Buster

 

 

 

Thanks EAMom and Buster. We scheduled an appointment with him a while back, but it's not for another 2 1/2 weeks, which seems like forever. Do you think I should just have them wait until we see him then? Or do you think if I took in the CamKinase results and a list of symptoms (it's long and impressive!) and gave it to the nurse, he might go ahead and order the higher dose without seeing us. I wish I could move up the appointment, but I've called them 5 times in the last few weeks to try to reschedule and he never has any cancellations.

[mama2alex]

One suggestion would be to fax all the information you want to discuss with him in advance. I saw him reading it and reviewing with graduate student prior to meeting with us. Our appointment was also 1.5 hours long and Corsa was getting so restless so we had to cut it short.

 

I know you'll get it all figured out but definitely wait to meet with him before you push too hard. I know the 2 1/2 weeks feels like a lifetime but you are definitely heading in the right direction.

 

-Wendy

 

This is a great idea. I usually just bring my binder, but I'll send the most important information ahead of time.

 

And thanks for the encouragement. I feel very worn down at this point, and it's getting more and more challenging to stay positive.

[Buster]

Hang in there. It will all come out good. We went for the 1gm/kg/day (i.e., go in for 2 days). They are long days no matter what.

 

Buster

 

One suggestion would be to fax all the information you want to discuss with him in advance. I saw him reading it and reviewing with graduate student prior to meeting with us. Our appointment was also 1.5 hours long and Corsa was getting so restless so we had to cut it short.

 

I know you'll get it all figured out but definitely wait to meet with him before you push too hard. I know the 2 1/2 weeks feels like a lifetime but you are definitely heading in the right direction.

 

-Wendy

 

This is a great idea. I usually just bring my binder, but I'll send the most important information ahead of time.

 

And thanks for the encouragement. I feel very worn down at this point, and it's getting more and more challenging to stay positive.

[mama2alex]

Good news - Dr. Lewis is going to squeeze us in this Thursday. So we'll be able to have a discussion with him and he'll be able to see Alex before he decides on the initial dose. I was probably worried for nothing.

[EAMom]

 

We received a total of 2 g/kg over a two day period. I believe this amount is standard for autoimmune illnesses.

 

You are right. (I think sometimes they spread this dose over 5 consecutive days??)

[Buster]

That's great!