For those doing monthly, scheduled IVIG

[FallingApart]

Hello,

 

Well, we are out of the hopital and this round of IVIG seems to be working. DD is getting better - she is not all the way herself, but is slowly getting there. This would clearly indicate that she is in need of IVIG or something that IVIG is providing her with.

 

Our ped wanted to wait until DD was symptomatic before doing the next round of IVIG because she didn't think it was useful to do it when she was asymptomatic. I told her that some of you are doing it at regularly scheduled times, even before your children show symptoms. She was surprised about this. She is open to this but wants to know the reasoning your docs have behind that.

 

Also, I know you have suggested the immunologist route, and we are working on that route as well.

 

Our ped spoke with Dr. K and he responded to her with "No child needs more than 2 rounds of IVIG". Have any other Dr. K patients been told this?

[sf_mom]

New here but its my understanding that the individuals that are getting monthly IVIG have deficiencies in their IgG subclasses. In those cases, monthly IVIG is recommended and usually covered by insurance.

 

So far, our son has failed 10 of the 14 serotypes for the STREP PNEUMOCOCCAL ANTIBODY TITER and will be testing subclasses tomorrow and see what the immunologists recommends from there.

 

Glad to know your Daughter is doing better!!!!!!

 

-Wendy

[dcmom]

fallingapart-

 

I am glad to hear all is going better.

 

DD hasn't had ivig (yet). From what I understand, and I am sure others will answer you, the IVIG that is done for pandas (say, by Dr K) is a much larger dose over a few days than the scheduled monthly ivig for immune deficiency that is given in one day. Dr K may have meant he hasn't seen a child need more than one dose- I am weary whenever a doctor makes a declarative statement about treating pandas, we really know so little.

 

Personally, I feel once you get the child healthy initially (pex, abx, or ivig) the whole solution to pandas may be periodic ivig. I think that would be hard to get w/o documented immune def. I am also working on the immunologist- hoping to get a recommendation today from the neurologist.

[ShaesMom]

New here but its my understanding that the individuals that are getting monthly IVIG have deficiencies in their IgG subclasses. In those cases, monthly IVIG is recommended and usually covered by insurance.

 

So far, our son has failed 10 of the 14 serotypes for the STREP PNEUMOCOCCAL ANTIBODY TITER and will be testing subclasses tomorrow and see what the immunologists recommends from there.

 

Glad to know your Daughter is doing better!!!!!!

 

-Wendy

 

Wendy,

 

My daughter is getting monthly IVIG based on her failing the pneumo titers test. She has normal Igg subclasses and Igg, Igm & Iga.

 

Sam

[ShaesMom]

I emailed Dr K with a couple of questions after we found out Shae had the immune issues (we had done a phone consult with him prior) and he did not answer any of my questions that were directly related to that issue. I'm assuming because it is not his field of expertise. I agree with dcmom-his recommendations are likely related to Pandas only.

 

If your daughter becomes asymptomatic it is likely because all of the Ig's she has received have died off. My dd does not receive monthly IVIG because of her Pandas but because of her immune deficiency disease. We have noticed that her symptoms start to return anywhere from 5-7 days before her next infusion and then disappear the day of the infusion.

 

Here is some info taken directly from the Immune Deficiency Foundation's publication on Immunoglobulin therapy:

 

Unfortunately, the

immunoglobulin only provides temporary protection.

Most antibodies, whether produced by the patient’s

own immune system or given in the form of

immunoglobulin, are used up or “metabolized” by the

body. Approximately 1/2 of the infused antibodies

are metabolized over 3 to 4 weeks, so repeat doses

are required at regular intervals. Depending on the

route of administration, this may be done by giving

small infusions under the skin as often as every 2 or

3 days, or larger intravenous infusions once every 3

or 4 weeks. Since it only replaces the missing end

product, but does not correct the defect in antibody

production, immunoglobulin replacement is usually

necessary for the patient’s whole life.

 

You can access the whole chapter at this link:

 

http://www.primaryimmune.org/publications/...pats/e_ch18.pdf

[FallingApart]

Thanks for these responses. I will be taking these to our ped when I meet with her this week. I agree with all of you that the IGs must have died off. However, DD has yet to fail a blood test. I believe that we have been pretty extensive with the testing. She did the pneumococal titers, she did the Igg, Iga, Igm, etc. All of those yests yielded a normal result. Wouldn't that be bad in helping me build a case that she has an immuno deficiency and having an immuno doc take me seriously?

[KeithandElizabeth]

Hello:

 

Dr. K told us that as well. He said that 80% of his patients were cured with one round of IVIG. Hence, I am confused about so many people needing monthly IVIG's. Perhaps that is because all of the healed families no longer need this web site as much and we do not hear from them. Diana Polhman did say that her son did needed a second IVIG months later and that he is doing great now. Hence, he had 2 IVIG's within a year period. Diana, correct me if I am wrong. So, I think it is rare for this disease to have to give your child monthly IVIG's. At least I hope so!!

 

Elizabeth

[fuelforall]

Hello:

 

Dr. K told us that as well. He said that 80% of his patients were cured with one round of IVIG. Hence, I am confused about so many people needing monthly IVIG's. Perhaps that is because all of the healed families no longer need this web site as much and we do not hear from them. Diana Polhman did say that her son did needed a second IVIG months later and that he is doing great now. Hence, he had 2 IVIG's within a year period. Diana, correct me if I am wrong. So, I think it is rare for this disease to have to give your child monthly IVIG's. At least I hope so!!

 

Elizabeth

 

Holy mackerel. If so, I will pay for the one treatment, insurance or no. Worth a shot, right?

[ShaesMom]

Thanks for these responses. I will be taking these to our ped when I meet with her this week. I agree with all of you that the IGs must have died off. However, DD has yet to fail a blood test. I believe that we have been pretty extensive with the testing. She did the pneumococal titers, she did the Igg, Iga, Igm, etc. All of those yests yielded a normal result. Wouldn't that be bad in helping me build a case that she has an immuno deficiency and having an immuno doc take me seriously?

 

 

Did she have her Igg subclasses done as well? If she was normal on all her results-I think you are probably correct that it would be hard to build a case with an immunologist. However, he/she may have some additional ideas to offer in regards to how her immune system is working or other tests that could help with a dx.

[sf_mom]

Once again, wealth of knowledge/experience. Sorry, if I already asked..... Did you say Shae failed 12 of the 14? I'm can't wait until we see the immunologist.

 

-Wendy

 

New here but its my understanding that the individuals that are getting monthly IVIG have deficiencies in their IgG subclasses. In those cases, monthly IVIG is recommended and usually covered by insurance.

 

So far, our son has failed 10 of the 14 serotypes for the STREP PNEUMOCOCCAL ANTIBODY TITER and will be testing subclasses tomorrow and see what the immunologists recommends from there.

 

Glad to know your Daughter is doing better!!!!!!

 

-Wendy

 

Wendy,

 

My daughter is getting monthly IVIG based on her failing the pneumo titers test. She has normal Igg subclasses and Igg, Igm & Iga.

 

Sam

[ShaesMom]

Once again, wealth of knowledge/experience. Sorry, if I already asked..... Did you say Shae failed 12 of the 14? I'm can't wait until we see the immunologist.

 

-Wendy

 

Yes, failed 12 of the 14. See my post reply to mama2alex from today.

 

Sam