Update-Post IVIG

[ShaesMom]

I wanted to share an update on how my daughter has been doing. Since I see so many new parents online I will give some history.

 

Overall brief health history:

 

-Born full term only weighing 5 lbs 15 ounces and with anaphylactic allergy to dairy.

-Hospitalized at 18 months for complications from the flu.

-Recurrent UTI’s starting at age 3 lasting thru this summer (approx. every 8 weeks)

-Hospitalized for a Pseudomonas Infection in her bladder (very rare)

-Chronic Constipation

-Has remained a very small child—not even on growth chart

-Spends more time on abx than off

-Unexplained fevers

-Many trips to the Urologist & GI doc who tell us to “repotty train” her

-11/07 Strep Infection

-12/08 Mild separation anxiety starts & teachers report frequent urination

-Spring 08-7/09 Refuses to ride bike & scooter because of leg/knee pain (assume it is growing pains)

12/08 Classmate has strep

1/09 Full blown PANDAS starts to rear its ugly head

 

In June, Dr. K confirmed that she had PANDAS. The following day based on some blood work that was completed by her allergist and her history, she also received a dx of Selective Antibody Deficiency which is a Primary Immune Deficiency Disease (PIDD). My dd had normal levels of all Ig’s & subclasses. She did not mount any response to 10 of the 14 serotypes in the Pneumococcal Titers test. The results of this test, her history of repeated infections, and her autoimmune illness were what led him to dx the SAD.

 

She received 2g/kgs of IVIG on July 16 & 17. The dose was prescribed by her Immunologist because this is the dosage that is common with autoimmune illnesses. Three weeks later she received a smaller dose that is consistent with immune deficiency diseases. She has continued to receive that dosage every four weeks. She completed her fifth IVIG treatment about two weeks ago.

 

There were many ups and downs after the first treatment. During that first week, my husband and I were both convinced that it was a complete failure. She gradually improved over the next few weeks. After her 2nd IVIG, she was 95% improved. A couple of days after her 3rd IVIG, she started having mild raging and emotional lability. Five days later my son was dx’d with strep through a culture. Four days after he started on abx all of her symptoms disappear. Interestingly, we only saw a return in her behaviors when she was around him. At some point between round 3 & 4 (and after his strep) all of her PANDAS symptoms disappeared completely. I can honestly say now that she is 125% improved over where she was PRIOR to PANDAS. IMO-ALL of her Pandas symptoms feel like a distant dream. She never had “turning back the pages” or waxing and waning after starting the monthly IVIG.

 

My daughter has always been a little more “difficult” to manage. Through the years we would occasionally see a little girl who was full of energy, laughter, and a complete joy to be around. We always suspected that she had some lingering infection somewhere in her body that we were not getting rid of. We began to believe that she felt crummy most of the time but was so use to it that she didn’t even know she was sick. I’m happy to report that she is now the happy child on a daily basis. The changes in her are nothing short of a true blessing. If we had to live through the PANDAS nightmare to get to where we are today we are truly grateful.

 

We have revisited the GI Doc & Urologist. She has also been dx’d with Eosinophilic Gastrointestinal Disorder (EGID) and UPJ (kidney obstruction). Lucky for us the EGID is another new disease that has only been around for about 10 years. The dx led us to more complete allergy testing. She is now allergic to a total of 10 foods that we know of and highly allergic to both dogs & cats (of course we have each) and the grass in our yard. Once again her immune system has failed her—she has absolutely no symptoms of being allergic to the animals or grass. We now know with the addition of the EGID dx & results of the allergy testing that her Immune System is just flat out messed up.

 

Her Immunologist plans on doing IVIG for two years before we redo any tests. He has stated that he will not have to revax her with Pneumovax. In fact, he told me it was too big of a risk with her PANDAS. This is contrary to what some Immuno’s believe but I’m not going to argue with him on this one. Also, she is allergic to eggs and pork which prevents her from receiving some vaccinations.

 

I have seen more than one post suggesting that monthly IVIG is a “huge issue and a huge expense”. I completely disagree with these comments. Once we reached our deductible for the year-insurance has paid 100% of the IVIG costs. We spend 4-5 hours once every four weeks at our allergy office receiving the IVIG. This seems like a very small inconvenience in exchange for all the benefits. My daughter has never complained about IVIG-in fact-she has commented on how much better she feels after each treatment.

 

I am not advocating monthly IVIG for everyone with PANDAS. Her monthly treatments have been because of the PIDD dx-not because of the PANDAS.

 

Whether or not she is completely “cured” of the PANDAS remains to be seen. The big test will be when she has another strep infection. Hopefully, the IVIG will help to repair any lingering damage and fight off the infection and it won’t be an issue.

 

On a separate note—The Principal at my children’s school has a friend whose daughter was in the original Swedo study. I have been told that she has done well through the years and is now in college and has elected to stop her abx. I have asked the Principal to see if the Mother would be willing to talk with me. She is willing to ask her but did make the comment that the Mom had said she doesn’t like to talk about that time frame because it was so difficult. I will keep trying.

[momtocole1]

Dear ShaesMom,

 

I am so happy that your daughter is doing so well. It was really helpful to see the history. You have been through so much.

 

Could you share the insurance codes that your immuno used for your daughter. We just had a phone consult with Dr. K. and he wants us to get IVIG as soon as possible. We see immuno that will hopefully do the IVIG next week.

 

My son failed 6 of the 7 strep pnuemococcal strains from his vaccines. They did not vaccinate against 14 strains when he was born.

 

3 of his IgG numbers are at the very bottom of the normal range.

 

I am hoping for an immune deficiency diagnosis, but I think it depends so much on the immuno doc, and the insurance company.

 

What is very interesting is that they still covered it even though her levels were normal on all IgG subclasses. Can you tell me what insurance you have. We are potentially switching to a new plan in January and I want to find one that I will have a better chance at having the IVIG covered.

 

I know that the main reason that they may be covering it is because her clincal history but I am just hoping against hope that we can get this covered. My husband is self employed and we don't have the money to pay for this up front.

 

I have seen these codes before on this forum and I have been trying to search for them so I can call my insurance company to see if IVIG will be covered. I think I need the diagnosis code and the procedure code right?

 

I can't wait to see if you are able to talk to the Mom that had the child in the PANDAS study that is doing so well now. I can understand why she does'nt like to talk about that time. My fingers are crossed that she will agree to talk to you

 

Thanks,

Judy...

 

I wanted to share an update on how my daughter has been doing. Since I see so many new parents online I will give some history.

 

Overall brief health history:

 

-Born full term only weighing 5 lbs 15 ounces and with anaphylactic allergy to dairy.

-Hospitalized at 18 months for complications from the flu.

-Recurrent UTI’s starting at age 3 lasting thru this summer (approx. every 8 weeks)

-Hospitalized for a Pseudomonas Infection in her bladder (very rare)

-Chronic Constipation

-Has remained a very small child—not even on growth chart

-Spends more time on abx than off

-Unexplained fevers

-Many trips to the Urologist & GI doc who tell us to “repotty train” her

-11/08 Strep Infection

-12/08 Mild separation anxiety starts & teachers report frequent urination

-Spring 08-7/09 Refuses to ride bike & scooter because of leg/knee pain (assume it is growing pains)

12/08 Classmate has strep

1/09 Full blown PANDAS starts to rear its ugly head

 

In June, Dr. K confirmed that she had PANDAS. The following day based on some blood work that was completed by her allergist and her history, she also received a dx of Selective Antibody Deficiency which is a Primary Immune Deficiency Disease (PIDD). My dd had normal levels of all Ig’s & subclasses. She did not mount any response to 10 of the 14 serotypes in the Pneumococcal Titers test. The results of this test, her history of repeated infections, and her autoimmune illness were what led him to dx the SAD.

 

She received 2g/kgs of IVIG on July 16 & 17. The dose was prescribed by her Immunologist because this is the dosage that is common with autoimmune illnesses. Three weeks later she received a smaller dose that is consistent with immune deficiency diseases. She has continued to receive that dosage every four weeks. She completed her fifth IVIG treatment about two weeks ago.

 

There were many ups and downs after the first treatment. During that first week, my husband and I were both convinced that it was a complete failure. She gradually improved over the next few weeks. After her 2nd IVIG, she was 95% improved. A couple of days after her 3rd IVIG, she started having mild raging and emotional lability. Five days later my son was dx’d with strep through a culture. Four days after he started on abx all of her symptoms disappear. Interestingly, we only saw a return in her behaviors when she was around him. At some point between round 3 & 4 (and after his strep) all of her PANDAS symptoms disappeared completely. I can honestly say now that she is 125% improved over where she was PRIOR to PANDAS. IMO-ALL of her Pandas symptoms feel like a distant dream. She never had “turning back the pages” or waxing and waning after starting the monthly IVIG.

 

My daughter has always been a little more “difficult” to manage. Through the years we would occasionally see a little girl who was full of energy, laughter, and a complete joy to be around. We always suspected that she had some lingering infection somewhere in her body that we were not getting rid of. We began to believe that she felt crummy most of the time but was so use to it that she didn’t even know she was sick. I’m happy to report that she is now the happy child on a daily basis. The changes in her are nothing short of a true blessing. If we had to live through the PANDAS nightmare to get to where we are today we are truly grateful.

 

We have revisited the GI Doc & Urologist. She has also been dx’d with Eosinophilic Gastrointestinal Disorder (EGID) and UPJ (kidney obstruction). Lucky for us the EGID is another new disease that has only been around for about 10 years. The dx led us to more complete allergy testing. She is now allergic to a total of 10 foods that we know of and highly allergic to both dogs & cats (of course we have each) and the grass in our yard. Once again her immune system has failed her—she has absolutely no symptoms of being allergic to the animals or grass. We now know with the addition of the EGID dx & results of the allergy testing that her Immune System is just flat out messed up.

 

Her Immunologist plans on doing IVIG for two years before we redo any tests. He has stated that he will not have to revax her with Pneumovax. In fact, he told me it was too big of a risk with her PANDAS. This is contrary to what some Immuno’s believe but I’m not going to argue with him on this one. Also, she is allergic to eggs and pork which prevents her from receiving some vaccinations.

 

I have seen more than one post suggesting that monthly IVIG is a “huge issue and a huge expense”. I completely disagree with these comments. Once we reached our deductible for the year-insurance has paid 100% of the IVIG costs. We spend 4-5 hours once every four weeks at our allergy office receiving the IVIG. This seems like a very small inconvenience in exchange for all the benefits. My daughter has never complained about IVIG-in fact-she has commented on how much better she feels after each treatment.

 

I am not advocating monthly IVIG for everyone with PANDAS. Her monthly treatments have been because of the PIDD dx-not because of the PANDAS.

 

Whether or not she is completely “cured” of the PANDAS remains to be seen. The big test will be when she has another strep infection. Hopefully, the IVIG will help to repair any lingering damage and fight off the infection and it won’t be an issue.

 

On a separate note—The Principal at my children’s school has a friend whose daughter was in the original Swedo study. I have been told that she has done well through the years and is now in college and has elected to stop her abx. I have asked the Principal to see if the Mother would be willing to talk with me. She is willing to ask her but did make the comment that the Mom had said she doesn’t like to talk about that time frame because it was so difficult. I will keep trying.

[KeithandElizabeth]

Hello Sam

 

I am so happy that Shae is doing well!!!!!

 

Like Shae, our son is receiving monthly IVIG based on the failed S. Pneumonaie titers as well as his clinical diagnosis of PANDAS. He is only doing a series of 6 IVIG's though. He did not fail any of the IGG classes, although he was on the low side of normal for total IGG.

 

It must be so rewarding to have your child thriving and happy.

 

Elizabeth

[Buster]

Whether or not she is completely “cured” of the PANDAS remains to be seen. The big test will be when she has another strep infection. Hopefully, the IVIG will help to repair any lingering damage and fight off the infection and it won’t be an issue.

 

Wow and so great to hear (aside from the GI part)... but wow! Yippee!

[dcmom]

Hooraaaayyy!! Good news that she is doing so well. Please keep us posted, it gives us all hope ....

[Megs_Mom]

I am crying tears of joy, I am SO happy for you all! The issues are what they are - but to find them & find relief from all of them - you are a true warrior. Thanks for posting so completely - and welcome back. All my best - Susan

[DebC]

Thanks for sharing! I love to hear success stories. They provide so much hope!

[momtocole1]

Dear Elizabeth, How is your son doing? Were you able to get any of the IVIG's covered by your insurance?

 

Thanks,

 

Judy...

 

Hello Sam

 

I am so happy that Shae is doing well!!!!!

 

Like Shae, our son is receiving monthly IVIG based on the failed S. Pneumonaie titers as well as his clinical diagnosis of PANDAS. He is only doing a series of 6 IVIG's though. He did not fail any of the IGG classes, although he was on the low side of normal for total IGG.

 

It must be so rewarding to have your child thriving and happy.

 

Elizabeth

[ShaesMom]

Judy,

 

We have BCBS and as far as I know the code that is being used is for Common Variable Immune Deficiency - 279.06.

[T_Mom]

Shaesmom--Great news to hear tonight, thanks for the thorough update. 125%, now that is a blessing! SO happy for you all,

TMom

[momofgirls]

Yeah!!! So happy for you guys! We love hearing good stories!

All the best to you guys.

[Debbie1]

Hi Shaesmom,

 

So glad to hear your dd is doing so well!! Looking forward to hearing of her continued success!

 

On a separate note - I have a friend whose child has been diagnosed with EGID (I think). She has had doctors recommend the formula diet for her son - he is allergic to so many foods. She has to take her son every three months for endocopies for eosinophil counts. She has been to many doctors including the experts at CHOP, gastroenterologists in NYC, and some local docs. If you have any helpful information that I can pass along to her, I'm sure it would be appreciated.

 

Thanks,

Debbie

[Suzan]

I am so glad about all this!!

[KeithandElizabeth]

Hi Judy:

 

My son, overall, is doing so much better. He had a relapse last week, which felt devastating, but he is stepping forward again. He does seem to be affected when he is around other people with viruses (like a cold or flu) even though he does not seem to get those viruses.

 

We have a high deductible, but then were able to get the IVIG's covered 100%. I believe our doctor used the "generic autoimmune disease code".

 

Feel free to PM me with any questions.

 

Elizabeth