IVIG scheduled for Thursday

[ShaesMom]

Well, we got our immune doc to go ahead and schedule the IVIG before we have approval from Insurance. Shae goes in on Thursday afternoon for her first dose and Friday for the second. He is following Dr. K's protocol and dosing. She will start the steroid burst tomorrow. He didn't want to give her the burst but we somehow managed to change his mind.

 

She will have it done at the local hospital in the Ped's ward with one of the infusion nurses monitoring her throughout the day. I'd be lying if I said I wasn't concerned about the procedure. I just hope everything goes okay.

 

She will also receive IVIG monthly depending on insurance for the immune deficiency that was also dx'd. This will be a smaller dose done every four weeks at the allergy office for approx two years before they plan on retesting her Pneumococcal titers and Ig levels. If they are still down it sounds like IVIG for life.

 

I did find out today that insurance is dening the claims for the Echo, EKG, & MRI that were ordered by the Rheumy claiming the autoimmune disease was preexisting. WHAT??? So, I guess our battles with the insurance company has officially started. Wait until they see the claim for the IVIG!!

 

Sam

[Suzan]

Well, we got our immune doc to go ahead and schedule the IVIG before we have approval from Insurance. Shae goes in on Thursday afternoon for her first dose and Friday for the second. He is following Dr. K's protocol and dosing. She will start the steroid burst tomorrow. He didn't want to give her the burst but we somehow managed to change his mind.

 

She will have it done at the local hospital in the Ped's ward with one of the infusion nurses monitoring her throughout the day. I'd be lying if I said I wasn't concerned about the procedure. I just hope everything goes okay.

 

She will also receive IVIG monthly depending on insurance for the immune deficiency that was also dx'd. This will be a smaller dose done every four weeks at the allergy office for approx two years before they plan on retesting her Pneumococcal titers and Ig levels. If they are still down it sounds like IVIG for life.

 

I did find out today that insurance is dening the claims for the Echo, EKG, & MRI that were ordered by the Rheumy claiming the autoimmune disease was preexisting. WHAT??? So, I guess our battles with the insurance company has officially started. Wait until they see the claim for the IVIG!!

 

Sam

 

Please let me know how it goes. I will be thinking of you guys. I can only imagine how nervous you are. I hope your insurance issues work out. How can they say it was pre-existing?

 

Susan

[T_Mom]

Sam,

We will be thinking of you and your dear child this Thurs/Fri. and waiting to hear how things are going next week--

All the best,

TMom

[michele]

Good for you that you found a local Immunologist to help you. You have done a great job of finding help for your daughter. We were never that lucky. We have not gotten he burst yet either even with Dr. K's letter. I am frankly sick of trying out new Dr's locally so I am just going to the source Dr. Latimer July 23rd and hopefully she will know what to do. Best of luck to your family. I know it is scary. I will be praying for your daughter. I have a friend on Facebook Aspergers and PANDAS group who does the IVIG every six weeks also. You may want to join and give her a shout. Her name is Hester and she sees a DAN ! for her son. He is doing really well with the IVIG and he is autistic also wih the PANDAS.

 

Michele

Well, we got our immune doc to go ahead and schedule the IVIG before we have approval from Insurance. Shae goes in on Thursday afternoon for her first dose and Friday for the second. He is following Dr. K's protocol and dosing. She will start the steroid burst tomorrow. He didn't want to give her the burst but we somehow managed to change his mind.

 

She will have it done at the local hospital in the Ped's ward with one of the infusion nurses monitoring her throughout the day. I'd be lying if I said I wasn't concerned about the procedure. I just hope everything goes okay.

 

She will also receive IVIG monthly depending on insurance for the immune deficiency that was also dx'd. This will be a smaller dose done every four weeks at the allergy office for approx two years before they plan on retesting her Pneumococcal titers and Ig levels. If they are still down it sounds like IVIG for life.

 

I did find out today that insurance is dening the claims for the Echo, EKG, & MRI that were ordered by the Rheumy claiming the autoimmune disease was preexisting. WHAT??? So, I guess our battles with the insurance company has officially started. Wait until they see the claim for the IVIG!!

 

Sam

[thereishope]

I've had to appeal insurance companies before for non related things. It's hard. One time it worked, two times it did not. All I can say id be ready for a fight. Get names of everyone you talk to with dates and always ask to speak to a supervisor. Your doctor will have to be part of the process too. He can write the appropriate letter explaining how it was not preexisting and the benefits/necessity of the tests and IVIG.

 

Maybe even email a non profit autoimmune organization and ask if they will assist you in the process. Try the American Autoimmune Realted Disease Association at www.aarda.org.

[Suzan]

Well, we got our immune doc to go ahead and schedule the IVIG before we have approval from Insurance. Shae goes in on Thursday afternoon for her first dose and Friday for the second. He is following Dr. K's protocol and dosing. She will start the steroid burst tomorrow. He didn't want to give her the burst but we somehow managed to change his mind.

 

Sam, was this yesterday and today? I am thinking of you and Shae. I hope all is well. I will be away this weekend to next so I may not see your update if you post one when you get settled.

 

Susan