Immuncompromised

[mom md]

the immunologist thinks my son has an immune system issues and that the PANDAS/SC developed because of that. He also has severe allergies and failed vaccine.

She gave me a handout on SCIg (subcutaneous) IVIG that can be given weekly at home. I know that is not a lot of data out there on PANDAS kids but it seemed to be a great option for kids with CVID. Has any one else been given that option?

[ShaesMom]

the immunologist thinks my son has an immune system issues and that the PANDAS/SC developed because of that. He also has severe allergies and failed vaccine.

She gave me a handout on SCIg (subcutaneous) IVIG that can be given weekly at home. I know that is not a lot of data out there on PANDAS kids but it seemed to be a great option for kids with CVID. Has any one else been given that option?

I've visited with our Immuno and the nurses who do her infusions about SubQ. They didn't encourage us to look into that option right now because she is so tiny and wouldn't have anywhere to place the needles. It is my understanding that it can leave really large welts and sores. Plus, she doesn't like needles so I'm not sure for her multiple sticks would be a good idea.

 

You can google it and find pictures of what the welts will look like. Also the IDF has a publication devoted solely to SubQ on their website.

 

Lots of people on the immune deficiency forum's seem to love SubQ and swear it has been better for them than the IVIG. One caution-some insurance companies won't pay for it because of the expense.

[sf_mom]

I would give SCIg a try knowing you can always revert back to monthly IVIG if its not working. Icing for a good 10 minutes before and after always helps with pain and bruising.

 

-Wendy

[KeithandElizabeth]

Hello mom md:

 

This is exactly what our immunologist said in terms of PANDAS being a symptom versus the problem. I am not as familiar with the subcutaneous IVIG, but my daughter takes IGG in a pill form. I still need to understand the supplement and where the IGG is coming from.....

 

the good news, it seems, is that you should now get this covered by insurance. and you have another line of attack since your son had a recent relapse. How is he doing now with the steroids?

 

Elizabeth

[Suzan]

the immunologist thinks my son has an immune system issues and that the PANDAS/SC developed because of that. He also has severe allergies and failed vaccine.

She gave me a handout on SCIg (subcutaneous) IVIG that can be given weekly at home. I know that is not a lot of data out there on PANDAS kids but it seemed to be a great option for kids with CVID. Has any one else been given that option?

 

Did she diagnose your ds with CVID? When you say failed vaccine, is that the strep pneumo and did you revaccinate? I think I read you decided not to go with the revaccine, am I remembering that right? I'll be watching for your update on what you decide to do. I agree that this weekly ivig sounds pretty good!

 

Susan