More appointments and findings

Busy week again. I know it seems to be the norm lately, but the past few weeks just seem extra busy.

We just have had a lot of appointments lately.

Yesterday’s rheumatology appointment went well. Pretty much as expected. We discussed the pros and cons of keeping her on an immunosuppressent med, but agreed it’s safer than allowing Amyloidosis.

During attacks of FMF , your body may produce a protein called amyloid A, not typically found in the body. Buildup of this protein causes inflammation, which can cause organ damage. This damage would be irreversible, so we agreed to continue the use of meds to try to control her FMF.

However during labs yesterday it was found that she is in vaccine failure or is known as a vaccine non responder.

The term non-responsiveness or primary vaccination failure is currently described by the inability of the host/vaccinee to mount sufficient protective antibody responses after primary or booster vaccination.

This means that even though she was vaxxed she isn’t showing protection against those illnesses. Her team wants to re vaccination her.

What causes vaccine non-responder?

In primary vaccine failure the patient fails to develop an immune response to the vaccination. The causes include host immune factors, such as immunosuppressive therapies and recognised immune deficiency illnesses, but can occur in a small proportion of otherwise immunocompetent individuals.

Due to finding this out, we immediately contacted her team to get her revaxxed, which begins on November 4th. We also cannot cluster any of her vaccines so it will take a while to get through this.

I immediately was like I need to fit the flu vaccine in here somewhere so we have that scheduled for next Thursday.

We also found out addyson will be getting her 4th infusion on the 21st of October after her cardiology appointment. It’s her fourth infusion this year so far.

And tomorrow she has a full day of appointments at chop and to keep the fun going Monday she has her sleep Dr (neurologist) and pt. Ethen also has cycling!!