I have a daughter who was diagnosed with SPS in 3/2019 but went undiagnosed for several years before that. She had a spasm episode lasting for several hours on 11/18/2021 that ended up with her being hospitalized and intubated. This is the first time this happened to her. Usually extra Clonidine stopped the spasms when they became severe. She got a tracheostomy after 2 1/2 weeks on a vent and currently continues with a tracheostomy with oxygen supplementation over the trach tube. She is able to talk with trach and is just starting to take in some nutrition via mouth (soft foods). She needs to go to an acute care rehab facility to help regain her functioning. Unfortunately she has received IVIG treatments every 3 weeks for 2 days since dx and every rehab facility she has been referred to in NY, NJ and PA has turned her down due to this treatment which is vital to her.

MY question is do you know of any rehab facilities which will take someone on IVIG treatments? If not do you have any suggestions as to what we can do to help her. She is getting minimal OT, PT and speech in the hospital and has been virtually laying in a bed since 11/18. She is only 36 years old.

If you have any suggestions I would appreciate it.