Update on Dell from Dr. Dyck’s podcast

I wasn’t sure where to post an update so I made a new one.

Dell has been on Dr. Dyck’s recommendation since the last of December. He has done wonderful and seems to improve each month. His treatment remains the same, ivig each 4 days and solumedrol each 8th day. I do not like the amount of solumedrol he is getting but what can I do, not much. The combination is allowing him to get stronger and hopefully, better.

Before December and throughout his life, when you squeezed his arms and legs, they felt like jello because of the low muscle tone. Now, he almost feels like a regular 7 year old boy when I squeeze him.

A few weeks ago, we had a follow-up appt. with the neuro. and he stated there MAY be some reflexes there but he’s not sure. Maybe next appt. we’ll be able to tell a little better.

Weeks ago, we did another MRI and although it showed LESS inflammation there is still inflammation so the dr. wants to continue the treatment as before.

We were hoping to see Dr. Dyck but when our neurologist contacted him and sent him Dell’s records, he told our dr. he was doing everything he would do and he didn’t sound interested in seeing us, especially since he’s not a peds. dr.

We will do another MRI in less than 4 months along with a nerve conduction study. We’ll see what we will do about the treatment after we see the MRI.

My husband and I are giving him all treatments. This has been an experience but at least I do not have to schedule nurses, etc. I have a kit in case something goes wrong.

Thanks for your prayers.
Lori