4 weeks post IVIG

[mama2alex]

I was hoping to have much better news at this point, and I hesitated to post bad news (because I know a lot of people here could stand to hear good news), but I could really use suggestions and support right now.

 

Our son had IVIG 4 weeks ago (2g/kg over 2 days) and seemed to be slowly getting better. We were cautiously optimistic. This weekend he started a runny nose and slight cough, and by Sunday night things were really bad. I won't go into too many details here, but he's been doing and saying things we've never seen before and it's getting scary. We weren't sure at first what was happening, because he had to go back to school on Monday after a two week break, which is always hard for him. He had a lot of anxiety centered on going back and refused to go on Monday. Tuesday we got him back there, but after school he came home and completely fell apart for the next 4 hours. He didn't even want to go swimming with his best friend, which is usually his favorite thing. We called the psychiatrist both Monday and Tuesday. At first she just thought it was school anxiety and suggested we set up a meeting with the school principal and psychologist, which she offered to attend with us. Then last night, as things got worse, she decided to up his Zithromax to 500mg (from 375mg daily). He went to school this morning without any problems, but I am walking on eggshells and feeling so discouraged. It seems like the IVIG didn't work.

 

On top of all that, when I called Lucile Packard two weeks ago to schedule his second monthly IVIG, they told me he's not supposed to get monthly IVIG! In our original discussions with the nurse about his Pneumovax challenge results, and then in our appointment with the immunologist, they told us he didn't mount an adequate response to the vaccine and needs monthly IVIGs for a 4 - 6 month trial. Now they are acting like they don't know anything about that. We've been assuming it's a mistake/miscommunication, but so far it hasn't been straightened out despite repeated phone calls to them. I spoke to our immunologist's Fellow (junior doc) last Wednesday and she was going to email the doctor (he's on vacation) and get back to me Monday, but so far hasn't called.

[sf_mom]

I understand your concern.... do NOT give up. THE IVIG will work. He needs to be treated again. AND, as you know, your son has been sick for a while and it will take while for him to recover. I JUST WANT TO SCREAM at the DR's.... the strep could be any where in his body, its resilient with no immune system to mount a response.

 

Keep on Stanford for the monthly IVIG appointment. I see Lewis tomorrow and you are welcome to call me.

 

-Wendy