first steroid burst with Dr K

[Johnsmom]

Hello-

 

We just had our 1st appt with Dr K. He gave us a steroid burst. We started it on Thursday. He told us that things might happen around 10 - 21 days. Does anyone know if that means 10-21 days after the 5 days has ended. I know that if this works we will just know but a little confused. He also mentioned 21-24 days??

 

Yesterday was our third day and our son was amazing. He just seemed so mellow and his speech and eye contact were great. What really floored me was as I was making his breakfast and had my back turned, He said "Wow, my punch has never felt like that before!" He is in Karate and then started to do palm heels and comment on those. Later on in the day he said, "How did that happen?" "I didnt feel like that yesterday" He has no idea what is going on and I didnt ask him any questions. Today he looks tired, has circles under his eyes and his speech sounds goofy again.

 

thanks

ANn

[Nita]

Our son did the steroid boost with Dr. K. and we saw a different kid the second day. He was just so amazingly calm and clear thinking. I remember having a philosophical discussion with him and he did things with us that took concentration without physcial movement, like watched an entire football game. That boy disappeared again - I think a couple of days after we stopped the steroid, but he still had some good days for about 3 weeks - just not as long lasting or dramatic. Then he had the IVIG and he improved after that for a couple of months. Our son is older though (13) and has a bad case of PANDAS so maybe why the effect wasn't as long lasting. He's already had a 2nd IVIG and will probably need more. He's going through some rough days now (2 weeks post IVIG) after a really good first week post. I know the first 6 weeks are see saw, but it's very hard. Sure hope things start to turn for the better soon.

[Johnsmom]

Nita-

We had an amazing philosphical conversation yesterday as well. He was so calm. He asked me what was more important, a mother or a father, I told him they are both equally important. Then he said well, George Washington is the father of our country and his is important. He went on to say a lot of other amazing things like that, like jesus and god being important as well.

The funny thing is that I have journaled a lot of times where he has been this insightful. He is 8 yrs old. Now this whole process is freaking me out! Are you glad you did IVIG?

Ann

 

Hello-

 

We just had our 1st appt with Dr K. He gave us a steroid burst. We started it on Thursday. He told us that things might happen around 10 - 21 days. Does anyone know if that means 10-21 days after the 5 days has ended. I know that if this works we will just know but a little confused. He also mentioned 21-24 days??

 

Yesterday was our third day and our son was amazing. He just seemed so mellow and his speech and eye contact were great. What really floored me was as I was making his breakfast and had my back turned, He said "Wow, my punch has never felt like that before!" He is in Karate and then started to do palm heels and comment on those. Later on in the day he said, "How did that happen?" "I didnt feel like that yesterday" He has no idea what is going on and I didnt ask him any questions. Today he looks tired, has circles under his eyes and his speech sounds goofy again.

 

thanks

ANn

[Worried_Dad]

We saw the same thing - 2nd day after starting the 5-day prednisone burst per Dr. K, my son was 80% improved. Seemed like a miracle! But our son was in the midst of a severe exacerbation, and the progress didn't last much beyond the final day of the burst for him, unfortunately.

[thereishope]

When my son did a 5 day burst, it was rather soon after contracting strep the second time. I noticed improvement on day 4 (after 3 doses were completely in his system).

[momaine]

For my dd, a there was a marked improvement with the first steroid burst of day12 or 13 counting from the first day she took the prednisone. It lasted 5 days. The second burst we saw improvement on day 7 (higher dose and also started Biaxin that day) and it lasted 3 weeks. Third burst kicked in even sooner and lasted about 3 weeks. She's struggling now waiting for the last week to pass so she can have another burst. Will talk with her dr. today and see if moving it up is an option.

 

Angela