Turning back the pages?

[sww817]

My son is 8 days into a steroid burst (plus we increased his Augmentin). He had been doing relatively well. Nothing major for improvements but we were relatively happy with things. The past couple of days we have had some issues. Nothing like what we experience during his episodes. Some of the same issues are there but the intensity of the issues is not nearly as bad... at least not yet.

 

So my question for those that have experienced this "turning back the pages"... were the intensity levels of your child's problems as great during this phase as during an episode? Did all of the behaviors return or just some? What triggered this for your child (ie steroids, IVIG, PEX, etc.)

 

I am hopeful with our treatment plan but at the same time, I am worried about another episode since my child is triggered by any illness or stress. It seems like each time we get over a virus or something, we get another one. Plus, I am not sure what to expect with the steroids in general as far as time to improve.

 

Thanks for anything you can share!

[momofgirls]

I would love to know too! I can't tell the difference between what may be worsening of symptoms and "healing". It is so frustrating. Did you see Dr k? Is this turning of the pages something he described to you? When to expect after ivig? We don't see dr k but I have heard other parents describe this. I would really like to know what that means and how long does it last because right now I am thinking my daughters symptoms are just worsening. She had an ivig 3 weeks ago and this are worse now than prior to treatment. Agh!!!!!

 

 

 

My son is 8 days into a steroid burst (plus we increased his Augmentin). He had been doing relatively well. Nothing major for improvements but we were relatively happy with things. The past couple of days we have had some issues. Nothing like what we experience during his episodes. Some of the same issues are there but the intensity of the issues is not nearly as bad... at least not yet.

 

So my question for those that have experienced this "turning back the pages"... were the intensity levels of your child's problems as great during this phase as during an episode? Did all of the behaviors return or just some? What triggered this for your child (ie steroids, IVIG, PEX, etc.)

 

I am hopeful with our treatment plan but at the same time, I am worried about another episode since my child is triggered by any illness or stress. It seems like each time we get over a virus or something, we get another one. Plus, I am not sure what to expect with the steroids in general as far as time to improve.

 

Thanks for anything you can share!

[sww817]

We see Dr. L and she did not mention this. I have seen it mentioned on this board and another site. She didn't really tell me what to expect. Of course, it was also 7:00 the night before Thanksgiving, so I was just thankful to get the script called in. Sometimes I think it is better to just let things happen. But I can't help but anticipate and analyze it as we go along. Now I don't know if this is good or bad???

 

Oh, we are on a steroid burst.

[Buster]

So my question for those that have experienced this "turning back the pages"... were the intensity levels of your child's problems as great during this phase as during an episode? Did all of the behaviors return or just some? What triggered this for your child (ie steroids, IVIG, PEX, etc.)

For us, turning back the pages occurred in the first 2 weeks post IVIG. It was like watching the last year on fast reverse. So intensity was about the same (maybe a little less -- or we were ready for it) but the episodes were really brief. We got through 70 weeks of symptoms in 2 weeks.

 

Buster

[momofgirls]

I can add that when we did the steroid burst I actually her vocalizations I hadn't ever heard briefly for two evenings. Then things leved out and she became almost symptom free for several weeks. Now we are 3 weeks post ivig (small dose though with 5 more to follow monthly) and things have slowly worsened. I don't know if she is reacting to treatment of if it has failed.

 

 

So my question for those that have experienced this "turning back the pages"... were the intensity levels of your child's problems as great during this phase as during an episode? Did all of the behaviors return or just some? What triggered this for your child (ie steroids, IVIG, PEX, etc.)

For us, turning back the pages occurred in the first 2 weeks post IVIG. It was like watching the last year on fast reverse. So intensity was about the same (maybe a little less -- or we were ready for it) but the episodes were really brief. We got through 70 weeks of symptoms in 2 weeks.

 

Buster