Doing well after steriods then Wham

[Dedee]

My daughter got steriods over a week ago and we started to see immediate improvement. It was slow gradual improvement but still improvement. She started dressing herself (hasn't done that in five months). Her rages and defiance were much less. Things were improving a little bit everyday. Then she got a runny nose and cough and it all started to backslide. The rages and tantrums came back first. She did still dress herself this morning but was very anxious about the rain and possible storms today. She managed to get to school but the school has already called and said she feels sick (usually means anxiety). I didn't get any calls last week at all. Uggg, I feel like I should put her in a bubble. How can you make any progress when any little cold puts you right back to square one.

 

So we are supposed to go to the doctor to get the rest of her test results on Wed. I am thinking of calling to see if we can get another run of steriods while we are there. When she got her first dose, they said if she had improvement we could schedule for another dose in a week, but I wanted to wait and see how much improvement we got out of the first run. Also, next week we go to Florida to see Dr. Murphy. So what do you all think? Should I go ahead with one more run to get us through till we get to see the "expert"? You guys know how hard it is to deal with the rages, tantrums and defiance. For some reason those are the symptoms that come back first. I really need advice / opinions here. I'm at my whits end and keep second guessing all of my decisions. I got a brief glimpse of how it could be only to have it jerked away. We are devastated and going day to day waiting till we can see someone who can offer us some hope. Thank you all for your support and guidance during such a difficult time.

 

Dedee

[SSS]

Dedee, I don't have any advice, just thinking of you and sending good thoughts--- hang in there, I bet your appt. with Dr. M will be fantastic---stay strong.

[kferricks]

That is the hardest when your hopes go up and then you see her backslide. I'm curious, how long was she on the steroids? Was it just a week?

 

Has she only started backsliding t he last two days? I'm only asking because in Dec. we did a steroid taper and at the end of it she backslid for only 2 days and then started forward again. Is she also on abx

[Dedee]

Well she only did one IV steriod infusion. We started seeing improvement almost immediately. It was small things and very gradual. That lasted about a week and then she got a cold and the next day the rages returned (she had only had one during that week). She has rages almost daily, they differ in how violent and how long they last. We had a one week reprieve. She still dresses herself which we hadn't seen since before christmas, so we haven't lost that.

 

She has been on antibiotic injections monthly for two months (bicillin). We don't see much relief from that. Going back tomorrow and I think I will ask for another steriod infusion. At least discuss it. Just trying to hold on till next week.

 

Dedee

[Guest pandas16]

Well she only did one IV steriod infusion. We started seeing improvement almost immediately. It was small things and very gradual. That lasted about a week and then she got a cold and the next day the rages returned (she had only had one during that week). She has rages almost daily, they differ in how violent and how long they last. We had a one week reprieve. She still dresses herself which we hadn't seen since before christmas, so we haven't lost that.

 

She has been on antibiotic injections monthly for two months (bicillin). We don't see much relief from that. Going back tomorrow and I think I will ask for another steriod infusion. At least discuss it. Just trying to hold on till next week.

 

Dedee

 

 

How many g/kg of IV steroids did she have?

[norcalmom]

Steroids seem like a double edge sword. They reduce the immune response. But, they reduce the immune response. Making your kid more likely to get sick. And if your child is PITAND, that just means they will exacerbate again. Steroids don't make a lot of sense to me. Have you checked for all underlying infections - like chronic mycoplasma and lyme (and others)? I guess I could see using steroids if it was an emergency and I was ABSOLUTELY sure there was not an underlying infection, and my child would not be exposed to anyone that was sick for a while (how long? I dunno.

 

We only tired steroids once. And on day 3 of the burst, my son got a cold. He probably was fighting the virus for a couple days prior to us doing the steroid burst (which is why I did the burst I could see he was starting to exacerbate and I wanted to nip it int he bud). In the end, it just made everything worse. The cold and the exacerbation.

[Dedee]

She got 80mg of SoluMedrol. She weighs 52 lbs. I think we definitely saw progress with the steriods. I just think the progress was interrupted and set back by the onset of the illness. Still though, even now she is more functional than she was pre-steriods. I can be happy with the fact that she is back to dressing herself, even though the tantrums have returned. At this point, we take ANY improvement as a blessing. There is just that constant reminder that this isn't going to be a quick journey and it is sure to be full of set backs. I am thankful for all the wonderful people here who are dedicated to their children and to helping other parents navigate this difficult path armed with knowledge and support.

 

Dedee