10 days into steroid burst

[bronxmom2]

OK, my son is 10 days into a 30-day steroid burst prescribed by Dr. Latimer. We have seen some improvements-- choreaic movements disappeared, focus is better, he is generally less impossible to be with... but nothing drastic. In particular he still struggles to interact normally with his peers. He plays better one on one (for while, he couldn't even do that), but in a group of children... he just can't do it. He's out of school now, and I even had to pull him out of the science class I was trying.

 

Also, he has complained about some joint pain.

 

I guess I'm just looking for someone to tell me that it might still work!

[ShaesMom]

OK, my son is 10 days into a 30-day steroid burst prescribed by Dr. Latimer. We have seen some improvements-- choreaic movements disappeared, focus is better, he is generally less impossible to be with... but nothing drastic. In particular he still struggles to interact normally with his peers. He plays better one on one (for while, he couldn't even do that), but in a group of children... he just can't do it. He's out of school now, and I even had to pull him out of the science class I was trying.

 

Also, he has complained about some joint pain.

 

I guess I'm just looking for someone to tell me that it might still work!

 

Sorry, we didn't do the steriod burst so I can't offer any help there. But-joint pain was one of my daughter's main complaints. Ibuprofen and Aspercreme really seemed to help manage the pain. Turns out her joint pain is likely related to the immune deficiency and not the Pandas. Have you done or considered the immunological blood work up?

[bronxmom2]

Thanks. We did the immunological bloodwork before starting the steroids, and I'm still waiting for the results. Everything seems to take longer here in NYC.

 

I have read about joint pain as a common complaint, but I thought it was a little odd that my son didn't complain of it until 9 days into steroids, not before.

[pixiesmommy]

That makes me suspicious that he isn't having a bad rxn to the steroids. All PANDAS stuff aside, *I* personally cannot do Prednisone because it makes me so sore from head to toe that I literally cannot walk. They put me on them when I have allergic rxns to antibiotics and it is HORRIBLE.

 

The only joint pain that Pixie has complained about is knee pain and steroids did nothing for that, but with IVIG, it was gone almost immediately.

[EAMom]

We only did a 6 day burst...but it took about 14 days from the start of the burst to see a difference (which only lasted about a week).

[Kayanne]

Bronxmom2,

 

We did the 30 day steriod treatment as per Dr. Latimer, and we only saw "babysteps" of improvements like the ones you are describing for almost the entire month. We felt that she was only about 70% improved by about 3 1/2 weeks into it. With only 3 doses left, she began to have dramatic improvements--in two days she went from about 70-75% improved to 97-98% improved.

 

We felt that the dose she was on at the end (5mg once a day) was low, and we didn't want to stop until we were sure she was 100%, so Dr. Latimer allowed us to continue for an additional two more weeks.

 

At the end, she was essentially back to 100%--with only some really minor issues that have resolved themselves, she was completely free of PANDAS behaviors for almost all of Sept.

 

She is dealing with a cold right now, and we have noticed that she cries a little too easily, but it is not near the level of emotional lability that we saw at the beginning of this in the spring.

 

I personally think it was because we switched from pedia-pred (prednisolone) to prednisone intensol (prednisone). We were using the pedia-pred because the pharmacy substituted it because they had to order the prednisone intensol---and we were into the refill by the last few days. However, every doctor that I have asked (including Dr. Latimer) about the difference between the two says that they are just as effective, and that we were probably just seeing the cumulative effects of the steroid at that point.

 

I think the thing to keep in mind right now is that you are seeing improvements. In our case, it was also gratifiying to know that others were noticing the improvements. It helped me to realize that we were on the right track.

 

Go back and read my posts, there is a lot more detail in them.

 

Good Luck,

Karen

[bronxmom2]

Thanks guys.

Karen, I have read many of your emails about your success with steroids.

 

I just wanted to add that on days 11/12 he got significantly more jittery and hyper and his normal voice is now a shout. If you don't feed him the instant he feel hungry, he crashes immediately.

 

It's like he can't be around other children at all. He can stay calm if he is alone, and when we're alone I start to think maybe the steroids are working, but if he's with other kids he seems to go neurologically off the rails-- I mean his color changes, his pupils dilate, etc. He's out of school now, and I even had to drag him out of a science class for homeschoolers on Thursday. I brought him to work with me today, which normally works OK because he can do a combination of computer time and other activities we have here (an education library) but there happened to be another kid here today, and he's bonkers.

 

Have you ever heard of a child who needs to be totally isolated from other children?

 

I'd be totally hysterical right now (I mean, I spend most of Friday crying) if Dr. L hadn't returned my call on Friday and instantly, calmly concluded that we need to move on from the steroids... bless her, really...

[faith]

bronxmom,

does "move on from the steroids" mean that she feels its 'not' working for you? and you have to try something else? I thought that results of getting better from the steroids would be telling for PANDAS.

 

 

Faith

[dee45]

Hi,

I wish we would have some better luck ANthony was on them only one day and he was coming out of his skin by the evening. He was to start school in 2 days so we did not continue we see Dr. Latimer again in a few weeks I couldn't have kept him on them he said "I feel like I am in a box and can't get out" I hope you have better luck and see alot of improvement.

 

Deanna

[bronxmom2]

well, I only have a moment, and this is complicated, but I think it did help in some ways, but I don't think its going to be a solution for us-- it's just been going on too many years- and I was so relieved when she concurred. I know steroids make people agitated, and agitation and hyperactivity were primary complaints to begin with, so it's hard to assess how he's doing.

 

I wonder if steroids tend to work better for girls-- as a treatment, I mean?

 

If he had been given a five day burst, we probably would have said it showed clinical improvement, but it's hard to say.

 

Anyway we'll continue with the steroids for now, it's not a total disaster but he's pretty jittery. Also his face is all red. And like I said he is shouting.

[Kayanne]

I'm sorry your having such a hard time with the steroid...did Dr. L indicate that this could mean IVIG or PEX instead?

 

~Karen

[bronxmom2]

IVIG... I hope!