Spoke to soon! Sliding back 5 days post steroids :(

[matis_mom]

So discouraging... Ds is already sliding back! He finished a 30-day steroid burst last Monday. He was great through Christmas. Sunday he did not look too good. Sunday evening he started with the questions and had a hard time getting to bed. Nearly lost it when his brother dropped the bath towel on the floor, and then brought his laundry to the laundry room by picking it up with his foot (he was doing that a a while back, would not use his hands to touch anything he deemed "contaminated") Today he has been asking tons of reasurance questions, spending lots of time in the bathroom, talking to himself, and checking things over and over.

 

I guess it's good to confirm the diagnosis and know there is definitely inflamation causing problems, but I was so hoping this would just close the BBB and it would stay closed at least for a bit longer!

 

Maybe there is something else contributing too. Dd7, the one that did not cleared strep in November has been complaining of stomach ache and pain in her hip. It's been about two weeks since we finished abxs. I am taking everyone in tomorrow to have them checked. Good thing the pediatrician is already on board, at least as far as checking everyone and trying to clear any carriers. I'm scared to death to think dd-7 may be going the same route my PANDAS ds12 started. At least now we know what we are dealing with... sigh!

[faith]

mati's mom

could I ask how long for you to see the improvement that you described in your earlier post? was it definite improvement or just getting a little better? how long did it last before going backwards again? Also, could you remind me what antibiotic and dose he is on? you are continuing that, right?

 

thanks

Faith

[matis_mom]

Faith,

It was gradual but definite improvement. By the last week he was I would say 95% better! He finished on Monday of last week, and I started noticing things creeping back up again on Sunday. He is on Augmentin 875 2xday, plus Vancomycin. We are definitely keeping up the antibiotics. We'll see Dr. Latimer in about 10 days, and I hope to get everyone checked out to see if we have strep going around (again!), since this flare up reminds me very much of what he was like in early Nov. when his sister had strep. Tonight he kept coming out of his bedroom to ask if this or that was OK (mostly germ-related, but also asking me to make sure all the lights were turned off, etc.) and he was very anxious, almost crying, over these things. I had to stay tough and not answer (well, for the most part) and just kept sending him back to bed. It breaks my heart, to think a few days ago he was so happy and easy going, and now the weight of the world is back on his shoulders! I guess only other PANDAS parents can understand this sudden changes, you got to see it to believe it. But is it, as usual, at lot worse at bedtime, I wonder if other people have had the same experience. I did give him 1 ibuprofen in the am and he did OK during the day, and then a couple more after dinner, because I could see it coming, but it did not seem to help at all (or maybe it would have been a lot worse without it?)

[faith]

Faith,

It was gradual but definite improvement. By the last week he was I would say 95% better! He finished on Monday of last week, and I started noticing things creeping back up again on Sunday. He is on Augmentin 875 2xday, plus Vancomycin. We are definitely keeping up the antibiotics. We'll see Dr. Latimer in about 10 days, and I hope to get everyone checked out to see if we have strep going around (again!), since this flare up reminds me very much of what he was like in early Nov. when his sister had strep. Tonight he kept coming out of his bedroom to ask if this or that was OK (mostly germ-related, but also asking me to make sure all the lights were turned off, etc.) and he was very anxious, almost crying, over these things. I had to stay tough and not answer (well, for the most part) and just kept sending him back to bed. It breaks my heart, to think a few days ago he was so happy and easy going, and now the weight of the world is back on his shoulders! I guess only other PANDAS parents can understand this sudden changes, you got to see it to believe it. But is it, as usual, at lot worse at bedtime, I wonder if other people have had the same experience. I did give him 1 ibuprofen in the am and he did OK during the day, and then a couple more after dinner, because I could see it coming, but it did not seem to help at all (or maybe it would have been a lot worse without it?)

 

 

I understand. but this was just to be a temporary thing anyway right? I mean, did Dr. L. say it would help in the longterm? I don't know. we were given the script to do a month pred last month, but I have not done it as I am scared, and I havn't been able to get contact with her to discuss this, so this is where I stand. Did Dr. L. say what would be after the steroid? good that you will see her next week, make sure you put all those questions to her about the future so you don't come home and wonder, especially if it takes a bit to get in contact.

 

Also, I'm guessing you did the steroid pretty much at the same time of the abx, so you don't really know if the abx alone was a help? was it? I really wish I could understand all of this for all of us. I don't like hearing the not so good news.

 

blessings

faith

[thereishope]

Unfortunately, it does seem like some have backsliding after steroids. But, at least you had a good XMas and you have more info to back up the PANDAS diagnosis.

 

The steroid burst is so different for each child. Some have immediate improvement, some not till they are even off it, some none at all. Some have backsliding, some do not.

 

Update us when you find out if your other child is finally clear of strep.

 

How long did it take for you to see improvement on the steroid? And how much of a setback is he having now? Like back to square one, or just slight?

[memom]

I am so sorry to hear that. It is what we also experienced with my daughter after Dr. L. put her on the month of steroids. Great response but temporary. Started backsliding within 48 hours of last dose. On more than one occassion dd has said she wishes she could go back on the steroids.

 

I will be interested in hearing what Dr. L. says. I was unsuccessful in ever reaching her for follow up.

 

Ellie

[sf_mom]

Our son also regressed after the steroids wore off but it was only a 5 day burst.

 

Since then, we've done two IVIGs and he is currently on a higher dose antibiotic and 98% better and praying that continues. We intend to do one more IVIG treatment to 'knock' out any potential remaining 'bug'....... But, we are willing to consider additional treatments if necessary.

 

I would suggest you make a follow up appointment with Dr. L 'in person' to discuss further options.....

 

-Wendy

[matis_mom]

Our son also regressed after the steroids wore off but it was only a 5 day burst.

 

Since then, we've done two IVIGs and he is currently on a higher dose antibiotic and 98% better and praying that continues. We intend to do one more IVIG treatment to 'knock' out any potential remaining 'bug'....... But, we are willing to consider additional treatments if necessary.

 

I would suggest you make a follow up appointment with Dr. L 'in person' to discuss further options.....

 

-Wendy

Thanks all for the replies... All children tested negative for strep yesterday, but we are waiting for the culture. The 2-yo definitely has a stomach bug (maybe just a coincidence), so he might just be reacting to that. The 7-yo, who had stomach aches and joint pains, was sent for x-rays since her lungs did not sound clear... the doctor wasn't sure what to make of it, but at least she checking it out. Hopefully by tomorrow we'll get the culture and the x-rays back.

 

I definitely think it was the steroids that made the difference, not just the different antibiotics (he has been on abxs since July). It took a couple of weeks for him to even start showing any improvement, but then slowly started shedding the OCD to the point where he was I would say 90 to 95% better. Five days after last dose, he was suddenly almost in a full-blown exacerbation (not just OCD coming back, but emotionally distressed about it, swollen eyes, dilated pupils, etc), that's why I thought for sure we had strep in the house again. We did have out of town visitors that day, so maybe they had it?

 

I was good to see him "back to normal" (or pretty much there), it gives me hope to see he can better, even if it doesn't "stick." Dr. Latimer did say this was more just like a way to see if he would be a good candidate for IVIG, I was just hoping he did not need to go that way. I am more and more resigned to the fact that he will need further treatment. We are trying to use so CBT to make this a little easier, but he really does not seem to be able to help himself right now. Maybe this will all just ease-off in a few days...

 

I'll keep you posted,

 

Isabel