How long to see improvement on Steroids?

[matis_mom]

I was wondering how long it takes for steroids to "kick in". We are on day five of week 1, at 40 mg/day, and anxiety/ocd are still very strong. Can't say that I see any improvement. He seems very tired, and overall looking sickly... Of course, it might have to do with the fact that two of his sisters have strep, but he was away when they tested +, and by the time he came back home they had already been on it over 24hrs.

Also, is it ok to do ibuprofen while on steroids? He is having such a hard time getting through his nightime routine. He has spent tons of time in the bathroom today (we are taking over 40' at a time), that is something that seems to be getting out of control.

 

Anyway, just wanted to see in a 30-day steroid burst, when should we see improvement...

 

Isabel

[Debbie1]

Hi Isabel,

 

Dr. L. told us not to expect improvement until sometime in week 2. Some kids have a delayed response to the steroid though, and improvement might take longer.

 

That being said, on our most recent round of steroids (round 2), we started seeing improvement around day 6 (so hang in there!) We did experience a backslide each time two days after we dropped the dose. The backslide would last 2-3 days then she would stabilize and improve again. It was frustrating to see this happen each week, but by the time we finished the month of steroids, she was significantly improved.

 

Most importantly, do whatever you need to do to clear the strep from your house, even if it means keeping the kids on antibiotics for an extended period of time until you know its clear. Dr. L. put all three of my kids on augmentin because she believed we were circulating a strep infection and wanted the whole house treated at the same time.

 

Hang in there....I know the waiting is rough...

 

Debbie

[Buster]

In our case, for 9yr old dd, we saw dramatic improvements 10 days post burst. They only lasted 4 days though.

 

Buster

 

Hi Isabel,

 

Dr. L. told us not to expect improvement until sometime in week 2. Some kids have a delayed response to the steroid though, and improvement might take longer.

 

That being said, on our most recent round of steroids (round 2), we started seeing improvement around day 6 (so hang in there!) We did experience a backslide each time two days after we dropped the dose. The backslide would last 2-3 days then she would stabilize and improve again. It was frustrating to see this happen each week, but by the time we finished the month of steroids, she was significantly improved.

 

Most importantly, do whatever you need to do to clear the strep from your house, even if it means keeping the kids on antibiotics for an extended period of time until you know its clear. Dr. L. put all three of my kids on augmentin because she believed we were circulating a strep infection and wanted the whole house treated at the same time.

 

Hang in there....I know the waiting is rough...

 

Debbie

[matis_mom]

Thanks Debbie and Buster, I guess I'll just have to be patient and focus on erradicating strep from the house. Believe me, if someone offered me prescriptions for everyone in the family, I would to it in a heartbeat!

 

Isabel

[EAMom]

Thanks Debbie and Buster, I guess I'll just have to be patient and focus on erradicating strep from the house. Believe me, if someone offered me prescriptions for everyone in the family, I would to it in a heartbeat!

 

Isabel

 

I would contact Dr. Latimer and ask...I just think you are going to have a really hard time with so many kids, strep could just keep circulating around the family!

[thereishope]

I'v heard not to take Ibuprofen with a steroid so that is something else to ask Dr Latimer. Because strep has recently been in your house, give him a little more time. Don't give up hope. Did you take him for a strep test when you found out the others were +?

[matis_mom]

I'v heard not to take Ibuprofen with a steroid so that is something else to ask Dr Latimer. Because strep has recently been in your house, give him a little more time. Don't give up hope. Did you take him for a strep test when you found out the others were +?

I did not think of having him tested because he is on Augmentin anyway. I guess it would be a good idea just in case. If I can document him being + while on abxs, that might be significant when it comes to insurance covering further treatment, and/or a good piece of info on what antibiotic does the trick or not.

 

Isabel

[matis_mom]

Thanks Debbie and Buster, I guess I'll just have to be patient and focus on erradicating strep from the house. Believe me, if someone offered me prescriptions for everyone in the family, I would to it in a heartbeat!

 

Isabel

 

I would contact Dr. Latimer and ask...I just think you are going to have a really hard time with so many kids, strep could just keep circulating around the family!

I will try going that route, I don't think the pediatrician will go for it...

 

Isabel

[thereishope]

I've read that some kids on here have gotten + strep tests even though they were on prophylactic antibiotics. Also, take note, that some parets believe the proph antibiotic may have also give false negatives.

 

I guess what I am trying to say that being on an antibiotic does not guarantee the child will not contract strep.

 

 

I'v heard not to take Ibuprofen with a steroid so that is something else to ask Dr Latimer. Because strep has recently been in your house, give him a little more time. Don't give up hope. Did you take him for a strep test when you found out the others were +?

I did not think of having him tested because he is on Augmentin anyway. I guess it would be a good idea just in case. If I can document him being + while on abxs, that might be significant when it comes to insurance covering further treatment, and/or a good piece of info on what antibiotic does the trick or not.

 

Isabel

[EAMom]

Thanks Debbie and Buster, I guess I'll just have to be patient and focus on erradicating strep from the house. Believe me, if someone offered me prescriptions for everyone in the family, I would to it in a heartbeat!

 

Isabel

 

I would contact Dr. Latimer and ask...I just think you are going to have a really hard time with so many kids, strep could just keep circulating around the family!

I will try going that route, I don't think the pediatrician will go for it...

 

Isabel

 

Even if you don't do it long term...but for a month to hopefully stop strep from circulating in the house, I think it is a good idea.

 

Another parent (DCmom I think) was in contact with one of the original Swedo families. After pex they had all 4 kids on abs to keep strep out of the household. Once the pandas dd hit puberty they took the other kids off abs...and then one of the siblings ended up getting pandas!

[EAMom]

We were also told to not give ibuprofen while on steroids...it can be too hard on the stomach (ulcers).

[matis_mom]

Thanks Debbie and Buster, I guess I'll just have to be patient and focus on erradicating strep from the house. Believe me, if someone offered me prescriptions for everyone in the family, I would to it in a heartbeat!

 

Isabel

 

I would contact Dr. Latimer and ask...I just think you are going to have a really hard time with so many kids, strep could just keep circulating around the family!

I will try going that route, I don't think the pediatrician will go for it...

 

Isabel

Good news!!! I just got back from the pediatrician. I had not been back with my Pandas ds because since he was diagnosed, but today I decided to take my 5-yo who was complaining of stomach aches and my PANDAS ds12, to check them both and just kind of put my cards on the table to see if the pediatrician would get the picture, particularly after dd7 tested + for strep for the second time in 1 month. So, after going back and forth on the timeline, what was going on with Matias, etc, etc., she got the picture and said she would be willing to put EVERYONE on Omnicef (never heard of it, hope it works!) and she said to bring them all back to have them tested again to make sure they are all clear. She agreed that dd7 did not clear on Amoxicilin, and even went as far a mentioning "resistant" strep, so I am very excited that she got the idea of what is going on and is willing to help me manage the rest of the family.

My husband is calling his dr. to try to get a prescription for himself, and I'm seeing my OB on Friday, see what he can do for me at this point in the pregnancy.

I am so relieved to be able to treat EVERYBODY and the dog at the same time, especially now that Matias is on steroids.

 

I'm seeing the light at the end of the tunnel....

[fuelforall]

I would just say, watch out for stomachaches on Omnicef. And perhaps reduced appetite the first couple days.

No Zith?