steroid burst

[Johnsmom]

Just wondering what the side effects of a steroid burst are. If Dr K gives us a script at our appt coming up on the 31st, will there be side effects?

We leave for vacation the next day and we will be in and out of a car for 20 + hours.

 

Thanks everyone!

JOhnsmom

[LNN]

Just wondering what the side effects of a steroid burst are. If Dr K gives us a script at our appt coming up on the 31st, will there be side effects?

We leave for vacation the next day and we will be in and out of a car for 20 + hours.

 

Thanks everyone!

JOhnsmom

 

When my son was 2 and he'd get croup, he'd get 4 days of prednisone and by end of day 2, he'd be off the wall with hyperness and no impulse control. That's a "normal" response to prednisone. Now that he has PANDAS, prednisone calms him down and greatly helps his symptoms subside.

 

If you were to see side effects, you might want to watch for irritibility/temper or impulse control issues. But I think most PANDAS kids have an opposite reaction. If you're dealing with tics tho, be sure you have a clear clinical story for PANDAS, as steroids can aggravate tics in TS patients.

 

Also, if you're doing a higher dose of prednisone (e.g. 2 tsp) and you decide you want to stop early for some reason, you should taper the dose down, not stop cold turkey. Cold turkey from a higher dose to nothing can trigger rage/mood swing stuff, like gears with no lubrication.

 

You should also give it in the a.m. so it doesn't make bedtime difficult (sort of like you wouldn't drink coffee just before bed).

 

Finally, I'm sorry I don't know your child's age. But if it's a child who can't swallow pills and you get a liquid, ask for prednisolone/orapred, not prednisone. Liquid prednisone is very very medicinal and nasty. Prednisolone goes down much easier.

 

Hope you see good results!

[thereishope]

How long will you be vacation for?

 

If you could, personally.....I'd probably wait until I got back from vacation if it's only a week or less. You may have too many factors in the equation if there isn't improvement. You'll be saying to yourself, "Is he not improving because the steroid didn't work or is e not improving because of all the excitement over the vacation". Let's hope it works, but I have to add that "just in case".

 

Finally, my son did not get get hyper or get rages from the steroid, but he also had it before with croup so I knew he reacted fine to it.

[Johnsmom]

I was just curious. I dont even know if he will give us a steroid burst. We are in such a good place now with behaviors I am wondering what improvements would a steroid burst give my child if he is doing so well. DO parents wait until things go downhill? He is 8 yrs old diagnosed PDD-NOS but lots of strep related behavior problems. He is just getting over a cold so I also wondered if he was doing better because of that. March 31st is our appt and I am going insane waiting.

Thanks Vickie

 

 

How long will you be vacation for?

 

If you could, personally.....I'd probably wait until I got back from vacation if it's only a week or less. You may have too many factors in the equation if there isn't improvement. You'll be saying to yourself, "Is he not improving because the steroid didn't work or is e not improving because of all the excitement over the vacation". Let's hope it works, but I have to add that "just in case".

 

Finally, my son did not get get hyper or get rages from the steroid, but he also had it before with croup so I knew he reacted fine to it.

[thereishope]

Are you trying to pursue IVIG? If not, and he is doing well, in my opinion, I wouldn't do a steroid burst. You don't have to wait until he at rock bottom to do it, but if he improving, you see good things happening, and you are not pursuing IVIG, I just can't see the reason to mess with a good thing.

[Johnsmom]

We havent even met with Dr K yet. I dont even know if he has PANDAS but after talking with all the parents on this forum he certainly has some major strep problems. I am writing in my journal everyday on how different he seems. We arent doing anything now except what we have done all along. Supplements, diet etc.. but we go good for a while and then he changes.

i was curious about the steroid burst since I have absolutely no experience with any of it. I am also freaking out because my kid seems so good now and I am afraid that DR K wont get a good read on him but then again, I have got 6 elevated titer tests and journaled behaviors that are not good!

ugh I AM SO CONFUSED AND MARCH 31ST CANT COME FAST ENOUGH!

 

 

Are you trying to pursue IVIG? If not, and he is doing well, in my opinion, I wouldn't do a steroid burst. You don't have to wait until he at rock bottom to do it, but if he improving, you see good things happening, and you are not pursuing IVIG, I just can't see the reason to mess with a good thing.

[thereishope]

I wouldn't worry about Dr K automatically dismissing a possible PANDAS diagnosis because your son may be doing well at the appt. He is a seasoned doctor who has seen A LOT of PANDAS cases. He understands that just because a child is doing well now doesn't mean the next week, or even the next day for that matter, it can be a very different story. I would do a timeline, a summary of journal entries along with symptoms, bring all your test results in with the dates of when each test was done. Even if you have photos of your son when the symtpoms were worse, that may be good to being in. He will look at the whole picture, not just he sees that day.

 

I'd start working on your timeline now. Maybe do bullet points instead of paragraph form. Did he mention if you could send that ahead of time (via email) for him to review before the appt? Even he says you can do that, bring a hard copy too.

[dcmom]

I agree with Vickie's advice.

 

We did a steroid burst while on vacation last year. But, we did this because my dd was in a bad place, and not improving. We did have great luck with it- but she responds very well to immunosuppresive type therapy. There are SO many more challenges for these kids on vacation- so it is not a good time if you are using it as a diagnostic tool. For us, it has also worked as a treatment- but I think it is a good idea to reserve for a bad time then also- because you don't want your child on steroids frequently, and it does lower the immune system (so puts them at a little higher risk for illness, I think).

 

I am sure Dr K will be very opinionated on what you should do- so don't drive yourself crazy before you meet him. He is also well aware of the ups and downs of pandas, so just enjoy the fact that your son is well. I am a big believer that it is important to have a pandas doc already in place, in case you really need them down the road.

 

You are doing the right thing- trust in Dr K.

[Kayanne]

We havent even met with Dr K yet. I dont even know if he has PANDAS but after talking with all the parents on this forum he certainly has some major strep problems. I am writing in my journal everyday on how different he seems. We arent doing anything now except what we have done all along. Supplements, diet etc.. but we go good for a while and then he changes.

i was curious about the steroid burst since I have absolutely no experience with any of it. I am also freaking out because my kid seems so good now and I am afraid that DR K wont get a good read on him but then again, I have got 6 elevated titer tests and journaled behaviors that are not good!

ugh I AM SO CONFUSED AND MARCH 31ST CANT COME FAST ENOUGH!

 

 

Are you trying to pursue IVIG? If not, and he is doing well, in my opinion, I wouldn't do a steroid burst. You don't have to wait until he at rock bottom to do it, but if he improving, you see good things happening, and you are not pursuing IVIG, I just can't see the reason to mess with a good thing.

 

I've never emailed or spoken to Dr. K, but from what I read from his website, and from the parents on this forum who have seen him...I want to assure you that Dr. K is not only going to be looking at how your son is now. He goes into history...and if anyone understands PANDAS symptoms, it is Dr. K.

 

A few parents have posted how they didn't realize that past behaviors were related to PANDAS at all until Dr. K pointed them out. Continue to keep the records that you are...I think you are doing a great job!

 

Generally there are two ways the steroid is used. Most commonly on this forum parents give their children a 5 day diagnostic burst. This is what Dr. K recommends. His purpose is to see if the child has a noticable improvement, thus confirming the autoimmunity of PANDAS. Prednisone is anti-inflammatory and immune suppressing. I am not sure what Dr. K's dosage is, and I am not sure what he considers to be improvement or in what time-frame (some children don't actually see results until after stopping the steroid for some days). Also, I am prettty sure that the steroid burst is not an absolute requirement. I think mainly he uses history to diagnose PANDAS. With only a 5 day burst, the side effects will be minimal...maybe more cranky or angry, increased appetite, possibly problems sleeping.

 

The second way that steroids are used is for about a month with the purpose being more therapeutic than diagnostic. It is usually two weeks of treament doses, and then two weeks of a taper dose (because if used for very high doses or for longer than 7 days you must taper the dose down).

 

My daughter's PANDAS was caught early in comparison to many on this board, and Dr. Latimer treated her successfully with a month long course of prednisone. She was fully recoverd for six months....then strep hit our house again, and even though she kept testing negative on rapid strep tests and a 72 hour culture, her symptoms started to slowly ramp up again.

 

My daughter is now on full strength omnicef and about a week and a half into a new month of prednisolone...I am seeing great improvements...actually not really seeing PANDAS at this point.

 

So far the side effects for the last time and this time seem the same...more anger and edgy for the first week (highest dose), increased appetite--for us this is a positive because PANDAS makes her reluctant to eat. She is saying that she "doen't feel like herself" --don't know if that is the pred or the PANDAS.

 

By the end of her first month's treatment last July, she did have a fuller face that took some time to go away, and she had gotten one pimple that went away quickly too.

 

Please, if anyone who has experience with Dr. K...correct me if I am wrong.

 

~Karen

[monarchcat]

My son did a 30 day course of steroids prescribed by Dr. Latimer. Around the second week we noticed extreme irritability, yet it was somehow different than typical PANDAS-y irritability. Also appetite increase (huge), weight gain, puffy face. I think it *may* have helped mood behavior somewhat, but it didn't help tics at all and in fact they got worse after the steroids were done, including his first ever vocal tic about a month after finishing the pred. I don't know if I would do it again unless I felt there were no other choice.