Adverse Effect Steriod Burst, Has this happened to anyone else's c

[momtocole1]

My son had a very adverse reaction to the steroid burst last night. It was after his 3rd dose. He is on 30 mg. twice per day. 60 mg total, he is 12 (next week) and 120 pounds.

 

He was not able to swallow the brand name of prednisone crushed up, he vomited it up.

 

I called the pediatrician (after talking to the pharmacist) and asked him to write it for Orapred which is Prednisonlone, my ped said it is the same as prednisone. We were able to get it in an oral disintegrating tablet that you put on the tongue.

 

I can honestly tell you that we had the worst night we have ever had with our son.

 

He was screamin uncontrollably for many, many hours. He was screaming out many of the "OCD words" that he has said over a long period. Food items, random items, jumbled words that are merged together to make new words.

He would not let me touch him or hold him. It was the most heartbreaking thing ever. I am so afraid that because he had such an adverse reaction that it could mean that he does not have PANDAS or that IVIG will not help him. I don't even want to say that, but I am absolutely terrified. My 7 year old daugther was woken up by all of her brothers screams and was so frightened. Trying to block her ears to drown out the screaming. My husband finally had to go sleep with her.

 

I tried to have Ryan lay next to me. He was sweating profusely. Every time I tried to touch him he would scream and ask me to retouch that same arm or shoulder or whatever again because the ocd would tell him to.

 

We had our phone consult with Dr. K yesterday so I just tried to call him. He is doing an IVIG right now, so his secretary said I can call him at 12:30 Chicago time.

 

My question is, does anyone know if prednisolone is the same as prednisone?

 

Has anyone on the forum had their child have an adverse reaction to the steriod and then still be able to have IVIG be successfull? I am terrifed, all I ever hear on the forum is how their child did wonderfully on the steroids, that all the symptoms went away.

 

Please write back as soon as you can.

 

Thank you,

Judy...

[faith]

Judy,

oh boy, sorry honey, but don't worry, .... my feeling is that maybe it is actually 'doing' something? I'll let the others give you advise because I have no experience with it, but I know I've read others having some problems initially, don't know. are you going to continue. Did Dr. K. okay this trial and dose? (to clarify for others, you said this was prescribed by your DAN doc who is local for you, right?).........I'm thinking things can't get worse, so maybe another day or two and things may start calming? Also, I think you're not supposed to give the motrin or advil at the same time, so make sure you aren't doing that.

 

hugs, I know things will get better.

 

Faith

[dcmom]

Momto Cole- get in touch with Kayanne- she felt the prednisolone was not the same for her daughter as prednisone- just if that is the case, I would get him back on the reg prednisone. For my dd I crushed up the pill and put it in something- reeses pb cup, spoonful of yogurt, etc.

[peglem]

Oh, dear, Judy! I hope you're able to get some sleep today, and your son, too. Heck, the whole family. This is the sort of thing we saw a couple of years ago...NOT on prednisone. We did 5 days of pred. recently. She did get the sweats...had to change her jammies and sheets in the middle of the night-they were soaked. She was much calmer and happier during the week though, and more "with it". She started coming down with something on the 5th day- and was ill the following week.

[michele]

My son got worse before he settled down onthe steroids. We did a 3 week taper 30, 20 10, mg. He was throwing tables and so mean and agressive and having encopresis on top of it. As for he OCD he did get stuck on ideas. He was just a pain for about a month. The he started to settle down towards he end Day 20 maybe. He never got better that we saw a dramatic change. Dr. Latimer's take on his is because his anxiety/OCD is so high that he just has to have that addressed with medication like prozac or clonidine. Sorry for your experience. I know my son was terrible for some time during and after he steroids. I would say he had trouble from July-Nov. I don't know if this was from a PANDAS episode from an illness he had in June, meds we were on tha reacted opposite on him (Abilify, celexa and clonidine), stress from school starting or summer transitioning. He is finally calming down bu we have added prozac and I am giving him 500 mg of amoxcillin now since my daughters and he had a virus.

Judy,

oh boy, sorry honey, but don't worry, .... my feeling is that maybe it is actually 'doing' something? I'll let the others give you advise because I have no experience with it, but I know I've read others having some problems initially, don't know. are you going to continue. Did Dr. K. okay this trial and dose? (to clarify for others, you said this was prescribed by your DAN doc who is local for you, right?).........I'm thinking things can't get worse, so maybe another day or two and things may start calming? Also, I think you're not supposed to give the motrin or advil at the same time, so make sure you aren't doing that.

 

hugs, I know things will get better.

 

Faith

[EAMom]

dh (Buster) was on pred (not sure which one...prednisone or prednisolone) for lung inflammation a few years back...he said he felt very weird on it/made him very irritable.

 

pandas dd had a 6 day burst in July. We didn't notice a benefit for 2 weeks. While she was on pred, she seemed almost worse (definitely not better!--she actually bit another child!) but it was a little hard to gauge since the reason we did the pred was b/c she was in an exacerbation from H1N1 (her cam kinase ll ended up being 253 the day we started the pred)...so I don't know how much of the behavior was pred vs. the exacerbation.

[thereishope]

There's a channe that the taste of the med made him vomit. I've had my kids vomit instantly because the med made them. My son had a liquid form of pred. and he still fought us because it tasted so bad. If you want to try the steroid again and think he'd swallow a pill, do that. Otherwise try the liquid and give a little squirt at a time.

 

In another forum, someone said their son gagged on a pill and that just set off his OCD.He's usually fine with taking them, but one time it didn't go down easy and that just set him off. It did calm down after a couple of days.

 

Have you given Ibruprofen in the past? Did it help him? I wonder if docs will ever take that as enough "proof" that there is inflamation.

[Kayanne]

Judy,

 

I'm really sorry that you are having such a hard time. Irritablility, anger are well-know side effects of the prednisone...so it is hard to say if it is making the PANDAS worse or this is just a side effect.

 

I would say that you should absolutely let Dr. K know what is going on.

 

We definately had some ragey behavior when my daughter (42lbs at the time) was on her higher doses (10mg 2/x day)...but she was beginning to have rages just prior to starting it, so I can't really say if it was a side effect of the pred or the PANDAS.

 

I have asked (and googled many times) 4 doctors (including Dr. Latimer) if there is a difference between prednisone and prednisolone, and all of them have said that they are equally effective. The pharmacy gave us prednisolone instead of prednisone, without us knowing so I would think that if they can make such a substitution it is believed that they are both equally effective.

 

Prednisone is converted in your liver to prednisolone.

 

Prednisonlone skips the liver & conversion process...It is recommended for anyone with liver issues, and I do think that most liquid prednisones are geared for children, and therefore are prednisolone to bypass the liver.

 

In our case, liquid prednisone (5mg/ml) was what Dr. L originally prescribed. We couldn't find it, and by the third pharmacy, were were given pedia-pred (5mg/5ml). So we just adjusted the mls to get the correct dosage. We emailed Dr L. that monday just to double check that it was okay...she said the dosages were correct...however, I didn't mention the brand, and I didn't realize yet that we were given prednisolone.

 

A few weeks later...our dd still had many PANDAS issues that we were very concerned about...but she did make some improvements.

 

The original pharmacy who filled our azith script, ordered the correct prednisone, so when I went to refill the antibiotic, I also picked up the bottle of prednisone intensol (5mg/ml)...they could not add flavoring because it was too concentrated...it says right on the box, "Pharmacist: Do not repackage the contents of this bottle."

 

That morning, I put 1ml with 1 oz of apple juice as per the instructions....my daughter hated it...I tried a little bit---NASTY. But I promised her we would only use it again if we ran out of the minty stuff (pedia-pred). Over the next 24 hours we saw a lot more improvement.

 

Then for the next week, we used the pedia-pred. We were still really concerned about her at this point...still not socializing, she struggled to even get words out to us, she still couldn't even make decisions.

 

With three days left we ran out of the pedia-pred, and started the prednisone intensol...we used soda (Sprite) instead of juice...I would put 1oz in a medicine cup, and add 1 ml of the pred...she was able to tolerate it that way.

 

We saw SO MUCH improvement those last three days that I began to look on the internet to see if there was a difference, and that was when I learned that we were giving Rebecca prednisolone and not prednisone.

 

My gut is telling me that in our case there was a difference. But Dr. L said it was just the cumulative effect of the medication.

 

She was so close to her baseline, that we continued to give her 5mg/day (1ml) until we were able to get a message to Dr. L. We were expecting her to allow us to continue for an additional week...Andrea's message to us was to keep giving it for two more weeks.

 

I hope this info helps....sorry it is so long...I just cannot seem to write a small post!!

 

Good Luck

 

~Karen

[FallingApart]

Momtocole, this is the same question I have today. We have been on Prednisolone 2 times. One was a 5 day burst and we saw miraculous results. The second time was a 30 day course and we saw 0 improvements. It is even possible that our DD was worse during this time. She is so horrible right now that it is hard to tell if it is the steroids that made her worse or what the cause is.

 

I just returned from the ped (who by the way says that there is no way DD is schizophrenic...) and she and I both feel we should go back to IVIG for DD since this is the only thing that has helped DD. But, like you, I am sared to death that if the steroids didn't work, will the IVIG work this time. I'm hoping someone will come on here and tell us that their child didn't respond to Prednisolone but did to IVIG.

 

Are you still giving the steroids today or did you stop?

[momtocole1]

Yes we have been using ibuprofen generously and it helps him calm down quite a bit. It was the onlly thing that broke the horrible situation we got into last night.

 

Dr. K. said to stop the steriod since we are doing IVIG no matter what at this point...

 

 

There's a channe that the taste of the med made him vomit. I've had my kids vomit instantly because the med made them. My son had a liquid form of pred. and he still fought us because it tasted so bad. If you want to try the steroid again and think he'd swallow a pill, do that. Otherwise try the liquid and give a little squirt at a time.

 

In another forum, someone said their son gagged on a pill and that just set off his OCD.He's usually fine with taking them, but one time it didn't go down easy and that just set him off. It did calm down after a couple of days.

 

Have you given Ibruprofen in the past? Did it help him? I wonder if docs will ever take that as enough "proof" that there is inflamation.

[momtocole1]

Dr. K. told me I could stop, so I did, he is still having trouble but he is so much better tonight. I am going to post something more about what you just asked...

 

Thanks,

Judy...

 

 

Momtocole, this is the same question I have today. We have been on Prednisolone 2 times. One was a 5 day burst and we saw miraculous results. The second time was a 30 day course and we saw 0 improvements. It is even possible that our DD was worse during this time. She is so horrible right now that it is hard to tell if it is the steroids that made her worse or what the cause is.

 

I just returned from the ped (who by the way says that there is no way DD is schizophrenic...) and she and I both feel we should go back to IVIG for DD since this is the only thing that has helped DD. But, like you, I am sared to death that if the steroids didn't work, will the IVIG work this time. I'm hoping someone will come on here and tell us that their child didn't respond to Prednisolone but did to IVIG.

 

Are you still giving the steroids today or did you stop?

[Buster]

He was not able to swallow the brand name of prednisone crushed up, he vomited it up.

 

Prednisone tastes terrible and crushed up is even worse. Pred can cause some really weird behavior itself. Left me feeling jumpy and irritable like my skin had nettles. dd9 didn't seem to have a problem with it.

 

Buster

[matis_mom]

He was not able to swallow the brand name of prednisone crushed up, he vomited it up.

 

Prednisone tastes terrible and crushed up is even worse. Pred can cause some really weird behavior itself. Left me feeling jumpy and irritable like my skin had nettles. dd9 didn't seem to have a problem with it.

 

Buster

We are starting a 4-week course, Dr. Latimer said to give it ALL IN THE MORNING, yes, even the first week it's 4x10mg tabs, all at once, in the AM. She did warn it might make him jumpy/irritable... I'm bracing myself, but hoping he won't have and issue with it.

She said if this doesn't work, we would move on to considering IVIG, so it seems one does not exclude the other.

HTH,

Isabel

[FallingApart]

Thanks for reporting this Isabel. I know momtocole probably appreciates it and I know I do GREATLY. We are leaving for the hospital in 90 minutes and I am still feeling anxious about the steroids having not worked the second go round. Our ped called Dr. L yesterday but didn't hear back from her. We are going ahead on our own. Your post is very helpful to me. Thank you.

[faith]

Judy,

who will do the IVIG? your doc per Dr. K's instruction? glad things are a little calmer.

 

 

Faith