Jump to content
ACN Latitudes Forums

Orapred experiences


Recommended Posts

Hi, Hope to get feedback as my son isn't doing well.

 

Dr. T put him on Azith on Dec 30 for 10 days and ordered blood work(which isn't back yet

 

 

today is day 3 off of Azith and he's backsliding. memory issues, anger, hitting and for the first time since this all started on Dec 14 he

 

says he "can't understand" sometimes.?! :o

 

our pediatrician ordered Orapred and Augmentin.

 

He's been ticcing since DEC 14! Will Orapred stop this???? and how soon?

 

I have never seen anything like this!

Link to comment
Share on other sites

Is Orapred a type of prednisone?

 

Do you know why your ped switched him to Augmentin if Azithromycin was working?

 

When we first "discovered" Azith, my dd stopped her tics after 6 weeks (if I remember correctly) of full-strength Azith. (no pred at that point). Tics was the symptom that took the longest to go away. Mood improved first, then OCD, then tics/movements. (Note: for us, tics were the least of our worries, the OCD/anorexia/bipolar behavior were the bad symptoms.)

 

My dd has had pred 2x since then (5-6 day bursts). While on pred, her mood gets nastier (this has been when she's been in an exacerbation), but then PANDAS symptoms get better temporarilyy about 2 weeks later.

 

My dh also got quite irritable on pred, when taken for a lung problem years ago.

Edited by EAMom
Link to comment
Share on other sites

Prednisone (what is your dosing?- our pANDAS doc uses pretty high dosing, tapering down over a month) usually started showing good effects at 10 days to 2 weeks into it. I have seen this happen over 6 times with 3 kids. The only one I saw a quicker improvement with was IV steroids that were given for an asthma/pneumonia issue. Her OCD and anger improved dramatically right after that for weeks.

So if you started 12/30 with pred- you are just getting to that point.

How long do you have it for?

Can you go back to the first abx?

Link to comment
Share on other sites

Orpred is an oral steroid, and he is on a 5 day " burst" and our pediatrician prescribed Augmentin and Orapred cause Dr. T doesn't return our calls and emails.

 

Dr. T gave me 10 days of antibiotics(Azith) and I saw a slow reduction in the movements but VERY slow to go away. Not completely gone. So that's why I agreed to do Augmentin.

 

Should i have continued on Azith? did I not give it enough time???? I was told Azith is still in your body for a couple day after you stop so he shouldn't have changed so much so fast??

Also, now that you tell me steroids makes for nasty behavior i am worried as this is already a problem!

 

Pediatrician said he will give me Azith if I feel Augmentin isn't working.

Link to comment
Share on other sites

One common side effect of prednisone, even in "NT" people, is negative mood shifts to aggression. Another frequent side effect is increase in hunger. These side effects are usually short lived, in most "NT" people, after the regimen is over. I am unclear about how prednisone affects our kids or how long it takes for these side effects to abate, sorry I just do not have enough experience with PANDA kids yet.

Link to comment
Share on other sites

Before my son had Pandas, prednisone (orapred is the same thing, but tastes better) would make him super hyper. Since Pandas, prednisone calmed him way way down. So don't freak over it. Just be aware. One mom on the forum saw a very rough response. But others think it's amazing. A 5 day burst should be fine. If you go on a longer "taper", your body stops making its own stuff after about 10 days, so you can no longer just stop taking the prednisone. You need to taper down slowly so your body has a chance to re-start it's own factory. (it doesn't make prednisone, but something similar - my memory is rough on this detail).

 

Tics were a huge symptom for us. Prednisone helped, but it didn't get rid of them entirely, even on a 30 day course. Everyone is different. FWIW, my son did better on augmentin than zith. For others, it's the opposite. You just need to experiment.

 

I know the tics can be really upsetting. It's such a public display that something is really wrong with the brain. But I have to say, the OCD, especially the OCD that tells a kid to not eat, can be way worse. I HATE the tics, but I'll take them over OCD any day.

 

You sound like you're in that awful place we've all been. It feels like it's all on your shoulders and if you don't do something immediately, you're completely and forever screwed. You're not. It will be ok. I made tons of mistakes, missed tons of coulda-shoulda-woulda opportunities. It worked out and my son is in the best place he's ever been in his life (knock wood). Take a breath. You're doing fine, even if it doesn't feel that way.

Link to comment
Share on other sites

Before my son had Pandas, prednisone (orapred is the same thing, but tastes better) would make him super hyper. Since Pandas, prednisone calmed him way way down. So don't freak over it. Just be aware. One mom on the forum saw a very rough response. But others think it's amazing. A 5 day burst should be fine. If you go on a longer "taper", your body stops making its own stuff after about 10 days, so you can no longer just stop taking the prednisone. You need to taper down slowly so your body has a chance to re-start it's own factory. (it doesn't make prednisone, but something similar - my memory is rough on this detail).

 

Tics were a huge symptom for us. Prednisone helped, but it didn't get rid of them entirely, even on a 30 day course. Everyone is different. FWIW, my son did better on augmentin than zith. For others, it's the opposite. You just need to experiment.

 

I know the tics can be really upsetting. It's such a public display that something is really wrong with the brain. But I have to say, the OCD, especially the OCD that tells a kid to not eat, can be way worse. I HATE the tics, but I'll take them over OCD any day.

 

You sound like you're in that awful place we've all been. It feels like it's all on your shoulders and if you don't do something immediately, you're completely and forever screwed. You're not. It will be ok. I made tons of mistakes, missed tons of coulda-shoulda-woulda opportunities. It worked out and my son is in the best place he's ever been in his life (knock wood). Take a breath. You're doing fine, even if it doesn't feel that way.

 

 

Thanks LLM, I think OCD would be harder to deal with than the tics for sure, but for now ticcing is my problem.

 

He's super hyper, does this mean he doesn't have PANDAS? i mean in respect to the reaction to steroids?

 

He tells me his body is hot and cold and that he can't stay still. He is jumping off the furniture and tried to put his head in the bathroom sink " to cool off" he said. :o

Edited by socalmom
Link to comment
Share on other sites

One common side effect of prednisone, even in "NT" people, is negative mood shifts to aggression. Another frequent side effect is increase in hunger. These side effects are usually short lived, in most "NT" people, after the regimen is over. I am unclear about how prednisone affects our kids or how long it takes for these side effects to abate, sorry I just do not have enough experience with PANDA kids yet.

 

 

what is NT?

Link to comment
Share on other sites

Prednisone (what is your dosing?- our pANDAS doc uses pretty high dosing, tapering down over a month) usually started showing good effects at 10 days to 2 weeks into it. I have seen this happen over 6 times with 3 kids. The only one I saw a quicker improvement with was IV steroids that were given for an asthma/pneumonia issue. Her OCD and anger improved dramatically right after that for weeks.

So if you started 12/30 with pred- you are just getting to that point.

How long do you have it for?

Can you go back to the first abx?

 

 

THEY ARE 15 mg. pills and i am told to give him 1 and a half pills for 5 days. I just feel so freaked out about this, as i don't understand what it's for? inflammation? suppress immune system?

Link to comment
Share on other sites

One common side effect of prednisone, even in "NT" people, is negative mood shifts to aggression. Another frequent side effect is increase in hunger. These side effects are usually short lived, in most "NT" people, after the regimen is over. I am unclear about how prednisone affects our kids or how long it takes for these side effects to abate, sorry I just do not have enough experience with PANDA kids yet.

 

 

what is NT?

 

Sorry, NT means Neuro Typical in other words "normal" neurologically. People without other underlying medical conditions.

Link to comment
Share on other sites

Prednisone (what is your dosing?- our pANDAS doc uses pretty high dosing, tapering down over a month) usually started showing good effects at 10 days to 2 weeks into it. I have seen this happen over 6 times with 3 kids. The only one I saw a quicker improvement with was IV steroids that were given for an asthma/pneumonia issue. Her OCD and anger improved dramatically right after that for weeks.

So if you started 12/30 with pred- you are just getting to that point.

How long do you have it for?

Can you go back to the first abx?

 

 

THEY ARE 15 mg. pills and i am told to give him 1 and a half pills for 5 days. I just feel so freaked out about this, as i don't understand what it's for? inflammation? suppress immune system?

 

I believe this is the current train of thought for steroids so far as I know:

 

Link

 

"STEROIDS

 

Doctors have found that a 5 day course of prednisone will make PANDAS symptoms stop altogether. It is a temporary fix. But it proves that an inflammatory reaction in the child is occurring. It may make doctors more inclined to continue with antibiotics until they get more information from our network of doctors on the nature of PANDAS.

 

Some very extreme and rare cases of PANDAS, where there is clearly encephalitic catatonia, disorientation, hallucinations, beyond the typical PANDAS OCD, Tics, Anxiety issues – have benefitted from one or two months of steroids when administered by a professional Pediatric Neurologist. In our group of 70 children only approx. 5 children have been in this category.

 

No doses will be given here for the steroids as it is well understood by medical professionals what is the acceptable limit and steroids must be used with caution. The use of steroids is well understood in the medical community for encephalitic matters."

Link to comment
Share on other sites

Prednisone (what is your dosing?- our pANDAS doc uses pretty high dosing, tapering down over a month) usually started showing good effects at 10 days to 2 weeks into it. I have seen this happen over 6 times with 3 kids. The only one I saw a quicker improvement with was IV steroids that were given for an asthma/pneumonia issue. Her OCD and anger improved dramatically right after that for weeks.

So if you started 12/30 with pred- you are just getting to that point.

How long do you have it for?

Can you go back to the first abx?

 

 

THEY ARE 15 mg. pills and i am told to give him 1 and a half pills for 5 days. I just feel so freaked out about this, as i don't understand what it's for? inflammation? suppress immune system?

 

I believe this is the current train of thought for steroids so far as I know:

 

Link

 

"STEROIDS

 

Doctors have found that a 5 day course of prednisone will make PANDAS symptoms stop altogether. It is a temporary fix. But it proves that an inflammatory reaction in the child is occurring. It may make doctors more inclined to continue with antibiotics until they get more information from our network of doctors on the nature of PANDAS.

 

Some very extreme and rare cases of PANDAS, where there is clearly encephalitic catatonia, disorientation, hallucinations, beyond the typical PANDAS OCD, Tics, Anxiety issues – have benefitted from one or two months of steroids when administered by a professional Pediatric Neurologist. In our group of 70 children only approx. 5 children have been in this category.

 

No doses will be given here for the steroids as it is well understood by medical professionals what is the acceptable limit and steroids must be used with caution. The use of steroids is well understood in the medical community for encephalitic matters."

 

Thank you , I guess my Ped is looking to see how he responds to these steroids then. I am sad cause if it works it's temporary, and i don't know where that leads me?

Link to comment
Share on other sites

 

Thank you , I guess my Ped is looking to see how he responds to these steroids then. I am sad cause if it works it's temporary, and i don't know where that leads me?

If the steroid works, even temporarily, its a good bet that what you're dealing with is auto-immune. So, you'll get a little respite (or maybe even a lot) and some very good information!

Link to comment
Share on other sites

the last part of your post has me in tears. i am in that place right now and feel so lonely, thank you for writing that i fell like you just gave me the hug i needed.

 

Before my son had Pandas, prednisone (orapred is the same thing, but tastes better) would make him super hyper. Since Pandas, prednisone calmed him way way down. So don't freak over it. Just be aware. One mom on the forum saw a very rough response. But others think it's amazing. A 5 day burst should be fine. If you go on a longer "taper", your body stops making its own stuff after about 10 days, so you can no longer just stop taking the prednisone. You need to taper down slowly so your body has a chance to re-start it's own factory. (it doesn't make prednisone, but something similar - my memory is rough on this detail).

 

Tics were a huge symptom for us. Prednisone helped, but it didn't get rid of them entirely, even on a 30 day course. Everyone is different. FWIW, my son did better on augmentin than zith. For others, it's the opposite. You just need to experiment.

 

I know the tics can be really upsetting. It's such a public display that something is really wrong with the brain. But I have to say, the OCD, especially the OCD that tells a kid to not eat, can be way worse. I HATE the tics, but I'll take them over OCD any day.

 

You sound like you're in that awful place we've all been. It feels like it's all on your shoulders and if you don't do something immediately, you're completely and forever screwed. You're not. It will be ok. I made tons of mistakes, missed tons of coulda-shoulda-woulda opportunities. It worked out and my son is in the best place he's ever been in his life (knock wood). Take a breath. You're doing fine, even if it doesn't feel that way.

Link to comment
Share on other sites

 

Thank you , I guess my Ped is looking to see how he responds to these steroids then. I am sad cause if it works it's temporary, and i don't know where that leads me?

If the steroid works, even temporarily, its a good bet that what you're dealing with is auto-immune. So, you'll get a little respite (or maybe even a lot) and some very good information!

 

peglem, you are right, the steroids did something, it brought back a glimmer of my son and I asked the Dr about what you wrote if it is in fact auto immune issues we are dealing with as you said and he said yes.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...