Prednisone

[Guest asaxon]

My daughter was put on prednisone, 40mg/day for 5 days. It has made a significant difference in her ocd and general mood. Saturday is the last day. How long can I expect the effects to last?

 

Our child did a six week course of prednisone--40 mg/day for the first three weeks, then taper. We saw positive effects on OCD after about two weeks, erratic improvements, brief relapse, then dramatic improvement during the last two weeks. Last dose two weeks ago, still doing well (still on antibiotics). Unpleasant side effects from the prednsone (nasty temper, weight gain, interrupted sleep) have subsided.

[Kayanne]

Is she okay now? that sounds really difficult...the effects of the pred should have still be happening at least for a lttle while after stopping the medication....for her to have such a hard time makes me think it was withdrawl symptoms. Did your dr. say this was okay for a tapering down?

[peglem]

Is she okay now? that sounds really difficult...the effects of the pred should have still be happening at least for a lttle while after stopping the medication....for her to have such a hard time makes me think it was withdrawl symptoms. Did your dr. say this was okay for a tapering down?

I think since it was only a 5 day course tapering off was not considered necessary. Of course, we should have known nothing is ever typical for this kid. She is sleeping...kind of-very restless and I'm so afraid she's going to get up for the whole night. I'll try calling the doctor tomorrow if she still seems to be having a lot of trouble in the morning. Do you ever feel like you are just a pain in the tookus when you're constantly calling/seeing the doctor?

[Kayanne]

Is she okay now? that sounds really difficult...the effects of the pred should have still be happening at least for a lttle while after stopping the medication....for her to have such a hard time makes me think it was withdrawl symptoms. Did your dr. say this was okay for a tapering down?

I think since it was only a 5 day course tapering off was not considered necessary. Of course, we should have known nothing is ever typical for this kid. She is sleeping...kind of-very restless and I'm so afraid she's going to get up for the whole night. I'll try calling the doctor tomorrow if she still seems to be having a lot of trouble in the morning. Do you ever feel like you are just a pain in the tookus when you're constantly calling/seeing the doctor?

I pray she'll be okay in the morning...do you have any prednisone left? In case the dr. tells you to give another dose. I had read on a website when I was looking it up for my daughter that it is more effective if given before 9am because then it is in the system when you body's adrenal gland releases it's hormones.

 

Yea, in the spring, I had my four kids in and out of the ped's office so many times because we couldn't kick the strep....I could hear the nurse rolling her eyes over the phone.

[Iowamom]

Thank you all for your advice and shared experiences. Her 5th and final dose of pred. was Saturday morning. Sunday really really sucked. Don't know if it was pred w/drawal or what. She had 10-15 breakdowns...smashing her face with her knee, serious head banging...even the return of some OCD issues. A couple of times it looked like she was having some leg cramps- toes curled under and legs kinda rigid and bent at the knee.

 

Peglem,

I feel for you! Keeping an older child and yourself safe during rages or the like is the pits. Our 10 year old 100# son is a big kid (tall, too). It gets downright dangerous. I accidently responded to someone else, thinking they had the older PANDAS child. Yes, I will keep in touch. Your case sounds sooooo similar to ours. An earlier post mentioned a type of glutamate inhibitor. Our son is taking Namenda, which is a drug for Alzheimers patients. It too works on glutamate, (the most?) abundant neurotransmitter in the brain. The psychiatrists where we go have been prescribing it for 5-ish years for PDD traits/autism like behavior with incredible results. It honestly has been the only drug that has good positive effects. More focus, less perseverative thinking, will verbalize his concerns instead of holding them in and then explode. We had to go on Risperdal. Too dangerous and destructive. Our IVIG is Oct 2/3. Hopefully, we can ween him off these in time. I'd prefer to ditch the Risperdal first. Maybe he will always need a little medication. Just don't know what "layers" will remain--if any--post-IVIG since he has had it so long.

We are praying for positive results.

 

If you want to get in touch with me by email--that would be great. Let me know.

Dawn

[Megs_Mom]

Thank you all for your advice and shared experiences. Her 5th and final dose of pred. was Saturday morning. Sunday really really sucked. Don't know if it was pred w/drawal or what. She had 10-15 breakdowns...smashing her face with her knee, serious head banging...even the return of some OCD issues. A couple of times it looked like she was having some leg cramps- toes curled under and legs kinda rigid and bent at the knee.

 

Oh, I am so sorry. Generally, I believe that there is not withdrawal after only 5 days. It takes 7 days for the body to become dependent on Prednisone. On a positive note, your daughter responded very strongly to the Prednisone, and you are seeing a return to PANDAS afterwards. That may help you so much on your path to a remission for your dd. Hopefully, you have a great doctor, and can develop a plan for her today. I'm sorry - I should know this, but have you gotten a course of Azith to use immediately? Will your doctor extend the Prednisone? Do you have a neurologist or rheumatologist?

 

Thinking of you and hoping your daughter is better today.

[michele]

After a month of steroids 30 mg, 20mg, 10 mg my son became very agitated and irritable and angry especially at he end. Dr. latimer said this may show his main issue now is anxiety. Have others here who saw Latimer heard her say anything similar? We started to think it was Aspergers/spectrum disorder because of the anger and obsessive likes. The longer this goes, in our case 7 yrs on and off with strep and virals, the worse it has gotten. He was sick in June, then steroids end of July, the tics got worse, anxiety, and compulsions and anger and ADHD too. Finally after all this time, he is coming out of this fog although he had a fever Sat. I have been trying everything with Dr's meds and behavior plans. We are up to 1 mg Risperdal twice a day. My sweet son is rearing his head again instead of this obstinate defiant kid who won't go along with anything. We really don't know definately is this PANDAS/ Aspergers/Tourettes with ADHD,? I have spent alot of time and money trying to get answers. We did the Cunningham study and he was low PANDAS. Even Dr. Latimer didn't really have any answers . She sugested a NIMH study on anxiety and Riluzule. We went to Florida to see Murphy and she gave us suggestions. I was wondering if anyone else is sill unsure after all this searching? At this time meds, and psych Dr's are our only option. Hold tight Peglem, it may get worse before it gets better. It was worse for about a month here. He also bent his toes under, they are black and blue on the toes. OCD got worse, licking, smelling and showering plus encopresis. It has been a long summer! We are hopeful for a better fall.

Thank you all for your advice and shared experiences. Her 5th and final dose of pred. was Saturday morning. Sunday really really sucked. Don't know if it was pred w/drawal or what. She had 10-15 breakdowns...smashing her face with her knee, serious head banging...even the return of some OCD issues. A couple of times it looked like she was having some leg cramps- toes curled under and legs kinda rigid and bent at the knee.

 

Oh, I am so sorry. Generally, I believe that there is not withdrawal after only 5 days. It takes 7 days for the body to become dependent on Prednisone. On a positive note, your daughter responded very strongly to the Prednisone, and you are seeing a return to PANDAS afterwards. That may help you so much on your path to a remission for your dd. Hopefully, you have a great doctor, and can develop a plan for her today. I'm sorry - I should know this, but have you gotten a course of Azith to use immediately? Will your doctor extend the Prednisone? Do you have a neurologist or rheumatologist?

 

Thinking of you and hoping your daughter is better today.