For those who have tried prednisone---

[bronxmom2]

Has prednisone helped with your child's emotional symptoms-- emotional lability and rages?

 

My child is so emotionally ragged and volatile-- he just seems to be the source of so much conflict when he plays with playmates-- I feel the other parents' sighs of relief when we leave.

 

This aspect of the PANDAS is getting worse...

[michele]

We have not tried predisone yet.

 

Have you tried clonidine yet? We just started on half a pill in the PM. It is half of 0.1 mg. My son had been having afternoon rage for weeks. He is so much more relaxed now. He does seem abit quiet for him but he is not being oppositional like usual. In the AM I give him celexa 20 mg and abilify 15 mg. His anxiety is still elevated with his thoughts being a bit hyperfocused but his moods seem a bit more easier to get along.

 

Michele'

Has prednisone helped with your child's emotional symptoms-- emotional lability and rages?

 

My child is so emotionally ragged and volatile-- he just seems to be the source of so much conflict when he plays with playmates-- I feel the other parents' sighs of relief when we leave.

 

This aspect of the PANDAS is getting worse...

[thereishope]

Has prednisone helped with your child's emotional symptoms-- emotional lability and rages?

 

My child is so emotionally ragged and volatile-- he just seems to be the source of so much conflict when he plays with playmates-- I feel the other parents' sighs of relief when we leave.

 

This aspect of the PANDAS is getting worse...

 

 

When my son went on prednisone for 5 days, he did so because he was extreme. He had violent rages , not eating, and spiralling downward. After being on them for 3 days, it didn't stop the rages but it toned them down and stopped the spiralling down. We finally plateaued and began recovery. I don't even want to think what would have been like if he didn't go on them.

 

However, let me add, that my son also had two other episodes of strep and PANDAS. Those times he did not get the steroid. He was not at that "point of no return" and was not considered extreme.

 

So not every child , every time needs a steroid.

 

Let me also add, my son controls his temper now, rarely hits, etc. even when he doe sget mad, on occassion. The rages did not stay with him.

[Kayanne]

We believe that this is my dd6's first episode (or the first that was disruptive enough to be noticed). She has now been on prednisone and azith for a month.

 

We have definetly seen a decrease in her emotional lability. Her focus has returned--she can eat her food without being prompted (at her low point she wouldn't eat at all--we were feeding her), she can do the independant things again, when we tell her to (ex. dress herself, brush her teeth, put on shoes and socks).

 

She is more verbal...she tries to speak at home with us, but still has a hard time getting her words out. Socially, she hasn't interacted with her friends since the spring, that now they just don't notice her...and she isn't able to speak up enough to be noticed...I keep trying to get her to practice at home, but when we are at the playground she clams up again.

 

She still cries if she knows that she has to go to the bathroom...for some reason it is stressful for her. I stopped making her go because she eventually ends up on the toilet anyway--she hasn't had an accident yet. But she won't get herself off. She needs to be told that she is done.

 

She still has problems with decisions and does try to avoid saying "yes" or "no", although sometimes she will say them.

 

Overall, my husband and I believe that she is about 75-80 percent recovered.

 

She has only been on 100mg of azith (she is 44 lbs)...I wonder if that should be increased...

[thereishope]

We believe that this is my dd6's first episode (or the first that was disruptive enough to be noticed). She has now been on prednisone and azith for a month.

 

We have definetly seen a decrease in her emotional lability. Her focus has returned--she can eat her food without being prompted (at her low point she wouldn't eat at all--we were feeding her), she can do the independant things again, when we tell her to (ex. dress herself, brush her teeth, put on shoes and socks).

 

She is more verbal...she tries to speak at home with us, but still has a hard time getting her words out. Socially, she hasn't interacted with her friends since the spring, that now they just don't notice her...and she isn't able to speak up enough to be noticed...I keep trying to get her to practice at home, but when we are at the playground she clams up again.

 

She still cries if she knows that she has to go to the bathroom...for some reason it is stressful for her. I stopped making her go because she eventually ends up on the toilet anyway--she hasn't had an accident yet. But she won't get herself off. She needs to be told that she is done.

 

She still has problems with decisions and does try to avoid saying "yes" or "no", although sometimes she will say them.

 

 

Overall, my husband and I believe that she is about 75-80 percent recovered.

 

She has only been on 100mg of azith (she is 44 lbs)...I wonder if that should be increased...

 

Kayanne,

 

Our children sound similar. My 5 yr old son wouldn't eat either. It got to the point I ad to spoon feed him for a bit. That is one of the reasons he did the steroid. That and rages. Since PANDAS, he too won't often give yes or no answers. He can definitely make decisions a heck of a lot better now (I wouldn't even say decision making is a problem anymore), but he just won't admit to a decision to anyone. He says things are secrets, he doesnt know (even though he does) and "maybe yes, maybe no".

 

My son also had issues w/ doing things like getting dressed, getting hsoes on, etc. It would take him 3 hours in the mroning to just eat, go bathroom, get dressed. Luckily, that problem has passed. There were times I actually had to go in the room and dress him myself when he was at his rock bottom.

 

As for friends...well, for some reason he doesn't want to go outside to play that much anymore. He doesn't want his friend to come in because he's scared the boy will put his toys in his mouth (something the boy has done before). It's gotten to the point that when his "friend" knocks on the door, he only asks for the older brother and doesn't even request that my 5 yr old comes out. I am still working on this and hope it will stop over time.

[FallingApart]

This is a question for anyone whose child is on a med other than a steroid. I believe that I have read that PANDAS kids tend to have adverse reactions to many medications. I know my DD had hyperactive reactions to Benadryl and sedatives. So much so that I am terrified to give her anything other that the antibiotic at this point. Has anyone else found this to be true?

[thereishope]

This is a question for anyone whose child is on a med other than a steroid. I believe that I have read that PANDAS kids tend to have adverse reactions to many medications. I know my DD had hyperactive reactions to Benadryl and sedatives. So much so that I am terrified to give her anything other that the antibiotic at this point. Has anyone else found this to be true?

 

 

My son got overly hyper from Claritin. He did ok w/ dye free Benadryl. These kids have so much in common, but so different at the same time. Just a thought. Have you ruled out whether the dyes are making her hyper. There is a definite connection between food dye and ADHD and behavior problems. They often put dyes in meds.

[Diana]

Prednisone should really help your son to calm down. But sometimes, it has the reverse affect. The point is mostly to prove the brain inflammation. Dr. Latimer is very aggressive with its use to try to induce the body to stop the inflammatory process. Yes, it should work. There are a couple mom's who recently got the prednisone treatment with Latimer - may ultimately do IVIG or Plasm - exc -but it has bought them some time.

[Diana]

There are so many new members on this forum. Kayanne - I don't think I've ever spoken with you? Myself and other parents on this forum along with advice from many doctors - Stanford, Yale, Georgetown, etc. - have created a website www.pandasnetwork.org.

 

We are trying to help the parents get proper medical care and understanding of PANDAS. Regarding the prednisone - it is really important to show that the brain inflammation needs to come down. The treatment for pandas is like any form of encephalytic reaction: antibiotics or antivirals - prednisone - ivig or plasma exchange. Since your daughter is early on - I hope you will aggressively treat this with your doctor.......I'm happy you have. If you ever need any ideas - don't hesitate to email me. I see you are in Pennsylvania - there are many families out your way and good doctors. diana

[EAMom]

Announcement! Announcement! Diana Pohlman reallly needs a vacation!!! (Yes, Diana, you already contacted Kayanne and are the one who got her in touch with Dr. Latimer!)

[Kayanne]

Announcement! Announcement! Diana Pohlman reallly needs a vacation!!! (Yes, Diana, you already contacted Kayanne and are the one who got her in touch with Dr. Latimer!)

 

It must make you crazy, Diana, following people by their user names on this forum and their real names though regular email...you deserve a year long vacation LOL!--thanks, for calling me this morning!

 

Just wanted to update on my daughter....she was supposed to finish the prednisone on July 4th, but when we refilled her perscription, we received prednisone 5mg/ml, and she had been taking that since Thursday, July 2nd, and we started to see some excellent results. Prior to that, the pharmacy didn't have the prednisone in, so they filled it with pedia-pred (5mg/5ml); we just adjusted the dosage accordingly.

 

My husband and I were concerned that she seemed to be improving so quickly, and that she was so close to being back to 100%, that we didn't want to stop the treatment just yet. Andrea, one of Dr. Latimer's office staff, got a message to Dr. Latimer for us, and we were told to continue on our present dosage until July 18th, and to contact the office shortly before then to let them know how she is doing.

 

So my daughter has been on prednisone since June 6th...and we can honestly say that she is about 95% better...just a few more lingering issues, and hopefully they will be done by the 18th.

 

I had read somewhere on this forum that the effects of the steroid are only supposed to be temporary.....I pray that is not the case!

 

Has anyone noticed a different in effectiveness from pedia-pred vs. regular prednisone?

 

I ask this because I refilled the prednisone on June 25, and that day I gave it to my daughter...it was disgusting even though I mixed it with juice...I told her she didn't need to take it again until we completely finished up the pedia-pred (it was mint flavored). However, I noticed that she seemed to have more improvement than the baby steps that we had seen.

 

After the pedia-pred was fully used up, we gave her the prednisone (mixing it with soda makes it tolerable for her), and immediately we began to see a major improvement. The following day, I googled pedia-pred vs. prednisone. The only conclusive thing that I found out was that pedia-pred is prednisolone not prednisone.

 

Apparently, a person's liver converts prednisone into prednisolone. For cases where there are liver issues, prednisolone is perscribed to bypass the conversion process. The websites all said that they were equally effective...so I'm probably barking up the wrong tree, and my daughter's improvement is not from the switch from prednisolone to prednisone, but from the cumulative effects of the month long steriod...

 

I was wondering if any one has had any experiance with both prednisone and prednisolone, and if they noticed a difference.

[Guest asaxon]

This is a question for anyone whose child is on a med other than a steroid. I believe that I have read that PANDAS kids tend to have adverse reactions to many medications. I know my DD had hyperactive reactions to Benadryl and sedatives. So much so that I am terrified to give her anything other that the antibiotic at this point. Has anyone else found this to be true?

 

Hi, Where have you read that PANDAS kids tend to have adverse reactions to many medications? Thanks.

 

- Asaxon