Need to Vent...

[Char]

I am wondering if I can stop the steroids at this point? I know some of you did a steroid burst as prescribe by Dr.K, does he think it's okay to stop after 5 days at a large dose? I emailed Dr.L but I probably won't get an email back for awhile because she is so busy. Will it hurt my son or give him side effects to stop the steroids? I know that my sons doctor said it's safer to taper down but why does Dr.K not taper down? I wonder if my son will get better faster without being on the steroids? He has never had a snorting tic before. His cough is really bad. I wonder if the steroids are making so he can't fight of the cold cough and making him worse? For those of you who did the 5 day steroid burst did you stop the steroids after that? Char..

[peglem]

I am wondering if I can stop the steroids at this point? I know some of you did a steroid burst as prescribe by Dr.K, does he think it's okay to stop after 5 days at a large dose? I emailed Dr.L but I probably won't get an email back for awhile because she is so busy. Will it hurt my son or give him side effects to stop the steroids? I know that my sons doctor said it's safer to taper down but why does Dr.K not taper down? I wonder if my son will get better faster without being on the steroids? He has never had a snorting tic before. His cough is really bad. I wonder if the steroids are making so he can't fight of the cold cough and making him worse? For those of you who did the 5 day steroid burst did you stop the steroids after that? Char..

We did a 5 day course of pred. I think it was 40mg/day. We did not taper down...but, I'd sure want to be very careful and get the advice of your doc.

[KeithandElizabeth]

Hi Char:

 

We also did the 5 day steroid bust and my son got very sick. We were doing the steroid burst as a test for IVIG instead of as a treatment plan in the way that Dr. L recommends. It was not as successful for us because I believe the sickness elevated the PANDAS symptoms. Hopefully, Dr. Latimer will email you back.

 

Even though the steroid burst was not as successful for us, IVIG has been extremely successful. Have you tried working with any immunologists in your area? I ask because they are one of the few types of doctors who can offer IVIG locally.

 

 

Elizabeth

[Char]

Hi Char:

 

We also did the 5 day steroid bust and my son got very sick. We were doing the steroid burst as a test for IVIG instead of as a treatment plan in the way that Dr. L recommends. It was not as successful for us because I believe the sickness elevated the PANDAS symptoms. Hopefully, Dr. Latimer will email you back.

 

Even though the steroid burst was not as successful for us, IVIG has been extremely successful. Have you tried working with any immunologists in your area? I ask because they are one of the few types of doctors who can offer IVIG locally.

 

 

Elizabeth

I have not tried working with an immunologists in my area yet but I am definitely going to look into it. Thanks for the suggestion. I am really hoping Dr.L gets back to me soon because at this point I think I want to stop the steroids. My son is so pale too and keeps snorting away. I am so stressed right now

[dee45]

Hi Char,

when ANthony had such a bad reaction to just one dose I called and she did call me right back. I know its Sunday but try today she should be on call. If you are that upset than it is an emergency and you should not give calling her a second thought. keep us posted. Hugs to Canada.

 

Deanna

[Char]

Dr.L emailed me back and said she wants my son to get checked by a regular doctor and get his lungs checked. I will do that but she did not answer my question about the steroid, if I can stop it or not. Now I don't know what to do??? Char..

[thereishope]

Will you be able to get into the reg dr tomorrow morning? If they determine he has the flu and that's what is causing the cough, she will probably pull him off steroids. I'm guessing she's waiting to see what the ped says.

[Char]

Will you be able to get into the reg dr tomorrow morning? If they determine he has the flu and that's what is causing the cough, she will probably pull him off steroids. I'm guessing she's waiting to see what the ped says.

 

I have to wait until tomorrow morning to see if I can get in to see my sons doctor. I wish we could see him today. I haven't felt this hopeless in along time.

[dee45]

Char,

hang in there, I know how you are feeling but hopefully you can get him in tomorrow. I would call Dr. Latimer in the am and ask about the steroids. Did you state in your email to her if you could just stop them?? what day are you on?

 

Deanna

[Char]

Char,

hang in there, I know how you are feeling but hopefully you can get him in tomorrow. I would call Dr. Latimer in the am and ask about the steroids. Did you state in your email to her if you could just stop them?? what day are you on?

 

Deanna

 

I asked in the email if my son could stop the steroids but she didn't say if he could or not. My son is on day 6, so far.

[dee45]

Hi,

I wonder why she did not address that. shoot her another email tonight and follow up with a phone call in the am, I would not be surprised if she had you just stop or taper the dose. Like I said in previous post she told me on Friday some kids do have bad reactions to steroids just like Anthony did. let me know how things go.

 

Deanna