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I'm not sure what you consider "extended" use of steroids....but yes she is willing to use them for about a month...in our case she extended the use up to six weeks.

 

I also looked up the side effects on the internet...boy was I scared! When I brought up the side effects of prednisone with Dr. Latimer, she said those side effects usually occur if you are going to use them for several months.

 

Steroids are currently handed out for short term use for all kinds of things...asthma, allergies, rashes, etc...

 

As with all medications and treatments, the risk vs. benefits must be weighed. In our case, our daughter has been returned to us, and because this is her first episode, we may not even need to go down the IVIG or Plasma exchange road.

 

My husband and I felt that we would try a longer course of prednisone, and see where that leads us. For our situation, it seemed more prudent to try medication before we pursued the other treatments.

 

I think what it really boils down to is this:

 

Dr. K uses the steroids to diaganose PANDAS, and to see if IVIG will work. He believes after that IVIG should be the next step.

 

Dr. Latimer uses the prednisone as a treatment to bring a PANDAS episode under control because it addresses the brain inflammation, and supresses the immune system. She did tell us that if our daughter didn't return to 99%-100% by the end of her treatment, then we should be considering IVIG or Plasma Exchange.

 

I have not consulted with Dr. K at all...I have read his website, and many posts on this forum about what he suggests...please will someone correct me if I am wrong about his approach.

 

I think you got the approaches right. And hey! I wasn't trying to scare you with that info. But still, it does suggest that we use caution.

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I am sorry about the puppy! I know it is a lot of work. I have to admit, I think I want one as much as the kids (it's the dh that needs convincing).

 

I totally agree about being through the ringer though. I feel we haven't had much of a summer- it has been very hard on non pandas daughter. Just hoping to bring some happiness.... Maybe santa will bring one!!

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I am sorry about the puppy! I know it is a lot of work. I have to admit, I think I want one as much as the kids (it's the dh that needs convincing).

 

I totally agree about being through the ringer though. I feel we haven't had much of a summer- it has been very hard on non pandas daughter. Just hoping to bring some happiness.... Maybe santa will bring one!!

 

I feel like we haven't much of a summer also. We definitely haven't had a chance to do anything just for fun. It seems like whenever I plan something for that day my dd wakes up and has a bad Pandas day which of course puts all plans on hold. My older son has been extremely bored but very tolerate of everything. Bless his heart. :D

 

I'm sure the puppy thing will improve once he is potty trained and loses his puppy teeth. I also thought I wanted a dog and had to convince my hubby. I should have let him win this one. :wacko:

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Wow-- I'm so glad for this site! I had an appointment with Dr. Latimer for later this month, but now I realize she will probably want to see the Cunningham blood test before doing anything. So I've postponted the appt. with Dr. Latimer and written to Dr. Cunningham asking about the blood test.

 

By the way when I spoke to Dr. Latimer's office they said she was seeing 3 PANDAS families TODAY. Do you think she wonders where we are all coming from?

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Wow-- I'm so glad for this site! I had an appointment with Dr. Latimer for later this month, but now I realize she will probably want to see the Cunningham blood test before doing anything. So I've postponted the appt. with Dr. Latimer and written to Dr. Cunningham asking about the blood test.

 

By the way when I spoke to Dr. Latimer's office they said she was seeing 3 PANDAS families TODAY. Do you think she wonders where we are all coming from?

 

LOL, when I spoke with Andrea at Dr Latimers office, she told me that people are suddenly coming from all over USA, and I mentioned to her this site.

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Hello,

the number for anyone interested in Cunningham test is 405-271-2133

 

Deanna

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Anyone been emailing Dr. Latimer and not getting any response back? She told me to email her after a week and I did and then one other time this week I emailed her and never heard from her. Maybe I should call her office. It makes it really hard when you are having questions and problems to never hear back from the Dr. after she prescribed these steroids. He is still irritable and loud and moody and hyper on them after a week and a half. He screams and gets really enraged, my walls are all marked up from his throwing things at them. We have been having BM issues again and he has been smearing it on the carpets and across the registers several times a day. Is it the meds? He keeps having to go BM like 5 times a day? I am ready to have a nervous breakdown here. I actually plan to cut back on his Abilify and Celexa because they don't seem to be helping anyways. He is more anxious and angry then ever before. I kept him on the clonidine because it makes him a little calmer and takes the edge off and helps him rest. Any suggestions from those who have done steroids? His psychiatrist is on vacation for two weeks, the psychologist just informed me our insurance denied our tthree visit claims because they are out of network after they told me they accepted our insurance. The OT, PT, ST just informed me our visits ran out in July and we have been going once a week and were not covered! The pther psychiatrist we were seeing left the practice. I fear going broke over this stuff. These office visits add up fast. We just paid Latimer $550 and I can't even reach her for a follow up question. When does this ever let up? How do other parents cope with the stress?

 

 

 

Wow-- I'm so glad for this site! I had an appointment with Dr. Latimer for later this month, but now I realize she will probably want to see the Cunningham blood test before doing anything. So I've postponted the appt. with Dr. Latimer and written to Dr. Cunningham asking about the blood test.

 

By the way when I spoke to Dr. Latimer's office they said she was seeing 3 PANDAS families TODAY. Do you think she wonders where we are all coming from?

 

LOL, when I spoke with Andrea at Dr Latimers office, she told me that people are suddenly coming from all over USA, and I mentioned to her this site.

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Michele,

 

Sorry to hear you are having such a rough week. Unfortunately, I can't really answer any of your questions. I do know some people have a harder time with steriods than others. My husband becomes down right mean when he takes them for his allergies.

 

I hope you are able to get a hold of a doctor soon. And you are right--the medical bills are overwhelming and seem to never end.

 

Sam

 

Anyone been emailing Dr. Latimer and not getting any response back? She told me to email her after a week and I did and then one other time this week I emailed her and never heard from her. Maybe I should call her office. It makes it really hard when you are having questions and problems to never hear back from the Dr. after she prescribed these steroids. He is still irritable and loud and moody and hyper on them after a week and a half. He screams and gets really enraged, my walls are all marked up from his throwing things at them. We have been having BM issues again and he has been smearing it on the carpets and across the registers several times a day. Is it the meds? He keeps having to go BM like 5 times a day? I am ready to have a nervous breakdown here. I actually plan to cut back on his Abilify and Celexa because they don't seem to be helping anyways. He is more anxious and angry then ever before. I kept him on the clonidine because it makes him a little calmer and takes the edge off and helps him rest. Any suggestions from those who have done steroids? His psychiatrist is on vacation for two weeks, the psychologist just informed me our insurance denied our tthree visit claims because they are out of network after they told me they accepted our insurance. The OT, PT, ST just informed me our visits ran out in July and we have been going once a week and were not covered! The pther psychiatrist we were seeing left the practice. I fear going broke over this stuff. These office visits add up fast. We just paid Latimer $550 and I can't even reach her for a follow up question. When does this ever let up? How do other parents cope with the stress?

 

 

 

Wow-- I'm so glad for this site! I had an appointment with Dr. Latimer for later this month, but now I realize she will probably want to see the Cunningham blood test before doing anything. So I've postponted the appt. with Dr. Latimer and written to Dr. Cunningham asking about the blood test.

 

By the way when I spoke to Dr. Latimer's office they said she was seeing 3 PANDAS families TODAY. Do you think she wonders where we are all coming from?

 

LOL, when I spoke with Andrea at Dr Latimers office, she told me that people are suddenly coming from all over USA, and I mentioned to her this site.

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Hey Michele,

sorry to hear you are having such a tough time I would try calling her you could even have her paged since its the weekend. If he was to improve on steroids I think he would have had some improvement by now. I don't think the steroid should be making things worse. good luck keep us posted.

Deanna

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Dear Michele,

 

I'm so sorry that you are having a rough time right now...Rebecca didn't have the type of rages that you are describing....

 

I sent an email to Dr. Latimer on Wednesday afternoon, and I haven't heard back yet...however it was lengthy and not very pressing so I figured I could wait....

 

I know it is late, but I would still try to call her office...maybe an answering service can forward your message....when we wanted to extend Rebecca's prednisone, we called and Andrea spoke to her for us....I really do believe that she is accessible...try calling her office if you haven't yet.

 

I know that Rebecca's fighting me and screaming seemed to be the worst during the second week on the prednisone, and then it sort of tapered off and by the third week, was only fighting me about going to the bathroom...

 

Lots of hugs and prayers

 

I tried to send you a pm, but your box is full

 

~Karen

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Michele, did you talk to a dr before cutting back on his meds? Have you cut back on them yet? I really wouldn't give up hope. I'm still wondering if the other meds are making things worse. Granted, I can be wrong, but what if they are covering up any progress he is making from the steroid. I guess a question you can throw out there to the other parents is if any of their kids were on any other meds (besides antibiotics, specifically SSRI's) when they were doing the steroid burst. If so, how did those kids act?That's the opinion I'd be curious of. Do you remember how long it took for his bm's to regulate after going off the Omnicef the first time?

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Hi folks,

 

Just a quick warning that Cunningham's lab did not get the funding for continuing brain/PANDAS research. They did get funding for continuing their heart research but this means they might not be able to run a lot of CaM Kinase II tests until funding for PANDAS comes in.

 

Best regards,

 

Buster

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Anyone been emailing Dr. Latimer and not getting any response back? She told me to email her after a week and I did and then one other time this week I emailed her and never heard from her. Maybe I should call her office. It makes it really hard when you are having questions and problems to never hear back from the Dr. after she prescribed these steroids. He is still irritable and loud and moody and hyper on them after a week and a half. He screams and gets really enraged, my walls are all marked up from his throwing things at them. We have been having BM issues again and he has been smearing it on the carpets and across the registers several times a day. Is it the meds? He keeps having to go BM like 5 times a day? I am ready to have a nervous breakdown here. I actually plan to cut back on his Abilify and Celexa because they don't seem to be helping anyways. He is more anxious and angry then ever before. I kept him on the clonidine because it makes him a little calmer and takes the edge off and helps him rest. Any suggestions from those who have done steroids? His psychiatrist is on vacation for two weeks, the psychologist just informed me our insurance denied our tthree visit claims because they are out of network after they told me they accepted our insurance. The OT, PT, ST just informed me our visits ran out in July and we have been going once a week and were not covered! The pther psychiatrist we were seeing left the practice. I fear going broke over this stuff. These office visits add up fast. We just paid Latimer $550 and I can't even reach her for a follow up question. When does this ever let up? How do other parents cope with the stress?

 

Michele, if you still haven't heard from Dr Latimer, email me at pandas2boys@gmail.com , I might have a way for you to contact her.

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Guest asaxon
Anyone been emailing Dr. Latimer and not getting any response back?

I have found Dr. Latimer to be quite responsive. She sometimes takes a day or two to get back to me, but that seems reasonable. I feel fortunate to have finally found someone with her level of experience and expertise who is willing to try to help my child.

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