Steroid Burst dosage

[Guest asaxon]

I have thus far been unable to find a physician willing to proscribe a steroid burst for my seven year old daughter, who has the classic PANDAS symptoms but not elevated titers. (We want to see if a steroid burst will help, to see if we want to pursue IVIG.) This is frustrating, because the physicians even admit that at worst, a steroid burst is probably harmless. But it isn't part of any published protocol, apparently, and the doctors (whose own children's lives are not being torn apart by PANDAS) are remarkably patient in waiting for such a protocol to be established.

 

Can someone please suggest the proper dosage & administration of a prednisone burst for a 40 lb girl?

 

Thanks.

[T_Mom]

Asaxon,

 

I want to add, that the use of prednisone should be done only under a doctor's guidance, as it can have serious side effects.

 

We have found neurologists who have experience treating children with more severe issues (tourettes, tics, etc.) to be knowledgeable re: the use of prednisone.

 

It is not something to play around with--there can be serious reactions. I would only ever do this under a doctors guidance (and someone who is close to you, in case your child has a bad reaction.) Dr K can advise re: dosage, but I would not try it without a doctor close by who is going to follow you.

 

I would call every neurologist and immunologist in the area to see if anyone is familiar with PANDAS issues--

If you have to work with a doctor who is not familiar with PANDAS ask them to call Dr K or Dr Jim Leckman (Yale) to consult re: the use of prednisone.

 

 

Asaxon--

You might consider a phone consult with Dr K. www.webpediatrics.com

 

It was WELL worth the money for us, he has been a great help and can advise you as to the prednisone burst. He was the one that advised us to try it in the first place.

 

We had a local neurologist follow Dr K's protocol over a year ago, and Dr K is extremely helpful both on the phone and email. All the best to you-- I hope things calm down for your child --

[michele]

I just wanted to add, that I have spoken to Dr. K and did the hr phone consult. He was reassuring and did email me a steroid burst recommendation. However, if you don't have a local Dr. on board who will administer it then it may not be worth your money. That was six months ago and we are having to travel out of state to get treatment that is nontraditional. I could get medication from psychiatrists locally but no local Dr. would do the burst or the IVIG. If you don't have a specialist on board you may just want to travel to see Dr. K or Dr. Latimer in person. Private mail me and I can give you the info Dr. K gave me in the email abou the steroid bust.

 

Michele

 

 

I have thus far been unable to find a physician willing to proscribe a steroid burst for my seven year old daughter, who has the classic PANDAS symptoms but not elevated titers. (We want to see if a steroid burst will help, to see if we want to pursue IVIG.) This is frustrating, because the physicians even admit that at worst, a steroid burst is probably harmless. But it isn't part of any published protocol, apparently, and the doctors (whose own children's lives are not being torn apart by PANDAS) are remarkably patient in waiting for such a protocol to be established.

 

In case, in some lucky twist of fate, some Prednisone were to fall into my hands from the sky, can someone please suggest the proper dosage & administration of a prednisone burst for a 40 lb girl?

 

Thanks.

Asaxon--

You might consider a phone consult with Dr K. www.webpediatrics.com

 

It was WELL worth the money for us, he has been a great help and can advise you as to the prednisone burst. He was the one that advised us to try it in the first place.

 

We had a local neurologist follow Dr K's protocol over a year ago, and Dr K is extremely helpful both on the phone and email. All the best to you-- I hope things calm down for your child --

[T_Mom]

Asaxon,

 

I want to add, that the use of prednisone should be done only under a doctor's guidance, as it can have serious side effects.

 

We have found neurologists who have experience treating children with more severe issues (tourettes, tics, etc.) to be comfortable with the use of prednisone.

 

It is not something to play around with--there can be serious reactions. I would only ever do this under a doctors guidance (and someone who is close to you, in case your child has a bad reaction.) Dr K can advise re: dosage, but I would not try it without a doctor close by who is going to follow you.

 

I would call every neurologist and immunologist in the area to see if anyone is familiar with PANDAS issues--and if you have to work with a doctor who is not familiar with PANDAS ask them to call Dr K or Dr Jim Leckman (Yale) to consult re: the use of prednisone.

 

Take care,

TMom

[thereishope]

I have a question. Even if you were to give your child a steroid burst solely on your own and saw good results, then what? Would you walk into a doctor's office and tell them you did that? You can't lie and said a dr prescribed it for you. They'll ask for the name and contact info. They can report you to child services.

[momtotaylor]

Asaxon,

 

I did consult with Dr. K via phone. He was very helpful and was able to give me the dosage. I too have tried our doctors and they have yet to prescribe the steroid burst for the same reasons as you are explaining. It is very frusterating! I do feel your frusteration.

 

I have thought about just doing it myself as you descibe as I do have some in the medicine cabinet from previous rashes, croup, etc. The dosage for the burst is so high that I just don't feel comfortable doing it without being under the supervision of a doctor.

 

My daughter (age 5) had croup a few months ago. She was put on a steroid; however, not as high of a dose as the burst. (I really was unfamiliar with the burst at the time.) Even though our daughter was so sick, my husband and I both saw dramatic changes in her behavior while on the steroid. She was better than she had been in months! (She also had a steroid administered via breathing treatment in the hospital.) I am not sure if this is a fluke or not given that it was not administered the way a typical steroid burst would be administered. (it was a much lower dosage and not for as many days)

 

Hang in there. I still have had no luck with getting one of our doctors to prescribe the burst. It just so happens that our kids are "rashy" kids...any chance your daughter is? Even though the dosage is much different, maybe next time your daughter has a rash, go to the doctor and let them know that she is very itchy, etc. Even though you would not see the effect of a true steroid burst, maybe you will see a difference as we did? I know it is a long shot..but maybe just keep it in mind.

 

Best of luck!

Jen

[Guest asaxon]

Asaxon,

 

I want to add, that the use of prednisone should be done only under a doctor's guidance, as it can have serious side effects.

 

We have found neurologists who have experience treating children with more severe issues (tourettes, tics, etc.) to be knowledgeable re: the use of prednisone.

 

It is not something to play around with--there can be serious reactions. I would only ever do this under a doctors guidance (and someone who is close to you, in case your child has a bad reaction.) Dr K can advise re: dosage, but I would not try it without a doctor close by who is going to follow you.

 

I would call every neurologist and immunologist in the area to see if anyone is familiar with PANDAS issues--

If you have to work with a doctor who is not familiar with PANDAS ask them to call Dr K or Dr Jim Leckman (Yale) to consult re: the use of prednisone.

 

 

Asaxon--

You might consider a phone consult with Dr K. www.webpediatrics.com

 

It was WELL worth the money for us, he has been a great help and can advise you as to the prednisone burst. He was the one that advised us to try it in the first place.

 

We had a local neurologist follow Dr K's protocol over a year ago, and Dr K is extremely helpful both on the phone and email. All the best to you-- I hope things calm down for your child --

 

Thanks for the advice and good wishes.

[thereishope]

My neurologist gave a 5 day steroid on the theory that steroids work for other autoimmune disorders in bringing down inflamation, so it may work with PANDAS. Have you agrued that reasoning w/ you dr?

[Kayanne]

My neurologist gave a 5 day steroid on the theory that steroids work for other autoimmune disorders in bringing down inflamation, so it may work with PANDAS. Have you agrued that reasoning w/ you dr?

 

 

Vicki makes an excellent point! Prednisone is an immuno-suppressant.

 

Your child should be examined before being given the steroid...prednisone can casuse serious complications with many other common health issues.

 

I wish you the best of luck...if the DC area is accessible to you...seek out Dr. Latimer...she will help you.

[michele]

That is why our ped wouldn't give the burst because she had no intention of doing any IVIG and we had no other Dr. to do it so why try it?

I have a question. Even if you were to give your child a steroid burst solely on your own and saw good results, then what? Would you walk into a doctor's office and tell them you did that? You can't lie and said a dr prescribed it for you. They'll ask for the name and contact info. They can report you to child services.

[bronxmom2]

Ironically, I just had a bad case of poison ivy that required steroids, and I was given prednisone-- since it's the only thing that's moderately safe while nursing. (I am still nursing a toddler.) Anyway, when the dr. mentioned prednisone I laughed (as much as you can laugh with your face completely swollen shut) and said I'd been trying to get that for my PANDAS son for many months to no avail. I saw her visibly stiffen and I think she then lowered the dose she prescribed...or maybe I imagined that?... anyway it was a good thing she gave me the minimum because as soon as I heard the word prednisone I thought of coming on here and asking what dose to give him and doing it myself with whatever extra prednisone I'd managed to obtain. I don't think I really would have done this, but the temptation was there immediately.

 

The prednisone did make me jittery and emotionally and little volatile.

[thereishope]

My husband also received prednisone for his poison sumac and he got a 2 week course. he's on the last of it today. He's been having headaches for the last few days. I wondered if there's a connection. Since it's his last day, we're not even going to ask the dr. But if it's a child, that would be a totally different situation, esp for med history. My 5 yr old son received it for 5 days and had no negative reaction. But it was only for 5 days and it did help give him relief.

 

As for Michele's point, my son's neurologist gave the steroid w/ no intention of IVIG. He gave it because my son's behaviors were worsening dramatically even after being an antibiotic for strep for many days. I was too distraught to ask at the time, but when I look back the steroid was given to either lower inflamation until the brain itself had a little more time to heal or maybe it was to suppress his immune system so antibodies would stop being produced, if they were still being produced at that time.

 

Finally, from other discussions I've had w/ my son's neurologist, I don't think he'd ever give a steroid unless it was shortly after a strep infection.

[Guest asaxon]

My neurologist gave a 5 day steroid on the theory that steroids work for other autoimmune disorders in bringing down inflamation, so it may work with PANDAS. Have you agrued that reasoning w/ you dr?

Yes, but I'm not going to waste too much time arguing; I'm going to keep looking for a doctor who I trust. I don't feel that I should have to argue with my doctors, educate them, or do the level of research I have had to do to properly diagnose my daughter's medical condition based on the current state of the medical research. Isn't that's what we pay the little darlings to do for us?

[Guest asaxon]

My neurologist gave a 5 day steroid on the theory that steroids work for other autoimmune disorders in bringing down inflamation, so it may work with PANDAS. Have you agrued that reasoning w/ you dr?

 

 

Vicki makes an excellent point! Prednisone is an immuno-suppressant.

 

Your child should be examined before being given the steroid...prednisone can casuse serious complications with many other common health issues.

 

I wish you the best of luck...if the DC area is accessible to you...seek out Dr. Latimer...she will help you.

 

Thanks, I'm not in the DC area. As for complications, I don't think that there is a high risk with a short-term burst for otherwise-healthy children--I remember getting a steroid burst at least once every summer as a kid to treat my annual poison ivy rash.

[michele]

We are traveling six hours from OH to see Latimer next week. Also flew to see T Murphy in Florida a few years ago. PANDAS is that unknown and misunderstood that there are few Dr.'s in the world who treat it regularly.

My neurologist gave a 5 day steroid on the theory that steroids work for other autoimmune disorders in bringing down inflamation, so it may work with PANDAS. Have you agrued that reasoning w/ you dr?

 

 

Vicki makes an excellent point! Prednisone is an immuno-suppressant.

 

Your child should be examined before being given the steroid...prednisone can casuse serious complications with many other common health issues.

 

I wish you the best of luck...if the DC area is accessible to you...seek out Dr. Latimer...she will help you.

 

Thanks, I'm not in the DC area. As for complications, I don't think that there is a high risk with a short-term burst for otherwise-healthy children--I remember getting a steroid burst at least once every summer as a kid to treat my annual poison ivy rash.