Prednisone Burst

[Santi]

Dr. K recommended a 5 days prednisone burts at 25mg for my son to see if we could get any closer to finding out if he has PANDAS. I'm a little nervous about it even though he assured me it was safe. Any experiences with this? Also, can anyone explain what exactly happens to the body when you do this? how is it related to PANDAS possibly? We only discussed what behaviors to look out for. Andrea

[Buster]

Hi Santi,

 

Prednisone is a corticosteroid that is particularly effective at suppressing the immune system. Adrenal suppression occurs if prednisone is taken for longer than 7 days. This is why if you are on pred longer than 7 days you need to wean off it. The amount of time to wean depends on the amount of time you are on pred.

 

While prednisone is typically quite safe, it is nothing to mess around with. For example, the treatment for severe poison oak or poison ivy is often 1mg/kg of prednisone.

 

In terms of experience, we have used pred twice and have seen good effect from the prednisone. PANDAS is thought to be caused by three things:

1. the creation of an anti-neuronal antibody
   
2. a failure of the immune system to supress the faulty antibody
   
3. a breach in the blood-brain barrier that allows the antibody to reach neuronal tissue
   

Prednisone acts in two ways. First, it is highly anti-inflammatory. If the breach in BBB is due to inflammation, then the predinsone can close the BBB. Second, predinsone acts to suppress antibody creation and T-cell activation. As such it affects #2 by supressing the effect of the faulty antibody

 

Each child seems to respond differently to pred. In our case, we had pretty complete remission of symptoms with a child with significant social anxiety feeling comfortable talking with others, a child with separation anxiety feeling comfortable being alone. I think each parent probably has something different, but in our case it was seeing our child again.

 

Regards,

 

Buster

 

 

 

Dr. K recommended a 5 days prednisone burts at 25mg for my son to see if we could get any closer to finding out if he has PANDAS. I'm a little nervous about it even though he assured me it was safe. Any experiences with this? Also, can anyone explain what exactly happens to the body when you do this? how is it related to PANDAS possibly? We only discussed what behaviors to look out for. Andrea

[EAMom]

I should add that sometimes it takes a week or two (or more) for the beneficial effects of the prednisone burst to "kick in"...and that our dd definitely did not seem better while on pred, but was better afterwards.

[ghostrider]

25mg for 5 days should be ok . What is his weight ? I recall my son was given 20mg for 5 days for his asthma bouts few years back.

[memom]

I would have to agree with Buster. Our experience with both my kids was good. DD17 has had two steroid trials, both showed amazing improvement (though temporary) of symptoms. She does not have tics. I think my daughters situation was different in that she was placed on a full month of steroids at very high doses (at her peak, taking 60mg a day) for a taper course of a month. This happened twice, once in October, the second in January. Both times similar results. No long term negatives. Once the meds stopped, any side effects gone.

DS20 placed on a 5 day trial by Dr. K., similar results as Buster and EAmom. 5 day course very easy with improvement but not as magic as my daughter on the longer course.

 

I see it as one more tool in helping to establish if the symptoms are autoimmune in nature. Half the the Pandas battle is having confidence in the diagnosis since there is no real test that categorically points to Pandas. I know that it was helpful for me to see with my own eyes that we got improvement in symptoms when everything else we had tried with traditional approaches did not help (NIH guidelines to work through treatment with mental health approaches, failed for a full year).

 

We are waiting for IVIG currently and when her symptoms are flaring she tells me she needs to go back on the steroids. She feels so much better on steroids than she does off.

 

Good luck.

 

Ellie

memom

[Santi]

Hi Santi,

 

Prednisone is a corticosteroid that is particularly effective at suppressing the immune system. Adrenal suppression occurs if prednisone is taken for longer than 7 days. This is why if you are on pred longer than 7 days you need to wean off it. The amount of time to wean depends on the amount of time you are on pred.

 

While prednisone is typically quite safe, it is nothing to mess around with. For example, the treatment for severe poison oak or poison ivy is often 1mg/kg of prednisone.

 

In terms of experience, we have used pred twice and have seen good effect from the prednisone. PANDAS is thought to be caused by three things:

1. the creation of an anti-neuronal antibody
   
2. a failure of the immune system to supress the faulty antibody
   
3. a breach in the blood-brain barrier that allows the antibody to reach neuronal tissue
   

Prednisone acts in two ways. First, it is highly anti-inflammatory. If the breach in BBB is due to inflammation, then the predinsone can close the BBB. Second, predinsone acts to suppress antibody creation and T-cell activation. As such it affects #2 by supressing the effect of the faulty antibody

 

Each child seems to respond differently to pred. In our case, we had pretty complete remission of symptoms with a child with significant social anxiety feeling comfortable talking with others, a child with separation anxiety feeling comfortable being alone. I think each parent probably has something different, but in our case it was seeing our child again.

 

Regards,

 

Buster

 

 

 

Dr. K recommended a 5 days prednisone burts at 25mg for my son to see if we could get any closer to finding out if he has PANDAS. I'm a little nervous about it even though he assured me it was safe. Any experiences with this? Also, can anyone explain what exactly happens to the body when you do this? how is it related to PANDAS possibly? We only discussed what behaviors to look out for. Andrea

Hi Buster,

 

In reference to your #3, what exactly does blood-brain barrier mean in layman's terms? I'm guessing this is where the antibodies actually attack the basal ganglia and cause behavior problems. Is this right? So, if the prednisone works and we see an improvement in behaviors (Dr. K said between day 6-21) then there is a high likelihood my son has PANDAS (this is what he told me). I'm still not quite getting this last part of the puzzle. Would you please explain. Thank you. You've been very helpful! Andrea

[Chemar]

Andrea, forgive me if you have already mentioned this but there is no evidence that your child has Tourette Syndrome, correct?

 

that is the only time when one should discuss it more carefully with the doctor as we were warned not to use steroids with TS as it can trigger more tics, sometimes very intensely as my TS husband learned the hard way. (I believe it is due to the dopaminergic reaction of corticosteroids but someone with more biochemical knowledge may understand it better than I do)

 

if no TS then, apart from the common side effects that can occur on steroids, it appears very beneficial in many autoimmune conditions, including PANDAS

[Santi]

Andrea, forgive me if you have already mentioned this but there is no evidence that your child has Tourette Syndrome, correct?

 

that is the only time when one should discuss it more carefully with the doctor as we were warned not to use steroids with TS as it can trigger more tics, sometimes very intensely as my TS husband learned the hard way. (I believe it is due to the dopaminergic reaction of corticosteroids but someone with more biochemical knowledge may understand it better than I do)

 

if no TS then, apart from the common side effects that can occur on steroids, it appears very beneficial in many autoimmune conditions, including PANDAS

My son does have a diagnosis of Tourettes but his tics look strangely different than the classic tourettes. We are still in question if the tics are genetic or from PANDAS. We have dealt with extreme tics so we've seen it all. I think it would be worth to see if his tics stop after the burst or get worse. If they do become worse then its an indication he does not have PANDAS. Andrea

[Buster]

In reference to your #3, what exactly does blood-brain barrier mean in layman's terms?

The blood brain barrier is a set of cells around the brain that prevent proteins and other large molecules in circulating blood from getting into the central spinal fluid. Diseases like Multiple Sclerosis are disorders where the blood brain barrier is open and proteins can interact with the brain. A sort of fun site on BBB is http://faculty.washington.edu/chudler/bbb.html

 

I'm guessing this is where the antibodies actually attack the basal ganglia and cause behavior problems.

I tend not to use the words "atttack the basal ganglia" and instead use "interfere with the basal ganglia" because there isn't strong evidence that the basal ganglia is actually damaged -- but yes. What Kirvan and Cunningham found was anti-neuronal antibodies in the Central Spinal Fluid of kids with PANDAS (or with Sydenham Chorea) and this auto-antibody seems to have come from circulating blood. For this to happen, the antibody must cross the BBB. Ths can occur due to high blood pressure, significant stress, or inflammation (http://www.latitudes.org/forums/index.php?showtopic=6063&hl=T-cell).

 

So, if the prednisone works and we see an improvement in behaviors (Dr. K said between day 6-21) then there is a high likelihood my son has PANDAS (this is what he told me).

Well, sort of. If you see significant improvement in behavior then it is likely that your child's behavior is related to inflammation or is having an auto-immune response. So presuming you have the "P", "N", "D" of PANDAS, Pred would help fill in the "A" (for auto-immune). The "Associated with Streptococuss" would come from either throat culture or blood work. The main reason for trying to figure out if it's GABHS or something else is to know how to treat the condition (i.e., now that you know it is auto-immune and presents as a neuropsychiatric disorder -- what are the triggers).

 

Buster

[thereishope]

If your son will be taking liquid prednisone, it doesn't taste that great. So, if he tends to fight over meds when he's in a possible exacerbation, give him a little at a time, squirting it in the cheek area.

[Santi]

In reference to your #3, what exactly does blood-brain barrier mean in layman's terms?

The blood brain barrier is a set of cells around the brain that prevent proteins and other large molecules in circulating blood from getting into the central spinal fluid. Diseases like Multiple Sclerosis are disorders where the blood brain barrier is open and proteins can interact with the brain. A sort of fun site on BBB is http://faculty.washington.edu/chudler/bbb.html

 

I'm guessing this is where the antibodies actually attack the basal ganglia and cause behavior problems.

I tend not to use the words "atttack the basal ganglia" and instead use "interfere with the basal ganglia" because there isn't strong evidence that the basal ganglia is actually damaged -- but yes. What Kirvan and Cunningham found was anti-neuronal antibodies in the Central Spinal Fluid of kids with PANDAS (or with Sydenham Chorea) and this auto-antibody seems to have come from circulating blood. For this to happen, the antibody must cross the BBB. Ths can occur due to high blood pressure, significant stress, or inflammation (http://www.latitudes.org/forums/index.php?showtopic=6063&hl=T-cell).

 

So, if the prednisone works and we see an improvement in behaviors (Dr. K said between day 6-21) then there is a high likelihood my son has PANDAS (this is what he told me).

Well, sort of. If you see significant improvement in behavior then it is likely that your child's behavior is related to inflammation or is having an auto-immune response. So presuming you have the "P", "N", "D" of PANDAS, Pred would help fill in the "A" (for auto-immune). The "Associated with Streptococuss" would come from either throat culture or blood work. The main reason for trying to figure out if it's GABHS or something else is to know how to treat the condition (i.e., now that you know it is auto-immune and presents as a neuropsychiatric disorder -- what are the triggers).

 

Buster

This is great information. I really appreciate you taking the tiime to do this. Now, your last statement is "what are the triggers". I thought the triggers are the Strep A. Or can it be something else? Andrea

[Santi]

25mg for 5 days should be ok . What is his weight ? I recall my son was given 20mg for 5 days for his asthma bouts few years back.

my son is actually 59 lbs. Does 25mg sound right? Andrea

[dut]

Hi - our dd6 65lbs did a 5 day burst at 60mg per day. She responded beautifully at that dose but it did seem high. We would absolutely do it again. We had minimal adverse effects - more irritable, increased appetite for a week or so but her symptoms fully resolved ( low level start of an episode but felt as though it was going sour, fast) for 5 weeks + and then we had super low level anxiety at bedtime for 3 more weeks and then that disappeared too.

[Johnsmom]

My A-HA moment on the prednisone burst came in the shower today!!!!!!!!! I get it now. We are on day 15 and the past two days have been awesome!!!!!!

 

 

In reference to your #3, what exactly does blood-brain barrier mean in layman's terms?

The blood brain barrier is a set of cells around the brain that prevent proteins and other large molecules in circulating blood from getting into the central spinal fluid. Diseases like Multiple Sclerosis are disorders where the blood brain barrier is open and proteins can interact with the brain. A sort of fun site on BBB is http://faculty.washington.edu/chudler/bbb.html

 

I'm guessing this is where the antibodies actually attack the basal ganglia and cause behavior problems.

I tend not to use the words "atttack the basal ganglia" and instead use "interfere with the basal ganglia" because there isn't strong evidence that the basal ganglia is actually damaged -- but yes. What Kirvan and Cunningham found was anti-neuronal antibodies in the Central Spinal Fluid of kids with PANDAS (or with Sydenham Chorea) and this auto-antibody seems to have come from circulating blood. For this to happen, the antibody must cross the BBB. Ths can occur due to high blood pressure, significant stress, or inflammation (http://www.latitudes.org/forums/index.php?showtopic=6063&hl=T-cell).

 

So, if the prednisone works and we see an improvement in behaviors (Dr. K said between day 6-21) then there is a high likelihood my son has PANDAS (this is what he told me).

Well, sort of. If you see significant improvement in behavior then it is likely that your child's behavior is related to inflammation or is having an auto-immune response. So presuming you have the "P", "N", "D" of PANDAS, Pred would help fill in the "A" (for auto-immune). The "Associated with Streptococuss" would come from either throat culture or blood work. The main reason for trying to figure out if it's GABHS or something else is to know how to treat the condition (i.e., now that you know it is auto-immune and presents as a neuropsychiatric disorder -- what are the triggers).

 

Buster

[Buster]

I thought the triggers are the Strep A. Or can it be something else? Andrea

Well PANDAS is thought to be caused by 3 things:

1. the creation of an anti-neuronal antibody (likely in response to GABHS)
   
2. the failure of the immune system to recognize this as anti-host and suppress the antibody
   
3. a breach of the blood brain barrier allowing the antineuronal antibody to reach neuronal tissue
   

So while strep seems to cause #1 and the exotoxins of strep (and superantigens of strep) seem to cause the breach in #3. Many other things can cause or trigger a breach. Actually any inflammation (or even high blood pressure) can cause the breach. So if for some reason your child has high inflammation of the endothelial cells around the brain, then something other than GABHS could allow the existing antibodies (that live for 4-8 weeks) to interact with neuronal tissue.

 

Thus while the non-GABHS might not be the "cause" of the anti-neuronal antibodies -- it can be the cause of the symptoms by opening the BBB.

 

Buster