PANDAS is remission for 2 weeks now (both sons)!

[Stephanie2]

Well, I just thought I would give everyone our update on Spironolactone:

 

I increased my 5yo son's dose of spironolactone 2 weeks ago. There was an overnight cessation of many of his debilitating pandas symptoms (anxiety, depression, irritability, OCD, separation anxiety - all gone). Only thing left is some very mild motor tics and mild/moderate verbal tics (these decreased to a tolerable level, though).

 

After seeing the turnaround with my 5 yo, I called the doctor 3 days later and asked for him to put my 2 yo on it. I would say that his OCD is down 50-75% and his separation anxiety is gone completely (used to cry bloody murder at bed and naptime, now he just lays in his crib and "talks" to himself very sweetly before drifting off to sleep). The other thing I noticed with him is that he is sleeping much more soundly. Used to be that every little noise in the house would wake him and get him crying. Now he sleeps so solidly, I can even go into his room and rub his belly and he won't wake up!!

 

I will have to get back to the forum regarding my 2 yo in another week, though, because we increased his abx the same day that we started spiro, so I can't say for sure. All I know is that he was "exorcist" the day I started it and he is no longer that bad.

 

Just thought I would keep up with the feedback on this resource!

http://www.icdrc.org/documents/Bradstreet%...thor%20Copy.pdf

 

Stephanie

Edited May 11, 2010 by Stephanie2

[saidie10]

So happy for you and your boys good results so far! What great news and I will send some positive thoughts your way in the hopes they continue to improve!!!

 

Well, I just thought I would give everyone our update on Spironolactone:

 

I increased my 5yo son's dose of spironolactone 2 weeks ago. There was an overnight cessation of many of his debilitating pandas symptoms (anxiety, depression, irritability, OCD, separation anxiety - all gone). Only thing left is some very mild motor tics and mild/moderate verbal tics (these decreased to a tolerable level, though).

 

After seeing the turnaround with my 5 yo, I called the doctor 3 days later and asked for him to put my 2 yo on it. I would say that his OCD is down 50-75% and his separation anxiety is gone completely (used to cry bloody murder at bed and naptime, now he just lays in his crib and "talks" to himself very sweetly before drifting off to sleep). The other thing I noticed with him is that he is sleeping much more soundly. Used to be that every little noise in the house would wake him and get him crying. Now he sleeps so solidly, I can even go into his room and rub his belly and he won't wake up!!

 

I will have to get back to the forum regarding my 2 yo in another week, though, because we increased his abx the same day that we started spiro, so I can't say for sure. All I know is that he was "exorcist" the day I started it and he is no longer that bad.

 

Just thought I would keep up with the feedback on this resource!

http://www.icdrc.org/documents/Bradstreet%...thor%20Copy.pdf

 

Stephanie

[matis_mom]

Well, I just thought I would give everyone our update on Spironolactone:

 

I increased my 5yo son's dose of spironolactone 2 weeks ago. There was an overnight cessation of many of his debilitating pandas symptoms (anxiety, depression, irritability, OCD, separation anxiety - all gone). Only thing left is some very mild motor tics and mild/moderate verbal tics (these decreased to a tolerable level, though).

 

After seeing the turnaround with my 5 yo, I called the doctor 3 days later and asked for him to put my 2 yo on it. I would say that his OCD is down 50-75% and his separation anxiety is gone completely (used to cry bloody murder at bed and naptime, now he just lays in his crib and "talks" to himself very sweetly before drifting off to sleep). The other thing I noticed with him is that he is sleeping much more soundly. Used to be that every little noise in the house would wake him and get him crying. Now he sleeps so solidly, I can even go into his room and rub his belly and he won't wake up!!

 

I will have to get back to the forum regarding my 2 yo in another week, though, because we increased his abx the same day that we started spiro, so I can't say for sure. All I know is that he was "exorcist" the day I started it and he is no longer that bad.

 

Just thought I would keep up with the feedback on this resource!

http://www.icdrc.org/documents/Bradstreet%...thor%20Copy.pdf

 

Stephanie

Great news Stephanie! I hope the improvement continues until you have them 100% back!

Thanks for the link to the article... a little bit above what I can process right now...

So how does Spironolactone compare to steroids? It is better/safer/different? We are finishing our 3rd month-long steroid burst. I hope we don't need another one!

[coco]

Stephanie, that is fantastic news! I am so glad to hear this. Can you remind me again what your son's doctor started them at, dosage-wise? Are there any side effects that you have to watch for and do you have to supplement with anything else? Are you on it indefinitely? I loved it how you mentioned your little one was sleeping more soundly. Reminds me of my dd's early bad sleeping habits and I wonder if this could have helped her, too.

[fuelforall]

I second what Coco says.

Dosage for a 57 pound boy and dosage for a 39 pound three year old should differ some.

Now I've got to get my Dan doctor on board.

 

Michael

[faith]

Stephanie,

Is the spiro prescribed for autism only, just wondering? could I ask why your doc prescribed that along with the abx, or were you already on abx? Also, the issues you feel are resolved for the time being, ..had they ever been gone before for any period of time? I know you've wondered if it was the spiro that is helping, so just curious about that too. Did your doc beleive that the affects of the spiro would be this quick, or did he feel it would be a number of months before it had some positive effects, if any. Any side effects that you note?

 

thanks

Faith

Edited May 11, 2010 by faith

[Stephanie2]

Well, I just thought I would give everyone our update on Spironolactone:

 

I increased my 5yo son's dose of spironolactone 2 weeks ago. There was an overnight cessation of many of his debilitating pandas symptoms (anxiety, depression, irritability, OCD, separation anxiety - all gone). Only thing left is some very mild motor tics and mild/moderate verbal tics (these decreased to a tolerable level, though).

 

After seeing the turnaround with my 5 yo, I called the doctor 3 days later and asked for him to put my 2 yo on it. I would say that his OCD is down 50-75% and his separation anxiety is gone completely (used to cry bloody murder at bed and naptime, now he just lays in his crib and "talks" to himself very sweetly before drifting off to sleep). The other thing I noticed with him is that he is sleeping much more soundly. Used to be that every little noise in the house would wake him and get him crying. Now he sleeps so solidly, I can even go into his room and rub his belly and he won't wake up!!

 

I will have to get back to the forum regarding my 2 yo in another week, though, because we increased his abx the same day that we started spiro, so I can't say for sure. All I know is that he was "exorcist" the day I started it and he is no longer that bad.

 

Just thought I would keep up with the feedback on this resource!

http://www.icdrc.org/documents/Bradstreet%...thor%20Copy.pdf

 

Stephanie

Great news Stephanie! I hope the improvement continues until you have them 100% back!

Thanks for the link to the article... a little bit above what I can process right now...

So how does Spironolactone compare to steroids? It is better/safer/different? We are finishing our 3rd month-long steroid burst. I hope we don't need another one!

 

Mati's Mom, well spiro is not a steroid and I do believe it is considered much safer than continued use of steroids. I would say that for my 5 yo the effect is better than his steroid burst was. More solid and sustaining. It is actually used to lower blood pressure and also used for decreasing aldosterone/testosterone, as an anti-inflammatory and an immune modulator (this effect was discovered in the 90's, the drug has been around since the 50's I believe). For autism/pandas they use a very low dose so it will not affect blood pressure/testosterone too much. It is cheap b/c it is generic. The only side effect really is constipation, but I have resolved that by increasing the boys' vit c and magnesium, now they go every day.

 

Stephanie

[Stephanie2]

Stephanie, that is fantastic news! I am so glad to hear this. Can you remind me again what your son's doctor started them at, dosage-wise? Are there any side effects that you have to watch for and do you have to supplement with anything else? Are you on it indefinitely? I loved it how you mentioned your little one was sleeping more soundly. Reminds me of my dd's early bad sleeping habits and I wonder if this could have helped her, too.

 

The doctor started my ds5 on 25 mg, then we increased to 37.5 mg (that is when I saw the dramatic improvement). We are supposed to increase to 50 mg in a couple weeks, but I really don't see the need to increase it unless the doctor is adament about it for some reason. 50 mg will be the max dose. My ds2 is on 25 mg and that will be his max dose. Basically, 1 mg per pound.

 

I have to tell you the better sleeping is just a dream come true. Can't tell you how many torturous nights I had with my 5 yo, screaming bloody murder at bedtime and it didn't matter how long I rocked him, etc. It was a nightmare. Then he would wake up in the middle of the night and in the morning crying. Even at naptime, go to sleep crying, wake up crying. If only I knew about pandas back then...

 

The side effect is constipation but I increased vit c and magnesium and now they go every day. I have to watch their potassium intake b/c it is a potassium-sparing diuretic. Limit bananas, potato skins, uncooked tomatoes and supplements with potassium in it, etc.

 

I don't know how long they will be on it. I still want to do some further research, but I imagine that they will need it until they "grow out" of the autoimmune response which will be a long time from now.

 

Stephanie

[Stephanie2]

Stephanie,

Is the spiro prescribed for autism only, just wondering? could I ask why your doc prescribed that along with the abx, or were you already on abx? Also, the issues you feel are resolved for the time being, ..had they ever been gone before for any period of time? I know you've wondered if it was the spiro that is helping, so just curious about that too. Did your doc beleive that the affects of the spiro would be this quick, or did he feel it would be a number of months before it had some positive effects, if any. Any side effects that you note?

 

thanks

Faith

 

Faith, this office prescribes it for autism b/c they mainly see autistic kids. But they also see kids like ours with OCD, Tourettes, Bi-polar, ADHD, you name it. They get to the bottom of the symptoms and many times they find that the kids have pandas, so they are very adept at treating pandas. They find that many kids with autism have autoimmune issues, related to pandas and otherwise, and that is why there is such a good response to this drug. I mean my kids do not have an autism dx but I have wondered at times if they were autistic. I think with my 5 yo it turns out that it is more related to pandas. With my 2 yo I think he was headed toward autism until I stopped vaccines and brought him to our doc (who is a DAN doctor). Many times the DAN doctors are just ahead of the curve on treating these things b/c they are not afraid to do things "out of the box" for these kids who are suffering NOW and don't have 20 years for the so-called "solid" data to come out. So they have experimented with the use of spiro and found amazing results. It may take 10 to 20 years for a mainstream doc to come around to this...

 

My 2yo was already on prophylactic abx, but he woke up one morning in "exorcist" mode so I decided that I needed to throw everything at him. I called the doc and he increased his abx (which is what he does whenever pandas exacerbates) and I requested to start spiro b/c of the amazing results that I witnessed with my 5yo just a few days prior.

 

For my 5yo, you asked if his symptoms have ever been in remission for any period of time. From what I can recall, they may have been in remission for MAYBE 2 weeks last summer. Before that, the only time his symptoms have been this suppressed is back in Jan 2009 right before I made the mistake of getting his polio shot. He has not been the same since. So, that's why this is so amazing for us to have this "break"!! Yes, I still do wonder if the IVIG plays into it. He had 1 mg/kg dose of IVIG about 3.5 weeks before I increased his spiro dose. After the IVIG there was a definite turning back of pages. Then I increased the spiro and he woke up the very next day a new child. It was amazing and very surprising. I mean, could the IVIG have finally kicked in at that very moment while he was sleeping? Maybe, but I have never heard of it happening that way. Especially at the dose that he received.

 

The doctor said that it is very common for them to receive an email within 3 days of starting (or increasing) spiro stating that their child is like a new kid. So, yes it does seem to have an immediate effect. And like I said, the only side effect I have seen is constipation and I increased his vit c and magnesium and now they go everyday.

 

And by the way, anyone who is considering looking further into this you may also want to look into LDN (low-dose naltrexone). Many within the autism community whose kids also have pandas, have had dramatic results with LDN b/c it is also an immune modulator. Many of them have it compounded as a cream that is applied right before bedtime. I hear that you have to play around with the dose until you get it just right. This is something I may try in the future after I have some time to do some research regarding spiro vs. LDN.

 

If anyone wants to talk to people who have tried these things you can join one of the autism/DAN protocol message boards on yahoo. Here are some of them: MB12valtrex, abmd, beyondgfcf, biomedheads, to name a few. Most of these moms have never had to resort to IVIG b/c the DAN docs have so many other "tools" that they use...

 

Stephanie

[Stephanie2]

Michael, if you don't mind, who is your DAN doc? I believe the use of spiro started with our office and is now being recongnized and used by the other DAN docs. Some of them prefer to use LDN (low-dose naltrexone) which is also immune modulatory. Our DAN is with Bradstreet in Melbourne, FL.

 

Well, our DAN usually uses 1 mg/lb. So my 47 lb. 5 yo takes 37.5 mg at the moment but he is supposed to increase to 50 mg in a couple weeks (which I'm not sure is necessary at this point). My 28 lb. 2 yo is taking 25 mg which is his top dose.

 

Stephanie

I second what Coco says.

Dosage for a 57 pound boy and dosage for a 39 pound three year old should differ some.

Now I've got to get my Dan doctor on board.

 

Michael

[fuelforall]

Ken Bock and Michael Compain are the two DAN doctors.

Thanks.

[KeithandElizabeth]

Stephanie:

 

What fantastic news about how well your sons are doing!!!!

 

So, how long are you supposed to use the Spirolactone?

 

Elizabeth

[MomWithOCDSon]

Mati's Mom, well spiro is not a steroid and I do believe it is considered much safer than continued use of steroids. I would say that for my 5 yo the effect is better than his steroid burst was. More solid and sustaining. It is actually used to lower blood pressure and also used for decreasing aldosterone/testosterone, as an anti-inflammatory and an immune modulator (this effect was discovered in the 90's, the drug has been around since the 50's I believe). For autism/pandas they use a very low dose so it will not affect blood pressure/testosterone too much. It is cheap b/c it is generic. The only side effect really is constipation, but I have resolved that by increasing the boys' vit c and magnesium, now they go every day.

 

Stephanie

I thought I read somewhere that spiro is a synthetic steroid?

[melanie]

I mentioned it to his psych,she said the dermo would prescribe it.I got it from his DAN dr years ago,I just found the old script in the closet(I have to clean that out) I say if it works I dont care what it is.I know its a diretic,I dont remember anything bad and Im sure I read everything about it.

 

keep us posted

 

Melanie

[tpotter]

If it lowers testosterone, should it be given to a teenage boy (like mine...I know your children are younger)? (Just a thought :-)