Jump to content
ACN Latitudes Forums

Anyone using Spironolactone?


Recommended Posts

I am just wondering because our DAN doctor frequently prescribes spironolactone, a high-blood pressure med that safely reduces brain inflammation. I started my son on it a month ago and I thought I noticed a difference in behavior. Then yesterday I increased his dose (you slowly increase over two months) and today I noticed a huge difference in his irritablitly (gone), sep anxiety (gone) and OCD behaviors. Definitely too soon to tell, but I was wondering if anyone else is using this. I will report back when I observe more days on this increased dose...

 

Stephanie

Edited by Stephanie2
Link to comment
Share on other sites

i read something about it somewhere...could have been here...

are you using it the son that had ivig or the younger boy?

 

 

 

I am just wondering because our DAN doctor frequently prescribes (and did a small clinical trial on) spironolactone, a high-blood pressure med that safely reduces brain inflammation. I started my son on it a month ago and I thought I noticed a difference in behavior. Then yesterday I increased his dose (you slowly increase over two months) and today I noticed a huge difference in his irritablitly (gone), sep anxiety (gone) and OCD behaviors. Definitely too soon to tell, but I was wondering if anyone else is using this. I will report back when I observe more days on this increased dose...

 

Stephanie

Link to comment
Share on other sites

Fixit, I'm using it on my 5 yo who had IVIG 3.5 weeks ago. I thought that maybe the IVIG is finally kicking in, but the change was so overnight that I was leaning more toward the increase in spironolactone dose. When Scott saw my son's urine analysis (porphyrin test) which showed very high brain inflammation (any wonder why?!!) he prescribed spironolactone and said it has my son's name written all over it. It took me a long time to start it b/c I didn't want to go down the road of RX's but then one becomes a little desperate over time with PANDAS!!

 

I will let you know how the next few days go. I do have to say that his tics are still there, though. It seems that nothing helps his tics, and therefore I am thinking about requesting that Scott run bloodwork for Mycoplasma pneum. Of course it could be yeast or any number of things. Boy if tics is all that's left after all is said and done I won't be devastated, just a little disappointed...

 

By the way if you want to see the study they did on spironolactone it is on their website along with all the other studies they have posted: www.icdrc.org

 

Stephanie

Link to comment
Share on other sites

Fixit, I'm using it on my 5 yo who had IVIG 3.5 weeks ago. I thought that maybe the IVIG is finally kicking in, but the change was so overnight that I was leaning more toward the increase in spironolactone dose. When Scott saw my son's urine analysis (porphyrin test) which showed very high brain inflammation (any wonder why?!!) he prescribed spironolactone and said it has my son's name written all over it. It took me a long time to start it b/c I didn't want to go down the road of RX's but then one becomes a little desperate over time with PANDAS!!

 

I will let you know how the next few days go. I do have to say that his tics are still there, though. It seems that nothing helps his tics, and therefore I am thinking about requesting that Scott run bloodwork for Mycoplasma pneum. Of course it could be yeast or any number of things. Boy if tics is all that's left after all is said and done I won't be devastated, just a little disappointed...

 

By the way if you want to see the study they did on spironolactone it is on their website along with all the other studies they have posted: www.icdrc.org

 

Stephanie

 

i will check it out

 

I know no ill will is intended...but the tics are terrible here....at onset he couldn't walk and we had to carry him the first week...they have morphed and changed and combined...

The screech he just let out a second ago would kill someone with a hearing aid...when i was talking with my sister the other day...i told her ds was in the basement around the corner...she coldn't believe it....she said it sounds like a bird in the house.....up close it's terrible....YOU DON"T WANT THE TICS!!!!

just like the ocd...you don't know what will happen in the next 5 minutes

Link to comment
Share on other sites

I read it from yahoo groups that Spironolactone lowers testosterone and therefore being used as sort of detox agent for Autism kids.

Lowering testosterone supposedly reduces aggression and rage as well. I would really appreciate if you would update us with your son's progress on this med. I have this med line up for plan B in the future.

Link to comment
Share on other sites

Actually, it is an "aldosterone" lowering drug, and I don't believe it alters testosterone. It is also immunomodulatory. You can see more about that in the paper I was referring to:

 

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

 

 

Stephanie

 

 

 

I read it from yahoo groups that Spironolactone lowers testosterone and therefore being used as sort of detox agent for Autism kids.

Lowering testosterone supposedly reduces aggression and rage as well. I would really appreciate if you would update us with your son's progress on this med. I have this med line up for plan B in the future.

Edited by Stephanie2
Link to comment
Share on other sites

Stephanie,

 

I was curious if they are still using the french lab for the porphyrin test and if you have treated your son for high metals or is that not an issue for him?

 

Actually Kim, his metals came back a little elevated, but I am not ready to and not sure we will chelate. If he had autism (he was a borderline kid) then he no longer does when not in pandas exacerbation. Many of his other issues have been dealt with and pandas is our final fronteir so to speak.

 

He is taking supplements which provide a mild chelation effect over time, like Methyl B12 and other "methylators". The other thing is that when you start to chelate you open up lots of cans of worms (bacteria/yeast/etc) which we have already exacerbated with antibiotics. So, I wouldn't dare go there right now!!

 

Oh, and yes we got these results from the french lab.

 

Now my 2 year old may be another story, but I'm not even testing his metals until we deal with his pandas and see how his speech develops over the next 6 months or so...

 

Stephanie

Link to comment
Share on other sites

Thank you Stephanie2

very helpful

 

 

We used it a few ytears ago too.I saw results and then not so much .Many DAN mds use it when the kids enter puberty.If it works i think its harmless

Melanie

Link to comment
Share on other sites

Melanie,

 

What do you mean that you saw results and then not so much? Did the results wear off? What dose were you using? Did you increase over a few months? Did your child go into a major exacerbation while on it? I do know that it is not the cure all, but it seems that it has pulled us out of the day to day irritability/depression/OCD. I'm not sure how it would fare with an acute strep infection...

 

My 5 yo started with 25 mg the first month, then we just increased to 37.5 mg. Next month we are to increase to 50 mg.

 

Stephanie

 

Thank you Stephanie2

very helpful

 

 

We used it a few ytears ago too.I saw results and then not so much .Many DAN mds use it when the kids enter puberty.If it works i think its harmless

Melanie

Link to comment
Share on other sites

Melanie,

 

What do you mean that you saw results and then not so much? Did the results wear off? What dose were you using? Did you increase over a few months? Did your child go into a major exacerbation while on it? I do know that it is not the cure all, but it seems that it has pulled us out of the day to day irritability/depression/OCD. I'm not sure how it would fare with an acute strep infection...

 

My 5 yo started with 25 mg the first month, then we just increased to 37.5 mg. Next month we are to increase to 50 mg.

 

Stephanie

Hi Sttephanie

 

I truly cant recall probably the standard DAN dr dose hes 16 now and I did see some great results.This was pre PANDAS andaround puberty.I dont remember why I stopped it I think I didnt see anything after a while but then again ,all ###### broke loose and we just went in different directions with medication.I know its a diretic,right? He went on risperadal and buspar for his behaviors.Now were just doing the IVIG every 21 days.I would stick with it .Hey if it helps.Also I know lots of docs are using it so it must be doing something..

 

Good Luck and have a great day.

Thank you Stephanie2

very helpful

 

 

We used it a few ytears ago too.I saw results and then not so much .Many DAN mds use it when the kids enter puberty.If it works i think its harmless

Melanie

Link to comment
Share on other sites

I am just wondering because our DAN doctor frequently prescribes spironolactone, a high-blood pressure med that safely reduces brain inflammation. I started my son on it a month ago and I thought I noticed a difference in behavior. Then yesterday I increased his dose (you slowly increase over two months) and today I noticed a huge difference in his irritablitly (gone), sep anxiety (gone) and OCD behaviors. Definitely too soon to tell, but I was wondering if anyone else is using this. I will report back when I observe more days on this increased dose...

 

Stephanie

 

 

OK, that is really interesting! I take spironolactone myself because I tend to have too much testosterone.

 

So they don't worry about giving it to boys that are nearly in or going through puberty? I ask because DS is only 10, but definitely starting. I'd be happy to slow it all down really as long as it was safe for him.

Link to comment
Share on other sites

Well, I was under the impression that it does not alter testosterone, but maybe I am wrong. I know that the paper I read about it, regarding using it for autism/OCD/autoimmunity, states that it does not affect testosterone. Check it out in one of my above posts...

 

BTW, It has now been 3 full days with great improvements after the increased spiro. Scott, my DAN practitioner, says that he thinks the improvement is a combination of IVIG kicking in and also the spiro increase. I don't know, it really did happen quite rapidly 24 hours after the increase...time will tell I guess! Also, I decided to start my 2 year old on spiro, he is in a terrible exacerbation right now. Upping the antibiotics and starting diflucan, too. Hope to pull out of this soon! He's driving me up the wall!

 

Stephanie

 

I am just wondering because our DAN doctor frequently prescribes spironolactone, a high-blood pressure med that safely reduces brain inflammation. I started my son on it a month ago and I thought I noticed a difference in behavior. Then yesterday I increased his dose (you slowly increase over two months) and today I noticed a huge difference in his irritablitly (gone), sep anxiety (gone) and OCD behaviors. Definitely too soon to tell, but I was wondering if anyone else is using this. I will report back when I observe more days on this increased dose...

 

Stephanie

 

 

OK, that is really interesting! I take spironolactone myself because I tend to have too much testosterone.

 

So they don't worry about giving it to boys that are nearly in or going through puberty? I ask because DS is only 10, but definitely starting. I'd be happy to slow it all down really as long as it was safe for him.

Edited by Stephanie2
Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...