90% remission of pandas symptoms for one week!

[Stephanie2]

Some of you may remember that my ds5 had IVIG 4.5 weeks ago (1 gr/kg). Also, I started my son on spironolactone about the same time. Well, one week ago today I had still not seen any improvement of symptoms, in fact I think things were worse than before IVIG. So I increased my son's spironolactone (I was supposed to increase it after one month). Within 24 hours he was a changed child! Immediately his debillitating separation anxiety was 95% gone, his irritability/depression was 100% gone and his OCD was 90% gone! His tics are still there, but may have improved some b/c they just don't seem as irritating. It has been 1 week now and he seems to be holding steady!

 

Right away I wondered if it was the increase in spiro or if by coincidence the IVIG kicked in overnight. If anyone has any input on that please let me know! I have never heard of IVIG just kicking in over night like that (and it literally was over night...he woke up the next morning totally different!). Has it ever happened that way for anyone's child? At the time he was about 3.5 weeks post IVIG.

 

Well, I thought some of you may be interested to hear about this. I will post the link to the paper that our doctor co-authored on how this drug works to modulate the immune system and reduce inflammation. They use it a lot for kids with autism and/or pandas.

 

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

 

BTW, when I saw what spironolactone did for my 5 year old I called the doc and got my 2 year old put on it right away since he has been in a terrible pandas exacerbation. The only problem is that he was sick that day so we also increased his antibiotics from a prophylactic to a treatment dose. There was an immediate improvement, but I won't know if it is from the spiro until he goes off the antibiotic.

 

I know I should be spacing stuff out to get a clearer picture of what is working, but I have been in over my head for a long time with these 2 and I am at that point of desperation where you just throw everything at them at once to see what "sticks". Luckily, something is working. I will report back when I have a better idea of what it is.

Edited May 4, 2010 by Stephanie2

[patty]

So happy to hear that your son is improving!

 

BTW, my son also has allergy and asthma and i checked your blog and couldn't find the supplements that you are giving your son. Can you help me find the info.? Thx!

 

Pat

[Suzan]

Congrats on this great news!!!! And thanks for the update. I will read this link and take it to our neurologist on Thursday and see what he thinks about it.

 

Susan

[Fixit]

Hi Stephanie....

thanks for posting and keeping us updated....i like all the new info

 

how long do they/you think you'd need to keep your ds on the spiro??

 

i have questions and concerns abouot spironolactone.

from another post, i heard it lowers testosterone.......???? i can see how that would be good in one aspect...but overall....????

ds is 10 and obviously would be entering puberty....not that this is on our list yet..but always getting ready for next step....

would that effect his height...would it effect long term sperm count...is there any info on that...

in paper you posted it said side effects were minimal....but what were the side effects.....and what is considered minimal....

somone who should have been 6ft ends up 5'10.....or do they end up 5'5 and thats minimal compared what else they are dealing with???

or is just more sleepy and other things?????

 

Buster have you looked into this....or can you, or anyone who is good at reading or researching such things......

Edited May 4, 2010 by Fixit

[Fixit]

and not that this would have anything to do with spiro......but...

momwithocd posted this link in regards to inflammaiton and purberty....but

it talks about low testosterone and Mild hypoandrogenism ...if i'm readng it right...

 

http://www.eje-online.org/cgi/content/short/149/6/601

 

just get so nervous doing anything

[fuelforall]

Stephanie,

Any side effects your son complained of? Spironolactone on drugs.com etc lists particular ones such as nausea, things of that nature.

Also, in retrospect, would you have started your low dosage and kept it that way one WEEK instead of one month before bumping it up? Their bodies do need time to adjust, of course.

 

Michael

[AmberM]

A lot of kids on the spectrum have hormonal imbalances as well as high testosterone levels. I can't remember if your kiddo is on the spectrum, so sorry .......not trying to imply here! But what I was going to say is that it would be really easy to run some lab work before starting the drug and then a couple of months later to see if any problems were happening. I took spiro myself for PCOS and in my case, the numbers didn't change all that quickly.

 

One side effect that I had was dizziness because it caused my blood pressure to drop. It was low to begin with though and I was taking a much larger dose at around 500mgs per day. I think kids get between 1-3 mgs. daily.

 

I'm really excited to hear the improvements! I just e-mailed my dd's dr. to see if he'd be willing to write a script! I just finished reading Dr. Jepson's book and he was talking about spiro being great for overall inflammation. It said that one of Dr. Bradstreet's patients gained 22mos. of cognitive abilities in a 4 wk period from just using spironolactone!

-Amber

 

 

Hi Stephanie....

thanks for posting and keeping us updated....i like all the new info

 

how long do they/you think you'd need to keep your ds on the spiro??

 

i have questions and concerns abouot spironolactone.

from another post, i heard it lowers testosterone.......???? i can see how that would be good in one aspect...but overall....????

ds is 10 and obviously would be entering puberty....not that this is on our list yet..but always getting ready for next step....

would that effect his height...would it effect long term sperm count...is there any info on that...

in paper you posted it said side effects were minimal....but what were the side effects.....and what is considered minimal....

somone who should have been 6ft ends up 5'10.....or do they end up 5'5 and thats minimal compared what else they are dealing with???

or is just more sleepy and other things?????

 

Buster have you looked into this....or can you, or anyone who is good at reading or researching such things......

[Stephanie2]

So happy to hear that your son is improving!

 

BTW, my son also has allergy and asthma and i checked your blog and couldn't find the supplements that you are giving your son. Can you help me find the info.? Thx!

 

Pat

 

Pat, well I don't think my current list of supplements is on my blog, it changes so much. But if I had to guess about what is helping the allergies/asthma I would say: 1. no dairy, 2. all immune-boosting supplements, such as, Vit. C, B vitamins, Methyl B12 shot, and high-dose probiotics. Like I said, we have NO allegies/asthma in this house anymore where we all used to be severe!

 

 

Hi Stephanie....

thanks for posting and keeping us updated....i like all the new info

 

how long do they/you think you'd need to keep your ds on the spiro??

 

i have questions and concerns abouot spironolactone.

from another post, i heard it lowers testosterone.......???? i can see how that would be good in one aspect...but overall....????

ds is 10 and obviously would be entering puberty....not that this is on our list yet..but always getting ready for next step....

would that effect his height...would it effect long term sperm count...is there any info on that...

in paper you posted it said side effects were minimal....but what were the side effects.....and what is considered minimal....

somone who should have been 6ft ends up 5'10.....or do they end up 5'5 and thats minimal compared what else they are dealing with???

or is just more sleepy and other things?????

 

Buster have you looked into this....or can you, or anyone who is good at reading or researching such things......

 

Well, I keep hearing that it lowers testosterone levels, but in the paper they say that the effect is very minimal (or maybe they said not effect). Either way, for the purposes of autism/pandas they dose it very low. For us it is 1 mg/lb. Not to mention, at this very moment I don't even think we need to go up to the full dose b/c he is just so good right now. The major side effect that many ppl report is frequent urination and/or constipation. My son is not having a BM as frequently but I have been able to manage it easily by making him eat apples, making him drink pear juice, giving high-dose vit c and magnesium.

 

I would also like to get buster's opinion on this, as well as low-dose naltrexone, which they mention in the paper.

[Fixit]

A lot of kids on the spectrum have hormonal imbalances as well as high testosterone levels. I can't remember if your kiddo is on the spectrum, so sorry .......not trying to imply here! But what I was going to say is that it would be really easy to run some lab work before starting the drug and then a couple of months later to see if any problems were happening. I took spiro myself for PCOS and in my case, the numbers didn't change all that quickly.

 

One side effect that I had was dizziness because it caused my blood pressure to drop. It was low to begin with though and I was taking a much larger dose at around 500mgs per day. I think kids get between 1-3 mgs. daily.

 

I'm really excited to hear the improvements! I just e-mailed my dd's dr. to see if he'd be willing to write a script! I just finished reading Dr. Jepson's book and he was talking about spiro being great for overall inflammation. It said that one of Dr. Bradstreet's patients gained 22mos. of cognitive abilities in a 4 wk period from just using spironolactone!

-Amber

 

 

hi Amber...do you mind if i ask why you took spiro and for how long....did it resolve the reason you were takig it.

 

 

do you happen to know how long kids are suggested to be on this....till they see recovery...1 year..depends on the kid,,,,forever...

thought maybe you'd know..

so was the thing about dr brad's patient in the book by Jepson? did that improvement hold once the kid went off..is there a maintenance dose...or do you eventually get weaned off....

i realized you may not know....

[Stephanie2]

My son did not test "on the spectrum" but I do believe he was probably a little like asbergers. Very articulate, constantly telling everyone what to do, no sense of humor, frequent meltdowns, no pretend play, stims, perseverations, etc. I think his main issues, biomedically speaking, have been yeast, bacteria, pandas and also poor methylation. Now that we are getting all of that corrected he appears VERY neurotypical. As far as my 2 year old is concerned, I believe that if I did not intervene when I did (ie stop vaccines and start DAN protocol at 12 months) he would have ended up with a classic autism diagnosis. he just had no social interaction except to smile at us when we would talk to him. He made no attempt to communicate whatsoever. He would sit in the corner and play silently for hours and seek no socail interaction. He did not want any affection, etc. He came around very quickly but we still have speech delay, mitochondrial dysfunction and pandas to correct in him.

 

As far as spiro is concerned, it seems that both of my kids have had a tremendous increase in their social interactions. And my 2 year old seems to be making many more attempts to communicate with hand gestures and with words. He also wants me to play with him ALL THE TIME, which is wonderful but also a little time-consuming, but I am not complaining.

 

Stephanie

A lot of kids on the spectrum have hormonal imbalances as well as high testosterone levels. I can't remember if your kiddo is on the spectrum, so sorry .......not trying to imply here! But what I was going to say is that it would be really easy to run some lab work before starting the drug and then a couple of months later to see if any problems were happening. I took spiro myself for PCOS and in my case, the numbers didn't change all that quickly.

 

One side effect that I had was dizziness because it caused my blood pressure to drop. It was low to begin with though and I was taking a much larger dose at around 500mgs per day. I think kids get between 1-3 mgs. daily.

 

I'm really excited to hear the improvements! I just e-mailed my dd's dr. to see if he'd be willing to write a script! I just finished reading Dr. Jepson's book and he was talking about spiro being great for overall inflammation. It said that one of Dr. Bradstreet's patients gained 22mos. of cognitive abilities in a 4 wk period from just using spironolactone!

-Amber

 

 

Hi Stephanie....

thanks for posting and keeping us updated....i like all the new info

 

how long do they/you think you'd need to keep your ds on the spiro??

 

i have questions and concerns abouot spironolactone.

from another post, i heard it lowers testosterone.......???? i can see how that would be good in one aspect...but overall....????

ds is 10 and obviously would be entering puberty....not that this is on our list yet..but always getting ready for next step....

would that effect his height...would it effect long term sperm count...is there any info on that...

in paper you posted it said side effects were minimal....but what were the side effects.....and what is considered minimal....

somone who should have been 6ft ends up 5'10.....or do they end up 5'5 and thats minimal compared what else they are dealing with???

or is just more sleepy and other things?????

 

Buster have you looked into this....or can you, or anyone who is good at reading or researching such things......

[Stephanie2]

Just realized I did not answer this question and maybe Amber will know. I believe that Scott's office is the one who started using this drug first for immune issues. I don't know that there are a ton of kids and I don't know if enough time has gone by to determine how the kids do when they go off. Scott could definitley aswer this for you. He would be the best one to give you an idea of what they have seen. I believe they (Scott, Bradstreet, etc.) are still gathering data on this.

 

I do know that many in the autism community use low dose naltrexone for similar immune modulating benefits. Some have to stay on for several years and then they can go off. Maybe it is different in each kid.

 

Stephanie

 

A lot of kids on the spectrum have hormonal imbalances as well as high testosterone levels. I can't remember if your kiddo is on the spectrum, so sorry .......not trying to imply here! But what I was going to say is that it would be really easy to run some lab work before starting the drug and then a couple of months later to see if any problems were happening. I took spiro myself for PCOS and in my case, the numbers didn't change all that quickly.

 

One side effect that I had was dizziness because it caused my blood pressure to drop. It was low to begin with though and I was taking a much larger dose at around 500mgs per day. I think kids get between 1-3 mgs. daily.

 

I'm really excited to hear the improvements! I just e-mailed my dd's dr. to see if he'd be willing to write a script! I just finished reading Dr. Jepson's book and he was talking about spiro being great for overall inflammation. It said that one of Dr. Bradstreet's patients gained 22mos. of cognitive abilities in a 4 wk period from just using spironolactone!

-Amber

 

 

hi Amber...do you mind if i ask why you took spiro and for how long....did it resolve the reason you were takig it.

 

 

do you happen to know how long kids are suggested to be on this....till they see recovery...1 year..depends on the kid,,,,forever...

thought maybe you'd know..

so was the thing about dr brad's patient in the book by Jepson? did that improvement hold once the kid went off..is there a maintenance dose...or do you eventually get weaned off....

i realized you may not know....

[Stephanie2]

Michael,

 

The only side effect I am seeing is possible constipation, meaning not going as often (stool is not hard). Constipation can become a very baad issue for kids if the parents do not remain vigilent about keeping everything flowing with fruit, and other supplements like high dose vitamin C, magnesium, etc. I even gave my son Senakot (natural laxative) a couple times to prevent it from becoming an issue.

 

I'm not sure why our doc wanted us to increase the dose each month. I am guessing b/c my son has a history of constipation and he wanted his body to have a chance to adjust. For my 2 year old, he said I could increase the dose after a "few days". Maybe that's b/c he tends to be more of a diarrhea kid!

 

Stephanie

 

Stephanie,

Any side effects your son complained of? Spironolactone on drugs.com etc lists particular ones such as nausea, things of that nature.

Also, in retrospect, would you have started your low dosage and kept it that way one WEEK instead of one month before bumping it up? Their bodies do need time to adjust, of course.

 

Michael

[AmberM]

I took the spiro because I have poly-cystic ovarian syndrome....... which means my hormones are off balance and I get weird things like irregular menstrual cycles, acne, infertility, etc......I took spiro for about 6 yrs with no problems other than decrease in blood pressure off and on. But again, the dose I was taking was much, much larger than a child would be taking. I stopped taking the drug because I wanted to have a baby and it's not safe to take while pregnant. Birth defects have been reported in male children because of lowering of testosterone. But again, I was taking 500mgs. I don't want to freak you out.

 

In Dr. Jepson's book it mentions that the drug had no significant side effects with long term use. I guess the length of time using it would just depend on the recovery of the kid using it, I'm really not sure. The book is written for treating autism so it may be a little different than treating a kid with pandas.

 

This is what the book said about Dr. Bradstreet's patient,

"In a case report by Bradstreet et al., a 12-yr. old boy treated with spironolactone showed significant behavioral improvements,

including reduction in irritability, lethargy, hyperactivity, and inappropriate speech. There was a twenty-one month gain in

receptive language over a four week period after starting the medication."

[Fixit]

I took the spiro because I have poly-cystic ovarian syndrome....... which means my hormones are off balance and I get weird things like irregular menstrual cycles, acne, infertility, etc......I took spiro for about 6 yrs with no problems other than decrease in blood pressure off and on. But again, the dose I was taking was much, much larger than a child would be taking. I stopped taking the drug because I wanted to have a baby and it's not safe to take while pregnant. Birth defects have been reported in male children because of lowering of testosterone. But again, I was taking 500mgs. I don't want to freak you out.

 

In Dr. Jepson's book it mentions that the drug had no significant side effects with long term use. I guess the length of time using it would just depend on the recovery of the kid using it, I'm really not sure. The book is written for treating autism so it may be a little different than treating a kid with pandas.

 

This is what the book said about Dr. Bradstreet's patient,

"In a case report by Bradstreet et al., a 12-yr. old boy treated with spironolactone showed significant behavioral improvements,

including reduction in irritability, lethargy, hyperactivity, and inappropriate speech. There was a twenty-one month gain in

receptive language over a four week period after starting the medication."

 

so the birth defects were from the mother taking spiro while pregnant....not because the man took spiro at some point in his life???/

 

how are you doing now with the cysts?? preganancys could have changed your make-up also i guess??

[Fixit]

i've been trying to read up on this and i've read about male breast enlargement

 

i see a death or 2 reported,,,but they may have had other conditions...not sure....

 

lupus..and your usual list...

 

i dont see anything about" immune modulating benefits" or anti inflammatory effects???