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

[AmberM]

Talk about winning the lotto....... 2 kids doing better!!!!! That's fantastic news. Our DAN! e-mailed me back and wants to wait until we get the mri, and scope done before we start anything new. We get the MRI done tomorrow.

-Amber

[coco]

Stephanie, after reading the research paper talking about androgren, etc., did you have to do any blood tests to determine if there was a deficiency, or did he just prescribe it based on symptoms? Tx.

[dcmom]

Enjoy your kiddos! And do something for yourself

[Stephanie2]

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

 

I keep hearing that it lowers testosterone, but in the paper that I linked my original post to, it says that it does not have a significant effect on testosterone. Maybe they use a low enough dose that it doesn't lower it. I don't know. I do know that some kids' testosterone tests high and that is one of the advantages of spiro for them.

 

Stephanie

[Stephanie2]

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?

I'm no doctor, but I haven't heard anywhere that it acts like or is a steroid. I do know that it "modulates" the immune system and lowers inflammation, but I don't think it is considered an "immunosuppressant" like steroids.

 

Stephanie

[Stephanie2]

That's a good question. I am assuming for the rest of their lives!! LOL! No, really I assume until they "grow out of" pandas. I haven't asked the doctor that yet.

 

Stephanie

 

Stephanie:

 

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

 

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

 

Elizabeth

[Stephanie2]

The psych said the dermatologist would prescrive it? Well, I have heard that it is used for women who have acne due to hormone imbalances. So, that's the only reason I can think of a derm prescribing it.

 

Which DAN prescribed it years ago? Why didn't you try it back then? Actually, I did not try it for 5 months after it was first prescribed b/c I didn't like the idea of constipation, but then one becomes desperate, ya know? Kicking myself for waiting 5 months, but at least I came around to it...

 

Stephanie

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

[Stephanie2]

Actually he does a test which looks for elevated neopterin and biopterin (urine test done by a private lab in france). If one or both are elevated (can't remember specifics) then that means that there is a lot of brain inflammation. That is how he decides to prescribe spiro in most cases (I think, don't mean to put words in his mouth, especially since he reads this forum from time to time!!). I know that based on my son's very elevated neopterin and also his history of pandas, he told me that spironolactone has my son's name written all over it. He did not care about testosterone or androgen levels, that is another issue all together. I think they also use it solely for the purpose of decreasing testosterone in kids who's levels are elevated and are experiencing aggression and stuff.

 

I will say this, I do think that maybe my son's testosterone may have been a little elevated before b/c he was CONSTANTLY playing with himself in the bathroom, in his bedroom, etc. Remember, he's 5! He stopped doing that when I added spiro.

 

Stephanie

 

 

Stephanie, after reading the research paper talking about androgren, etc., did you have to do any blood tests to determine if there was a deficiency, or did he just prescribe it based on symptoms? Tx.

[Kayanne]

I'm really happy you are seeing such great results...I'm hoping that it sticks!

[Stephanie2]

Enjoy your kiddos! And do something for yourself

 

I'm trying...I don't know what to do first cuz I have in the back of my mind that things could go backwards at any moment! I think I should just take some time to relax, but then I think I should take time to catch up on the house, etc. Trying to do a little of both!

 

Thanks!!

Stephanie

[Stephanie2]

Why did he want you to get the MRI done again? Let us know how it goes. Don't forget that my 2 yo has Chiari, just in case that comes up. His Chiari symptoms are in remission right now, so I am blessed with that. No sign of the need for surgery any time soon. Praying that he will completely grow out of it in time.

 

I have never had my 5 yo get an MRI and sometimes I want to b/c he has such sensory issues that Chiari can cause. But then I think, what would I do? I would not go out and have surgery done just to get rid of some mild/moderate sensory issues (well, maybe I would :-) ).

 

By the way, when you talk to him again about spiro, if you get a chance ask him what he thinks about LDN (low dose naltrexone). I know some DANs prefer that over spiro and I don't know why. Would love to hear what he has to say about it.

 

Best of luck!

Stephanie

Talk about winning the lotto....... 2 kids doing better!!!!! That's fantastic news. Our DAN! e-mailed me back and wants to wait until we get the mri, and scope done before we start anything new. We get the MRI done tomorrow.

-Amber

[fuelforall]

Ok, here we go. Got the scrip, gonna try it and see how it goes.

Wish us luck, folks. We'll let you know.

 

Michael

[Stephanie2]

Ok, here we go. Got the scrip, gonna try it and see how it goes.

Wish us luck, folks. We'll let you know.

 

Michael

 

Are you trying it on both boys? What dose? Good luck! PM me after a few days and let me know how it is going!

Stephanie

[AmberM]

Hi Stephanie,

we had the MRI done today.... it went so much smoother than I ever expected. we were getting the MRI to rule out Chiari. Of course, the dr. at the hospital didn't go over the results at all, so now I'm anxiously waiting to talk to Dr. Jerry. We have an appt on friday with him. I didn't realize chiari caused sensory issues. Audrey's sensory seeking is so bad it pretty much takes over her day. We'll see how it goes.

 

We also had a KUB done and Audrey is completely full of poop. Her problem isn't constipation, it's with holding. Her anxiety is so bad, she won't let it come out. SO no matter how many laxatives I add, she's able to somehow hold it in. We have an appt with a g.i. specialist next thursday. We're at that point that we may need to go see krigsman. So the spiro might be a bad idea right now. I need to get this kid pooping regularly. I never knew I would become so obsessed with poop!

 

I will definitely ask about the spiro vs. ldn when I go in. He has a tendency to cut me off if I stray from the discussion so I don't know how successful I'll be with that one. I can talk to Dr. Woeller about it though. He was our previous dan! and we still communicate via web. He is very into both of the drugs.

-Amber

[Stephanie2]

I sympathize with you on the poop. My 5 yo used to withhold as well. He did not potty train until he was 4 yrs. and 10 months old!! I was so happy that he was out of pull-ups by the age of 5! He had severe constipation, at times I had to give him fleet enemas...ugh! Then I had my 2 yo and at 4 months old he started with constipation, then diarrhea, then constipation, and so on. Still trying to get him regulated!

 

When our DAN doc first prescribed spiro I did not give it to my kids for that reason, too. It took my 5 months to fill the rx! Anyway, yes you need to find out what is going on, but one thing that just entered my mind is that maybe if the spiro helps with her pandas/anxiety, she may stop withholding...? You never know!

 

Let me know the results when you find out. Oh, my chiari son (2 yo) does not have the sensory seeking issue. His is more of a low muscle tone. Also, he used to be very sensitive to bright light which is common for chiari pts. My 5 yo is a big sensory seeker. Gets him in trouble at school b/c he can't keep his hands to himself...Drives me nuts!

 

Stephanie

Hi Stephanie,

we had the MRI done today.... it went so much smoother than I ever expected. we were getting the MRI to rule out Chiari. Of course, the dr. at the hospital didn't go over the results at all, so now I'm anxiously waiting to talk to Dr. Jerry. We have an appt on friday with him. I didn't realize chiari caused sensory issues. Audrey's sensory seeking is so bad it pretty much takes over her day. We'll see how it goes.

 

We also had a KUB done and Audrey is completely full of poop. Her problem isn't constipation, it's with holding. Her anxiety is so bad, she won't let it come out. SO no matter how many laxatives I add, she's able to somehow hold it in. We have an appt with a g.i. specialist next thursday. We're at that point that we may need to go see krigsman. So the spiro might be a bad idea right now. I need to get this kid pooping regularly. I never knew I would become so obsessed with poop!

 

I will definitely ask about the spiro vs. ldn when I go in. He has a tendency to cut me off if I stray from the discussion so I don't know how successful I'll be with that one. I can talk to Dr. Woeller about it though. He was our previous dan! and we still communicate via web. He is very into both of the drugs.

-Amber