adrenal workups

[dut]

We've just got adrenal work-ups back for both our dd and ds and I was wondering if others had done this testing and what tresults you might be seeing?

 

I also seem to remember someone saying somewhere that the disruptiom from PANDAS may not be limited to the basal ganglia but may also include the thalamus (thinking thalamus-pituitary-adreanl pathway).

 

Thank you...

[amy s]

My dd had an adrenal work up a few years ago (during a horrible exacerbation). Nothing was out of ordinary.

[pathfinder]

We are going to go after this issue as well for my ds has consistantly high eosinophil count with intense salty food craving. ( popcorns, chips, salted nuts)

Does yours have this issues as well?

[dut]

Hi - yeh, we got abnormals for both.

 

DD all test points (4 in 24h) came back depressed for cortisol. She had normal DHEA, depressed 17 OH progesterone and extremely low SIgA, which we knew about.

 

DS came back normal levels for cortisol but his pattern was messed up - low in am and high pm.. probably why we get such awful sleep. He also came back super, super high for DHEA... of the scale, if I read it right. ( A google search came up with - boys with very high levels of DHEA being much more prone to ADHD, ODD , hurting kitterns etc - joy ) Could explain the aggression we see sometimes.. he is also the most "boy" toddler I have ever met.. so boy from a very young age.. could it be the DHEA? Excesses in women cause virilism and hirsutism. He also had depressed 17 OH progesterone and super low SIgA. This aggression does correlate with PANDAS flares, so I'm wondering if adrenal tests would look different out of exacerbation.

 

Both children were in exacerbation when we did the test. Both have had 1, 5 day, steroid burst 6 months or so prior. I'm wondering if this mucked things up but all the literature I could find say adrenals bounce back within a few days of bursts that short.

 

I can't decide if all this testing is helpful... or just leaves me with more questions and less sure of our path?

 

So, any ideas welcome

[dut]

Sorry, I meant to say that we tested adrenals 'cos we had such depressed SIgA, which can be as a result of adrenal issues - cortisol/DHEA ratio out of sync.

[pathfinder]

I only just began to make connections with adrenal insufficiency tendency with my son. I am going to test my son with ACTH stimulation test and /or salivary cortisol test. I will of course look into the tests you have done for your son as well. I always suspected that there might be some hormonal imbalance with my son when he was much younger and I took him to endo doctor but came up with nothing at the time. ( It was more than 8 years ago when PANDAS was unheard of and all these tests were not available) Some parents found Spironolactone useful for very male boy tendency. (If you want I will try to find more infor on this med and email you why this med is being used ---something to do with Dr. Wakerfield(? wrong spelling?)who explained why boys have more AUtism than girls and got into so much media circus. ( I happen to be one of his believer) Anyway, my son is in opposite end of Spironolactone needer as he is in constant craving for salty things (as strange as it may sound he really does crave salt especially at PM) If this is all somehow connected, his treatment would be that of prednisone. Autism is just figure of speech here, I am not saying autism has anythinhg to do with what I am saying but adrenal study was done only with base on autism because pandas is still at infant stage as far as research goes as to Autism that cover very broad symptoms and has longer and deeper studies)

My son has done all kinds of blood tests as per his Ped doc a month ago and this doc has ordered IVIG (insurance approval pending as per a letter I received today) so there much be something not right about my son's tests result (I did not see them yet) otherwise IVIG would not have been ordered.

With or without IVIG path, I am going to go ahead with adrenal exhaustion path with my son.

[dut]

pathfinder - We did our test thru Diagnos-techs.. and they supposedly have a good, knowledgable MD there who our ped is talking to, to try and better understand what is going on.

 

I'm trying to work out wot came first.. gut assault of some sort leading to gut issues and consequent long term stress putting too much pressure on adrenals and autoimmune prediliction and thus PANDAS or was it crappy adrenals from birth (especially likely if you had a v stressful pregnancy - my hand shoots up in the air for that one.. guilty there) leading to depressed SIgA and gut issues and thus autoimmune lucky dip..

 

Sometimes, I wish we had just stuck to treating PANDAS and not bothered with finding out why (a little knowledge is a dangerous thing ) but I fear that even if we deal well with PANDAS we're just set up for more autoimmune issues in the future..

 

I'll PM you if I find out anything of interest from the MD at the lab or other good PANDAS/adrenal tidbits...

[Stephanie2]

I only just began to make connections with adrenal insufficiency tendency with my son. I am going to test my son with ACTH stimulation test and /or salivary cortisol test. I will of course look into the tests you have done for your son as well. I always suspected that there might be some hormonal imbalance with my son when he was much younger and I took him to endo doctor but came up with nothing at the time. ( It was more than 8 years ago when PANDAS was unheard of and all these tests were not available) Some parents found Spironolactone useful for very male boy tendency. (If you want I will try to find more infor on this med and email you why this med is being used ---something to do with Dr. Wakerfield(? wrong spelling?)who explained why boys have more AUtism than girls and got into so much media circus. ( I happen to be one of his believer) Anyway, my son is in opposite end of Spironolactone needer as he is in constant craving for salty things (as strange as it may sound he really does crave salt especially at PM) If this is all somehow connected, his treatment would be that of prednisone. Autism is just figure of speech here, I am not saying autism has anythinhg to do with what I am saying but adrenal study was done only with base on autism because pandas is still at infant stage as far as research goes as to Autism that cover very broad symptoms and has longer and deeper studies)

My son has done all kinds of blood tests as per his Ped doc a month ago and this doc has ordered IVIG (insurance approval pending as per a letter I received today) so there much be something not right about my son's tests result (I did not see them yet) otherwise IVIG would not have been ordered.

With or without IVIG path, I am going to go ahead with adrenal exhaustion path with my son.

 

Here is a paper our DAN practitioner wrote regarding the use of spironolactone in autism. He also uses it in kids who's inflammation markers come back elevated, including PANDAS kids. It is also immunomodulatory and I believe is an aldosterone antagonist (I have definitely seen much less "playing with himself" stuff since adding it on...now he only does that when he gets yeast). I believe that spironolactone has definitely raised our pandas baseline for both kids. One of our keepers...

 

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

[dut]

"playing with himself"!!

 

That is all my son does! I know fiddling (as he calls it) is normal for kids but it is constant with my son.. perhaps we'll look into the spironolactone (sp).

 

thanks.