My son has been VERY sick for a VERY long time. For years the drs believed he was a Behavoir misfit. He has been on 5 different behavoir drugs at one time and he is only 8 yrs old. This past Mother's Day My child got really sick. At first we thought it was a stomach virus, no biggy. Well, the next week he went to school, He did it again. NEARLY PASSED out! Sweating, not responsive, Not hot....etc... SICK! Well, he has not been the same since. He has had many test, MRI, CT scans, EEG, EKGs all normal. He has had repeated Leukemia testing, clear... and more. A few weeks ago the endocrinoloigst said this was the last resort test he would do before he would pass him off to someone else. The Cortisol/ATCH test. Well, the first time his cortisol was 1.7 LOW...they did not test his ATCH then. SO they sent him to a hospital and did the testing there. His cortisol was a 1.2 and his ATCH was a 177! They then Injected him with a synthentic ATCH, and his Cortisol went up to a 22.

For some reason, his body is trying to tell itself to make cortisol...since it has a HIGH ATCH...but, can't! IT is rejecting it. The drs are BAFFLED! The drs in the office got together and had a meeting of the minds to try to figure out what to do with my son... NOONE knows what to do!!!

Here is our problem, They can't find a hospital or LAB who will research this illness for my child! We have just taken him off all of his "happy pills" because his pychiatrist says since his isn't a "Bad" kid then he doesn't need them...THey didn't work anyway!

Anyone know who will look at my baby!? We have to get some HELP NOW! HE is a Monster...evil...sad... sweating...sick...tired...not eating...salt hungry...water drinking little critter! I just can't imagine not feeling well all the time! (Not to mention, he is on HOMEBOUND studies, a teacher comes to the house twice a week for 1.5 hrs) He is too sick to go to school!

Thanks in advance!

Kymberlye

You could try to contact the National Institutes of Health, since your son is young they may be interested.

I have found help from Dr Theodore Friedman in Los Angeles.

There are quite a few others throughout the states.

Where do you live?

Sorry to hear about your son, he is much to young for this...

Thanks, I will look into that one...Surely His Dr. Has already looked there, but you never know. We live in TN. Dr said that the specialist here do not work with this type of problem... Problem is...I, nor anyone else has heard of this, So, noone has worked with it. My child would be a first, it sounds like.

Thanks again!

Kymberlye

I have checked with someone more knowledgeable than I & we both think your son could have addisons. You need to take him to an endocrinologist quickly for redoing the ACTH test. Addisons can be life threatening if not treated.

Try having him drink a bouillon cube dissolved in hot water 2 or three times a day. Also Gatorade. This could help him feel a bit better until he can get the help he needs.

As already mentioned Dr Friedman is a good doctor & can be contacted easier than most.

You could try Dr Blevins at Vanderbilt.

Thanks to both of you! He had his ATCH and cortisol tested again on Monday. They took 6 vials of blood, that day! They plan on testing his chromosomes for other things, as well...what? I am unsure of...We have not gotten the test results back from Mondays' ATCH or cortisol...I will be calling first thing Wednesday. My son does see an Endocrinologist...the best in the City...but, they are very PUZZLED at the Numbers... I will update you on the numbers when I find out.

Thanks for the names!!

Kymberlye

We got a call from my Son's Endocrynologist on Friday evening. He said, that his cortisol level was fine and so was his ATCH! The dr. said he didn't know what to do now. With two test being a LOW Cortisol and a HIGH ATCH, and NOW this one... He believes that he is no longer needed!

I AM FLOORED! I don't know what to do! I don't want to give up! I know something is wrong with my child... But, what? His Phyciatrist took him off all of his Meds, so now we are dealing with a med-less child.... and a sick one at that! UGH.... anyone have ANY IDEAS??? The Endocr. Dr said it was psycological...WHAT?!?!! the Psyc... said...it wasn't... He gets sick all the time stressed or not! HELP!!

Kymberlye

All I can suggest is to check out one of the drs we mentioned.

The endos are always blaming things on mental issues. You have to learn to ignore them and listen to your gut. I have found that the great majority of endos only know diabetes and a small amount of thyroid. They are clueless with anything outside of these issues. I had obvious tell tale things going on that were ignored for almost 3 years. Because of ignorance.

If I had to do it all over again I would not have tried to save money by going locally, and I would have gone to see Dr Friedman(or someone else with a clue) immediately.

If you believe something is wrong, do not give up and do not let these other people tell you otherwise.

Please keep us posted!

This is interesting. I like the water and gatorade advice. In my body I focus on lowering Cortisol levels...stress is no good for my MD. It's not in your kids head, that's just another way of saying I don't know. Cortisol is vital for behavior. Without it in a sense you don't feel and you don't aviod trouble.
Things to think about (family history): PTSD, depression, anxiety, mood disorder, ocds, any mental disorder, anyone in war?, horrible family life, basically extreme life stress. Maybe this relates to the question, why? When ever there is a medical problem that isn't well known or successfully treated you need to think. I'm very successful with people with all kinds of problems, getting them natural help and getting to the source of the problems. Theres usually a basic answer to complex problems.

I would keep going to doctors and I would also consider health. If you find theres nothing life threating then you can start working toward an answer even if one doesnt exsist yet. 8 years old is young for my normal recomendations of things that would make sense in this situation. You usually don't give a kid fat soluable vitamins and if you do you have to watch amounts.

I'll let you know if I come up with anything, good luck
Mike

Why isn't your son taking hydrocortisol to replace what he is missing?

Now, we have a kink in the loop!

Good and bad. THe last blood test came back NORMAL! His Cortisol was 16.7 ATCH 28 and Sugar 89. This was taken around 8am. The endocrinologist call and said since they all came back normal, he sees no need to see my child any more! That's it! UGH... 2 bad test, one good one... Therefore, he is done with my son.

I call the pediatrian, she suggest we keep him off his Psy drugs for 2 weeks. She was wondering if that had an effect on his hormonal levels. We may retest then. He seems to be doing a little better without the drugs. But, still gets sick quite a bit, just not as intense.

I guess we will see in a few weeks what will come of this!

Kymberlye

WELL, LAST night I FOUND out what it was! I have been surfing through THIS Medical forum for a few weeks now, chatting and reading, not really sure if Sam really had ADDISONS or not...well, last night it really clicked!!! He DOES have ADDISONS Syndrome. The reason why his tests came back normal a few weeks ago, is because he had eated LOTS of salty foods the night before! Which brought his cortisol levels back up! Sam had been self-medicating all summer trying to feel better by eating salty foods and drinking water...and we didn't even know about it!!!! He would eat the whole bag of chips and we wouldn't know it until they were GONE! He would only eat french fries for meals... (I just assumed he didn't feel good, So I didn't make him eat anything else..etc...) I talked to the Pediatrian and she Agrees with the diagnosis! WHOoohOOoooo! We are going to watch him for a while...because it looks like he may be in remission, of sorts... all is going well at the moment... hopefully in a few weeks, after fall break we will be able to send him to school! ON a trial basis, of course!!! If he starts getting sick again, we will go in for more test so he can get started on meds right away!!!


I just want to thank you all for Having AWESOME boards and for being sooooo Supportive in all of this! IF it wasn't for you, I would probably have never figured this out! Thanks!

Kymberlye