Medical Mystery Is Killing My Friend's Son. Doctor's Have No Answers!

Last year our neighbors son who was 12 got sick (flue like symptoms) he was out of school for a few weeks ..Dr said flue etc ....he could not eat so he got real weak and got sicker for two more weeks .....he never really recovered but was getting somewhat better ...then a few months later he was down again ..only this time he fainted everytime he stood up ...he lost the use of his legs(he could not stand on them or move them) .....he almost became a vegetable bodily ......and slept almost all of the time .
They took him to every Dr imaginable ...did every test imaginable .(found nothing ) .......eventually they took him to Childrens ..and determined it was a virus that embedded itself in his brain and layed dorment until it flared up again only this time made its way throughout his entire body ....
It took months and months (at least 8 months) for it to work itself out and leave him for good ...
He did get better after it almost killed him ...
Now you would never know that it ever happened to him .........

Have they checked for Giardia? Cant spell that. That can lead to Gillian Barre.
I had Gillian Barre syndrome. I had diarrhea before the onset.
Gillian Barre comes from some thing else. Flu shot, mono, giardia, etc.
It is even possible a mold infection could trigger it. It is not fun. I was in intensive care for three months. I relapsed a year later. I sure hope they get to the bottom of it.

May I suggest another competing or complimentary possibility? Especially because they live on a farm, there is a possibility they inhaled some kind of powdered animal poo.

My husband was exposed to powdered rat poo, which he inhaled and got caught into his lungs. We were lucky in that it was a one time exposure. however, for about 4 months he was incapacitated. During the day he could not breathe. He had 2 dozen+ cough fits per day where he would completely lose the ability to breathe on his own. The physical and emotional toll were devastating, and it took 7 doctors before we got a diagnosis.

I have no idea if this is what happened, but exposure to animal poop is apparently virtually undiagnosable, yet can cause some pretty sever reactions.

I know this is just an internet forum, but if there is anything in the world I can do, PLEASE let me know.

Alright, here is what I know. The neurology tests are incomplete. MRI of brain was neg. Not Guillain Barre, he had some reflexes. This was as of Thur. night.
Yesterday, he went for EMG, they were unable to finish, due to excruciating pain it was causing.

So late last night I get the word that they couldn't finish the tests because it was too painful!! O.K. I was thinking "what?" Well this doesn't make sense. I asked my friend did the doctors decide this? She said yes. Becoming increasingly frustrated I thought to myself, now Coleman sounds like my son. Kind of laughed it off and forgot it.

I was laying in bed when EVERYTHING came together for me. You see my son, is autistic! There is a pattern. Coleman is exhibiting signs of an autistic child: Violent outburst, repeating him self, but mainly the way he is processing external stimuli: hearing, stating "voices sound muffled" touch: is causing him physical pain,This is the very reason he was not able to complete the EMG!! Pain is being magnified x10. This is also how my son was when first diagnosed, only he didn't feel pain at all. Vision he can read words but no longer has the quick recall of their meaning Has hard time comprehending what he has read. Over stimulation to the point he needs to isolate for a while. Smell: Extremely sensitive to smells All of these point to Sensory Integration Disorder, meaning the way info is processed is completely upside down and backwards. This disorder is the backbone of autism. And then Coleman's own words"It's like the world is going on around me and I'm not a part of it." He made that statement three weeks ago.
>
> I am getting to the point right now. I discovered that a toxic > exposure can induce an autistic like state, that can be reversed.
>
> A little about autism (also called leaky gut syndrome) all of his > stomach aliments fit. Too complicated for me to explain here, just > google 'leaky gut syndrome'.
> Here is what happened:I will backtrack a little: Coleman has history of asthma, he also had bronchitis when he was exposed to toxic mold. Now keep in mind no one was aware the mold exposure was a big deal they didn't even think about it being the culprit. He goes to Dr. is placed on antibiotics and then a steroid. He gets worse they do more pulmonary meds and then another round of steroids. Well the steroids throws his body into an immune nightmare!! His immune system now attacks his CNS causing the process of demyelination (the tearing away of the protective covering of spinal cord and brain) to begin. Hence, you now have neuropsychological symptoms Autistic state and paralysis And the presence of some form of mycotoxin that is affecting lung and acting on CNS as well. The labs are showing false negatives as Amniodarone stated, because the toxin has not been identified and isolated yet.

So now the Dr.'s have to determine is the autistic state coming from immune over-response or mycotoxin or both. Are the neurological symptoms coming from the immune response or toxin or both.
Here is the great news both the autism and demyelination can be reversed once the toxin is removed from the body.

Coleman has apt. with Infectious Disease specialist Monday, and the wonderful Mold Specialist from John's Hopkins Tuesday. She will discuss autistic state, demyelination, and toxin with both, and hopefully will get diagnosis soon.

As of Sat. afternoon, Coleman's spirits are high, he was calm, he cannot move his legs at all and has very little movement in upper body.

I will let you know more when I do.

Thank you again everyone for wracking your brains and helping!







[edit on 15-2-2009 by paxnatus]

reply to post by paxnatus


Has anyone considered Cryptococcus neoformans infection?

Re demyelination, myelination is a dopamine dependent process. Aspergillus niger (black mould) can induce transformation of dopamine to norlaudanosoline. As I understand it, presence of this compound would both inhibit myelination and induce feelings of derealisation/depersonalisation.

Unfortunately, forage crops are susceptible to colonisation by mycotoxins, so: given the scenario you describe then rapid, accurate diagnosis is essential.



[edit on Thu, Feb 19th 2009 by Djarums]

Your story is hearbreaking.

From past esperience, let me just say, you might want to check out The N.I.H. National Institutes of Health in Bethesda Md.
This is a fantastic research hospital where people come from all over the world, a place of...Last Resort.

Call them. Explain what's happening. You have nothing to lose but a phone call if they're not receptive...but I believe they will be.

The N.I H. has a large web site..National Institutes of Health.
www.nih.gov...
and see what they have to say. Sometimes you have to be "your own advocate"...and take matters into your own hands.
This is where a lot of your tax dollars go, and research and healing is their focus.

Blessings to you.

reply to post by wolfmother

Very good information, from that website. I just sent her the link so she can look it over.

Our hope is this mold specialist on Eastern Shore, MD. Coleman has apt. On Tues.

The info. You provided gives us an excellent next step and back up plan. I cannot thank you enough!


I'll take those blessings and pass them along.

Sincerely,
Pax

reply to post by paxnatus


I would still not rule out the possibility of a poisoning, in addition to the mold... if it were me I would have a through tox screen and heavy metals test done.

Originally posted by asmeone2
reply to post by paxnatus

 

I would still not rule out the possibility of a poisoning, in addition to the mold... if it were me I would have a through tox screen and heavy metals test done.

Amniodarone (who is a for-real ER doctor) and I (no medical experience) are leaning toward that theory, too. If this were so, organophosphate compounds could be the culprit (one of our anonymous posters suggested something similar.)

At least the lil' guy is stable for now, and there's some major consultations going on. I think the future is brightening.

Then comes the hard work of dealing with the medical bills.

I've been reading this thread since the beginning, and can't stop thinking about it. I have no suggestions different from what have already been offered here. Just know my thoughts and prayers are with this boy.

I have no experience in the medical field but would like to throw what i think it could be sorry if this was already mentioned i may of read over it, could it possibly be parasites combined with something else?

www.appliedozone.com...

Unfortunately, I have no news to report, they are in the with the Infectious Disease Specialist now. I probably won't hear from her until after 9:00pm or so. The waiting is so hard, please everyone pray they find out what is going on with Coleman. I totally agree they need to do a full tox screen including heavy metals.

Thank you, for hanging in there with me.

Pax

Keep us updated as you get news. And let the family know that there's a bunch of strangers (REALLY strange) rooting for them!

BTW, have screens been done on the entire family? Adults can survive stuff that will knock a kid out.

Originally posted by paxnatus

I was laying in bed when EVERYTHING came together for me...

I am getting to the point right now. I discovered that a toxic exposure can induce an autistic like state, that can be reversed.

A little about autism (also called leaky gut syndrome) all of his stomach aliments fit. Too complicated for me to explain here, just google 'leaky gut syndrome'.

He goes to Dr. is placed on antibiotics and then a steroid. He gets worse they do more pulmonary meds and then another round of steroids.

Well the steroids throws his body into an immune nightmare!!

Hence, you now have neuropsychological symptoms Autistic state and paralysis...

So now the Dr.'s have to determine is the autistic state coming from immune over-response or mycotoxin or both...

Hi Pax,

I've read all posts in this thread. I think you've made some very important connections in your above quote. In no way am I in professional healthcare (for the record) but from the start I still believe the problems have nothing to do with the outdoor leaves/farm and everything to do with the internal mold. His pre-existing asthma must have compounded issues with his initial mold exposure.

As you mentioned, his immune system was further exacerbated when steroids where introduced. I think the toxicity must have eventually invaded neurological functions.

I find it incredibly strange that everything to that effect came back negative. Although it's no secret I hold very little regard or respect for allopathic medicine system, I was fairly confident in their diagnosis processes. However, it may very well be the case that I misunderstood and that there are some inconclusive tests still outstanding.

In any event, I'm very disheartened at their initial effort to isolate mold as the cause and destroy it before it was able to advance. I also believe the neurological link and autistic similarities are real, and like you, believe a reversal could certainly be possible. I hope the initial toxic exposure is not still invading his body. If so, it could explain why the overall severity is getting worse.

Has the family considered any bacterial/pathogen/fungus killing treatments outside of Dr. recommended allopathic medicine??

Just got a text from his mom the news was not good. THE INFECTIOUS DISEASE DOCTOR WAS AT A COMPLETE LOSS!! WHAT THE HELL IS GOING ON? Sorry for all caps, that is me screaming at the top of my lungs!!
They have not EVEN screened him for heavy metals as "strangebrew" suggested. She said she will talk to Shoemaker about it!!

Someone HAS GOT TO HELP HIM PLEASE. He is DYING!!!!!

They are on there way to Eastern Shore Maryland about 3 hours away to see
Dr. Shoemaker the mold specialist!! Coleman was sedated. His condition continues to worsen He cannot move his lower body at all has very little movement in upper body. Just screams, not really able to express himself.

I just sent her the info. for National Institute for Health it is located in Bethesda, MD. I think if Shoemaker can't help then NIH is the next step.

I can't think of anything else I can do! My heart is breaking, they are losing him!



[edit on 16-2-2009 by paxnatus]

Originally posted by Byrd
Keep us updated as you get news. And let the family know that there's a bunch of strangers (REALLY strange) rooting for them!

BTW, have screens been done on the entire family? Adults can survive stuff that will knock a kid out.

I think your posts have been quite perceptive, caring and responsible on this case. Congrats.

I think it is excellent to suggest that the entire family be screened.

Prayers and hugs for all concerned.

I should have posted this earlier but couldn't think through the tears. This is part of an email I received from my friend:

"How about we covenant with each other that wherever we are tomorrow at noon. We stop and pray that this appointment will be a breakthrough event.  God already seems to be in it"

If I may be so bold to ask, maybe all of us could do this?

Wherever you are at 1200pmESTtomorrow take a minute and pray for Coleman. I believe in the power of prayer I also believe the more people that pray or think positively about an outcome then it can effect the outcome. If you are not into praying then send love and light and positive energy to this family at 1200pmEST. It will make a difference and certainly could not hurt

Much love and thanks,
Pax

[edit on 16-2-2009 by paxnatus]

Please keep us informed of his progress. If you can think of anything (symptoms, something strange that doesn't fit (i.e. rashes, alopecia, bruising, etc...)) please let us know. You mentioned something in the first or second post about the adults in the family having "flu-like" symptoms as well. This really leads me to believe that there is an environmental component here. Children often are affected much more strongly by toxins (molds, pesticides) than adults are. Can you tell us a bit more about the adult's symptoms?


Sorry, just trying to unravel the mystery here. My thoughts are with your friend's boy. How is the other child doing?

Originally posted by Amniodarone
You mentioned something in the first or second post about the adults in the family having "flu-like" symptoms as well. This really leads me to believe that there is an environmental component here. Children often are affected much more strongly by toxins (molds, pesticides) than adults are. Can you tell us a bit more about the adult's symptoms?

The other thing I've been thinking about from the first post is:

Mom is suspicious of the farm (and has been for the better part of a year) that the boys get symptomatic when they are there – allergy like symptoms – coughing, major eye swelling, to the point of closing in the AM, irritability, fatigue.

and

THESE DRY COUGH THROAT CLOSING EPISODES HAVE SENT US TO THE E.R. TWICE AND THE DOC GAVE US A PRESCRIPTION FOR STEROIDS THE THOUGHT WAS WE USE A SINGLE DOSE WHEN THE EPISODE HAPPENS AND WE STAY OUT OF E.R. WE HAVE REALIZED LATELY THAT WE HAVE BEEN DOING THIS AT LEAST ONCE A MONTH FOR AT LEAST 7-8 MONTHS.

Assuming it's an environmental toxin, these sentences suggest to me that it's something that has been present at the farm for many months, but also that its presence was much worse this fall than at other times in the spring. Wouldn't this be consistent with mold growth? Whereas I would think a pesticide would be less of a constant presence and (though I'm no farmer) probably most prevalent in the growing seasons?

paxnatus, I will be thinking of your friends tomorrow at noon. I hope the mold specialist is the turning point.

Regardless of what it is, why not try to knock it out. A few years ago I used oral injestion of Hydrogen Peroxide among other things to rid myself of a troublesome breathing illness, took me a few months.

I would oxygenate my body with this "Miracle Mineral Supplement", basically pool cleaner in small doses prepared with lemon juice to release the oxygen. It is called MMS, you can get it everywhere. $60 and you can treat the whole family.

What could it hurt, besides a few free radicals. Besides the jury is still out on free radicals. Personally do not take the Medicinal Hydrogen Peroxide unless you have no other option, like MMS.

And also I would bring the whole families PH balance up as high as you can, lots of oxygen and keep the PH high.

[edit on 17-2-2009 by SoulOrb]