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

Originally posted by americandingbat

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.

Excellent post. My thoughts are similiar. However, we don't know what the spraying times of the pesticides are (or even organophosphate fertilizers). We also don't know if the harvest in the fall re-released the trapped pesticides from the soil back into the air. I still think that either mold or pesticides are likely to blame.... especially since all the family members suffered some sort of aliment. I just don't think that we know quite enough about the situation. Our thoughts are with this young boy and his family. I think that this is all we can do for him and his family at the moment.

Pax, I have just finished reading all 5 pages here and I am slowly dying with this family. This is heartbreaking.

I assumed you shared with her your thoughts about the neuro problems associated with autism? This family should be on that show Mystery Diagnosis. I am so sorry this is happening to this boy, he must be terrified.
While I cannot offer any more suggestions then what has already been posted I do agree with the consensus that this is toxic mold poisoning.

All I can offer is the prayers and white light surrounding this child.

Originally posted by paxnatus As for the silver I take colloidal silver myself, thank you, I had not even thought about this or the yogurt. Will pass that along.

My first thoughts ran to fungal infection as well, but as posters have said, this also could be a combination of factors at work.

I only interject to comment on the colloidal silver, and the fact that it may bring on side effects if not properly prepared. The following article would be of great help to any consideration of its use:
www.cancertutor.com...
Oh, and good point about the yogurt!

I hope you resolve this mystery in time!

Originally posted by Amniodarone
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?

Thank you so much, for your thoughts and medical insight into this mystery.

Just to recap a little:

When they were up at the farm in November, all were sleeping in the same room. Mom came down with respiratory illness as well, mainly coughing, and was later ( maybe a couple of days ) treated with a z-pak, for what they believed to be bronchitis. She recovered immediately no residual effects.

Dad complained of his eyes burning but never felt fatigued or coughed.

The youngest boy was having an allergic reaction as well. Symptoms were severe cough, swollen and red eyes. He was not treated with steroids but did take a course of antibiotics and cough hung on and off for 3 months

Both boys experienced stomach issues, mainly abdominal pain(burning)
nausea, vomiting no diarrhea. Doctor prescribed prevacid and prilosec.
Neither had a fever.

The boys were both checked for TB and pertussis. The results were
negative. CXR was clear.

The youngest has made a full recovery.

This is all I know. If there is anything else I can answer, let me know.

Thank you so much,
Pax

PLEASE PRAY FOR COLEMAN RIGHT NOW!! HE IS SEEING TOXIC SPECIALIST!!

My prayers will be with him, and his entire family. I also feel this could be toxic mold with possible pesticides mixed in. And will continue to pray for their situation, and his. To be very beneficial, natural yogurt must be taken in large amounts, per person, each day, and when I had a very raw chest for ages, and the doctor didn't prescribe antibiotics, I started eating the large yogurt container a day, and started to recover shortly after. Also, I cured my son's horrible colic that kept him crying/screaming and in my arms between 4-8 pm each night for 2 months with the very first spoonful of natural yogurt I gave him. My doctor was very curious about the results as she had been feeling sad herself about his condition, and was supportive of my method which worked overnight.

But buying yogurt is expensive, and its easy to make. The recipes are online. They just take a starter package or a natural yogurt from the health food store, milk (possibly some extra skim milk powder or tapioca pudding to thicken it if its not going to be a drink). There are many recipes online for this, and one of the nicest is a small camping cooler on top of the fridge as it releases just the right amount of heat.

love and light

Hello everyone,

Word came to me at 2:00am regarding Coleman's apt. With
toxicologist. It was mixed so I will share the good news first.

The appointment went fairly well. The doctor brought many things into light, mom didn't
elaborate. They were able to finally get all the labs they needed to help identify what is going on.

Apparently, the level of fear, anxiety and violence Coleman was exhibiting, forced them to cut the appointment short before the full exam could be completed. However, the doctor is 90-95% sure they are dealing with a mycotoxin he inhaled from black mold. The blood results will be needed to determine exactly which strand.
He is treating him with a cholesterol medication
called Cholestyrine commonly known as Questran. This drug binds the toxin while in the large intestine and then is passed from the body in the waste.

Since the mycotoxin is a chronic neurotoxin it moves through his body and is simply reabsorbed into the blood stream. The process keeps repeating. In other words the body is unable to breakdown the toxin, which results in slow lethal poisoning.

The Questran is taken with a thyroid medication, and vitamin C. He can have NO dairy, No grains for 10 days and No sugar.

Now here's the crux. Questran is very hard on the gut! Coleman is constantly nauseous
and vomits continuously. When I first posted this thread he had lost approx. 12 lbs. that number is at 25 lbs.as of yesterday. Somehow, they have got to keep this in his system. The flip side is, if it works, we will know in 2-3 days. I will keep you updated.

Thank you so much, for your prayers, compassion and overwhelming support for this precious child. The parents are an emotional wreck, as one can imagine but at least they have a start. As she said to me today, let's prepare for the worst and hope for the best.

Kindly,
Pax

Hello everyone,

Word came to me at 2:00am regarding Coleman's apt. With
toxicologist. It was mixed so I will share the good news first.

The appointment went fairly well. The doctor brought many things into light, mom didn't
elaborate. They were able to finally get all the labs they needed to help identify what is going on.

Apparently, the level of fear, anxiety and violence Coleman was exhibiting, forced them to cut the appointment short before the full exam could be completed. However, the doctor is 90-95% sure they are dealing with a mycotoxin he inhaled from black mold. The blood results will be needed to determine exactly which strand.
He is treating him with a cholesterol medication
called Cholestyrine commonly known as Questran. This drug binds the toxin while in the large intestine and then is passed from the body in the waste.

Since the mycotoxin is a chronic neurotoxin it moves through his body and is simply reabsorbed into the blood stream. The process keeps repeating. In other words the body is unable to breakdown the toxin, which results in slow lethal poisoning.

The Questran is taken with a thyroid medication, and vitamin C. He can have NO dairy, No grains for 10 days and No sugar.

Now here's the crux. Questran is very hard on the gut! Coleman is constantly nauseous
and vomits continuously. When I first posted this thread he had lost approx. 12 lbs. that number is at 25 lbs.as of yesterday. Somehow, they have got to keep this in his system. The flip side is, if it works, we will know in 2-3 days. I will keep you updated.

Thank you so much, for your prayers, compassion and overwhelming support for this precious child. The parents are an emotional wreck, as one can imagine but at least they have a start. As she said to me today, let's prepare for the worst and hope for the best.

Kindly,
Pax

Let me check PubMed.

That's good news that there's a diagnosis, though. Major WHEW!

I'm so glad that there is a diagnosis. They could probably control the nausea and medication in a hospital. I was going to say, if things were still up in the air, my boyfriend's grandfather routinely gets treatment/consults at the NIH and they have not only a great reputation but a really great staff and super facilities. So if anything else happens, it's really worth it to check that out, especially if it isn't super far (6 hours from where my bf's family is, not too sure how long from you guys).

Mold is scary, scary stuff. I'm so glad that he is doing better.

Make the family aware of ALL the side effects (even if they're visiting him in the hospital they need to be alert for these signs and yell bloody murder if they appear) And alert them to the danger of dehydration:
www.rxlist.com...

Since questran is used for gallbladder problems, a typical gallbladder diet Crohn's disease diet may help.

Have them check weight gain (protein) shakes... served cold, he may be able to keep those down -- but make sure they're something on the dietician's list. I would be extremely cautious about adding anything other than that and a bland diet.

This sounds like a bad case of viral toxic mold. Firstly, no one should ever sleep in a cold damp dark basement! You already stated that mold was found all over everything! There isn't just mold in basements, there is asbestos dust falling constantly from under the floors/ceilings, not to mention possible radon gasses and other chemical fumes. You need to make basement off limits! Secondly I would temporarily remove all pets from the home. Pet dander can contribute to your overall sickness. Vacuum the carpet wash all the bedding and clothing. Also, cut out any caffeine drinks and acidic meals, it can also contribute to acidic stomachs/ acid reflux which can also inflame the esophagus making it even harder to breath. Talk to doctor about the possible need for a steroid inhaler. Maybe try out some zinc vitamins it is known to promote a faster recovery of a sickness. Also, could try some ORO tea from herbalist shop. Take vitamin C daily. Stick with the doctors recommendations as well. Good luck hope you/yours gets well.

Thank God paxnatus is ignoring these idiots talking about MMS, hydrogen peroxide, and yogurt to cure something as severe as this.. It's like people here are trying to either 1) make things worse or 2) look foolish. It makes me a little sick to see such blatant violations of medical ethics.

Pax, thank goodness they have an answer. Is Coleman in the hospital currently to be observed or did they send him home?

Please keep us in the loop, I waited and kept checking this thread all day yesterday to hear word. I think many of us here are emotionally invested in this boy's recovery and cure.

Thanks

Originally posted by DDay
Pax, thank goodness they have an answer. Is Coleman in the hospital currently to be observed or did they send him home?

Please keep us in the loop, I waited and kept checking this thread all day yesterday to hear word. I think many of us here are emotionally invested in this boy's recovery and cure.

Thanks

Your post, moved me to tears! It is because of people like you and many others who have given their time to care for a total stranger, that I will always cherish the sense of community on ATS! God bless all of you. Your kindness is such a rare commodity! To say thank you, just doesn't seem like enough.

I wish they would have left him in hospital, to be monitored. But even though I love him like my own, he is not. The doctor and his parents felt that he could be carefully monitored at home. Because of Coleman's bizarre behavior one of extreme paranoia, they felt it best if he was in a familiar environment. But they need to be VERY CAUTIOUS!! I check on him several times a day!

Pax

Originally posted by Johnmike
Thank God paxnatus is ignoring these idiots talking about MMS, hydrogen peroxide, and yogurt to cure something as severe as this..

It's like people here are trying to either 1) make things worse or 2) look foolish. It makes me a little sick to see such blatant violations of medical ethics.

I am happy for you all, paxnatus, that there is finally a diagnosis...now the work begins!

And I agree with Johnmike that one needs to be very careful when consideriing complimentary therapies. But...if you are on a course of antibiotics, you can go through a great deal of grief due to the beneficial flora in your gut being wiped out as well. A cup of yogurt (with the live bacillus) achieves a recovery that borders on miraculous. And that ain't no hooey.

Originally posted by JohnnyCanuck
But...if you are on a course of antibiotics, you can go through a great deal of grief due to the beneficial flora in your gut being wiped out as well. A cup of yogurt (with the live bacillus) achieves a recovery that borders on miraculous. And that ain't no hooey.

Except... if you read the patient information sheet on the drug they are giving him, you will find that milk-based products in combination with the drugs create a very severe vomiting reaction. This is a child, who has already lost at least 1/6th of their body weigh (or more) due to vomiting.

A cup of yogurt given while he's on the meds could kill him.

Originally posted by Byrd

Originally posted by JohnnyCanuck
But...if you are on a course of antibiotics, you can go through a great deal of grief due to the beneficial flora in your gut being wiped out as well. A cup of yogurt (with the live bacillus) achieves a recovery that borders on miraculous. And that ain't no hooey.

Except... if you read the patient information sheet on the drug they are giving him, you will find that milk-based products in combination with the drugs create a very severe vomiting reaction. This is a child, who has already lost at least 1/6th of their body weigh (or more) due to vomiting.

A cup of yogurt given while he's on the meds could kill him.

I would stay away from the milk based yogurt - even the soy based yogurt has too much sugar in it - get some very strong probiotics -
Dr. Udo's super 8 from whole foods -

Nutritional links:

The product, "Ensure" has been recommended by a number of people (personal recommendations) as a nutritional drink. 8 oz, 350 calories, often used in patients who aren't eating well. Avoid the ones with milk in them:
ensure.com...

The biggest issue with food is "finding something that the family likes" which means being a hawk on reading labels and identifying things under aliases. The best option is if the mom (and dad) can make "from scratch"... I'd recommend using as many organic products as possible. I'm normally not a fanatic about organic (I buy organic when I can) unless someone's very ill.

There's apparently no book of recipes for Chrohn's disease (or IBS -- syndromes that this drug recommended for) so I'm posting some recipe links to help give his mom some ideas:
www.livingwithcrohnsdisease.com...

A few more:
ibdcrohns.about.com...

More (bunch of recipes here and meal suggestions)
www.helpforibs.com...

And this:
www.helpforibs.com...

As always, she should check these recipes against the advice she was given and make sure the recipes fit with the guidelines she was given and nothing in there is a "no-no" (like sugar.)

Poor things... I'm sure they're exhausted by now. Hopefully other family members can step in and do a little grocery shopping or run some errands (or wash loads of clothes with "organic" and "hypoallergenic" soaps) or watch the other kid for a bit so the parents can get a nap (and take care of bills and other stupid things that show up in the middle of a crisis.)

As always, the schools should be kept "in the loop". The other boy may have some problems (fear, distraction, acting out) and the teachers can help him if they know there's a huge medical crisis at home. And they might give him a break on the homework, too.

Originally posted by Byrd

Originally posted by JohnnyCanuck
But...if you are on a course of antibiotics, you can go through a great deal of grief due to the beneficial flora in your gut being wiped out as well. A cup of yogurt (with the live bacillus) achieves a recovery that borders on miraculous. And that ain't no hooey.

A cup of yogurt given while he's on the meds could kill him.

Good to know that. But I was addressing the general use of antibiotics and the fact that yogurt is a quick easy fix. It was not tossed in as a cancer cure, and I didn't want it dismissed as such.