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

You could ask his doctor about Culturel, taken during heavy courses of antibiotics to sustain natural bacteria and enzymes. I know when my grandpa was on Vancomyacin they put him on that. It may or may not have the same negative reaction that yogurt would.

reply to post by Byrd


I know we rarely share many of the same values and perspectives.

However, I just want to assert most forcefully on this thread that I've been very impressed and admired a great deal your

FAITHFUL OBJECTIVE, KNOWLEDGEABLE, TIMELY, PERSISTENT, CARING SERVICE

to this family.

It is a great model.
It is kind.
It is tenacious.
It is mature, professional and responsible.

And I, for one, am blessed and thrilled . . . . honored . . . to observe it.

Good on ya.

THANKS TONS for the example.

This is my third attempt at a post!! Had computer problems!

I couldn't agree more. But I feel most everyone has offered very helpful
suggestions and thought provoking insight. I will say, when you take the time to post the links, it saves me time in researching and allows me to copy and paste then send directly to Coleman's mom, this has been a huge help.

Thank you Byrd, for the link to the recipe's they will be come in handy.

Here is an update: Spoke with his mom on Thur. afternoon. They were struggling to keep medication in his system. She said he gags the minute something comes close to his mouth. We were looking at zofran or phenergan
(med to help with nausea) to check any interaction with detox regimen. Hopefully this will help. He still can't stand or walk, has very little movement in his upper extremities. Can't read or write. He is extremely paranoid and does not want to be around people at all.

I asked her about what toxicologist found. What she said next shook me to the core. Alright, get this. THE LUNG CT WAS NOT CLEAR!! He had a very high iron level !! So high that it could have only come from a condition called 'pulmonary hemosiderosis' bleeding in th lungs. In his case due to heavy exposure to mycotoxin. You CAN SEE THIS ON THE CAT SCAN!!
keep in mind, he saw 2 pulmonary specialist!!! Why and how was this missed? This explains his 60% lung capacity!!

Is this a case where doctors simply DID NOT give a damn?? I don't understand this!! What I need to know is this pulmonary condition going to leave lasting effects? How is the liver affected during hemosiderosis? Is this child in liver failure? MY GOD in heaven, if he is then he will die without a transplant!!

They have been in touch with Children's Hospital in Philadelphia. I believe this is where they are planning on taking him. I also have a very good friend who is a pilot for 'Angel Flight', These are pilots who have their own plane who volunteer their time and money to fly sick patients and their families all over the country for free to receive treatment. He has offered
his service to Coleman's family if needed. What a blessing!! One less thing for them to worry about. I know Byrd has inquired about medical cost'. Fortunately, they do have some money and very good health insurance. Our church with its individual members will be more than willing to give for their cause. We are ALL family there, so what touches one, touches
everyone.

Continue to pray for his recovery please!! He is nowhere 'out of the woods' yet. Thank you for all your support ATS! I am trying to reach my friend this afternoon, so I hope to have an update tonight.

kindly'
Pax

reply to post by paxnatus


PLEASE try to get another Histo test done, then. I still think that could explain a lot of his symptoms.

I'm pretty sure they are looking at a strand of 'stachybotrys'from black mold. He had all the symptoms except one. With 'histoplasmosis' you have a fever. He has never had a fever.

Mom e-mailed me at midnight last night, that he has been unable to tolerate the powdered Questran, so they switch to the pills. It takes longer to act is his system, but at least he is able to keep it down.

She mentioned that her youngest is tolerating the medication fine. I was not aware that he had been placed on it. She is not really talking to anyone these days, so our mode of communication is texting, and e-mail. I believe she is overwhelmed with the severity of the illness and feels they need time alone. Hopefully I will speak with her sometime today.

Coleman's emotional state is not good, and they asked for prayer in this area. I'm trying to find out when his next apt. Is with toxicologist and if she has noticed a difference in his physical well being. Maybe I'll have some answers later this afternoon. I hope so.

Thank you for remembering him and all the wonderful advice.

Pax
P.S. I will ask about histoplasmosis again and make sure they can rule that out.

[edit on 22-2-2009 by paxnatus]

reply to post by paxnatus


I am not a doctor but I know that histo can present differently, depending on what type of the body it attacks in, so he may not actually have a fever.

Also some people can have very low normal body tempetures--mine is almost 3 degrees lower than other people's for instance--so for indivuduals like us a normal body temperature is comparative to a fever or 101 or so. That's a long shot but worth mentioning.

Either way I have been thinking about him a lot and I hope he recoveres quickly!

[edit on 22-2-2009 by asmeone2]

Children's Hospital in Philly is one of, if not the, best in the country. I really hope that things don't get worse and that he will be able to tolerate the medication and will heal. But if it turns out that he needs to go to a facility like that, Children's is really highly recommended.

Sounds like the poor mom is in an Overload state.

I'm having a friend who worked in a medical lab stop by and eyeball the thread later... I hope she will have some good things to offer.

I am not a physician, so I only have two suggestions (one of which has mostly been done):

First, to find some music that Coleman finds soothing and see if music helps soothe him (audio books might be available ... check youtube for children's storytellers to see if there's some free stories that he might listen to that would help divert him.) This is more for the poor kid's personal comfort and diversion... perhaps help ease some of the pain and stress on him.

Second, create an "informational timeline." Make a chart. On it, give dates, what symptoms appear when, what the treatment was, what the results were. Do for both boys. Include any meds they were on originally. Star or highlight any concerns (like the ongoing stomach problems). You posted most of it here. Keep it brief so it's visually quick to read, but have a second page with a more detailed version (because if someone asks about reactions to a certain treatment, you can't always pull the info out of your head.)

(she might want to make this into a notebook. )

Humans are visual creatures, and sometimes visual aids can make a difference. With this in hand, the doctors could be engaged in a discussion about the following:
* what OTHER illnesses could this be?
* how quickly is this treatment expected to produce results?
* if the treatment is working, what improvements do you expect to see and how soon?
* what are the signs that the treatment isn't working as you expected?
* could there be a secondary condition that occurred as a result of the primary condition being treated (suppression drugs allowing something (yeast... this is a bad example) to flare up)?
* could some of the symptoms be attributed to "steroid rage"? www.omsusa.org...
* What else can be given for the symptoms (I'm thinking of the nausea)?
* What is the next step we need to consider if this isn't producing a quick improvement?
* What other information do you (the doctor) need from home (such as laundry soap, etc) that may be useful to you?


Note any unusual "normalities"... until Asmeone2 mentioned it, I forgot to mention "low normal temperature." That's something that I have as well, and stress it whenever I go in and am sick (and make them look at the previous record.) Temperature should be noted where known, as well as known sensitivities (no matter how trivial. Even the guinea pig.)

And get copies of the medical test results. That's a patient right, and the family should have copies of all this info.


(I had a longer list, but the cat was helping me post...argh. I will add any others I think of. Add any other questions that seem logical.)

She should start carrying a digital recorder to the appointments along with the timeline and a list of specfici questions. Making notes would be lovely, but if poor Coleman is having difficulties, she can't write and pay attention to the doctor and deal with her little guy all at the same time (a facilitator would be a great help there... but again, have that recorder so that you can hear EXACTLY what was said.) Recorders are fairly cheap at WalMart or Target or wherever.

My heart really goes out to them. I hope the tide turns soon.


[edit on 23-2-2009 by Byrd]

[edit on 23-2-2009 by Byrd]

Bryd has some excellent points, and I would recommend all of her suggestsions.

The major problem with systemic fungal infections is that they take so darn long to get rid of. I pulled up an information sheet from a biotoxin site. I wasn't aware of the Questran treatment and wanted to find out a bit more about it:

Questran Treatment

This is a more specialized treatment than we would do in an emergency room. neurotoxin diagnosis and treatment is a complicated process... and even pulmonologists and radiologists might miss the mold infestation on the CT. aspergillis is easily seen. I have never seen this type of mold in any x-rays. (although inflammation and other sequale could be observed).

Questran does have some concerning side effects, especially for pediatric patients. I'm sure that the physicians will test him often for these complications... but it always helps to know what to look for. The major problems in pediatric patients that can be life threatening are:

hyperchloremic acidosis, bleeding tendencies due to hypoprothrombinemia, and intestinal obstruction.

Nausea and vomiting, wheezing and dypsnea, and other less severe side effects have been reported (these are from the 2009 version of the PDR).

I have included this link if you want to read more about Questran.

Questran


Please send the family our thoughts and blessings. I hope that this information helped a bit.





[edit on 09/20/2008 by Amniodarone]

One final thing to add (well, two)... mark the location where the boys staying at each timepoint. In other words, did the treatment make an improvement when they were at one location and they worsened in a second location? I wish they had kept him in the hospital for treatment.

The second thing would be to check with Coleman himself and see how he "felt". Too often, children are treated as silent recipients of a treatment and they aren't listened to as adults are. We evaluate from their complaints but don't ask things like "does your skin feel itchier when you wear (whatever)? Can you tell when an attack of (whatever) is going to happen?" You have to be careful when interrogating kids because they will tend to tell you whatever they think will make you happy. "Tell me about how you're feeling? Did this happen kind of sudden or did it come on slow? What things did you notice" will get you a better answer.

Here is the latest. My friend called me @ 9:00am. Coleman has taken turn for worse.Resp. Shallow! And too weak to talk. We spent all morning trying to make flight arrangements to childrens in Phili. Because he is not able to walk on his own 'angel flight' could not transport. Long story short, but the transportation co. Who would provide air ambulance wanted $9000!! Then when we were searching for other options, my friend who is a pilot and has plane, called and offered to fly him anyway! Then the admission at childrens in phili fell through. They said there is a 2 week wait. So he ended up at National Children's hosp. In DC. This process has taken ALL DAY! At least they can monitor him while they try and treat. I've been in touch with her every 15 mins. They are waiting to see neurologist he is still in ER. I have to be honest, Coleman is in bad shape. He and the family need prayer.

Will give updates as I get them.

Thanks,
Pax

I don't believe in God, but I will certainly send positive thoughts your way.
Looking forward to hearing some good news about this young boy.

I had been hoping for better news about Coleman. I hope his being in a hospital environment will do some good. His poor parents... my heart goes out to the whole family. And the flight -- what stress! What a nightmare. The pilot who flew him up there is truly a person of great compassion.

I hope greatly that the next news will be better.

Originally posted by Anonymous ATS
reply to post by infolurker

 

I think that this is all caused from mold. I was sick from mold from work in 1996 and had to quit work and stayed home and did NOTHING went NOWHERE because I was so sick. My symptoms were EVERYTHING, you name it I had it and I did detox for 5 years. Chelation therapy might be tried if you have not done this yet.
To this day I am still not well. I have had to change my whole life. I know this sounds bleak but MOLD can really mess you up, you never really get better because your body will always react to it in the future, you become hyper sensitive to alot of other things also.
I cannot tolerate any preservatives, dyes, perfume etc, etc, etc. All I can say is that it really sounds like what I have. It has been many years now and like I said I am still not well.
The best of luck, I hope they get well soon.
I might sound crazy, but believe me this is a true story. The only Dr's that know much about this are ENVIRONMENTAL Dr's. All the others will be of no help.
Liz.

You are 100% correct about mold , it existed before human , it is the most ancient thing on earth , when living things will die on earth mold will survive . Mold is even quoted in ancient books , " When you find mold in your house, abandon the house and burn it with everything inside. " There is a great documentary on mold in Russian, i dont know if one exist on discovery .One more thing on mold , it adapts very fast and comes back stronger than ever.

[edit on 25-2-2009 by Russian Boy]

Originally posted by paxnatus
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

one question... you talk as if its a "friend" , yet most of the time refer to "my boys" or "we went" "our doctor" etc.

everyone can see its you + your boys and thats fine.. but lets be honest about it, after all you are in the company of friends so no need to pretend any longer.

people are here to help, and send on well wishes.. we all do hope your boys get better soon

[edit on 25/2/09 by Obliv_au]

Try mms. PM me and i will send you some for free.

MMS is sodium chlorite when activated with citric acid create Chlorine dioxide a powerful fungicide, bactericide and anti viral.

I guess you can not send me a private message on the forum. if you are interested let me know by posting here and i will get you my email.


[edit on 25-2-2009 by rken2]

Originally posted by Obliv_au

Originally posted by paxnatus
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

one question... you talk as if its a "friend" , yet most of the time refer to "my boys" or "we went" "our doctor" etc.

everyone can see its you + your boys and thats fine.. but lets be honest about it, after all you are in the company of friends so no need to pretend any longer.

people are here to help, and send on well wishes.. we all do hope your boys get better soon

[edit on 25/2/09 by Obliv_au]

I do apologize, for any misleading details. This is really my best friends children, not mine. I don't believe I ever said "my boys" that is her quote.
I have said "we" and "our", that is because it is as if it is my boys. I love them like my own. To post the story and use Coleman's real name should be enough to let you know I am being honest. I have tried to be as transparent as possible and even caught myself about to post the mom's real name several time.

Everyone here has been so kind, compassionate and knowledgeable. I so appreciate all the valuable input.

Here is what I know:

This has been the biggest screw up I have ever seen! Yesterday, the mom was told by the neuro here, that he would be a direct admit to National Children's in DC. Well they insisted on driving him themselves. I pleaded with her to send him by ambulance, but she refused, saying it would just upset him. Then I begged to go along with her just so I could monitor his vital signs. She explained why that would not be good for him. I had to back down. However, we were in constant contact by phone.

Half way there, it is about a 90 mile drive, she gets a call from the neuro dr. at MCV, the one who made the arrangements, that she was supposed to wait until she heard(mom) from the DR. in DC!! Well this was news to her!

I paged the DC DR. to explain that they were 50 miles away and give an update on Coleman's status. He was not there and I could talk to 'on call' Dr. who called me back. She was wonderful! Apparently the neuro at MCV had planned for Coleman to be seen in DC as OUTPATIENT!!!! Please keep in mind when all these plans were made the neuro was not looking at him! She had no idea how bad off he had gotten.

They presented through the ER and guess what, there was NO BED!! The mom was told he was a direct admit. That means the admission had been done, all paper work, a bed was secure over the phone, before they arrived!
No one had a clue who he was or anything about the case. Because of his status they found him ER bed and they all spent the night there. They have ALL records, reports etc. No work up of any kind had been done, such as routine labs, because he would have to be sedated and "only neurology" could do that. They would have to wait till morning! I was furious to say the least! This is BS of the biggest kind!

As of 30 mins. ago they are still in ER, but have seen the DR. I spoke with last night and she has ordered a spinal tap obviously because of what she is seeing!! This should have been done 2-3 weeks ago!! Coleman is sedated and resting which is very good. Now we wait for results and blood work and CT scans and pray they get some answers.

Never in my 15 years as a nurse, have I ever seen such a botched up job!
If somebody does not recognize something seriously is wrong, Coleman will die!! He is wasting at this point. Has lost 30lbs. AS of two weeks ago he was down 12lbs over 14 weeks. He has now lost a total of 30 lbs. Down another 18lbs. over the last 2 weeks. Approx. 9 lbs a week!!!! His lungs are bleeding as evidenced by CT scan and high iron level. He cannot walk or stand or sit-up He has very limited use of his arms and hands. And as to use the mom's words, He is "postal" and psychotic. Either screams or quietly cries constantly. Has full blown panic attacks and is extremely paranoid!!
He cannot stand to be touched! He has described "a touch feels like someone is slapping me! In 1 weeks time, his level of pain has doubled.

Here is the problem, he doesn't fit the norm. of what you would see on paper!! So DR.'s don't have answers! They have to find someone who will take his case, before it is too late.

Again thank you,
Pax

Fungus is often overlooked. You live on a farm so there is a chance it could be mold related. I was infected with black mold and I showed very similar symptoms. Plus if there are fungal spores in your home that have been released into the air it would be no wonder the entire family caught it. Plus it would explain why thier symptoms went in waves. I would look into it.

[edit on 25-2-2009 by DaMod]

reply to post by paxnatus


LORD GOD, PLEASE UNDERTAKE IN BEHALF OF THES BOYS AND FAMILY.

BRING AIR, HEALTH, WHOLENESS, HOPE, PEACE, COMFORT TO THE ILL ONES AND ALL CONCERNED.

GIVE MEDICAL PERSONNEL QUICK ACCURATE ASSESSMENTS AND TREATMENT METHODS.

CAUSE THE MEDS TO ACHIEVE MAXIMUM QUICK EFFECTIVENESS WITH MINIMAL TO NO SIDE-EFFECTS.

BRING THE FAMILY TOGETHER IN THE TIGHTEST POSSIBLE MUTUALLY SUPPORTIVE BOND OF LOVE AND INITMACY.

RALLY ALL WHO KNOW THIS FAMILY ROUND THEM IN VIGOROUS WHOLE-HEARTED SUPPORT, IN JESUS' NAME.
AMEN.

Please let me know when you get to CHOP (Childrens of Philly) The Pediatric Transport Nurse Specialist community is a small one and I know MD and nurses at that hospital that would be more than happy to stop by and make sure your friend is getting all the help she needs