I debated for a long time whether or not to share this heartbreaking tragedy, but we have reached our end and need new ideas. No one seems to know what is happening to these children. Please help!

This is the true story of 2 brother's and what has happened to them. Their is an older boy who is 12 and a younger one who is 8. I have changed their names and will refer to them as simply oldest and youngest. The doctor's are x and z everything else is fact.

Nov. 1/2 – whole family blew leaves in yard at farm on James River in Appomattox, VA

Nov. 14 - (youngest) – sick with respiratory virus – no fever dry cough – stomach aches

Nov. 17 - (oldest) – sick with respiratory virus – no fever, strange dry cough – no stomach complaints

Nov. 17 - Mom sick with respiratory virus – cough – weak – no fever

Nov. 18 (?) – both boys to pediatrician – looked like virus running through the family – commented on the strange cough that was getting more pronounced

Nov. 20 – (youngest) had improved (lasted about a week) – went back to school through the week – no meds

Nov. 23 – Dad had symptoms too, wiped out on the couch, some dry cough

Nov. 24 –Oldest' cough more pronounced morning and night– back to pediatrician – put (oldest) on steroids and antibiotic to be safe

Nov. 26 – headed back to farm in Appomattox for Thanksgiving holiday – both boys were better – oldest coughing less – always at night when he goes to bed – starting to last about an hour until he falls asleep – youngest' cough is gone, Mom’s cough is gone – Mom on antibiotic – the second in 15 years because whatever this is has her knocked her flat.

Nov. 26 – first night at the farm in the basement room where we all sleep – the boys both coughed at bedtime, Mom coughed a little

Nov. 27 – both boys coughed more at night – Oldest feeling wiped out staying on couch all day – clearly getting sicker – Mom coughing again at night as well. Dad’s eyes burn and he comments that the room sounds like a TB ward.

Nov. 28 – trip into town – Youngest has another coughing jag that usually precedes a throat closing episode – we gave him a single dose of steroids – 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. This dose always seems to work, but maybe the real issue is that the coughing stops when he falls asleep, since the episodes almost always happen at night.

Nov. 29 –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. I am always ready to leave that environment. This time I had my husband pull out a full set of wall to wall antique furniture that runs the width of the basement, because we have found some slight mold on the tile floor before. When he moved the furniture out, it was covered, truly covered – top bottom sides back with a gray fuzzy mold, there was mold on the baseboards, floors and lower walls. Some was jet black and small, some was gray. We also pulled another piece of furniture out that is next to (youngest) bed and it had mold spore spots that were round about the size of a quarter in varying shades of green. Needless to say, we left that day…

Dec. 1 – back home and in pediatrician’s office – both boys have a horrible seal barking cough – turns heads everywhere – Doctor said he had actually never heard a cough like this. (oldest) had finished his steroid dose of 5 days and I foolishly agreed that he should do more, so we amped the dose of orapred to 4 teaspoons daily and he took steroids a total of about 13 days. Youngest also took a 5-day course of steroids. Both boys started using pulmicort and xoponex. This marks the beginning of the downhill slide. Both doctor and mom suspect cough-variant asthma. Doc says we should see Dr. X as an allergist “looking over our shoulder”

Dec. 1-10 – both boys coughing all day – but AM and PM are worse. Bedtime consists of at least 2 to 3 straight, non-stop hours of coughing – emotions are running high. (oldest) has been having emotional episodes that are now daily, he will yell out at someone and then cry – he is very upset at night. He has missed all holiday stuff, his classmates are back in school, we canceled our trip to NY for Christmas, and he is sad and tearful frequently.

Dec. 10 – Oldest has appointment with Dr. X (allergist) because he is the sickest but youngest tags along and is coughing as well. Oldest does very poorly on the breathing tests and not much improvement with inhaled steroids. We talked about reflux being a probable issue. Dr. can tell by the swabs that there is evidence he has had a virus. He tries Symprex D to replace Actifed. After this appointment, Oldest is taking:

Semprex D – 3x daily

Nasonex – 2x daily

Astelin - 2x daily

Allergy Drops – replaces immunotherapy

Singulair

Dec. 10-17 – both boys worse – still coughing – back to the pediatrician somewhere in this time – didn’t really change the regimen – didn’t do an antibiotic – coughing daily still – (youngest) starting to cough less. Oldest tells me he is dizzy and has a headache every day. His concentration is poor, he is weak.

Dec. 15-18 – (youngest) goes back to school – doing better, cough is still around but better; it still disrupts the class some. We try to take oldest back to school, his cough is better, but he explodes in tears when my husband drives into the school parking lot. I get him to school on 17 and 18 and his cough is so much worse in the classroom (modular trailer) that I go to school to give him breathing treatments. Every time he takes a breathing treatment we notice his cough is worse. Pulmicort and Xoponex had been our friends, now we weren’t sure.

Dec. 17-27 – more of the same – can’t go out in public much because the coughing from oldest is so loud and heavy and deep. He is generally
emotionally stable except for the once a day thing and keeps saying “God has a plan for this” to make his mother feel better.

Dec. 29 – Both boys back in Dr. x'soffice. Oldest' cough has now turned into a very vocal chord cough that literally warbles and lasts a long time each burst. (contd)

i'm not a doctor, but i live in california and this has similar symptoms of lyme disease. my heart goes out to you and your family, and i hope you can get help. good luck and don't give up.

Youngest cough has calmed some – THE BIG EYE OPENING DIAGNOSIS FOR ME WAS REFLUX IN BOTH OF THEM. Both boys started a reflux medicine regimen (oldest prilosec 2x per day and youngest Previcid 1x per day – both boys are still on the medicine) youngest gets allergy tested which confirms what we’ve heard before, dust and dust mites the biggest culprit, some pollens, not mold – slight allergy to guinea pig. I say that because we got a guinea pig last July and both my mother and mother-in-law won’t stop accusing that animal for all our ills…

Oldest gets a sinus X-Ray – and a nasal swab, both negative.

Dec. 29-Jan.3 – much worse – coughing so bad at night from both of them that I videotaped it. – on the phone in the night with the pediatrician to try to keep (youngest) out of ER – cough sounds croupy.

Jan. 4 – Both boys swabbed and diagnosed with RSV. Doctor warns this will be a two-week run.

Jan.4-15 – Both boys coughing but oldest' cough has gone into something so deep that my only description is a lion’s roar. It is hard to believe something so loud and big could come from 12-year-old boy. People that hear him say he needs to go to the ER. Youngest is a bit better, but still coughing, maybe more now. There is still the two-hour cough window each night.

Jan. 12 or 13 Oldest back to pediatrician – she has never heard anything like this cough and refers us to Dr. Z a pediatric pulmonologist. He is no longer able to do schoolwork or to concentrate on much of anything. He is just too sick.

Jan. 15 – office visit with Z he tells me this is serious – also thinks there is an emotional quotient – the cough brings me to tears on occasion and it happens all day long probably about 200 episodes per day. Dr.Z says we need to do a bronchoscopy . That night is one of Oldest worst.

Jan. 16 - Dr.Z calls to tell me we can do a scope in 4 days at St. Mary’s I say it’s waiting too long, I am fearful for Oldest. We admit Oldest to cjw Medical Center to get tests done. Bronchoscope shows big nodules on the back of his tongue, swollen vocal chords, red esophagus with rings, inflamed, trachea has a white “film” or slime around it and white spots. Dr. Z was able to suck out the white film but the white spots would not move. They were very clear in the photo and plenty of them. He showed us the photos and felt we were clearly and logically dealing with a fungal infection. He took cultures, lavage and put Oldest on 100 mg. of Diflucan per day. He took him off foods for almost two days. TB test negative, pertussis swab negative. Added Pulmozyme and a different bronchodilator (?). Coughing was so much better right away – episodes cut in half and then practically gone. Even the first night in the hospital had very little coughing. Coughing stayed improved – he ate a small amount of solid food on Sunday evening before being discharged. Dr. Z said to stay on a reflux diet, which we have. Oldest and youngest both came off all meds except reflux medicine, antifungal for oldest and Pulmozyme for oldest.

Jan. 18 – as soon as we are discharged, oldest stepped out of the hospital and coughed again – the cold air ALWAYS makes him cough. He only had 24 cough episodes that evening but he had eaten some food and we were no longer in a sealed hospital room.

Jan. 19 – only 16 cough episodes all day – Oldest is exhausted, emotional, still dizzy, very stomach sick – feels like he will throw up frequently. Youngest is coughing more now – he is also stomach sick.

Jan. 20 – back to Dr. Z. for a follow up. All cultures are NEGATIVE for fungal infection. Two other cultures will cook for 8 weeks. We are surprised. Dr. doesn’t know what the white spots are. Oldest is coughing a little still – frequently nauseous. Dr. said to stay out of school and that if he wasn’t completely well in two weeks we would do CT Scan, Upper GI. Oldest throws up in the car – constantly nauseous and carsick. He is eating VERY little.

Jan. 20-24 – Oldest' cough has gotten better each day. He is still exhausted and typically falls asleep between midnight and 1 AM and sleeps till 11 or noon. Stomach is still a mess, eats very little, losing weight. Starving but afraid to eat. He is unable and completely uninterested in looking at schoolwork. Youngest is still stomach sick as well and his cough seems to be almost gone, he is planning to go back to school on Monday the 26th. He is keeping up with his schoolwork with my mother tutoring him.

Jan. 25 –Youngest starts coughing again in the AM – coughs all day (note we took the guinea pig to my mom’s house for 5 days and this is the same time Youngest cough cleared) the guinea pig came home the 24th.

Jan. 26 – Youngest still coughing – a clear pattern now - bedtime is bad, he falls asleep coughing in my arms around midnight – he does not cough while asleep, and the moment he opens his eyes, he coughs badly. This tends to clear by about 11 AM and is far less frequent until nighttime when it starts again. – Very cyclical. Warm showers seem to help or is it just because he got upright out of bed and the reflux is lessened. He says his throat and stomach hurt. On a scale of 1-10, he consistently gives his stomachache a 7-8. Some mornings when he eats, he says it’s a “25” and feels like he will throw up. IF THIS IS TRULY REFLUX, WHY ARE BOTH BOYS STILL SICK AT THEIR STOMACH AFTER MORE THAN 4 WEEKS OF CONSISTENT REFLUX MEDS??

Jan. 27 – stopped giving Oldest Pulmozyme because he coughed so wildly when breathing it. His cough is now almost gone.

Jan. 28 – 29 – Youngest still in a pattern of coughing – still out of school. Oldest only coughed once all day yesterday but he is so lethargic, clearly telling us he does not feel better, constantly dizzy to the point that he can’t even read his textbooks and his emotional quotient hit an all time high last night when he cried for almost 30 minutes. He also cried for no reason during the day yesterday, wont get out of his pajamas and tried to go back to bed at 4PM.

What is wrong with my boys???

Being a nurse, I have tried to help and ask her to send me her notes, so I would have a better direction as to where to go.

My friend and I both suspect an exposure from a mycotoxin that is found in 'black mold' the particular strand is lethal, if the exposure is severe enough.

Here are the symptoms they have now , and as you will see the older boy has started to deteriorate neurologically. (cont)

Have they had chest xrays?

Oh and pass this on to them--

Eating a lot of plain, natural yogurt will help to clear up any fungus in the body.

I know you said they came back negative and it may not do much for a severe infection, but it can't hurt either.

The Colloidal Silver will kill fungal infections as well, it sounds like it is running throughout their bodies. Yogurt will help them with energy and digestion.

Did I read you are a nurse????

Not a doctor/nurse, but for me I used common sense when my daughter had a bout w/almost the same symptoms when I lived in Pa. and once again when I moved to the Pacific NW area.

The doctors were treating the symptoms, all treatments were generic...if it works for one kid, it should work on your sons. The Oldest's emotional state could have been precipitated by the use of all the medication(steroids) that was being given him by the doctors. Coughs and fevers as well as throwing up may be uncomfortable, but it is the body's way of ridding it's self of what is making it sick.

All of the medications that the doc's have been giving your boys have the ability to suppress their immune system...so doc's give more medicine, all of which have side effects, which only add to the original problem.

You also said that the guinea pig came home and the coughing started again.

Like I said, I used common sense with my daughter, gave her old fashioned breathing treatments w/hot water and eucalyptus oil. Used light food, soup and such that would not over load her stomach, honey and lemon for her coughing episodes, honey btw is a great antibiotic.

Long story short...sounds like your boys do have allergies to the "pig"...but your guess of black mold sounds like a very good possibility. Let their immune systems build back up so they can fight off what it is they have. And the test for black mold is a specific test, not just the overall test for mold.

Listen to your instincts and you will be able to help your sons...doctors sometimes are blinded by schooling and do not see that each individual is not going to respond to their guessing.

Believe it will get better, it will...it will just take time.

~Holly

Without even reading past the first few dates/incidents listed, I immediately reached the conclusion of MOLD. I live in the Mid-Atlantic Region as well, and I have a lot of experience in Southern Virginia (My family is from the Region).

I have 24 Years of Experience with Health Care, and my Mother whom I was just reading this account to, has far more experience than that. "Mold" was the first word out of her Mouth the moment that I mentioned the Symptoms, and the Time of Year. As for the "Seal Cough", this is not uncommon of Bronchial Constrictions.

Airway Issues, as well as Pulmonary Medicine in General, are areas which my Mother happens to have a lot of Experience and Knowledge (From spending so much time at Major Hospitals, and discussing issues with various Departments, Doctors, and so forth). Fortunately she does not have problems herself, but I have known some very close acquaintances who do/did.

That "Black Mold" which you described is VERY, VERY Dangerous. I am not even overstating that here. Those who remove it wear nothing less than Masks, Respirators, and Full Protective Suits. It is downright deadly if you inhale too many spores emanating from it, and some forms of it can cause severe reactions simply through touch.

As for the Asthma, such cases are typically Environmentally Induced. The Farm needs to be fully contained, and inspected, IMMEDIATELY. This is a process which could take a while. You need an entire crew to go over that place with a real "Fine Toothed Comb".


ALSO, Leaves are a MAJOR source of Mold, especially in the Fall. I myself, even when wearing a Bandanna over my Nose and Mouth while using the leaf vacuum, came down with Congestion and a Slight Cough from all of the Dust and such just last fall. If I ever do it again, I am wearing nothing less than a 3M Filter Mask (The Dust/Pollen kind which you find at all of the Hardware and Garden Stores).

Let me know if you want any more information in regards to this current case of yours, because I must say that I am slightly shocked at the Doctor's lack of knowledge in terms of the Coughing and so forth.

Since you are a nurse and familiar with the system, this will no doubt have occurred to you, but I would recommend getting them referrals to the nearest good teaching hospital instead of relying on local doctor's offices/hospitals.

In my opinion they have a good chance of finding someone who will want to solve the mystery there, not just treat the symptoms.

Just a couple of thoughts here:

Im very sorry you are having to deal with this issue and seem to be getting nowhere.

As several posters before me have mentioned, it seems to be a connection between living in or around farms and this. Can you tell me were there any recent soil tilling or harvesting? (That can toss spores into the air)

My reccomendation may not be appealing, but.........

After talking with my personal doctor, she confirmed what we have thought
toxic exposure to black mold. And Yes he is dying. He went to MCV yesterday and they had no beds. But for the FIRST time he is seeing Pediatric Neurologist and Infectious Disease Specialist and has brand new Pulmonary doc. They sent him home because felt he would be better protected from inf. he may pick up in hosp.

you are on the right track. These guys need to be pediatric specialists. Not adult docs that dabble in Peds. I did not catch exactly where you are, but you should high tail it to the nearest freestanding Childrens hospital or the UNIVERSITY OF VIRGINIA CHILDREN'S HOSPTIAL (Im assuming somewhere in Virginia) would also be your best bet.

Make sure that neither of them have a viral cardiomyopathy or Steven Johnsons syndrome or kawasakis Disease. (They do not seem to have enough symptoms for either but it wont hurt to rule those out.