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Help please our 21month old daughter
Our 21 month old daughter gets sick every 3 weeks (you can set your watch to it) fevers in the 102 area each time, ear infections, viral infections, sinus infections, and a shadow in the right lower lobe of the lung that keeps coming and going (they diagnose it as pneumonia when it comes and she is really sick) and this has been going on for the last year and 2 months. It started with her choking and turning blue, when we ran her to the ER they said chest x-rays showed pneumonia in her right lung (problem was that she was not sick). That was Sept 12 2006 and she has been sick ever since. They tested for CF, they did immunity tests, an upper Gi, a 24hr ph probe...everything came back normal. She is on albuterol, flowvent, zurtek, prevacid & ciprodex as needed for ear infections. She had tubes put in her ears on April 5th 2007. She is on Bactrim or Omnicef every 3 weeks for which ever infection she has at that time. Does anyone know what may be causing her illness or what tests we should push to have done on her? This is just not fair and I feel like I am going to lose my mind soon!
Our daughter had all of the same things done that your son had done, except for ironically a chest x-ray. We were told also that she had a soft trachia and that she would "outgrow" that. She was put on the acid reflux drugs and they did nothing. What she ended up being diagnosed with (after a chest x-ray finally) was sitis inversis, immotile cilia syndrome and kartagenars syndrome. She uses albuterol also. Does hte atravent not tend to make them so hyper? How is your son doing?
I feel for you. My son is 13 months old. We went through a lot with doctors that couldn,t tell us what was wrong with him. He was also turning blue and purple. We even had one doctor tell us he had a paranoid mother. We finally got an MRI, bronchoscopy, and a ct scan done. With these tests they were able to tell us that he has bronchomalacia(soft bronchial tubes) trachomalacia(soft trachia) and laryngomalacia (soft larynx). He also has a bad case of acid reflux. He is now taking prevacid, flovent, singular, and atravent. He also gets ear infections, though not to that extent, and has had pneumonia and rsv. Keep pushing, we found a lot of doctors who made us feel crazy. We finally found one to help us at Mott's Childrens Hospital in Ann Arbor Mi. Also ask them about atravent instead of albeuterol. It is supposed to make the heart race less, we were also told it was counterproductive to our childs condition. My wife and I wish you the best of luck, our prayers are with you
MEDICAL PROFESSIONAL
Not to ignore her upper respiratory infections, the recurrent pneumonia in her right lower lobe suggests the possibility of an anatomical abnormality of the bronchi or lung tissue, a localized abnormality that predisposes to recurrent infection and this would best be assessed with a high resolution CT scan of her lungs and possibly a bronchoscopy.
From your description, it appears that your daughter's doctors have been vigilant in attempting to come up with a diagnosis, but you should confirm that the testing for cystic fibrosis (CF) was genetic testing, designed to identify 20 or more of the abnormal CF genes. You should also confirm that the testing of her immune system was very thorough; there are many varieties of immunodeficiency and, with this history, every one should be considered. Given that all the usual things seem to have been done, you should speak to your daughter's doctors about these questions and request consultation with a pediatric pulmonologist and a pediatric infectious disease specialist at the nearest university affiliated children's hospital.
It is understandable that you would feel like you are "going to lose your mind soon". The best solution for that is strong family support and your engaging in a determined effort to get to the bottom of your daughter's problem.
From your description, it appears that your daughter's doctors have been vigilant in attempting to come up with a diagnosis, but you should confirm that the testing for cystic fibrosis (CF) was genetic testing, designed to identify 20 or more of the abnormal CF genes. You should also confirm that the testing of her immune system was very thorough; there are many varieties of immunodeficiency and, with this history, every one should be considered. Given that all the usual things seem to have been done, you should speak to your daughter's doctors about these questions and request consultation with a pediatric pulmonologist and a pediatric infectious disease specialist at the nearest university affiliated children's hospital.
It is understandable that you would feel like you are "going to lose your mind soon". The best solution for that is strong family support and your engaging in a determined effort to get to the bottom of your daughter's problem.
It is very possible that your daughter is being seriously effected by her environment. It really sounds like a fungal infection which is being excerbated by mold which can be DEADLY, insidious and more common than most people think. One third of all people are allergic to mold and everyone is in danger with certain types of mold, such as black mold which causes neurological disorders among others. I know, because it completely screwed up the immune systems of my own family. We didn't even know it was there until we moved (there were no obvious signs or smells) and found this big black monster growing under our house in the crawlspace, which of course aired into the house.
My oldest daughter is currently in hell right now in her home in France and with her baby's reactions to it...it took her awhile to find it. Since our exposure and illness, we've become research fanatics and I'll tell you that chronic illnesses such as your daughter's are almost always environmental or allergy related and 99% of MDs are idiots in that arena. Get her out of that house for two weeks and watch what happens. She won't show immediate remission, but you will probably see some noticable improvement unless you go to another place with the same issues (my daughter's baby's disposition, rashes, cough, etc. changes very rapidly when she's in a mold-free environment).
Other things to look for - bad wiring, poor grounding, cell towers nearby - besides being cancer causing, faulty electrical currents prevent calcium from being absorbed in the body and besides the obvious long-term effects, makes everyone very cranky (I'm including that symptom for a clue, in case your family is more irritable).
In Germany, where they tend to be way ahead of the curve in medicine, if someone gets cancer the first thing they do is tell them to move or check the house for electrical malfunctioning. You can hire certain people to check your house for that. As for diet, dairy is a common culprit as is wheat, but check out websites on elimination diets and how to go about them - VERY IMPORTANT, but it would be best of all, if you found an expert. A wholistic MD would be the best, though good ones are so very hard to find. They saved my family's lives.
Believe me! These techniques are tried and true. My oldest daughter worked for one of the best doctors in the world (people with "incurable" diseases came to him from all over the world) and she saw miraculous recoveries first-hand, just by implementing these simple life changes (though it is tough at first to shift our paradigms). Beware! - in my experience, most traditional doctors can't help you if they don't have a drug to push at you and may mock your attempts to find a better answer. Louis Pasteur and many other great scientists were shunned and banned by the mainstream medical establishment where much arrogance and conformity tend to rule. Logically, it doesn't make sense that anyone suffers from a "drug deficiency" - we've really been brainwashed by the big pharaceuticals. Most of them are absolute idiots on the subject of nutrition and are potentially dangerous.
My pulmonologist just told me to buy vitamin D and when I asked her if she meant D3, she was totally perplexed and said just any D. D3 is a natural form of D and there have been numerous reports that synthetic D is potentially carcinogenic - my doctor missed the memo because she was obviously getting her continuing education from Merck and Pfizer. Bottom line - find a top of the line naturopath - my preference is a wholistic MD, because their perspective is usually wider, though they are harder to find.
Flovent is a steroidal drug containing fluoride and if it were my child, I'd get her off of it (slowly, but as quickly as humanly possible - steroids should never be stopped abruptly) because steroids are really tough on the immune system and 80 to 90% of the deadly drugs taken off of the market have contained fluoride - a highly reactive element that has received far too much free and incorrectly positive press for far too long. Fluoride makes my lungs go bezerk - I can't even shower without oxygen in cities where there is fluoride in the water. My father and sister have had psychotic episodes with flonase - another steroidal fluoride drug for sinuses. The majority of kids who have gone on rampages in their schools have been on prescription drugs, many of them containing fluoride.
You need to protect her immune system by getting her off of that deadly drug (with the help of a smart doctor) and add probiotics (full spectrum acidophilus) to rebuild the flora in her stomach - which is the key to her immune system; chlorella to pull out the toxins and cod liver oil (it comes in orange flavor that most children like). It takes awhile, but it is a sure thing when you get on the right track.
My heart is going out to you and I pray you find your way out of the nightmare faster than I did...it is difficult but easier than you think once you discover some of the keys.
My oldest daughter is currently in hell right now in her home in France and with her baby's reactions to it...it took her awhile to find it. Since our exposure and illness, we've become research fanatics and I'll tell you that chronic illnesses such as your daughter's are almost always environmental or allergy related and 99% of MDs are idiots in that arena. Get her out of that house for two weeks and watch what happens. She won't show immediate remission, but you will probably see some noticable improvement unless you go to another place with the same issues (my daughter's baby's disposition, rashes, cough, etc. changes very rapidly when she's in a mold-free environment).
Other things to look for - bad wiring, poor grounding, cell towers nearby - besides being cancer causing, faulty electrical currents prevent calcium from being absorbed in the body and besides the obvious long-term effects, makes everyone very cranky (I'm including that symptom for a clue, in case your family is more irritable).
In Germany, where they tend to be way ahead of the curve in medicine, if someone gets cancer the first thing they do is tell them to move or check the house for electrical malfunctioning. You can hire certain people to check your house for that. As for diet, dairy is a common culprit as is wheat, but check out websites on elimination diets and how to go about them - VERY IMPORTANT, but it would be best of all, if you found an expert. A wholistic MD would be the best, though good ones are so very hard to find. They saved my family's lives.
Believe me! These techniques are tried and true. My oldest daughter worked for one of the best doctors in the world (people with "incurable" diseases came to him from all over the world) and she saw miraculous recoveries first-hand, just by implementing these simple life changes (though it is tough at first to shift our paradigms). Beware! - in my experience, most traditional doctors can't help you if they don't have a drug to push at you and may mock your attempts to find a better answer. Louis Pasteur and many other great scientists were shunned and banned by the mainstream medical establishment where much arrogance and conformity tend to rule. Logically, it doesn't make sense that anyone suffers from a "drug deficiency" - we've really been brainwashed by the big pharaceuticals. Most of them are absolute idiots on the subject of nutrition and are potentially dangerous.
My pulmonologist just told me to buy vitamin D and when I asked her if she meant D3, she was totally perplexed and said just any D. D3 is a natural form of D and there have been numerous reports that synthetic D is potentially carcinogenic - my doctor missed the memo because she was obviously getting her continuing education from Merck and Pfizer. Bottom line - find a top of the line naturopath - my preference is a wholistic MD, because their perspective is usually wider, though they are harder to find.
Flovent is a steroidal drug containing fluoride and if it were my child, I'd get her off of it (slowly, but as quickly as humanly possible - steroids should never be stopped abruptly) because steroids are really tough on the immune system and 80 to 90% of the deadly drugs taken off of the market have contained fluoride - a highly reactive element that has received far too much free and incorrectly positive press for far too long. Fluoride makes my lungs go bezerk - I can't even shower without oxygen in cities where there is fluoride in the water. My father and sister have had psychotic episodes with flonase - another steroidal fluoride drug for sinuses. The majority of kids who have gone on rampages in their schools have been on prescription drugs, many of them containing fluoride.
You need to protect her immune system by getting her off of that deadly drug (with the help of a smart doctor) and add probiotics (full spectrum acidophilus) to rebuild the flora in her stomach - which is the key to her immune system; chlorella to pull out the toxins and cod liver oil (it comes in orange flavor that most children like). It takes awhile, but it is a sure thing when you get on the right track.
My heart is going out to you and I pray you find your way out of the nightmare faster than I did...it is difficult but easier than you think once you discover some of the keys.
i have been chronically ill with my lungs my whole life. i have had ear infections, pneumonia (5or6 times) sinus infections, you name it...i was considered to have asthma until i was 28 and in the hospital for the third time with pneumonia. they tested me for CF and it was negative but a specialist realized through questioning me that i was unable to get pregnant...long story short...i had a biopsy done and they found that i had immotile cilia syndrome or primary ciliary dyskenesia (it was renamed) it may be worth asking your doctor to look into this.
lallen4monavie at yahoo dot com
lallen4monavie at yahoo dot com
The thing about sweat testing is that if it is positive, then more than likely it is CF. That's why docs will do that test first and then genetic testing if that is inconclusive. Do you happen to remember what the sweat test values were? I am just curious...Hugs, Sunny
Yes, they only did the sweat test (twice), no other genitic testing was done and no swabbing was done. I did not know there was any other further testing that could be done. Thank you for the info!!!! I appreciate it ver much!
I also see that your kiddo is getting a bronchoscopy..that will hopefully help tell the doc what is going on in there too. Has your daughter cultured any bacteria when they swab her? Just curious...Sunny
When you say your daughter was checked for CF, did they run the entire genetic panel for the 1500+ mutations out there or did they do sweat testing alone? Even with a "normal" sweat test, I have heard of a few cases that were diagnosed after the Ambry complete CFTR test. Yes, most people have the higher sweat tests but not all. There are some that have normal sweat tests or borderline (normal 40 but 60). If the complete test wasn't done, then it might be worth approaching the doctors about for completeness sake. I don't mean to frighten you, I am just throwing this on the table as a possibility if this more complete genetic test wasn't done. I pray that you get answers soon, it is frustrating and scary to see your little one so sick. Hugs Sunny
Thank you so much for the information, we are willing to try anything at this point. We asked to have her tested for allergies but we are told she is a bit young yet.
We live in PA in a house 100+ years old. (which worries me also).
We have a nature store down the roada from our house, I just never knew what to buy... I didn't want to make her sick.
Thank you again so much for your replies!
We live in PA in a house 100+ years old. (which worries me also).
We have a nature store down the roada from our house, I just never knew what to buy... I didn't want to make her sick.
Thank you again so much for your replies!
Thank you for the prayers and well wishes... we have been doing alot of praying ourselves :0)
She is seeing a pulmonary specialist at Philadelphia Children's Hospital. We are meeting again with him on this month and we are looking at doing a scope of the lung...it is just a guess for reflux, asthma, pneumonia, & allergies...just a guess and she is on all the meds as if she has these issues. We just wanted to see if anyone had any suggestions of what else we could have her tested for while they are doing the scope. I would rather have one bad visit to the hospital with alot of tests and figure out what is causing this then to keep her going like this.
Thank you again for the well wishes.
She is seeing a pulmonary specialist at Philadelphia Children's Hospital. We are meeting again with him on this month and we are looking at doing a scope of the lung...it is just a guess for reflux, asthma, pneumonia, & allergies...just a guess and she is on all the meds as if she has these issues. We just wanted to see if anyone had any suggestions of what else we could have her tested for while they are doing the scope. I would rather have one bad visit to the hospital with alot of tests and figure out what is causing this then to keep her going like this.
Thank you again for the well wishes.
For such a small child, they have her on so much! Have you taken her to a respiratory specialist to find out if it is truly pneumonia? So it is like, when she is finished with the meds, she is sick again? That is so strange...........I will ask around and see if someone might know what is going on...........and I will pray for her, that is the best thing.........:-) God bless you and your daughter........:-)
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