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Old 10-28-2010, 03:23 PM   #1
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Daughter of 13 diagnosed with CF three days ago

My daughter was diagnosed with CF three days ago. She is 13 years old and has had a persistent cough since she was an infant. Our pediatrician insisted that the cause was asthma, but asthma medicines did little to alleviate her cough. She has always been very small (3-5% in height and weight) and now that we know what to look for, has obviously clubbed fingers. After we had our first meeting with a pediatric pulmonologist we learned that her lung function is currently at 51%. She starts her treatment on Tuesday. My question(s) ..... Has anyone on this board had a similar experience? Does this sound like a case of medical malpractice? Thank you very much.

 
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Old 11-01-2010, 07:39 AM   #2
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Re: Daughter of 13 diagnosed with CF three days ago

I'm not sure if it'd qualify for malpractice unless you specficially requested that she be tested for CF and they refused. As a parent of a child wcf, who was diagnosed shortly after he was born due to a bowel obstruction, it's a story I've heard time and time again. Parents KNOW there's something wrong with their child, yet doctors aren't familiar enough wcf and look for easier answers because the child isn't skinny enough, is of mixed race...

Now that you DO have answers, I suggest you focus on being proactive -- chest physiotherapy or the vest to keep her lungs clear of mucus. Go to an accreditted cystic fibrosis clinic. Check out the cystic fibrosis foundation for more information on the disease, treatments, medications...

 
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Old 12-17-2010, 07:39 PM   #3
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Re: Daughter of 13 diagnosed with CF three days ago

I wouldnt say medical malpratice either. Although, CF has become a very popular disease now a days, unless its requested to be tested for, its not a mandatory thing. I do agree with being proactive though. I wouldnt worry about the whole doctor thing, I would switch doctors though because this one doesnt seem to "bright". You need someone to knows ALOT about CF, and is willing to be sensitive to your daughter and yourself as having CF as a child, and having a child with CF isnt easy. I am 25 now, and I was diagnosed with CF when I was 3 months old. Your daughters lung function is on the low side, but my lung function has been 60% for the last 10-15 years now. All I do is make sure my physio is done, and I exercise quite a bit. Believe it or not, if your daughter had NO lung medication, and NO physio, if she exercised 30 minutes a day, 7 days a week, she would feel, look, and be more healthy. My best suggestion is motivate her to exercise, yes her metabolism is probably really high, and she will stay small, but the best thing is she will feel great. Her cough wont get worse if she exercises often.

One thing I really want to warn you about, but not scare you. Because the average CF'r eats soooo much and it contains enough sugars whether its junk food or not, the pancreas(where insulin is produced, which breaks down sugar in the body, you probably know this but I am explaining anyways ) works so hard to bring the blood sugars down most CF kids or adults are at risk for Diabetes. When I turned 13, I started to have symptoms but I never knew what they were, or why I was so sick. My lungs were bad ONLY at that point, and I was always extremely tired. They found out when I was 14 that I had Type 1 Diabetes as well, and its called CFRD, Cystic Fibrosis Related Diabetes. Its so complicated, but I really suggest you get your daughter tested, and I know its alot to take in right now, but you dont want anymore surprises. Now, not every CF person has it, but I know the ones who have a HIGH metabolism are at risk for it.

I hope this all helps. If you have any questions, just ask, I will pay attention to this post.

Good Luck!!!!!!!
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Born October 10th 2010

 
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Old 12-17-2010, 09:03 PM   #4
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Re: Daughter of 13 diagnosed with CF three days ago

Oh, this makes my blood boil!!! I honestly dont get and I will never get it or understand what is going on with the medical community today?? My God I would think your daughter should of been diagnosed years ago... Let me quess you have been from doctor to doctor and every doctor just looks at you like you are crazy!!!

Trust me I feel your pain and I'm living in my own medical nightmare... I was born with fatty tumors on my back/side and had them removed when I was 8 months old... When I was a Senior in High School suffered from Mono (that was my 4th yr of cheerleading), a year after I graduated at 19 I was diagnosed with Ebstein Barr, after that was very sick year after year and had terrible head pain, was given pain killers for 10 years for my headaches and tmj... never had a MRI to see if there was anything serious until 2007 when I had an emergency MRI because the doctor thought I was having a stroke and I was diagnosed with Chiari Malformation... Then 3 months after my decompression surgery I would wake up on the floor in my living room while my 2 year old son was in his crib, my vision would be distorted for a couple minutes and then it happned again but this time when I woke up my vision was so bad I could not even call 911 and lost my vision for about 3 hours... With that being said my family said I was to sick to raise a 2yr old alone and so I gave my son up for an open adoption but this is just the begining of my nightmare!

I moved to Portland thinking that there were more doctors and OHSU was there... Also in Spokane, Washington it seemed like no one really knew what Chiar Malformation was and I also had Spinal Stenosis, Degenaritive Disk Disease, and still suffer from this chronic fatigue I had when I was 18 and 19 but still wasnt shaking it... I learned real fast that no one knows anything about Chiari Malformation and was going to doctor to doctor with once again: headaches, back pain, ibs, and the fatique for someone my age was not normal at all!! I saw doctor after doctor that either didnt care or they thought I needed a psych evaluation! Are you kidding me? I did go to this one doctor in Portland and he did all this blood work and he called myself and my dad in for my next appt..." He said why do you have liver and kidney disease Jami", and why did not tell me? My mouth dropped, after seeing doctor after doctor and not one doctor had noticed that my liver and Kidneys where starting to shut down... My dad and I looked at each other and we didnt know what to say... He said "Are you telling me that no one has told you this?" Yes, Im speechless and he kept naming the last doctors I had seen in the past 6 months and I said "Im telling you they never said a word about my kidneys or my liver... He told me that I was to never have another drink as long as I lived and I remeber my dad saying "Jami doesnt drink", Yes, thats what she said, then theres a huge problem... Her liver and kidneys are shutting down for no reason... There is a reason why and there is a reason why she has no vitamin B-12, B-6. D in her system... Also he asked me to stop taking my iron pills... I said what iron pills... I dont take iron pills... He said that doesnt make anysense your system is flooded with iron... I looked at him like he was crazy!!! I was tested for HIV, and Hepatitis but negative... To this day we still have no clue what disorder I have!!!

Today my right leg is bowing and the arthritis in my knees is horrible... It looks like within 6 months I will be using a cane... The muscle loss is terrible and they diagnosed me with muscle myapthy... thats what they call when it when there is not a real name for it... I know in my heart and soul there is a genetic disorder I have and the doctores cant seem to think outside the box... I would bring up suggestions to be tested for and all I would hear from them is "Jami thats pretty rare", I was diagnosed with Chiari Malformation... that is a very rare disorder... im allready outside the box!!! I think these doctors need to be accountable for there actions and it just pisses me off how they all stick together!

Thank God your daughter finaly got diagnosed but something is not right exspecially if she had physicall traits that you could see by just looking at her that something didnt look right... I bet you are pretty frustrated and you have every reason to be!!! Its terrible how doctors are treating there patcience these days exspecially the ones that make them THINK... Get off your high horses people and show some empathy, I thought you become a MD to help others not to hinder them!!

Now a list of my symptoms if anyone can help and lead me to a doctor please do:
BORN WITH FATTY TUMORS ON BACK/SIDE
CHIARI/MALFORMATION
TUMMORS ON SPINE
SPINNAL STENOSISE
DEGENERATIVE DISEASE
FREKLES UNDER ARM PIT
CHRONIC PAIN
BACK CURVES
BENDING OF RIGHT LEG
SON BORN WITH VERY RARE EYE PROBLEMS
FATIGUE
MUSCLE PAIN
JOINT PAIN
HIGH BLOOD PRESSURE
ADD
LEARNING PROBLEMS AS A KID
IBS
KIDNEY AND LIVER PROBLEMS
LOW VITAMINS IN SYSTEM
LARGE EYES
SMALL EARS, NOSE, HANDS
TMJ
MUSCLE MYPOTHY
MONO AT 17
EBSTEIN BARR AT 19
SEIZURE DISORDER
INSOMNIA
NIGHT SWEATS
I CANT CONTROL MY BODY TEMP
DEPRESSION
LOST A BABY WITH CYSTIC HYGROMA
SKIN PROBLEMS
MRSA
SORE THROAT
EYE PROBLEMS
HEARING PROBLEMS
VERTIGO
DURING 2 OF MY LABORS HAD PLACENTA ABRUTIO
HIGH LEVELS OF IRON
YEAST INFECTIONS
CANDIDA

PLEASE SOMEONE I HAVE BEEN TESTED FOR EVERYTHING EXSEPT GENTIC DISORDER... I HOPE AND PRAY THERE IS A DOCTOR OUT THERE THAT CAN HELP ME AND AN ATTORNEY TO HELP HIS DAUGHTER!!!!!!

THANKS
Jami

 
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Old 02-24-2011, 02:11 PM   #5
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Re: Daughter of 13 diagnosed with CF three days ago

I would get with a cf doctor for remainder of care, as they specialize in cf only in children and you will always be number one to them in the center. My son was three months old when we found out, and he is now 21. Take care.

 
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Old 04-27-2011, 06:04 PM   #6
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Re: Daughter of 13 diagnosed with CF three days ago

How is your son doing? I am 25, and I was diagnosed when I was three months as well. I now have triplets, and I feel great! I hope he is doing well!
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Old 05-04-2011, 07:29 PM   #7
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Re: Daughter of 13 diagnosed with CF three days ago

The best thing you can do right now is contact the Cystic Fibrosis Foundation (go to their website to get their toll free number). They can refer you to your nearest CF Center where patients are treated by CF care teams (pulmonologists, respiratory therapists, dieticians, etc) all of whom really *know* what cystic fibrosis is, how it affects the patient and his/her family. I used to work for a state CF chapter and whenever a parent of a newly diagnosed patient called, I would encourage them to contact one of the CF Centers in our state. They have lots of information that will be very helpful to you as a parent as well as good info' for your teenager. The CF specialists at these centers work with your child's local physician. There's more to cystic fibrosis than keeping lungs healthy which is why there are a number of different medical professionals on the CF Center care teams (and why your child will greatly benefit by being seen and then followed at a CF Cener).

 
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Old 01-27-2013, 10:20 PM   #8
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Re: Daughter of 13 diagnosed with CF three days ago

Hello
it seems you have a HUGE iron problem, which may cause many of the symptoms. There is Genetic Iron Problem - Hemochromatosis, as well as "Iron Overload" and "Iron Toxicity". Many of the Cereals today have a full day's worth of Iron (check the labels), and that is not to mention all the other iron sources in diet. try googling the above, and you should get to sites which explain the tests needed to determine Iron Storage Problems (NOT the same as measuring Iron- one can be Iron deficient, and still have Iron Storage Problems)..

Might be of interest to check out.

 
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