mom of a 16 yr old daughter

[heathercrittendon]

Junior Member

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Join DateFeb 2014Posts1

Hi I am also new to this site. I am a mom of a 16 yr old daughter. She has ddf508, mostly weight issues. She is 5'2, 94 lbs. She has a g tube and takes 2-3k calories at night. She also does hyper tonic, pulmozyme, albuterol and the vest. Her dr says she has very mild chrons, but she never has any symptoms and hasn't taken the pentasa for a while. She has maintained her weight and height and fev of 72-4 for the past yr without any hospitalizations. They want her to be at 100lbs. I feel like her GI dr always wants to do unnessecary tests. Now he is saying her lack of weight gain could be inflammation in the intestines, and want another colonoscopy. I think that is not needed and she could just eat breakfast before school and a better lunch after school. She currently just snacks at school.What are you opinions?​

 

[Aboveallislove]

Dear Mom,

I'm wondering if it is inflammation what would they do? Our son has a ton of GI issues (although we are kinda in a good spot now), but never had they mentioned a colonoscopy. Now his weight is good now, but even when it was lowish (teens) they never mentioned a colonoscopy for inflammation. Is it CF or chrones related? I guess if it were me, I'd find out what they do if it is inflammation. If nothing, what good is the test. If something, is it something that is "risky" or has a lot of negatives? Could they just try it in the meantime? I know they have such pressure for weight, but seriously, 6 pounds for a colonoscopy? Also, are you keeping up on the Vertex trials? Anecodotally, those in the study (for ddf508) have done great in gaining weight. By mid-year the results will be announced and maybe approved by year end. So she'd also have that potentially within a year. So long and short for me is what would results tell doctors? Inflammation? Okay, and then what?

 

[tbourcier22]

heathercrittendon,

I made a reply on the other forum that you posted this exact comment on. Feel free to contact me if you would like after reading it.

 

[Printer]

I would commend you on your insight not to mention your medical knowledge. It is a rare Mom who is able to determine so clearly that this Doctor wants to order unnessecary tests. Now just because your Daughter is 16 and 5' 2" and weighs 94 pounds should be of no concern to the GI Doctor. He should mind his own business and order only the tests that you think that your daughter should have.

Breakfast before school, while good for every student, should be ideal for Daughter and would certainly clear up any intestinal inflammation that she possibly could have. I would suggest Irish Steel Cut oatmeal.

Just because these Doctors have four years of college, followed by four years of medical school, followed by an internship, then they go on to specialize in one area of medicine, they think that they know more about ordering tests than we do. Your Daughter has CF and she is your Daughter so you know best. Keep up the good work.

If you need more support feel free to ask.

Bill

 

[Aboveallislove]

Bill, doctors may have more education and training, but they do not know everything and they do make mistakes. Second opinions make perfect sense and hearing from other parents what they faced and how there doctors handle helps assess whether the doctors recommendation makes sense and whether to see someone else. I'm coming from this as a mom who called two times a week for months because something was wrong gi wise and they scheduled a consult with go three months out and indicated it wasn't of urgency. We ended up in re and hospital with dios. Since then the gi pushed antehysyimine for all the gi problems and I insisted that something was still wrong and that when things were going well there was no trouble. Had I gone along just because he was the learned one and me the mom, they would have added an unnecessary med ...unnecessary because after much pushing we tried other things and now have best gi we've had in 4 years. Moms who question and ask don't think they know it all....they think they know their children better and recognize doctors aren't perfect and want to see others experience. Please don't insult folks who come here to try to get added information to discuss the best treatment and make an informed decision, since as parents we must be the ones giving thei for deco sent.

 

[MotherofCFBoy11yrs]

Printer, I find tirades against mothers (not fathers?) tiresome.

My son eats big breakfasts because he eats hardly anything at school. He might have a full meal, like a stir-fry or a stew, usually with rice, or tacos etc. in the morning. I think rice is especially good for weight gain (basmati has the lowest GI) and it's easy on the gut.

I'm against unnecessary tests as well, but colonoscopy may be warranted... I wonder if the doctor wants to screen for bowel cancer as well because it is common in CF? I've read articles urging for more frequent screening. My son has not had a colonoscopy yet and I would be interested to know how useful fecal tests are in diagnosis. I've also read about pillcams, which would be a nicer option I think.

 

[Printer]

It has been said, out here, that Printer does nor suffer fools easily. Any parent who thinks that they know more than a CF Specialist, Mother or Father, is a fool. Any parent who thinks that they know more than the CF Specialist and stays with that Doctor is a bigger fool. Any parent who prevents the necessary care that their child requires is an idiot and possibly a criminal.

I was in the 93rd percentile in the GMAT's (Graduate School Exam's) and I am well educated. However, even having CF for 74 years, I don't know as much about CF as my CF Doctor and I never will. I continue to be amazed that a parent, for example, of a 16 year old child (having been in the CF World for only that amount of time) feels that she knows more than the child's CF Specialist. Since my diagnosis at age 47, I have had five CF Doctors (three men and two women). Only once did I "fire" one of these and then only because of a lack of communication. Never because of their understanding and treatment of my disease.

Mother:
If you would take the time to research my posts, you will find I have expressed opposing opinions to both men and women. You will find that I have given support to Mothers much more than to Fathers, perhaps because more Moms than Dads post here.

Love:

You don't need to remind me of your child's history and I think that you know that. I know for a fact that you would never advocate "breakfast" to cure a CF Issue.

Bill

 

[Printer]

Mother:

I have been on this site since 2009, you have been here for about 10 months. I have a long history of posting, almost 1400 posts. Unless you have taken the time to become familiar with my history, I find the comments that you directed to me (mothers not fathers) both uninformed and rude.

You are entitled to your opinion but you are not entitled to your own facts.

Bill

 

[RobinB29]

I understand doctors know more but they do not know everything. I suffered for a year with various GI symptoms, weight loss, vitamin deficiencies and pain while my CF docs played musical enzymes before a GI found I also have Celiac disease. I then suffered for months two years later because my body was cross-reacting to dairy proteins the same way it does to gluten, which is common among Celiac sufferers while my rheumatologist and three CF doctors scratched their empty heads and suggested it was fibromyalgia. (My PCM, an internal medicine specialist and Celiac expert figured it out eventually.) When I was 18 and losing weight from constant vomiting I had numerous tests and listened while my CF docs argued possible causes at the foot of my hospital bed until a new doc came in the room and told me I needed nexium because my stomach acid was eating my pills before they could work, (she was right and the other docs visibly scoffed at her and informed her I didn't have heartburn). Within a month on nexium I gained back my list weight and have been on it ever since. I have lived in five different states and been to as many CF clinics in the last ten years and every place is different and if you put all those docs in a room together and told them to agree on a treatment for one patient there would be fist fights. I'm not saying they are incompetent, I'm just saying there is a reason they call it "practicing" medicine.
Heathercrittendon: ignore printer, he feels some type of authority due to his age and I'm happy for him that he's had such good fortune with his CF doctors but these people are doctors, not Gods, trust them but do your own research and ask questions and if you feel something is wrong pursue answers.
Personally, if your daughter hasn't been tested for Celiacs get tested, it's a commonly missed illness and the genetic population is the same as those with CF, as are the vitamin deficiencies and symptoms. Currently 3-5% of the CF population has been diagnosed with Celiacs but that number might be higher if more doctors considered testing when a CF patient doesn't respond to typically affective treatments.
I would also consider adding nexium or protonix to help enzymes work effectively.

Printer: I would hope that someone your age would spend their time and self-proclaimed expert knowledge becoming a positive uplifting source of support to the CF community but if that's not something you are capable of perhaps you should seek mental help to determine why acting in such a way to strangers is something you feel you must do. Basically, what I'm getting at is don't be such a tool. People come here for support, not judgement.

 

[Printer]

Another new member (February 2014) commenting on my nearly 1400 posts without reading them.

Two things Robin, first I am not a "self Proclaimed expert", quite the opposite, my Doctors are the experts and because I listen to them I am 74. Other than living with this disease for 74 years I have no expertise at all. Second, I believe that I am "a positive uplifting source of support" but I will be dammed if I will support any parent who chooses to withhold tests, medicine or treatment from a child.

When someone posts here, (including you and I) we are inviting comment from everyone out here. You don't need to like my comments nor do I need to like yours. It is when you reduce yourself to name calling you become offensive.

I will nor support parents at the expense of a fellow CF Patient. If you, or others, choose to ignore the "child at risk" it is certainly your call.

Bill

 

[nmw0615]

In my opinion, it can't hurt to ask for another opinion. It might also be a a good idea to talk with your current specialists about other things your daughter could try before the colonoscopy. Maybe 3-4 weeks of breakfast and a better lunch. If things improve, great! If not, try something else.

I have often asked for alternative therapies in place of larger operations. As long as it is not life threatening, trying other methods before going in for a colonoscopy couple be a way to go.

 

[LindaJ]

Where are the really good GI doctors that truly know how CF affects the gut? My daughter is 28 with mainly GI issues and suffers more and more frequently with gastroparesis. I would really appreciate some names & locations of good doctors.

 

[Printer]

Linda:

Google Steven D. Freedman, MD, PhD. He is at the Beth Israel Deaconess Medical Center in Boston. I understand that Boston is a long way from where you live but the trip vs a lifetime of pain and discomfort is worth it.

Bill

 

[TreasureGoddess]

Also you can ask your CF docs to recommend someone that works with CF patients. We had a great deal of frustration working with a GI dept that didn't play nice with the CF team at our previous hospital. Both just blamed the issues on the other cause "the lung issues are causing this...." or "the GI is causing this" and neither seemed to want to treat the situations as systems that interact with each other in the same body. We now work with a GI doc that works WITH adult CF patients (my kid is 14 now but was 11 at the time we switched) and the doctors work well together and consult each other when issues arise. Ask for recommendations from others here on the forums, from your CF docs and see what you can find out. Also traveling for an initial consult may be worth it as they can come up with a general game plan and you can possibly see someone local periodically and check in with the Boston docs when you need to. Good luck! You shouldn't have to suffer, we went years being told that's just what you deal with when you have CF. My kid was basically curled in a ball on the couch in pain for days at a time. The new cf & gi team said that's not right. Go get yourself some answers and some new things to try.

 

[Printer]

mnw0615:

When did a colonoscopy become a "larger operation"?

Bill

 

[nmw0615]

Bill, I mean in comparison to treatments that are not invasive and do not require anesthesia. Obviously a colonoscopy is not a large operation compared to major lung surgery, but when compared with something like a diet change, it is.

 

[Printer]

It bothers me that this Mom is looking for other excuses and permission to overrule the Doctor. CF Patients can have many problems that can be detected by a colonoscopy.

 

[Imogene]

Dear Members of this thread,
I always read all the posts and I have to admit, I receive the most complaints about Printer.
When I started this site, back in 1996, my partner (who had CF) had not heard of anyone living very long...and then we heard of someone who was 70. This was a miracle! I think he lived in England and eventually he joined the site.
Today, we have a few men in their 60's and 70's who post regularly! I have even had complaints that this wasn't "realistic"...giving false hope.
In the early 2000's some of you may remember I heard Doctor Tom Fergusen speak. He is the godfather of the e-patient.
One of my favorite things he said is patients will treat their doctors as gods, partners, and even just suppliers.
At the beginning of the Internet health communities,almost noone treated their doctors as partners.
Now, fortunately we see it all the time here.
As for Printer, he has found doctors he can treat with utmost respect. He has his "Irish" personality, many of you look past that, but for me, he keeps many conversations going and his presence is a signal of hope for those 2000 people come to this site every day and they are looking for hope.

I am hoping that you will all consider where you are with your doctors and continue this valuable conversation.
If you decide that this "isn't for you". Know your input is valuable and you will be missed.
Salt and Light,
Jeanne

 

[Printer]

Imogene:

I am not surprised that people out here question my age. I do find it interesting that nobody ever had the willingness to challenge me personally. In doing so, however, they are questioning my honesty and veracity. This is unacceptable.

I would be willing to email to you copies of the letter from the Lahey Clinic in Burlington, Massachusetts, describing in detail my original diagnoses of 1987. I could also send a copy of the letter from Genzyme to Massachusetts General Hospital showing the results of my Full Cystic Fibrosis Sequencing. Additionally I have a letter, from Boston Children's Hospital, dated 2012 diagnosing my Cystic Fibrosis Related Diabetes. I could also enclose a copy of my Massachusetts Drivers License and if this is not enough a copy of my Passport.

I really don't care if people don't agree with my posts, I am offended by questions of my honesty and veracity.

Bill

 

[Imogene]

It seems like this thread has already been "hijacked".
So I'll offer a cartoon I made after watching the movie: "Dallas Buyer's Club".

Ron Woodroof was an Aids patient in the 1980's and 90's.
He couldn't get the help he wanted in the Health care system and he became his own supplier!

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