Allergic reactions to Antibotics
Hi.. I have posted before that last Oct. a year ago this month, my grandson had a terrible reaction to the antibiotics the doctors believe it was the cefepime and possibly the vancomycin. He had steven Johnson syndrome, I cannot tell you how terrible it was for my family but most of all for Connor. He did recover and we do feel lucky because it could have been a lot worse he responded to the steroid treatment, but it took over a month for him to recover.
Since that time my grandson Connor has had a reaction to 2 other antibiotics. He has a allergist that follows him, a derm specialist and his CF team. The docs told us C...
Source: Cystic Fibrosis Families Forum - October 13, 2015 Category: Respiratory Medicine Authors: Carol H Tags: Families Source Type: forums
Elastase Test--- with or without enzymes??
My son's GI ordered his first fecal elastase 1 test today. He has been on enzymes for a few years as an "experiment" to see if they would help his constipation & promote weight gain, but he's never been given a dx of either PS or PI. The GI said that we should stop the enzymes for about a week before the test so the results will be accurate. From what I've read online the enzymes won't affect the test, but I would hope that the Dr. knows what she's talking about. What have you done before collecting a sample? Should I stop giving him enzymes? Thanks! (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - September 30, 2015 Category: Respiratory Medicine Authors: ByGrace Tags: Families Source Type: forums
Freebies
I have LOTS (100?) of disposable, sealed in the package, nebulizers for inhalation treatments.
All have the 7 foot hose, and mouthpiece.
They are mostly the acorn, generic kinds but there are some larger 10 cc nebs for things like Colistin that has a larger volume and foams some.
They are the green HUDSON II (2) Updraft nebs up for free.
Also, 10 boxes of 100 One Touch Ultrasoft WHITE color LANCETS for pricking your finger for a blood glucose reading.
100 sterile lancets per box.
The box says:
For use with all OneTouch Penlet & OneTouch UltraSoft brand automatic blood samplers from LifeScan, and most other blood samp...
Source: Cystic Fibrosis Families Forum - September 29, 2015 Category: Respiratory Medicine Authors: GoryLori Tags: Families Source Type: forums
A conversation with my non CF'er
My son is preparing to apply for college soon. He is sorting out what to write for his college essay. He has decided this year that he wants to focus on science; likely start as a Biology major.
He said for his essay he wanted to write about his sister with CF; brainstorming last night. He said he is very interested in genetics because of her. He used the term "Precision Medicine".. I wanted to encourage him to write not just about his sister but about himself..That he has a level of empathy; because of her situation. I actually don't even think he has absorbed all the "emotional" stuff but is ...
Source: Cystic Fibrosis Families Forum - September 22, 2015 Category: Respiratory Medicine Authors: Rebjane Tags: Families Source Type: forums
Welcome to my New Granddaughter
My daughter had a BABY GIRL!! Her name is Sydney Ann she was a couple weeks early but mom and baby doing great!! She was 6lbs and 9 oz she seems so little!! Been a while since we have had a newborn! I feel so blessed she is perfect! Connor is my grandson he is 7 years old he has CF and he could not be happier!! He loves to hold her, rock her and sings to her. But he does not want us to hear so he sings very softly it just melts my heart! (L) pics on my profile!
Connor had a very rough year last year but now he is doing great!! Back to school in 2nd grade and very happy, smart little guy!
because of the rough year Conn...
Source: Cystic Fibrosis Families Forum - September 22, 2015 Category: Respiratory Medicine Authors: Carol H Tags: Families Source Type: forums
Question about Cultures - When is it concerning?
I've posted a few times but the quick background is I have a 15 month old son dx CRMS (one disease cause and one variable mutation). He just switched from one clinic that was being reactive to a more proactive clinic last month. The question I have right now is about throat cultures. He has never had a completely clear swab but so far we have been told that nothing he has cultured needed to be treated. I have trusted that and I do still trust that, but I guess I am wondering when a positive culture would warrant treatment or when a positive culture may be something to be more concerned over. He has never cultured pseudo ...
Source: Cystic Fibrosis Families Forum - September 21, 2015 Category: Respiratory Medicine Authors: emason Tags: Families Source Type: forums
Best nebulizer recommended for Tobi and Pulmozyme
My daughter who is almost 5 just recently started doing Pulmozyme and will start Tobi in a few days. Up until now we were doing her nebs using a device that is not specifically recommended for CF meds. I want to look for something online (I live in the middle east and we don't have these types of nebs available locally) that would be the best for use with these medications but I have no idea where to start. Can you guys recommend something for me? I want a device that is known for its best delivery of these medications and if it's light-weight and can operate on batteries as well as a power cord then this would be a plus.
...
Source: Cystic Fibrosis Families Forum - September 20, 2015 Category: Respiratory Medicine Authors: MyBabyCeline Tags: Families Source Type: forums
Looking for a thread started by a dad
The dad was lamenting that his young son had lost 40 points PFT in between office visits.. I think it was about two years ago.
Thanks for any one who can help me find the thread.
Salt and Light,
Jeanne (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - September 6, 2015 Category: Respiratory Medicine Authors: Imogene Tags: Families Source Type: forums
Anyone willing to do this?
I have an idea for cf awareness and donations. Basically piggybacking on the ALS challenge, having a "CF Puddin' Dump Challange". I feel the use of pudding (mucus) represents CF the best.
Anyone willing to do this challange? Or have any to add? (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - August 17, 2015 Category: Respiratory Medicine Authors: jcro125 Tags: Families Source Type: forums
Gram stain and culture results for sputum are confusing!!
So my daughter's doctor asked us to test her sputum to see if she has an infection because she's been coughing for too long now (about 2 months). She's 4 and a half years old and this is the first time we have to face this so we're still not familiar with it.
I got her results on the phone and was told that the gram stain showed no WBC's or neutrophils, but the culture stated that she has Haemophilus Influenzae which was also tested for sensitivity and resistance. I guess my questions are:
Does the fact that there are no WBC's or neutrophils rule out the possibility that she has an infection? If that's true then how di...
Source: Cystic Fibrosis Families Forum - August 15, 2015 Category: Respiratory Medicine Authors: MyBabyCeline Tags: Families Source Type: forums
what is the tips of teeth whitening
My teeth is not white but i want to white it. but i can't. If there are any tips, pls tell me. (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - August 14, 2015 Category: Respiratory Medicine Authors: mandaji11 Tags: Families Source Type: forums
School
With school starting for some in the next few weeks, might be a good idea to post some helpful hints. Here's a link that I found especially helpful. Our own Lisa Greene's site:
http://www.happyheartfamilies.com/SchoolIssues.html
Each year I get a packet of info together for the school as well as a letter to teachers regarding any concerns that may or may not come up. First and foremost that our child is a normal kid who just needs a few extra things to keep him happy and healthy. Our primary issues were making sure he got enzymes and dealing with more than one child wcf in the school. (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - August 6, 2015 Category: Respiratory Medicine Authors: Ratatosk Tags: Families Source Type: forums
Travel question (a little wierd)
So we are going on a trip to across the country . Getting ready packing, daughter with CF has a slight cold. Few coughs, did complain of a sore throat this am, went away with drinking fluids. If we were staying home I would not be concerned at all; would just keep an eye on her. But; we will be flying etc. I was wondering if it would be really weird if I packed my stethescope in my luggage; just in case things go south. I do listen to her sometimes(I'm a nurse). Wondering ii would cause a problem with screening for security. THough I will be bringing her VEST, nebs, meds compressor...Is it silly? Kind of like if I...
Source: Cystic Fibrosis Families Forum - July 30, 2015 Category: Respiratory Medicine Authors: Rebjane Tags: Families Source Type: forums
Fibrosis in the stomach lining.
Can anyone give me any insight on whether fibrosis found in stomach lining is DEFINITELY CF or not?
My daughter's GI did a scope and biopsy last Friday and received the results today. She said they found "fibrosis in the stomach lining" and she would have to do further research to find out what that meant. I, of course, could not stop myself from googling and over and over found my queries leading to CF. They also found reactive changes of the esophagus. She is 19 months old with IgG-deficiency, they were doing the scope to look for evidence of celiac's. She has been chronically constipated since we switched fr...
Source: Cystic Fibrosis Families Forum - July 30, 2015 Category: Respiratory Medicine Authors: twinmomIM13 Tags: Families Source Type: forums
New here. No diagnosis. Question about testing?
Hi. I know that you all, unfortunately, have a lot of experience and knowledge about CF so I hope you don't mind me crashing your party. :o
My son just turned 18 yrs old. A while ago, he brought this white bubbly rash on his palms to my attention. You know where I'm going with this. I did some googling and brought him to the dermatologist. He immediately confirmed my amateur diagnosis of Aquagenic Wrinkling of the Palms. My son said that they really start to hurt after his shower and the skin just falls off. The doctor prescribed some Aluminum Chloride solution to apply to his palms but my son never uses it. He has...
Source: Cystic Fibrosis Families Forum - July 29, 2015 Category: Respiratory Medicine Authors: Stacey James Tags: Families Source Type: forums
