Cystic fibrosis

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Can my child with cystic fibrosis have children of their own?

Over 95% of males with cystic fibrosis are infertile due to absence of the vas deferens (the tube that transports sperm). Males with cystic fibrosis are able to have children via in vitro fertilization (IVF). Male should consult an infertility specialist to find out more about their reproductive options. Females with cystic fibrosis may have decreased fertility, in part, due to thick cervical mucus, which prevents sperm from entering the uterus. Poor nutrition may also lead to problems with ovulation. Women with cystic fibrosis may also have to stop taking some of their medications during pregnancy, if they are unsafe for the developing baby. Women with cystic fibrosis wishing to get pregnant should speak to their cystic fibrosis specialist to discuss the impact of a pregnancy on their health.

References
  • Grigoriadis, C., Tympa, A., and Theodoraki, K. "Cystic fibrosis and pregnancy: counseling, obstetrical management and perinatal outcome." Invest Clin. March 2015; 56(1):66-73.
  • Moskowitz S.M. et al. "CFTR - related disorders." Gene Reviews. 19 February 2008. Web. http://www.ncbi.nlm.nih.gov/books/NBK1250/
  • Panchaud, A. et al. "Safety of Drugs during Pregnancy and Breastfeeding in Cystic Fibrosis Patients." Respiration. 2016;91(4):333-48.
  • CFF - Reproduction and fertility
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Can my child with cystic fibrosis attend a regular school?

Should my child with CF get a flu shot?

Should my child with cystic fibrosis get their immunizations?

Is having a cat or a dog in the house dangerous for my child with cystic fibrosis?

Why is a G-tube often placed in kids with cystic fibrosis?

How can a NG tube help my child with cystic fibrosis?

Can my child with cystic fibrosis workout?

Is my child with cystic fibrosis a candidate for a clinical trial?

Are lung transplants common in individuals with cystic fibrosis?

What is Cystic Fibrosis Related Diabetes (CFRD)?

What are the most common bacteria that are found in the lungs of children with cystic fibrosis?

Are depression and anxiety common in children with cystic fibrosis?

What is the average lifespan of someone with cystic fibrosis in the United States?

Where can I find insurance help for cystic fibrosis?

Can my child with cystic fibrosis attend a regular school?

A child with cystic fibrosis (CF) can attend a regular school. It is encouraged that they get their flu shot every year and also avoid classmates who are sick, so they don't become sick. It is important to make the teachers are aware of a person with cystic fibrosis in the classroom, since they may need to take their medications before meals and during class times. However, besides these medical recommendations, there is no barrier to children with CF attending regular schools and universities. If your child is school age, set up a meeting with the principal to find out how best to communicate the medical needs of your child to your teachers.

Should my child with CF get a flu shot?

The Cystic Fibrosis Foundation recommends that all children with cystic fibrosis get a flu shot. Children ages 6 months through 8 years may need two shots of the flu vaccine annually to fully protect them against the flu. You can talk to your doctor about getting a flu shot each year.

References
  • Moskowitz S.M. et al. "CFTR - related disorders." Gene Reviews. 19 February 2008. Web. GeneReviews
  • CFF - The flu
  • Moskowitz S.M. et al. "CFTR - related disorders." Gene Reviews. 19 February 2008. Web. GeneReviews
Should my child with cystic fibrosis get their immunizations?

Children with cystic fibrosis should get all regular immunizations. Check with your child's pediatrician to find out the schedule for immunizations.

References
Is having a cat or a dog in the house dangerous for my child with cystic fibrosis?

One study found that having a dog or a cat in the house increased the chance of wheezing and growths called nasal polyps. There was no evidence that having a cat or dog increased infections. Minimal research is available on the topic. Before bringing an animal into your home, you may wish to speak to your child's CF specialist to discuss the pros and cons of this decision.

References
  • Morrow, C.B., Raraigh, K.S., Green, D.M., Blackman, S.M., Cutting, G.R., & Collaco, J.M. "Dog and Cat Exposure and Respiratory Morbidities in Cystic Fibrosis." The Journal of Pediatrics. 2014 Oct;165(4):830-5
Why is a G-tube often placed in kids with cystic fibrosis?

A G-tube, or a gastrostomy tube, is one way in which kids with cystic fibrosis can get extra nutrients in the diet. Since most children with cystic fibrosis struggle with maintaining healthy weight and have increased nutritional requirements, a G-Tube can be a way to ensure healthy weight gain. This can help also with meeting developmental milestones for children with cystic fibrosis. Your doctor can help you find a specialist to help assess the need for a G-Tube.

References
  • Solomon, M., Bozic, M., and Mascarenhas, M.R."Nutritional Issues in Cystic Fibrosis." Clinics in Chest Medicine. March 2013, 37(1): 97-107.
  • Moskowitz S.M. et al. "CFTR - related disorders." Gene Reviews. 19 February 2008. Web. GeneReviews
  • CFF - Nutrition
How can a NG tube help my child with cystic fibrosis?

A nasogastric (NG) tube can help a child with cystic fibrosis obtain supplemental nutrition. While in many cases, children and adults with CF can obtain proper nutrition through high calorie meals, enzyme supplementation medicine, and snacking frequently, this may not be enough. As a result, a physician may recommend an NG tube. An NG tube is inserted through the nose and reaches the stomach. It can be placed in each night and then removed in the morning. Your doctor can help you find specialists in your area to find out if you need a NG tube.

References
Can my child with cystic fibrosis workout?

Children and adults with cystic fibrosis benefit from exercising daily. Both cardiovascular training (heart rate is increased) and weight training have shown multiple benefits, including helping with airway clearance. The only caution is that gyms often have many germs. So, it is important to wash hands when handling equipment that has been used by other people, to help keep from getting infections. It is important to wash hands after working out to help reduce the risk for infection.

References
  • Rand, S. and Parasad, S.A. "Exercise as part of the cystic fibrosis therapeutic routine." Expert Rev Respir Med. June 2012; 6(3):341-51
  • CFF - Fitness
Is my child with cystic fibrosis a candidate for a clinical trial?

To find out whether your child is a candidate for a clinical trial, it is best to contact your child's pulmonologist (lung doctor) and care team. Often, eligibility status is based on which genetic changes (mutations) a person has. You can learn about active clinical trials through www.clinicaltrials.gov.

References
  • Cystic Fibrosis Foundation. "Drug Development Pipeline." Web. 6 June 2016 https://tools.cff.org/research/drugdevelopmentpipeline/
Are lung transplants common in individuals with cystic fibrosis?

Many individuals with cystic fibrosis (CF) face the possibility of a lung transplant, especially as they get older. The transplantation process can be difficult for families to navigate through, as an extensive evaluation process is involved. However, it may become medically necessary once an individual's lung function has significantly decreased and extra oxygen is required. You can learn more about lung transplantation through the Cystic Fibrosis Foundation.

References
  • Morrell, M.R. and Pilewski, J.M. "Lung Transplantation for Cystic Fibrosis." Clinics in Chest Medicine. March 2016; 37 (1): 127-138
  • CFF - Lung transplantation
What is Cystic Fibrosis Related Diabetes (CFRD)?

Cystic Fibrosis Related Diabetes, or CFRD, is a complication of cystic fibrosis, which does not occur in all individuals with the disease. It can best be described as a mixture of both Types 1 and 2 of diabetes. In many individuals with cystic fibrosis, the pancreas becomes scarred, which reduces the amount of insulin produced. This is similar to type 1 diabetes. Additionally, individuals with CF may not respond properly to the insulin that they do produce- this is similar to type 2 diabetes. The Cystic Fibrosis Related Diabetes Clinical Care Guidelines recommend that every child ages 10 and older be tested yearly for CFRD through an oral glucose tolerance test. Exercise and eating a healthy variety of foods is one way to improve insulin response in individuals with cystic fibrosis. If you develop CFRD, your doctor can help you find an endocrinologist and/or dietician in your area.

References
  • Solomon, M., Bozic, M., and Mascarenhas, M.R. "Nutritional Issues in Cystic Fibrosis." Clinics in Chest Medicine. March 2013, 37(1): 97-107
  • CFF - CF related diabetes
What are the most common bacteria that are found in the lungs of children with cystic fibrosis?

According to the 2014 report created by the cystic fibrosis accredited centers, the most common bacteria found in children with cystic fibrosis is Staphylococcus aureus and Pseudomonas aeruginosa. You can speak with your doctor about how to be treated for these infections.

References
Are depression and anxiety common in children with cystic fibrosis?

Depression and anxiety may occur in children with cystic fibrosis, especially during puberty and when transitioning into young adulthood. Family members and healthcare providers should watch for signs of both of these conditions. The Cystic Fibrosis Foundation and the European Cystic Fibrosis Society helped create clinical guidelines for the screening and treatment of depression and anxiety in individuals with cystic fibrosis. These include that all children ages 12 and older receive annual screenings for both of these conditions. Talk to your doctor about this yearly screening.

What is the average lifespan of someone with cystic fibrosis in the United States?

In 1999, the average age of death for someone with cystic fibrosis was 29. With current therapies and treatments, the current life expectancy had increased in 2014 to an average of 39 years of age. Life expectancy has increased as our understanding of cystic fibrosis has improved and new medications and treatments have been discovered. You can contact the Cystic Fibrosis Foundation to find out more about treatments for cystic fibrosis.

References
Where can I find insurance help for cystic fibrosis?

One of the best ways to look for insurance help is through the Cystic Fibrosis Foundation's online "Help Affording Your Care". This online portal can direct you to resources that can help you with co-pays, co-insurance, and deductibles.

References

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