Printed Materials

Fact Sheet

FAQ Brochure # 2

FAQ Brochure # 3

FAQ Brochure # 4

FAQ Brochure # 5

FAQ Brochure # 6

FAQ Brochure # 7

Myths about Hydranencephaly

Myths Brochure

Dear Doctor Letter

Asthma/Reactive Airways Disease

In our most recent survey 20% of those responding said that their child had Asthma or RAD. I believe that the incidence is much higher than that. At some point almost all the children have trouble with breathing.

The following are links to the information on Asthma, which is included in the book "Caring For Your Child With Hydranencephaly".

Asthma Information
What is asthma?
http://www.cincinnatichildrens.org/health/info/allergy-asthma/diagnose/asthma.htm

Early Warning Signals: Asthma Always Gives a Warning
http://www.lungusa.org/site/pp.asp?c=dvLUK9O0E&b=22880

Asthma: difference between it and RAD
http://www.parentsoup.com/experts/ped/qas/0,,416595_416747,00.html

Asthma Medications
Five Asthma Medication Groups
http://www.lungusa.org/site/pp.asp?c=dvLUK9O0E&b=22883#leuko

Albuterol Inhalation
http://www.cincinnatichildrens.org/health/info/allergy-asthma/medication/albuterol.htm

Fluticasone Inhalation

fluticasone.htm

Ipratropium Bromide Inhalation
http://www.cincinnatichildrens.org/health/info/allergy-asthma/medication/ipratropium_bromide.htm

Pulmicort (Budesonide)
http://www.respuleskids.com/consumer/resources/faqrespules.asp http://www.respuleskids.com/consumer/about_respules/instruction.asp

Salmeterol
http://www.cincinnatichildrens.org/health/info/allergy-asthma/medication/salmeterol.htm

Singulair® (montelukast sodium)
http://www.druginfonet.com/index.php?pageID=pi_mfr/ppi/merck/singulai/singulai.htm

Sodium Cromolyn Inhalation
http://www.cincinnatichildrens.org/health/info/allergy-asthma/medication/sodium-cromolyn.htm

Theophylline (Bronchodilator)
(Theodur, SloBid, Theochron, Theo24, Uniphyl)
http://www.cheshire-med.com//programs/pulrehab/asthma/a4theo.html

Xopenex
http://xopenex.drugs.com

How To Take Asthma Medications:
Aerosol Therapy Treatment
http://www.cincinnatichildrens.org/health/info/allergy-asthma/home/aerosol.htm

Asthma Personal Experiences:
Kayda, who died in 2000 at the age of 11 ½: When Kayda came to live with me at the age of 4 ½ her breathing was very bad. She constantly sounded gurgly and was often wheezy. She was on Intal & Ventolin given by nebulizer. However, she wasn’t being given either appropriately so it wasn’t that effective. After a month or so I learned that her breathing was much better if she was lying down on her side with her head elevated. So that’s the way she spent a lot of time and her breathing was just fine. From that time on, the only time she was wheezy and her asthma acted up was if she had a cold virus. Most of the time when Kayda had a cold she ended up in hospital. The Drs always assumed she’d aspirated and had pneumonia but almost all of the times it was found to be a “simple” cold and asthma. After her first couple of hospitalizations her pediatrician put her on Pulmicort. We tried taking her off of it several times but she’d always start to wheeze fairly quickly so she just stayed on it for the rest of her life. When she was ill she needed ventolin as well but most of the time did fine without it. As she got older her asthma became less of a problem but she continued to get Pulmicort.

Elizabeth, age 16: Elizabeth's Asthma began when she was 8 yrs. old. A year after her shunt failed and it was removed. She has been using Albuterol 3 times a day every day until 2 yrs. ago. Now it is PRN and I only use the Tobrymycin PRN. She takes Singulair every night at bedtime and she has been on that for 2 yrs now. She is also using Flovent 220 grams 2 puffs twice a day. That is also 2 yrs. now. She has been getting Chest PT for 4 years and that is the preventative that really takes it's toll on the parents if you have to do that on a daily bases. Now we have the Vest and that is less work for mom and dad.

In the past Elizabeth has used Cromolyn, Ipratropium Bromide and Albuterol. She went through a lot of Asthma meds to see which one worked for her. She became immune to the other meds so Albuterol is the one we are using now and forever. She also uses the Bi-Pap as needed for breathing. For her the worst times are in Spring and Fall. Humidity is the kicker and we live in the South. Winters aren't bad but if the weather pattern goes wrong, then here comes the Asthma. I watch the weather Channel daily to make sure Elizabeth won't have a bad breathing day. I have never watched that channel as much as I do now. I know this isn't much to report about but that is what Elizabeth takes and what helps her.

Jonah, age 2 ½ : When Jonah was under a year old he was sick with RSV three times one season. Finally the doctor put him on Flovent 2 puffs twice a day. He also takes Duo nebs (atrovent and Albuterol mix.) PRN his sicknesses haven't been as severe as before. He also is on a ventilator at night I think it helps keep the airways expanded.

Other pages in this section:
Asthma Glossary

Subscribe to the Hydranencephaly Mailing list

August 16, 2001- January 12, 2005

This website is funded in loving memory of Jason S. by his mother Kammy

The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

Please report any broken links or missing photos to angelbearmom@shaw.ca