Jessica(age 4) spent another 4 days in the hospital. We were there 2 weeks ago. They tested her for cystic fibrosis because she has so many signs. I have heard of this, but no nothing. We don't have the results back yet, because they had to send them to a children's hospital(A.I. DuPont). She does have the severe asthma and she had the pnemonia again. The hospital this time around did a lot more testing and want to look into things more with her. If anyone has been through this, please share your experience. She was such a good girl when they did all her blood work, x-rays, and with her IV. I really don't know what all to type or put, because my head is going in circles. I want to thank you now for any advice.

By Trina on Tuesday, April 8, 2003 - 04:11 pm:

{{{Jessica and Jenn}}} No personal experience with CF but wanted to give you hugs. I don't know anything about it but did a web search. Found this article at medem.com.

What Is Cystic Fibrosis?

Cystic fibrosis is a disease that mainly affects the respiratory system (airways and the lungs) and the digestive system (stomach, intestines, colon and other organs involved in the digestive process). Cystic fibrosis involves changes in the chemical properties of mucus, causing thicker-than-normal mucus that can lead to obstructions in the respiratory and digestive systems.

In the respiratory system, the abnormal mucus obstructs airways and also creates conditions that lead to repeated infections in the lungs.

In the digestive system, the abnormal mucus can obstruct ducts in organs involved in digestion. Cystic fibrosis can interfere with the normal processes of the liver, the pancreas (the organ that secretes the hormone insulin, which the body uses to break down sugar and that produces digestive enzymes) as well as other organs that are part of the digestive process. This makes it difficult for persons with cystic fibrosis to effectively digest food and absorb nutrients.

Managing the Disease

Antibiotics for lung infections caused by bacteria.

Decongestants, bronchodilators (drugs that open airways congested with mucus) and anti-inflammatory drugs.

Chest or back clapping (to help loosen mucus from lungs) and postural drainage (to help drain mucus from lungs).

Pancreatic enzymes (to help with digestion).

A diet rich in proteins and calories.

Vitamins and other dietary supplements (to add more nutrients to the diet).
What Are The Signs and Symptoms of Cystic Fibrosis?
Since cystic fibrosis does not affect everyone in the same way, a person with cystic fibrosis may experience only some of the following symptoms.

An infant or child:

May have a delay (more than 48 hours after birth) in the passing of meconium (their first stool).

May have foul-smelling, pale and greasy stools.

May lose weight (because of difficulty absorbing nutrients).

May appear out of breath.

May have frequent wheezing.

May have a persistent cough that produces thick mucus.

May have frequent respiratory infections, such as pneumonia and bronchitis.

May have stunted growth (because of chronic malnutrition from difficulty absorbing nutrients).

May have abnormally salty sweat.

May become easily dehydrated.

May have nasal polyps (fleshy growths inside the nose).
People with cystic fibrosis may also experience liver disease, diabetes, inflammation of the pancreas and gallstones.
Inheriting Cystic Fibrosis

Cystic fibrosis is an inherited genetic disorder. A person inherits the disease from their parents. The gene that causes cystic fibrosis is a recessive gene, which means in order to get the disease you must inherit the gene from both of your parents. If you only inherit the gene from one parent, you become a carrier (you will not get the disease, but you can pass the gene on to your children). If you are a carrier and you and another person who is a carrier have a baby together, each child will have a 25 percent chance of having the disease and a 50 percent chance of being a carrier.

How is her asthma being treated? Have you seen an Asthma/Allergy specialist and had her tested to learn what her triggers are? Do you have an action plan? I'm asking all this because of my experiences with DS's asthma. This past Oct. he had a severe asthma attack that landed him in the hospital for 3 days. He had never had asthma before, or so we thought. Turned out his previous boughts with croup and pneumonia were actually undiagnosed asthma. Two weeks after his first severe attack, before he was started on an asthma maintenance plan, he had another attack that warranted a visit to the ER. Once getting him tested, learning his triggers, taking precautions and following the asthma action plan created by our Asthma/Allergy specialist, DS has been fine. We now know the symptoms and by following the plan, are able to nip attacks in the bud.

Sorry to hear your DD is going through this. I hope answers are found and she's healthy and back to normal soon. We're here for you! Please keep us posted.

By Jenn on Tuesday, April 8, 2003 - 04:54 pm:

She is on Albuterol 1.25mg via neb. every 4 hours, Prelone different amounts for 3 weeks, Cefltin(sp) 4ml by mouth 2 times a day. We also continue the back and side clapping on her for the next 4 days. I'm not sure of all the meds. they had on her in the hospital. They did blood work for 3 days and checst x-rays. She goes May 22, for the allergist appointment. No she doesn't have an action plan. The doctors found out she had asthma when she was 2 and we have treated her ever since. She is on vitamins because of the nutrients. They also gave me mineral oil for her to help her have a BM. She weighs 29 lbs. They tested her because she is showing signs of the cystic fibrosis. We go next Wed. for another doctor appointment also. I will keep you posted and thank you.

By Truestori on Wednesday, April 9, 2003 - 03:53 pm:

Jenn,

I hope everything turns out ok. It sounds like your little one is having a rough time(mom included) Take care and I hope the allergist has some good suggestions.

By Jenn on Wednesday, April 9, 2003 - 03:56 pm:

The allergist called and we go in tomorrow at 9.

By Trina on Wednesday, April 9, 2003 - 04:16 pm:

Good, I'm glad to hear she's getting in earlier than expected to see the allergist. Hopefully it will shed some light. {{{HUGS}}}

By Ginnyk on Thursday, April 10, 2003 - 04:25 am:

Jenn, it's not much comfort, I know, but there is a really bad kind of bronchial asthma, caused by a virus, going around. Three people in my office have it in their families.

And, as to CF, my cousin married a man with three kids all with CF, and they are all adults, healthy as long as they take precautions, and living productive lives. It was a pain doing all the things that needed to be done to keep them healthy, but she managed and they all turned out well as far as health issues are concerned.

By Jenn on Tuesday, April 15, 2003 - 09:09 pm:

Jessica goes on April 21, for a sweat test(blood showed a trace) and April 22, for an x-ray of her esophogus(sp). I can't remember what the x-ray is called, but it's the one that she drinks the chalky stuff. She is allergic to mold and that was it. They want to see if she may have a hole inside of her that would cause the problems breathing and her being so small. I called the health department and we are going to be contacting our homeowners insurance to see if they will cover the mold testing in the house. We need to provide them with all her medical paper work and hopefully they will cover any damages, testing, etc. This is going to be a long road, but we will get through it.

By Karen55 on Tuesday, April 15, 2003 - 09:11 pm:

Good luck, Jenn.

By Mechelle on Tuesday, April 15, 2003 - 09:32 pm:

{{{{{{{{{HUGS}}}}}}}}}}}}}}

By Trina on Wednesday, April 16, 2003 - 07:19 am:

{{{{{Jenn}}}}} Is she getting an upper GI? Is that what the x-ray is called? DD had one as an infant. Mold, that's a tough one. Did the allergist recommend getting a HEPA filter air cleaner in her room? DS has one and it has helped his asthma tremendously. Of course in your case, mold testing and finding the source would be the ultimate goal. Many hugs and prayers. We're here for you!

By Jenn on Wednesday, April 16, 2003 - 09:08 am:

I don't think it is called an upper GI. It is the one where she drinks the chalky stuff and the x-ray watches as it goes down. It may be an upper GI, but I could be wrong. The allergist told me about making her room the sterile environment and doing the HEPA filter in there. No stuff animals, matteress and pillow covers, basically keeping the room spotless of everything. Thank you for being here. Last night things finally hit and now I feel the emotions kicking in. We have a regular doctor appt. today at 2:45, and we talk about meeting with a nutrietionist(sp). They will also just be doing a check up with her.

By Sandie on Wednesday, April 16, 2003 - 09:23 am:

(((((((((Jenn)))))))))))
I haven't been on in a while and this is the first I have read about this. I hope that everything works out for Jessica. I hope that you get answers to all your questions. I will be praying for you!

By Jenn on Wednesday, April 16, 2003 - 12:14 pm:

The one test is called a barium swallow.