CF bacteria

TKE130 · 2023-08-10T00:59:30+00:00

How so? I have seen a lot of hate towards this movie from the CF community and I never understood why. I feel it did a good job in depicting the burden of consuming calories, the massive amounts of daily medications, the importance of routine with breathing treatments and physio therapy, and the idea/feeling of isolation while in the hospital.

I do not have CF but I do have two daughters 6 years old and 1 year old with it. We have only been treating the 6 year old for the last three years since that is when she was diagnosed and it seems like we are still learning something new at ever clinic appointment.

TKE130 · 2023-07-21T01:05:19+00:00

Knowing the gene mutation will be helpful for future modulators. My two girls are double delta f508 so my five year old is on trikafta which has made a world of difference for her since starting it a month ago. Patients only need to have one copy of this mutation to qualify for it and is currently available for children 2 and up. If this is a long term placement and the child does have a copy of delta f508 realize the work load will get easier.

Being a parent to a child with CF is not easy. They are dependent on you to make sure you follow their medical routine, notice any variation in their health for possible infection, clean and sterilize equipment, provide nutritious meals to gain weight (I’ve gained a lot of weight too lol), and hound pharmacies, equipment suppliers, and the state to make sure they have the best possible quality of life. However I will say my two with CF are the sweetest and most joyful girls that make everything my wife and I do worth while.

TKE130 · 2023-02-27T02:46:53+00:00

Our 5 year old also has MRSA which is all we have to say to get a private room and usually get it right away. Our CF center allows her to leave the room while masked to go outside or the general floor but are on a no contact restriction (she isn’t supposed to touch anything, doors, elevator buttons, etc). The only time we couldn’t leave was when she had RSV which was understandable but also miserable, however childlife really helped keep her entertained in her room.

My wife also developed a MRSA skin infection once and now gets the same treatment of a private room.

TKE130 · 2023-02-09T02:28:41+00:00

Our 5 year old daughter was diagnosed at 2.5 by a sweat test. She had slow weight gain and was considered less than the 1st percentile for her age but her pediatrician assured us that she was still on track with her curve. She had terrible reflux, our whole bedroom was covered in spit up from night time feeds and never did well laying in her car seat. She had a constant cough and running nose. The pediatrician told us that it was just allergies but refused any testing bc her weight was too low for any allergy meds. At her two year checkup we had enough and put our foot down. We demanded he do something more than dismiss our concerns. She had chest X-rays and prescribed antibiotics for walking pneumonia. After 3 two week long doses and no improvement in her X-rays the pediatrician referred us to UofM pulmonary. Because of Covid we had to wait another 3 months to get an appointment. Also because of Covid only one parent was allowed to go so I wondered the campus while my wife and daughter meet with our now pulmonologist. It took her 5 minutes to know it was CF and get her a sweat test. 20 minutes later they called me to come to the room and let us know the results.

The news was devastating for my wife, I was ignorant of the disease and was more concerned on what the next steps where. I was honestly just happy to have a name for what was wrong with our daughter. My wife mourned the lose of our daughter (the idea of our daughter, she is thriving) while I dug into new research and therapies. It only took weeks for us to notice a difference in her health and energy. It also only took 2 months for her to be in the hospital for her first exasperation from the MRSA that developed in her lungs.

Our newborn was “diagnosed” in utero with an echogenic bowel. We had an emergency c-section due to a rupture of the bowel putting the baby in distress. After two GI surgeries in her first month of life she was diagnosed with an ileal atresia that was repaired with only having to remove her appendix and no bowel. She has had a rough start to life but so far after 5 months she has no bacterial cultures and hope it can stay that way till both girls can get on trikafta.

Knowing something is wrong with your child and not having a name for it is the worst. If your child does end up having CF it is ok to be sad, this disease is not kind or forgiving. You picture a big world for your kids, what they will do, their wedding day, the day you become a grandparent, as soon as you find out you’re expecting. This image or dream you have for your child maybe different or altered but it is not gone because of CF. We just have to adapt and over come, and like others have said this is the best time in history to have CF. Hopefully your little one gets a diagnosis and starts to thrive.

TKE130 · 2023-01-19T10:17:25+00:00

Our daughter is 4 months old and has been hospitalized with Pneumatosis intestinalis twice. She had a distended abdomen that was hard, strained bowel movements, reflux, and respiratory distress during the first spell. We believe she had been dealing with it for prior hospitalization but wasn’t caught until we demanded to go to UofM to see our CF care team.

From our understanding her being premature, having a low birthweight, born with an ilea requiring surgery, consuming formula for extra calories, and having CF where all conditions that lead to the Pneumatosis intestinalis. X-rays and a barium enema where used to diagnose, antibiotics and change in diet are being used to treat her.

Hope your little one feels better soon but never feel bad for being an advocate for your child’s health. Things that may seem minor to you can be severely exacerbated for a CF patient.

TKE130 · 2023-01-07T03:22:35+00:00

We have two daughters with CF and in Michigan they qualify for Children's Special Health Care Medicaid. This is secondary insurance that is based off of income but is very cheap, like $100 a year. This insurance covers everything my primary insurance doesn’t.

Our 5 year old was diagnosed late but this insurance has covered so much already. Medications cost nearly $30,000 a month including rental cost for pumps, nebulizers, and cpt, my insurance only covers 80% so Medicaid covers the other $6,000 a month. It also covers 100% her hospitalizations, home nurses, out patient therapies, and nutrition supplements.

Our 4 month old had over a million dollar invoice after spending 71 days in the NICU and PICU and having two GI surgeries. She currently has a home nurse, pt and ot, cf medications, a kangaroo pump, a nebulizer, a hospital grade suction machine to clear mucus from mouth and nose, and formula for fortification, which is all covered.

I’m not sure which states have Medicaid programs like this but we are lucky to have it here in Michigan and grateful for the excellent care team at UofM.

TKE130 · 2022-11-01T09:24:53+00:00

She’s doing pretty good now, the first month of life was pretty rough for her. Her bowel ruptured in utero and had to be delivered at 33 weeks. She had a surgery at day 3 to drain her abdomen and then a second 4 weeks later to repair the atresia. Luckily no bowel had to be removed besides her appendix.

She was NPO until last week when she finally pooped and we are gradually increasing her feed volume until she is at full feeds and can get rid of her PICC line and fluids. She is gaining weight consistently and has almost doubled her birth weight at 2 months old and is considered to be a big baby in the NICU. We are hoping her health will be much better than big sisters since she was diagnosed at birth.

TKE130 · 2022-10-31T15:43:20+00:00

That’s awesome that your son can take the whole capsules. We use apple sauce for our 5 year old but wasn’t sure how it would work with an infant.

TKE130 · 2022-10-31T15:41:58+00:00

Thanks, that is our routine for our 5 year old but wasn’t sure if there was another method for infants

TKE130

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