What questions after your child was diagnosed did you want/need answered immediately?

[ejwiegert]

Dear All:

Thank you so much for answering my questions and your continued support of me and my husband as we go through this journey waiting on our precious Abby to get here in August. All of the information you have provided has been of tremendous benefit and has helped us gain some perspective going into this next part of our journey together.

I have a research project that I have to complete for one of my graduate classes. I discussed my passion for this topic and stated that I had a personal need to continue my research. My professor allowed me to make this my in class research project instead fo making me focus on something new. THANK GOODNESS...as I didn't know what I could research right now that would mean as much to me.

If you have time and do not mind, would you please answer the following questions for me:

1. Once you learned a child had CF, what questions did you want or need answered immediately to help put your mind at ease? Did you get answers? Would you mind sharing?
2. What do you wish you knew when your child was first diagnosed or when you found out they had CF that you now know?
3. What was the biggest surprise or challenge for you and your family?
4. Do you have any words of wisdom for someone who is facing a CF diagnosis in a child?

If you would please provide me: The age of the child when diagnosed, their relationship to you (child, grandchild, niece, etc.), and additional pertinent information you feel you should add about the child's situation.

I do not need names or any specific information about you or your family.

If you prefer to email the information to me, please email me at ejwiegert@gmail.com with RESEARCH in the subject line so I don't delete it!

I greatly appreciate your time and efforts on my behalf!!!

Emily Wiegert

PS: If you are on some of the listserves with me, you'll see this request again. I just need a wide range of responses to make my research valid and reliable. THANK YOU AGAIN!

 

[ejwiegert]

I forgot to add...Any help you can give would be greatly appreciated by Sunday, June 18. Again, feel free to email me at ejwiegert@gmail.com with "research" in the subject line so that I won't delete it by accident!

Thank you again!

 

[Alyssa]

Emily,

Just wanted to let you know, I will be answering your questions in email ~ but it will take some time to answer them all in detail, so I may need a few days to get it accomplished.

Good luck on your project ~ that sure was great of your teacher to allow it.

 

[anonymous]

Hi Emily,

I'll do my best.

1) One question I wanted to know immediately was , Could I breastfeed a baby with CF? I was so worried I wouldn't be able to, Maggie was my second child and I breastfed my son without CF and it was one of the ways I knew I could "mother and nurture my baby" I didn't want this taken away from me too. The answer was Yes I could breastfeed and in fact the clinic recommended it.

2) What I wish i had known was that all CF clinics and docs are not equal. Clinics have certain standards but vary greatly in their philosophy of care. Some are more aggressive and some sit back and wait to treat. I wish i had been more proactive in my daughters care early on.

3) Biggest surprise: How much I would learn about life from someone who was not born yet. I found out my daughter had CF when I was pregnant with her. Prior to that I was working alot had a son and husband but really in the rat race. The CF diagnosis slapped me across the face and taught me strength, how to slow down(still learning this) and know that life is a gift... Savor all the little moments don't let all the letty daily stuff get you down.

4) Words of wisdom: Let your child with CF be a child, play with her, teach her about nature, music , science Live your life and that's all you can do.

Rebecca(mom to Sammy almost 8 no CF and Maggie 3 1/2 with CF)

 

[JRPandTJP]

Great project. Our son was 14 weeks old when diagnosed. He was hospitalized for vitamin K definiency at 7 weeks and lingered for another 7 weeks with increasingly severe zinc, protein and other malabsorption issues until we finally were hospitalized at 14 weeks under the care of our CF Clinic. Once his nutrition status improved he finallly had a positive sweat test followed by a positive genetic test 2 weeks later to confirm. I wish more than anything we could have know at birth.

1) First questions for us was could we still breastfeed. Our clinic was not supportive and felt their high calorie, disgusting tasting formula was better for him. They wanted me to stop but I continued anyway feeling very unsupported which produced tons of anxiety for me. I want to know why all clinics are not supportive and knowledgeable about breastfeeding as Rebekka and some other clinics have been. We also had many questions about nutrition and supplements for him since he had suffered so many deficiencies due to not having enzymes. I am huge into nutrition and quite frankly I have found their advice to be quite appalling in this department as well (adding butter, cream and fat to everything and letting them eat whatever snacks they want Twinkies, ect). I would be highly interested in and supportive of more studies showing the importance of clean, healthy diets using good oils for cooking (omega 3), little to no dairy, minimal sugar, and adding calories using proteins and good carbs, ect. All and all most of our questions have been answered best by the wonderful CF community which exists on this and other boards. Since nutrition is the foundation of health, I wonder why more education isn't done with families.

2) I wish I knew how many other women do and had successfully breastfed their children (which is why we are all working together to create the web site now). I only found 2 people at the time since I had little to no time to be online when we were sent home from hospital with meds, ng tubes, follow up appt, home nurse visits, ect. I wish I had known about the Guthrey panel heal stick test at 7 weeks.

3) The biggest surprise was again why they didn't support us breastfeeding since he was gaining well and benefitting from it on so many other levels (as was I). This caused huge challenges for me and made me feel even more stressed out before clinic appointments. It also added to doctor's visits since I had to go around them and to my pediatrician for weekly weigh in's to be sure I was making the right choice for him. The other challenge was the emotional magnitude of grieving. With another child who needed me very much I just didn't have time or allow myself to fully feel the losses I felt or release all the trauma he went through. Until I weaned at 19 months I wasn't able to grieve. I was not prepared for this grieving process and I feel very fortunate that my family allowed me to fall apart and that I could find a loving and supportive therapy center to work through it without medication. More information and resources for families of special needs children would be great.

4) Words of wisdom..hmmm. Let go! Let go of "their" words after clinic appointments (the "shoulds" and "coulds"). Let go of the limited future we all sometimes envision for them becasue a future unlimited is just as possible. Learn to trust that you know your child better than anyone else and that YOU are the primary caretaker not the doctors. You make the decisions, they are part of your team when your expertise is limited or you need their help during illness or other changes to health. You can and will advocate for your child based on your inner wisdom as their parents. No one being able to tell you what to expect can be a very huge blessing in life. Surround yourself with positive people, positive projects, and positive thoughts as much as possible, even if this means new friends and support mechanisms. Positiveity is severly underated and our thoughts and attitudes are very powerful in creating life.

CF has given us a gift of knowing that each breath is a gift and we must do more in this life to share our love and support, we must be "IN" life and not let CF make the decisions in the family.

Warmly,
Jody
mom to Julia 6 w/out CF
Ben 2 (next week!) w/ CF

 

[anonymous]

Hi,

My son was diagnosed shortly after birth due to a new born study they were doing at the time he was born. He is now 4 yrs old.
To answer number one. Maybe our case may be been different due to him being picked up on a screening, he poses no symptoms as of yet. I did breast feed until he was a little over 1 yrs old. With no problems other that the usual discomfort the first few weeks.

His pancreas is still functioning so he is not on any special diet.

I wish I had words of wisdom but I love Jody's response to let it go. That is very hard for me to do. I work on that every 3 months. However it is getting a little easier. Then again we have not delt with much as of yet.

He is on a multivitamin and zyrtec for april, may and June as I suspect allergies. At our last visit the Dr. recommended pulmozyme nebs if he gets sick or sounds conjested. Chest pt 3xweek for 20 mins although I try to do it daily and it last more like 10-15 mins.

It is funny how all clinics do different things. I hope we are doing the right things for him. Our Dr. says she is trying to stay in the middle not conservative or aggressive. I'm not sure what to do or expect. I guess we will just deal with things as they come up.

Good luck with your paper and the baby. Try to enjoy through all the madness. For they are only and infant once. I miss the infant stage now my little one is a boy.(very independent)

Chris Son 4 w/cf and 2 other children w/o cf

 

[Ratatosk]

1. Once you learned a child had CF, what questions did you want or need answered immediately to help put your mind at ease? Did you get answers? Would you mind sharing?

<i>All we knew about CF was what we'd seen on an episode of ER years ago. We needed to know that our child wasn't going to be the sickly, lonely child that nobody would play with -- that he'd be able to lead a normal life. The neonatologist contacted a CF doctor when the genetic blood tests came back to sit and talk with us -- first thing he did was call up to the CF floor and have a teenager come down, so we could see for ourselves that CF could be a normal child. Also that we'd be able to get quality medical care for DS in our city, which is about 250 miles away from the closest CF facility -- still working on that one. And a 3 1/2 hour drive doesn't seem so bad these days when trying to keep our son healthy</i>

2. What do you wish you knew when your child was first diagnosed or when you found out they had CF that you now know? <i>That CFers shouldn't interact with each other because of cross contamination issues.</i>


3. What was the biggest surprise or challenge for you and your family?

Dealing with people who seem to think that you're faking it. Soooo many times we get the "he doesn't look sick" comments from coworkers and acquaintances.

4. Do you have any words of wisdom for someone who is facing a CF diagnosis in a child? <i>Try not to dwell on the diagnosis. Enjoy your child, enjoy the little things, try not to worry so much to the extent that it encompasses your whole life (easier said than done)</i>

If you would please provide me: The age of the child when diagnosed, their relationship to you (child, grandchild, niece, etc.), and additional pertinent information you feel you should add about the child's situation.

<i>Our son was diagnosed shortly after he was born. He started vomiting nasty green stuff. He was lifeflighted to a hospital 250 miles away for emergency surgery to repair a bowel obstruction. Doctors suspected CF and the test results confirmed it when he was about 5 days old. </i> L