Zoe Louise - posted on 08/04/2010 ( 8 moms have responded )




hi everyone! since im usually the one reading and replying to the odd post i thought i would write my own post!

Just a few questions really my baby boy is 5 months and diagnosed at 6 weeks old! i was wondering if any of u ever felt abandoned by the team of specialists after so long? its just i feel myself being a new mum is hard anyway and then having to get used to giving medicines and all the physio is extremely hard i think that now they feel i know what i'm doing i never hear from them and when i call because i'm confused about something they take forever to get back to me!i think im still farely new to all of this and i will have questions it would just be nice to have a call to say hi how are you getting on or something! i always have to ring them to get the results from the cough swabs and when i ask them a question like for example he was coughing in his sleep and throughout the day a lot plus being quite sick so i asked if that was how it was going to be or does it mean maybe he has caught bacteria again they never know how to answer me other than he may like the sound of his cough???? what at 3 in the morning whilst he is asleep??? i don't think so! and just treat him like a normal baby well i do to a certain extent but u can't ignore the fact that he has cf i just thought the whole process was supposed to be about preventing them from getting poorly not waiting for it to happen! i just feel there is no support out there for us young mums! i'm feeling like a nag when i call them now and i rarely call as it is! i am usually pretty positive about everything but i'm just feeling alone at the moment! did or does anyone else feel like this?? xxx


View replies by

Zoe Louise - posted on 09/22/2010




thank you holly! yeah your team does sound awesome!! i know one particular woman from the team told me i was paranoid!!?? i'm a new mum we all have worries!! but i wouldn't say i was paranoid!! they make me mad! thanks belinda at least i am not the only one but that is awful not calling to tell you he had caught staph! I am supposed to be coming over to your side of the world next year for a wedding!! my uncle is getting married he lives in Australia but am slightly worried about the long flight!! have any of you guys been on a long flight if so how did it go?? xxxxx thanks guys :) xxxxxxx

[deleted account]

I have to say ...NO... and i dont think your an "NAG" by all means... i think that your just a concerned mother that wants the best for your child. Everything that you said they should be doing...'they should be doing' . My team of specialist are awesome! they call me if they havent heard from me in awhile and they not only want to know about her health but her life also. I wish i could give you my team!! i truely do...but i think you should suggest a better an more concerned team. I can deff. see where your coming from. All the best Holly!

Belinda - posted on 09/09/2010




I have this problem with out team as well. I live in Western Australia,, and the only team in our state is 5hrs drive away.
My son (now 16mths) was diagnosed at 4 weeks and it was a total bombshell. We were airlifted to the children's hospital in the middle of the night, leaving my 3 other kids behind with my fiance. I arrived in the middle of a Friday night, and no specialists were on until the Monday...so i had to sit all weekend with no advice, and no idea what the future was going to hold.
My son has been doing really well, and I was happy with our team until the last 6mths or so. Some medications arrived in the mail that I had no idea what they were for, so when I called up to find out what they were, they were like "oh yeah, Cam has a staph infection...didnt you get a call about it??" umm...no!!
Not to mention that they didnt exactly explain what the staph infection really meant, so I was stressing out so much for three days, trying to keep him away from my other kids as much as possible...only to find out that he isnt contagious!! Thanks for explaining that one guys!!!

Right now Im getting pissed off with the dietician as she is new to the team, and rarely returns my call, and Im having heaps of trouble with my son weaning onto milk from formula.

As for the Creon...I was in the exactly same boat when he first started solids...I had no idea what to do, how many, what foods etc etc etc. But it gets better..and groups like this one have kept me sane (ok...slightly sane!!! lol) a few times to find out that whats happening is common, or these feelings are normal.

I cant give any advice on the bowel troubles you are having with your son, as we are on the opposite end of the spectrum, my son mostly becomes loose (which usually tells me I need to adjust the Creon) but I hope you get some answers soon....and remember that groups like this are here for support at all times!
email me bellab85@hotmail.com is you ever want to chat...or vent!!
You can never have too much support...even if I am on the other side of the world!! lol

Zoe Louise - posted on 09/02/2010




hi thank you all for your replies!! yes i agree. doctors are not very understanding at all it seems because cf is what they specialise in and they do it day in day out they are so blunt i remember when they told me he had caught his first bacteria nothing was explained and they told me like it was no big deal, which to them its just another thing to do in their day but for me i didn't understand i got so upset thinking that he had caught an infection etc i was in floods of tears for hours until i plucked up the courage to call a lady who has a 3 year old with cf and she explained it all to me and i felt so much better after! i have now been very direct with the nurses and doctors and have said if they are going t tell me something i want explanation and the full story not snippets here and there!! my little boy is 6 months on sunday :) he suffers more with his bowels although he is gaining weight really well feeding him has been a nightmare but we are getting there! i still don't understand the whole creon and how much to give depending on what they eat but the dietician is coming to see us next week! he is on lactulose and docusol every day and still really struggles with his bowels! he is extremely constipated and i feel so sorry for him but don't know what else to do! also do any of you know if sweating is related to cf his hands and feet are always extremley sweaty sometimes he is dripping! i wasn't sure if anyone else has noticed this?? thanks xxx

Cindy May - posted on 08/31/2010




Hi there
I think the CF association is NB for the support you need. Many Doctors don't have a good bedside manner and well they may be brilliant but we still have to learn to trust them.

I now push my doctor and have learned to have a thick skin - prepare my questions ad push him until he gives me an answer in a way i can understand.

as you say - being a mom is hard and then on top of that physio and meds- remembering it all is tough. I ended up (being a control freak) writing it all down - changes feeds sleeps - everything so that i could pick up trends - coughing trends, enough wet nappies to mean she is not dehydrated etc.

unfortunately some doctors you have to treat like service providers - they are not there for your emotional support they are there to treat you baby. If you don't trust them - look elsewhere.
good luck.

Brooke - posted on 08/28/2010




We had the same problem with my daughters first CF clinic, they didnt seem interested in helping my daughter they were more concerned about doing testing on her that they didnt need to do to get money, it fustrated me because she wasnt gaining weight like she was suppose to but they didnt want to try and adjust her enzymes the first thing they wanted to do was a feeding tube, which her pediatrician said wasnt needed yet, she was only one gram off from what they really wanted her to be gaining in a day, but they wanted her to have a feeding tube. My husband and I recently switched specialist and he is wonderful, he has got her gaining 33 grams a day which he is so pleased about. Im not sure where your from but we go to DeVos Childrens Hospital in Grand Rapids MI. I would look into a new specialist if your having trouble with this one. Good Luck!

Desiree - posted on 08/26/2010




First i'd like to say i'm very sorry you have so many problems with your medical team. My daughter is almost 16 months & was diagnosed when she was 5 weeks. Her team is wonderful and does as much as they can to help us out. We go to the University of Michigan in Ann Arbor, Mi. Thankfully my daughter has not been very ill just a couple small colds which were nipped in the bud at the beginning. i know its tough to be a new mom, im only 20 years old and although i wasnt exactly ready for a child, i knew the ins & outs of everything but then CF got thrown into the mix and all of our lives felt like they'd been tipped upside down.

but if you're having a lot of problems & just plain don't like your doctor's i'd check into getting a new doctor at that facility or see if there is more than one CF center. We were sent to Ann Arbor from the beginning but there is another CF Center at a hospital north of where i am. plus there are several different CF doctors where we are now so there are many choices if i were to move or decide i wanted to switch my daughter's doctor...

Jennifer - posted on 08/09/2010




Wow. You're understandably frustrated and I don't blame you. Being a new mom is hard and being a new mom of a baby with an illness is even harder. Where do you live? The team of specialists that look after my son's care are AMAZING. I have nothing but good things to say about them. If my son has a cough or I think he's coming down with a cold or something, I just call and they'll see me immediately or get him started on antibiotics by calling in a prescription for me. We go to Alberta Children's Hospital for everything. The doctors at the CF clinic there are great. My son wasn't diagnosed until he was 5 months old and he was very, very ill until we finally figured out what was wrong with him. Now, he's super healthy and doing wonderful. We do physio twice a day and for the most part he's pretty cooperative. The trick is to be consistent and to remember that you're bigger and stronger than your child is. They also need to know that physio isn't optional. We've found that doing it right before naptime in the morning and right before bedtime works best because he's tired and doesn't fight it as much. He often falls asleep during physio too. Medication was tricky at first but we found that putting his enzymes in applesauce (or any kind of baby fruit) worked really well. We also mix his vitamins and zantac into fruit to help mask the taste. Using a syringe for medication didn't work well at all. It's very important to treat your child like any other 'normal' child. The only things that I do that are different is that I go out of my way to avoid anyone that has a cold or is sick. I also use hand sanitizer on my little guy whenever we're in public and he's touched anything. So far, my son has been very healthy and has only had one minor cold (treated with antibiotics to be on the safe side) since he's been diagnosed. Don't ever feel like a nag when it comes to your child's care and well-being. If you have questions or concerns you should be able to call the medical team respoinsible for your child's care. That's what they get paid for!

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms