Alana and Cystic Fibrosis

Lara that is not good news, no matter how envitiable a cold was it is always scary when your child has something like CF to make things more complicated..

The digestive problem sounds concerning too, what are the potential problems for someone with CF? I know they don't absorb fat as well, but what could it mean?

I was wondering also how the lung side of things works? As Felix has fibrocystic pneumonitis I was wondering whether it affects Alan the same way? Does she have constant inflammation in her lungs, or just the potential to prodiuce more mucus and infalmation that average?

Hope you don't mind me asking, but the Cystic fibrosis clinic is at the same clinic Felix goes to at the RCH and I have read some of the things on the wall about it but don't understand that part..thought you might be a good person to ask?

Hope little Alana comes out with her boxing gloves and gets this infection head on! The positive is her weight is SO good and she hasn't had nay other infections so far has she? So her system should be strong!

Hope you are okay too Mama Lara..I know the feeling of fear with a sniffle..

Thanks everyone! Alana seems better today. She slept through until 5:30am, so that would have helped her alot. Still abit running in the nose and a slight cough. After not being able to get her antibiotics down this morning, I rang the pharmacy to get their advise. Anyway they said I could give it to her in a small amount of formula. Thank goodness as I was getting worried about how the hell I was going to get it down.

The CF nurse felt that with getting it nice and early that one course of the antibiotics would do the trick. And since she is heaps better than yesterday that there is no fear of it hitting her lungs. So thats a relief. Actually she seemed more concerned about her being constipated. She is getting in contact one of the CF paeds (Alana's paed is away) to get some advise. We should hear back this afternoon or tomorrow morning.

Katanya feel free to ask anything you want. Alana's lungs are at this stage are as healthy as anyone elses. She doesn't have any inflammation. Due to Cf causing mucus to be thick it becomes hard for them to move it, hence the physio everyday. The mucus traps bacteria causing infections and making it difficult to breathe. It does in the long term cause chronic lung disease, some quicker than others, but that is the outcome for most. Some need lung transplants. The healthier her lungs the better quality of life and longer she will live. Alana could possibly go through her entire childhood never having an admission to hospital, which is what we hope for. I must admit I really only know what I need to know for Alana now. I figure as she gets older and things crop up I will deal with it then. Hope that helped.

Anyway I am feeling more relaxed now.

I'm glad that she had such a good sleep and is a bit better today Lara! That's great news!!! I hope you get some advice about the constipation too.

Ahh so that is the difference, the mucus quality, So if she had what Felix has she'd be even sicker because his varies but hers would have trouble shifting? Now I understand why even a small cold gets you worried more than I did..thanks for answering my questions..

Good news about getting in early, and also good news that if she stays free of infection she may never see the inside of a hospital (lucky girl :)) Even though you know what she has there are still many variable's like Felix's condition.

Hope her constitaption gets cleared up, and you see an pead ASAP, not nice for her!

Great news about the antiobiotics going in the formula, that was one things I LOVED the nasty nasal gastric tube for..it was SO easy to give antibiotics and panadol! Felix fights having meds too!

Hi Lara. Sorry to hear Alana has a cold. I suppose it had to happen some time, but is so much more of a worry for you with the CF. So the nurse comes to your house every day to do the physio? Sounds like you're getting really good medical care, the system does seem to work well for kids doesn't it. Hope the constipation gets sorted out easily. Great that she had such a good sleep!

Yvette we do the physio ourselves once a day. When she is ill like now, twice a day. We have a CF nurse and a CF physio, who work through the Royal District Nursing, that we can call on anytime for free. They are fantastic. Life savers! We probably have more contact with them than we do her paed. In Victoria we have such a great support system. Not only do we have the nurses, her paed but also a councellor, dietitian and a CF Physio at Monash. Also Cystic Fibrosis Victoria are great. They will do anything for us, even visit when your in hosiptal.

Katanya great the info helped.

Anyway must go, I'm of to do Alana's physio. Thanks again everyone.

Oh lara, sorry for jinxing you. Hopefully she is even better today, it is very concerning for you guys. Also hope the constipation is fixed soon, poor little bugger, she must feel awful! I took Jessica yesterday to the drs cos I too worry about things moving to the chest but for Alana it is so much more important.

Hugs to you all
Michelle

Well we have changed the laxative Alana was on and when I got home from work Mum said she definitely had unplugged herself. She did such a good job a change of clothes was required. Good on Alana for waiting until Frank and I had gone to work and Nana was looking after her.LOL! Frank finds it difficult at the best of times. He oftens wraps a cloth nappy around his face so he can change her.LOL!

So what a relief. If she hadn't unplugged by tomorrow morning she was going to have to have a supository(?). Lucky!

lol that would have been quite a release..looks like you went out at the right time huh?

lol, excellent timing Alana.

whew what a relief! :D for both of you ;)

Alana has super timing, couldn't ask for anything betterLOL.

I bet she feels so much better now!@

How's the cold?

Cheers Michelle

Michelle the cold is getting better, just a little snotty. She has about 15 days of antibiotics, so I'm sure it will well truelly gone by the end of the course.

Well I found out why the new laxative worked so quickly. Frank told me the dosage as 3 times 5ml a day. So she had a dose late last night, this morning and lunch time, then she did her....you know....poo LOL! well when I read the back tonight, it was meant to be 1 times 5ml per day for 3 days #-o I'll make sure I read the dosages from now on!LOL!

I had to laugh Lara, it may be better if you read the instructions, Does Frank have glasses? LOL Oh well the jobs done and Alana is ok so that's all that counts.

Cheers Michelle

Michelle Frank doesn't wear glasses, but I wear reading glasses!LOL! #-o ](*,)

Hi Lara,
Just wondering how alana is doing also? how is the rest of winter treating her?

Katanya to be quite honest its been abit stressful these last couple of weeks, hence why I haven't been on to much.

Alana decided that she was going to refuse to eat any solids and to make it worse, also her enzymes. The solids I could handle, but the enzymes have driven me to insanity. Of course if she doesn't take the enzymes she can't digest her food properly, meaning loss of weight, possible stomachs cramps etc etc etc. She is just spitting them everywhere. We had to see a speech pathologist, which I found pretty useless. We know its behavioural. But didn't get anything from it that I hadn't tried or knew.

Anyway some good news is that she is taking some solids, but only heinz jar stuff. Which is fine. But still having no luck with the enzymes. We are going to try those heinz gels for the enzymes, to see whether that will help. Maybe she is just sick of apple.

I don't know why I am stressing so much and getting so upset. She has put on weight since her last weigh in. And she is really happy. She got over her cold really well. But emotionally I'm not coping. I feel stupid.

Anyway thanks for asking.

Hey Lara,
Just wanted to let you know that I realy feel for you. My dd is sick at the moment but it is nothing compared to a life long condition that your little family live with daily. I'm sure you and dp do a wonderful job. I know saying that does not make things easier. It won't make her eat her enzyms but I'm sure she is a very special girl and given to you because you are very special parents that love her very much.
:hugs: :grouphug:
Take care

Lara, you've said it before to me, the gaining weight aspect of CF is one of the most stressful parts, not to mention getting those enzymes into her.
I know how hard it is to try to feed a child that refuses to eat, it is a sad nightmare, somehow it is something we as mothers instinctively take very personally, I just felt/feel like a big failure most of the time because my child can't gain weight.

It does sound behavioral, and I know like you that the more you stress that the more they turn it against you..Felix will refuse the spoon I'm holding then I put it dow and he'll put it in his own mouth.

I was thinking that maybe Alana is like Felix and likes to feed herself? One thing that works for us is a bowl of food he likes with his spooning happily (a hit and miss affair still, although he is getting pretty good now)

and then I get a spoon and sneek in spoonfuls while he thinks he's doing it all on his own..maybe you could get in enzymes this way?

I am really happy that she is still gaining weight despite the refusals, but I know it wears you down..

I noticed you had been here a bit less lately, and I wondered how you guys were going, you know I understand a part of what you are going through (I guess no one can ever understand full another persons' journey with this stuff anyhow)

Hope your new ideas work and you get some time out too, food is the worst thing..I would be happy exclusively BFing felix for the rest of his days it's one thing he never refuses! (I might have breasts to my knees and social problems, but hay I would never ahve to coax him to eat again!!)

Oh lara you poor thing, I was just asking where you were in the 9-12mths forum.

I too am having trouble getting Jess to eat, and I am trying the spoon thing too. SHe loves finger food, but anything I try to spoon hr she is shaking her head and hands. Today I gave her toast and shovelled weetbix in between, she ate most of it. Can you put the enzymes in something else?

And as for stressing I am too and Jess doesn't have any other condition, she lost weight last month and I wasn't happy, figured I'm not feeding her right, but I really do know that's not true, she was unwell and teething and being stubborn, just like Alana.

Chin up, try any crative way you can to get that food in....whatever works is good, and what ever she wants to eat is also good .

Remember you are a good mum!

lvoe to you and Alana
Michelle

Sorry you're having a stressful time Lara. Mealtimes can be so frustrating sometimes with little ones, it must be so much more so when the enzymes & weight gain are an issue. What form do the enzymes come in? (ie a powder or liquid additive?). I'm just asking Lindsay & he says it can have a funny smell, I suppose that makes it harder to sneak in.

Lol @ Alana being sick of apple. Whenever there's something Angus will happily eat (he went through a banana craze, but now will only have it mashed in weetbix) we just keep feeding it to him morning noon and night. It's hard sometimes to break out of a habit when something has been working and then isn't any more, & tired mummy's aren't at their creative best.

What was the speech pathologist about? At 9 months obviously only a little babbling expected. Was it just to rule out any physical reason for spitting out the food?

I'm not very good with creative suggestions, couldn't get Angus to eat any dinner last night (bit grumpy with a cold/teething). Perhaps I should try the spoon/toast trick, or just give him weetbix & banana for every meal, lol. I think it's really important not to make a big deal out of it & avoid letting them see you upset by it (need good acting skills, lol). Sometimes too, they might be tricked into having some of mummy & daddy's food, like it's their idea.

Don't feel stupid, we all get stressed out and you have plenty of reason to be. Sounds like you're doing a great job. You're a good mum!

Well no luck so far. The apple had nothing to do with it. She won't take her enzymes in anything. We are tricking her at the moment. Pretending to give her the bottle and as she opens her mouth, we sneak the enzymes in. And giving her solids that don't require them. But its not the best way, but it will do. She must be getting enough down as her food isn't going through her, we would be able to notice it with her poo. So that is good.

Yvette her enzymes are like tiny spheres. They need to be taken down in an acidic food. If they are not, the stomach acids will dissolve them before the food hits her stomach or something like that. They can't be crushed. Thats the tricky bit you see, there is not to many options on what you can do. She can't swallow them, so the only other option is in pureed apple or some other acidic food.

The speech pathologist just watched her eat. I never realised that was what they dealt with. Honestly it wasn't worth it. I could have dealt with this via her dietitian.

Anyway just dealing with it. Since she is happy and not losing weight I won't worry to much........yet!LOL!

I think your darling is just being stubborn LOL, which is not fair to such a lovely mummy, is it? She has worked out that she doesn't want the enzymes and it's a battle of wills, keep persevering Lara, sooner or later you'll win! And if she is well otherwise then you don't have to stress so much. Easy for me to say I know, but I am hoping it is just a very short phase!

Best wishes Michelle

ahh Lara how frustrating ](*,) at least you have a back up method but would be nice if she took them willingly..sounds like she is doing well still though!
I think Felix has gained weight , but he's just got sick again and I'm worried that will skim the weight off again..:( it's a neerending battle isn't it?

Hey Shannon! Now I don't know all the nitty gritty, but a 'tune up' is having IV antibiotics for a lengthy period of time and full on physiotherapy. Some could be in for 10 days, others, depending how bad they are could be in for 3 or more weeks. Hopefully Alana won't have to experience 'tune ups' for a long time. Alana goes to Monash.

They use to put the CF kids together when they were doing 'tune ups', but now because of 'cross-infections' between CF'ers they have to be separated. Its a shame because the CF kids could build such a strong bond, being able to relate to each other. If we have a CF Victoria get together we can't bring the kids.

Thats interesting about the sister. I assume that her sweat test came back negative, so she is definitely doesn't have CF. I would have thought that the parents of a 6 year old would be able to make the decision whether they wanted her genetically tested.

Well I guess you could definitely understand, being what you and Jessalyn have been through, that you just find that strength from somewhere. I guess all the physio and meds has become the norm around here. We don't know any different.

Hi Lara. That is a bummer about the CF kids not being able to get together.

I tried the double spoon trick with Angus (was it Katanya who suggested it?) & it worked brilliantly! I don't let him dip his spoon, he just bangs it around, and will open his mouth for the real spoon.

Lindsay was just saying how kids who need enzymes learn really early to take the capsules. I can't even get a 12 year old to swallow a panadol, lol.

Glad Alana doesn't need the 'tune ups' at this stage.

Just thought I would post an update.

Alana's lastest weight is 9.4kgs. Another fantastic weight gain. She had her paed appointment today and he is very happy with her progress. She is now above the 50th percentile.

We mentioned that she is still getting constipated, but he seems to feel that its due to her not drinking enough water. We have been trying, but we find the only way is to get her to drink it is in a mug. Very messy and she will only drink a little. but we will persevere.

Also saw her Dietitian. She was pleased that Alana has now started to take her enzymes again. Even though it didn't seem to have a impact on her weight gain. She is still having issues with the solids, but the dietitian said just to keep doing what we are doing, as she is happy with her weight etc etc.

Anyway I figure that Alana doesn't have teeth yet, so she can only handle certain foods anyway as she doesn't have any pegs to chew with. Also she isn't crawling, so she wouldn't be burning of heaps of calories, so she wouldn't be as hungry.

Oh as for the crawling, again her paed didn't seem worried. He tried to stand her up, but Alana would have none of it. She refuses to put weight on them in a standing position. He thought it was very funny. He thinks we have a very strong minded bub. I was like NO ****!!!!!

Lara that's great news. She's really doing well with weight gain, isn't she!

Yay for Alana< Lara that is great news. LOL she has overtaken Jesscia in the weight stakes.

I am so happy for you cos I know you have been worried, but sounds like everything is very good.

Best wishes michelle

Lara weighs 300 grams more than Felix 8-[ she's such a champ! You guys are doing so well! Obviously the eating issues aren't affecting her gains;)

Hi Lara

I was just thinking about Alana and wondering how she's doing, as I haven't seen you around the boards for a bit.

Hope all is well and you enjoyed Christmas.

Hey Christine! Yeah I don't get on much lately.

Alana is doing well. Putting on weight nicely. She caught a cold christmas eve that stayed on a little longer than I would have liked, but with antibiotics it finally cleared up. Its only her third cold since being born, so I can't complain. As long as she stays out of the hospital!

She is still not walking, but she bum shuffles all over the house. She has never crawled. Its really funny, people get a real kick out of it. She'll get there. We got it checked out, on GP's advise, by a Orthopedic Pead and he felt that there is nothing wrong, just taking a longer.

Anyway, thanks for thinking about us. :D

Hey there Lara! I am glad to hear that Alana is doing well! Sorry to hear about the cold but I'm glad she's doing better now. Glad you could pop on you have been missed!

*mwa*
Cailin

Hi Lara
so glad to see you back and hear that Alana is going along well, I double bummer the cold, but 3 so far is pretty good, jessica has had heaps more than that so you have done well. PMSL at the bum shuffle, don't mind the NOT walking thing, you sometimes wish they still didn't walk once they do LOL. And esp when you have a runner and a climber as I do. Keep well.
michelle

Lara that's really great news! I have a nephew who bum shuffles.... gives us a bit of a giggle.

Good to know you're all well.

Lara - good to hear that Alana is gaining weight. The bum shuffling sounds so cute.
It's a pity that the CF kids can't get together at all. What a cruel twist, hey? It would be great for them to see each other and know that they aren't alone.

Hey everyone!!! Thanks for the cheerios, its nice to hear from you all.

Debbie it is a bummer that the Cfers can't get together. The best support you could receive is from others in the same situations. Oh well thank goodness for phones, internet and email! She can at least chat online with others with CF when she gets old enough.

She is starting her first day play group on Monday. This is a huge step for me, as I have been very cautious about these situations, as they can be a breeding ground for colds etc. But I feel that she is really lacking the interations with other kids and I think for her emotionally she needs these interations. I don't want her growing up paronoid or emotionally/socially stuffed, because of me, I would hate myself. I think she will love it. She gets so excited when we are out and sees other kids.

Hi Iris, how exciting to be starting playgroup on monday. I bet Alana has a ball with all the othr kids. I'm so glad to hear she is doing so well LOL at the bum shuffling - its so cute when babies do that.

Dach, Alana did have a ball. I was so glad that I took her. She was so thrilled just to be around some other kids.

Update on Alana not walking. I got a referral from Alana's CF physio, to a Paed Physio. Anyway they say that Alana's right calf is very tight and that she won't put weight on it when she is in a standing position. They think that it could actually be uncomfortable for her. So, on Wednesday she is getting a cast on her leg, which is meant to help with stretching out the muscle. It will be on for a week to 10 days.

They are also saying that she is having trouble going from one position to another. For example, lieing on her back to a sitting position. So we are basically having to show her how to do it so that she can learn.

So I am feeling really positive about what they are doing and hopefully we have Alana running around the house in no time. \:D/

No its not CF related. They really didn't say why its happened. Not surprised. Half the time I think doctors just guess or make it up as the go along. LOL! No, they were great, I trust what their doing. So I guess its just one of those things.

Yeah anytime you want to catch up. I'm not working anymore. Frank and I started our own business and I am also studying a course at TAFE. So I am more flexible with days too.