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Thread: Felix's Mystery Respiratory Condition

  1. #199
    *Yvette* Guest

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    Sounds like great news Katanya. Great info you've posted, a lot to get your head around. Sounds like there are different possibilities, but so good to hear one of them is that he will grow out of it. Is anything ruled out for sure? Sounds like your doctor is really happy with how he's doing so here's hoping it keeps going that way.


  2. #200
    katanya Guest

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    Not too sure what they have ruled out for sure but there are 150 Interstatial diseases, so I gather the've eliminated some of them!

    yes, The interstatial info is interesting, it makes sense reading it now what they are talking about and looking into..gets abit isolating sometimes when you dont know the first thing about what is going on with your child, and what the possibilities are..

    Anyhow all is good for now!

  3. #201

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    Katanya that is wonderful news about the biopsy results, and even better that he could possibly grow out of it himself! Thats so good to hear that the Dr thinks he's doing so well on his own, to not want to put him on any meds atm.
    Hooray for Felix!!!

  4. #202

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    Wow thats great to hear those results, I would be frustrated still not having a definate answer, ykwim? Still its good to have the information. I can only imagine it would be really hard to just wait and see...

  5. #203
    katanya Guest

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    I would be frustrated still not having a definate answer, ykwim? Still its good to have the information. I can only imagine it would be really hard to just wait and see...
    yeah, I have been mulling the info I received over and while I REALLY happy he is doing so well, I realised that what we know from my perspective isn't that much different than before.

    However the fact that he is improving and not getting worse is the best thing from it, and the fact that steriods aren't going to happen yet.

    I think I am going to have to get used to fact that we aren't going to have a definate answer for this condition, and everyone knows more now than at first, we will just have to wait and see how it develops. I just hope that the best case scenerio is true and he grows out of it within a few years!! wouldn't that be wonderful!

  6. #204
    katanya Guest

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    I had an appointment with the dietician, he has lost wieght again.. She said it wasn't altogether a miserable picture because he was going up so fast..but still she wants him to gain at least 250 grams by the next time she sees him in 5 weeks..

    I just feel like this is all a circle, I don't mind he is leaner again, I just want to make sure he is at least gaining, he IS getting better with his eating of solids food, and the best thing is he can feed himself which he loves..

    Anyhow, just wanted to document it, I feel like I am worried about such little stuff now, when Felix is doing so well..I just don't want that damn nasal gastric tube back again..

  7. #205
    katanya Guest

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    Definately the tube was great for putting on the weight, but as he has night oxygen, it is a real fight for nostril space, and he used to scream every night when they went on together..anyhow I just I am just worried it may come back again..

    he was 9.5 now is 8.9 kgs again..so lost 600 grams..not something to sneeze at..anyhow I am not going to stress just have to work on it! I always found it so easy to put on weight..doesn't seem fair!

  8. #206

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    awwww thats so hard!! Matilda has actually lost weight since she's been on her feet and walking heaps. It was 200gm in a fortnight and she still hasn't put it back on.... :-k Nothing like Felix's weight loss...but I guess just something to remember that it can be normal for them to loose a bit during this time :smt102

    I [-o< he doesn't have to get the tube again & he gains weight! *hugs*

  9. #207
    katanya Guest

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    you are totally right Christy, the walking everywhere is definately a factor, and the that is one reason the dietician isn't freaking out yet..*sigh* it's funny how something a small as 600 grams can make ALL the diffrence..!
    He has a liking for chocolate biscuits, and as much as I would like to encourage healthy eating, I figure that one of thes for dessert can't hurt..

    The dietician gave me some more advice, she wants me to shift his dinner time to 5pm (it was 6pm) and she wants me to get really excited when he does eat..he actually eats a good variety of things it's just the quantity we have to work on..

  10. #208

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    Oh Katanya, my heart just sunk when I read that. I was thinking a couple of days ago, that we probably won't see you much in here anymore, because felix was doing so well. Anyway, the food thing is so stressful when its such a significant part of their health problems. I may have said this before, but Alana's paed said out of all the things in regards to CF, parents stress most about the food issues.

    I hope Felix puts on weight for his next appointment. If you don't mind me suggesting, maybe try some high calorie milkshakes. Try adding a small amount of sustagen gold to it, icecream/yoghurt and put fruit or topping in it for flavoring. I know sustagen gold is an adult supplement, but Alana's dietitian said she could have them when she is on milk, but just to put say a tsp.

    Anyway good luck to Felix and I hope he doesn't have to have the dreaded tube back again.

  11. #209

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    Hi Katanya

    I too have heard of the sustagen supplement in cow's milk and on brekky cereals (like weetbix, porridge). Zeke's specialists told me he could have it when he was over 6 months if he hadn't started gaining weight quickly.

    Iris I know what you mean about weight being one of the great "stresses" of childhood health issues. I used to dread Zeke's weigh-in every day.

    Katanya I hope the moving feed time and choccy bikkies do the trick. It's good he likes a variety of foods now. At least that gives you some options.

  12. #210

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    Oh katanya what a bugger,
    hope Felix eats up a storm and gains it back very soon, and yes walking is prob the culprit. I had to laugh at the comment about how you have never had trouble putting on weight, it is so true that when you don't want it on it comes and visa versa.

    Anyway fingers crossed that things improve for the next weigh in.

    Cheers Michelle

  13. #211
    katanya Guest

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    Lara I made Felix a warem chocolate drink last night with sustagen (it wasn't sustagen gold but chocolate flavoured susten hospital formula?) He wouldn't drink it ](*,)

    He did eat icecream for mum when she had him during the day, so perhaps we'll go out and get some ice cream and sprinkle it on there..

    He will eat only when he decides to eat..he is very frustrating, and you are right this eating and weight issue ahve been the hardest by far..the night oxygen has it's moments, but definately the weight..he's looking skinny again, as he's had a big growth spurt (yay) but the down side is ribs are poking through again..just wish there was an easy answer!!

  14. #212
    *Yvette* Guest

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    Hi Katanya, sorry to hear that. It is great that you're documenting things as you go along, just as a release as well as a health record. It does sound right about the walking, and it sounds like a very small amount of weight. Angus still hasn't reached 10kg & his weight gain has slowed off on the chart, we put it down to a couple of colds & lots of activity. Sounds like you're not freaking out too much which is great.

    Great that he can have a few choccy biccies - if only they didn't make such a mess.

  15. #213

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    Katanya, Just wanted to pop in and mention something I discussed re babies/weight etc with a couple of paeds. at the hospital recently............

    Olivia has always been a titch......she is 16 months and still only just 9kg (so off the charts in terms of percentiles). I am always concerned about this, obviously, but am reassured by the fact that she does actually eat a lot. She, on occasion, does still "feel" skinny, but other days feels fleshier, IYKWIM?

    Anyway, I spoke at length about this when we had all the hospital dramas a week or so back, as of course I was spinning out that her leg aches/pains/infections was a result of malnutrition etc.

    All 3 of the consultants I spoke to suggested that once babies get to around 12 months, regardless of BF/FF/Solids intake, that their weight plateaus out, and babies at the low end of the scale automatically generally lose weight on regular occasions, due to their metabolism/activity levels.

    Anyway, I then spoke to MIL (who is also a dietician) about this, and she confirmed what they had said, and also mentioned to me that DH at around 15 months lost weight consistently due to his activity levels firing.........(so Olivia obviously takes after him).

    Anyway, this may be of no help to you whatsoever, but thought I would share it just in case?

  16. #214
    katanya Guest

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    Thank you Lucy that info is really great to hear, I think that because Felix has his respiratory issue, we get extra attention on us, because kids with respiratory issues burn EXTRA calories..he really is getting better at eating he just burns those calories..

    They really will have to fight me to get the NGT back on again, because if he can grow out of the inflammation then surely he can grow out of the weight issues??

    Parents at my playgroup were laughing with me today because they were limiting the amount of biccies their children ate, and I was saying..eat more Felix..one mother said your the only mother that encourages her child to eat sugar and fattening things that I know well let just hope his weight doesn't just turn around..9 kgs is okay, but he has a big frame, DP is 6'4" so Felix if all turns out should be a tall boy..skinny but tall..

    I look at it from a bones poking point of view..ebfeore the NGT hehis back bones were poking out, you could see his hips and his ribs were very visable..helooked like a ethopian..his ribs pointed outwards and there was no belly..

    Now at 8.9 he has no extra weight but there are no bones poking IYKWIM..so that is okay by me..the actually number is usless because 9 kgs on a girl of his gae actually looks fine but he is quite tall and a broad frame..so looks leaner

  17. #215
    katanya Guest

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    I actually had my first normalish appointment at a hospital for ages..with Felix paedictrician (the one who put the tube in) he sujmmarised the biopsy results as pretty much nothing illuminating, but listened to him and couldn't detect any crackles..yay,,this has happened before and then by the time the specialist sees him again he has crackles..Felix is the same old weight --8.9 still, and Paed started saying something about his 10 percentile and 50th height and I said the dietician said that was fine as long as he now continued to gain not plateaued and ending back off the charts again..I am not stressing about his weight, I just give him good quality high calorie food, breastfeed him and hope for the best..he really likes the muffins I have been making lately..we've been trying some new foods and he's doing quite well..apples are his favourite foods still though

    He is infection and cold free and is looking just great (except for toddler bruises and scrapes) so apart from the oxygen we have a healthy normal a bit skinny boy ATM!

    Please let things continue like this!!

  18. #216

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    That's great Katanya, I hope it does continue like this and thank goodness he didn't lose anymore weight.

    Yay on not hearing crackles!

    Yay on trying new foods!

    Fingers crossed for you and Felix that it continues like this.

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