Felix's Mystery Respiratory Condition

Hi Katanya :)

I'm also just checking in to see how your appt went... I hope it went well, and you got some good info and support.

Hope your appointment went ok.

Have you thought about using formula in his food? Like anything you make with milk or water using a bit of pre-made formula? I'm sure soft chewy biscuits in small bits would be good. Then you could be giving him the butter and formula and everything else at once? Formula is supposed to have more calories than just milk right?

Maybe you could make your own formula custards for him?

And I just thought of something else, if it's just a matter of needing the extra calories at night, could you use one of those tube things that sit near your nipple so he can feed like he is used to but still drink formula?

Well here I am to update about the dietician, Thanks so much for the support about the dietician you guys, I felt very touched when I got here and saw your well wishes!

Well there is good news, Dietician doesn't think supplimenting is neccessary yet.

What she started by saying was Babies with respiratory illesses need up 20-50 % more calories than other babies their age, so looking at what a "normal baby" eats isn't going to cut it, she said by increasing his food by 20% and seeing the effects, then if the growth rate doesn't increase then we'll look at other ways.

Okay firstly she said that nutrution wise he is still getting heaps of breastmilk so we are just looking at ways to increase calories at this point.
Firtsly she told me to watch the amount of water he drinks to keep it low as babies will drink to their fluid levels, and water will replace breastmilk if he has too much, so sips only to help him eat more.
Then she wants me to introduce eggs and meat to his current diet, he ate the eggs okay, but I will ave to work on the meat.
She told me to make up little bits of mince everyday to add on the side of his meal and just offer it everyday, sometimes it can take 20 times to introduce a new food, but keep trying and eventually he'll get there.
She also said we are aiming for 1/2 cup of food 3 times a day, and before breastmilk.

The paed had written a note to her whether to add supplimentry feedings but she decided we should try the extra food first.
While we were there Felix and Emmalee were racing around the floor in her office, and she commented how active he was and that his appetite is increasing but so is his burning ability, she said we have to ensure every mouthful is worthwhile.
She doesn't want me to worry about fruit and vegs ATM, because he is getting nutrition from BM. We'll work on that once the weight is better.
She said once he is 1 year old we can start introducing cows milk.

The other bonus was I saw the lacatation consultant on the way out that we had in hospital, and my friend has had to see her several times, so I had a chance to ask her about the benefits of formua and whether it would make a diffrence, she said I should bring her into the consultancy and that if I can express enough that I should ask them if we can add to that rather than use formula. Only problem was she wondered whether I'd be able to produce enough for a NGT..but it's okay ATM anyhow!

I have been using fenugreek tablets and my milk is spurting, so I feel confident that I have enough again for sure now.

The dietician told me to stop weiging him in bewteen visits to her and drs because it can really get you down while your child isn't gaining..so i'll have to kick my abit of going to the MCHN!

Next stop is to the Royal Childrens on the 15th to see specialists again! DP is coming this time, so will be great to have that support!

Mummy2B@ thanks for your suggestions about the formula, but I have been told milk custards are just as good, he is nearly 10 mths old now so heading towards the time when cows milk is okay anyhow.

No, I just meant if they were going to suggest him drinking formula, you could try putting it in his food first.

I envy you still bf at this age. Once DD had formula, it was an uphill battle to get her to bf again, and she never got off comp feeding, in the end I had to give up.

I just thought for Felix to keep off formula bottles for as long as possible.

Glad to hear it's unnecessary. Keep up the good work Felix, and eat you meat! lol

Thats such good news katanya! Whew.... now to make a carnivore out of him :) What a relief to hear that you don't have to worry about NGT, hopefully forever! (finger's crossed!!!)

Great news Katanya,

I found introducing meat to be so hard, but your dietician has some good ideas. looks like you are in really good, caring hands there. Glad things are not at the extreme level for you and that you can keep breastfeeding without any worries.

Best wishes Michelle

Katanya great news. Sounds like your dietician is willing to try things first, before having to change things drastically. What she has said to you about the amount of food a child with respiratory problems needs is exactly what we have been told. Also the water things too. We have been told that we should try to encourage cows milk to drink, instead of water (whens she is older that is).

Good luck with the next app for the 15th.

Glad to hear you got posstive news from the dietician, let's hope that the next weigh-in shows a nice big increase.

Well tonight I have something exciting to share!!

I made a smorgesboard of beef mince, potato with butter, avocado and flaxseed, and scrambled eggs (with cream added), plus carrots sticks and a couple of tablespoons of yogurt with polyjoule added.

The four things filled a quarter each of a baby bowl, and he ate about HALF!! Including several mouthfuls of mince!! then he chewed a bit on the carrot, and then ate ALL of the yogurt!! I hope we are turning a corner!

His poos the today have been quite solid, and there have been heaps of them, I hope this doesn't mean he's not absorbing the food now he's actually eating!

And he drank breastmilk as usual before bed! :crossfingers: it continues!

Go Felix Go :cheer: :cheer: :cheer: :cheer: :cheer:

Woohoo! you GO Felix!!!! =D> \:D/

Excellent news about the dietician Katanya, sounds like she has some great ideas there.

Keeping my :crossfingers: for a big gain at his next weigh in!!

Yay for Felix!!!

hmm you can put those pom poms away he's had such a bad eating day today :( oh well 2 steps forward on step back huh?

Only ate 2 mouthfuls for dinner! He has been pooing ALL day after all his food yesterday, I wonder if any actually hit the sides!

Here are some recent pics of Felix and his favourite activity ATM..cruising the furniture!

Just got back from the natural therapist..the first thing she said was does he have respiratory issues? Because his entire lung area is marked, she showed me what she means, it is a HUGE section, this was without even looking with the light. She also told me that often with something like this it can be carried over from previous lives and if not treated he will continue to carry it. She said she wasn't sure what my beliefs were and I told her I was open to these things.

Next thing she noticed was HUGE dairy intolerance, yep just as Sif suggested, I have actually begun to wonder myself due to the amount of poos we are getting now he is eating MORE dairy, and nothing seems to be sticking! He has white milky spots all around his eyes she made me look, and said it takes 3 weeks to get dairy out of his system, as I told her I removed it for a week when he was exclusively BF, obviously not enough.

She is going to do a distant reading, and I will go back tommorrow, she said this type of exam is easier with his age. She also asked about hits to his head, I said there had been a few with him leaning new skills and she said she'd be looking at that too.

I was a little aprehensive at what DP would say as he is skeptical of these things and he LOVES milk. But he said it might make sense with all the pooing, and we should at least try it for 3 weeks.

Only problem is now I am alittle at a lost at what to feed him, she has said no dairy until she talks to me tomorrow, and don't replace it with soy until she looks at that. I will keep with the avo and flaxseed, the eggs without milk, and the meat, and try fruit without yogurt...fingers crossed I can use goat or soy at least.

So perhaps we will get some answers and without the dairy (I guess I will have to eliminate as well) he may see some difference.

I don't feel confused at all, in fact the dietican queried the dairy as to how he was going with it and I said it was okay I think so it makes sense..I just wish it wasn't so :(

Katanya, I'm just thrilled you went to the natural therapist, one visit and she picked up on so many things! I saw an iridologist who immed picked up my heart condition, it's easy to have such faith when someone can look into your eyes and see your medical history.
Yep it will be hard without the dairy, what were her recommendations for his diet not to include it?
I've gotta get back to finish my Bsc, I had to postpone my studies, but this is the stuff that reminds me why I wanted to study natural medicine in the first place.

I can tell sometimes you don't feel it Kat, but you really are made of tough stuff. I believe babies choose their parents, and Felix chose you for a reason.

:flower:

Thanks for your feedback Lulu, it was really amazing, I actually feel that Felix has this illness to test me, I am the most reluctant cook, and now because I can't find heaps of stuff he can eat commercially I will have to make my own..It's driving me mad, because I make this yummy stuff for him and he won't eat it!! So I am learning patience and to let go of stuff like that!

Mummy2B2 I am sorry I haven't replied again to your other posts, I just wanted to say that I was avoiding the formula path with all my might, I think your idea is a great one BTW, and today I went to look at goats formula, but I can't just get the packets and buy a huge tin that will only last a month seems ridiculous! My friend who is braestfeeding wants to get some to put in food too, I might see if she will go halves in a tin with me, if she doesn't mind goats milk based one.

The natural therapist also does reiki treatments as well and did one on him and told me about the effects his past lives have had on him. I have felt quite intune with the universe, but never had any expereince with past life stuff before, if was quite mind blowing.
She feels he is lactose intolerant, and not to introduce soy but Goats products will be suitable for him, she also feels he has a wheat allergy.

So I have been madly trying to find everything Goats! I have milk, yogurt of 3 flavours and been looking into what he can eat without wheat, I made him goats milk and spelt pancakes.

She has prescribed him a homeopathic remedy of Ignatia 30c which will aid his throat (also believes is an issue) and lungs, also digestive.

She also felt I needed to continue with the specialist, she couldn't pick up anything from the treatment of the nature of the illness, but she said she felt that even if nothing definite was discovered that it was important to continue what we had started.

She believes once his throat is better he is ready for eating the same food as we eat and he is really ready to eat solids now.

He went off eating altogether when I took the dairy out, and I was devasted that he was finally eating and then it stopped, but he seems to be getting used to the taste of the goats products now, I have been disguising them with fruit!

Anyhow next stop is our appointment at the specialist on tuesday the 15th..can everyone cross fingers for us! :crossfingers:

:crossfingers:

I know what you mean about the goats Kat.
I read an article about Soy and how it can be bad for babies on a constant basis. A soy formula fed baby apparently gets as much female hormones as three Pill pills. I was worried about DD and brought it up with my MCHN but she was a temp, basically had no idea about the long term effects, couldn't help me at all.

Hope you go better. I think I have one packet of Goat formula, I won't switch till I can find someone who can talk to me, but maybe you could use it in food? Try asking your MCHN for samples too, they are good like that. The companies send it to them, so if no one asks/needs it it goes off. Better to ask, and try it. Or not.

Katanya

just dropped in to say I hope things go really well for you tomorrow, and you get some answers about Felix.

Good Luck with the specialist today Katanya.

Well we are back from our appointment, with some good, bad and fair news...

The good news is we saw the cardiologist and everything is fine with his heart, the did an echo and ultrasound, and picked up no abnormalities.

The Bad news is Felix has lost weight nearly 200 grams since dietician, now he is the big blue void on the charts, below the bottom percentile. He is 7.64...the bottom weight for a 10 mth old boy is 8 kgs....so we are talking not good at all...I am going to get a hospital grade pump tomorrow, and add polyjoule to an expressed feed, but we could be looking at nasla gastric tubes after all.

The fair news is the expected booking for the brocialoscopy and CT scan which is next week, the thursday before easter. It is at 8:30 am and I have to bring him in at 7:30 am, I had a bit of discussion about the feeding beforehand, I mentioned the 4 hrly thing and he said it depends on the anesthetist, he said how about 3am? I want to make it 4 hours before procedure...specialist said because it's down the throat they may be extra cautious.

Anyhow we have been warned that it is not a definate that we will find out what is going on, but we feel now we should explore things further..

Next thursday is not going to be a good day :( we may have to stay over depends on how he comes out of the anesthetic, but will see on the day.

Katanya I'm so glad the cardiologist gave him the all clear (phew!)

I'm sorry the little tyke has lost weight, but it's really good that they can book you in for the bronchoscopy next Thursday. I know it will be scarey for you (a bit of forewarning.... it's really tough when you have to hand him over to the theatre staff when he's drowsy. Keep the tissues handy.) but from one Mum who's been there.... the staff were excellent, my baby didn't have any after-effects and we were able to get a good idea of where too from here (Zeke has a paralysed vocal chord from his heart surgery when he was 3 days old... they were doing the bronchoscopy to determine if it would cause him any problems later in life.) The outcome was that there was nothing seriously wrong, and they'd just continue to monitor it while he grows. So it was good to find that out.

I'll be praying for you all next Thursday, that you get some really good news this Easter.

Oh Katanya
So sorry to hear all the news wasn't good, but an all clear for the heart is a good thing though.

Good luck for the next lot of tests.
Best wishes Michelle

awwww katanya I'm sitting here crying thinking about what you have to go through. You know if there is anything I can do for you I will. I'm really serious, if we could help with putting up your DP, driving anything next week let me know

Oh Katanya... sounds like you guys have had quite a day...
I'm really happy to hear that everything is fine with little Felix's heart.
But I am so sorry to hear that he has lost weight... it must be so terrible frustrating and upsetting for you...
Hopefully adding the polyjoule to his EBM might make a lot of difference?
I will be praying and crossing everything next thursday that the tests give you an answer and something concrete to work with...
Sending you the hugest :hug: ...

Oh Katanya :hug:

I'm so sorry you keep getting nowhere with his weight! I can only imagine how it feels for you to keep going downhill no matter what you do... It must be so daunting and terrifying getting ready for a test like that now. Atleast he probably won't be too aware of what's being done as he'll be asleep, and they're still young enough to forget any of the bad things relatively quickly. It only seemed to take Adara around 2wks to forget her hospital stay completely (she was having nightmares until the other night). And atleast there was some good news with his heart.

I wish there were more positives from your appt... I will be thinking of you and here if you need support at all.

Katanya I'm so sorry that Felix has lost more weight. I hope they find an answer for his weight loss soon.

I feel so sad for you Katanya. I hope you don't mind me saying that. I know this might seem like a strange thing to say, but let me tell you that once they find out why this is happening it will be a relief. Even though I wish Alana didn't have CF, in someways it was a relief to know, as we could get on with it and enjoy Alana without this dark cloud hanging over us.

I will be thinking of Felix next Thursday. I bet he will be a brave little man!
:hug: Katanya and a huge :hug: for Felix.

Katanya... how are you going matey? Hope you're doing ok.

I am doing okay thanks everyone for your comments, I have been on to receive them but haven't had much of a chance to reply this week has been full on

I have been expressing once a day (or enough to get a feed's worth) and add poly joule and give him this while he's eating, seems to be going okay..

Had more drama yesterday, DP had trouble breathing on thursday night, and took him to the Drs yesterday, he ended up going in an ambulance to hospital...having a chest xray because Dr thought he had a collapsed lung..anyhow got sent home with no answers..

Not sure what's going on with the lungs in our house atm??

Felix seems to be okay, I get concerned with his breathing, but I figure there's not much we can do ATM..just have to take it all a step at a time

Really hope things start to improve for you soon Katanya. Fingers crossed that DP is fine.

Hi Katanya

Just a quick note to say I'll be thinking of you all tomorrow. Hope Felix (and Mum and Dad) cruises through his bronchialoscopy.

Good luck for tommorow, Katanya. I'm sure Felix will be very brave.

thanks guys lets hope I am 8-[

I am not sure how I'm going to sleep tonight :(

Good luck Katanya, and of course the brave boy himself, Felix! I'll be thinking of you and hoping that everything goes well.

I'll be thinking of you & I will be around tomorrow if you need anything just sms me!

Hey there Katanya sweetie,
Just checking in to see how you all are?
I hope everything went ok today...
Thinking of you...
:hug:

Hi Katanya, just wanted to say I'm thinking of you, DP and the gorgeous Felix, hope things went ok yesterday.
Take care...

checking in too... I hope everything went okay and you got some answers O:)

Hi Katanya,

I hope you’re just too tired to jump on the pc and this doesn’t mean you had to stay in… I hope everything went ok, pls let us know how it all went.

Thinking of you… take care,

Hi Katanya

yes we're all lurking around here to see how Felix went. Hope all's ok and you're just having a holiday somewhere computer-free.