Tests, tests and more tests...

I thought I might post in here about what is going on for us right now with the hope someone may have expeirenced what is going on with Felix ATM, also since my posts seem to being getting quite epic about this issue in my home forum of 6-12 months babies..

Okay for a background for those who don't know us and the situation. Felix has been failing to gain weight "properly" for about 3 months. He is 7.3 kgs despite being 69 cms and has only gained around 300 grams in over 3 months. This has been monitored by MCHC and recently due to the fact his ribs are now visable they have refered him to a paedrictian. The other issue that is going on is he has a rather extreme way of breathing. I have mistakingly thought that all babies breathe the way Felix does, although I did ask friend's about the way their babies breathe, but because there are no respitiory issues(he seems to breathe okay) and he gets colds the same as every other baby, never had a serious cough etc I never worried.

The Paedrictian I have been refered was concerened about his breathing style (whole chest goes in very deep in centre, like he's labouring, but he's not IYKWIM) and on friday I was sent for a CTG, blood tests, chest xray, and then he was re-examined. the Paed explained he was checking his heart and lungs. He looked at chest exam which is for the lungs, said they looked okay, then looked at CTG and did pulses and blood pressure, and blood tests came back okay.

..another paed was called in, and she examined him, then they told me that everything didn't add up, they were concerned it was his heart and rang a cardiologist who said it didn't sound like a heart problem, but a heart scan was mentioned as a possiblity for this week. I was told there is extra noise in his chest and they don't know what is causing it. I was asked to come back today to have him re examined, because he had a cold and he thought that could be causing it.

This morning he is re-examined, the Paed tells me the noise is still there, and he is thinking that is it is more likely to be a chest issue. He tells me basically he isn't sure what is going on but that the way he breathes is a concern. He said normally you have to look carefully to see whether a baby is breathing their breathes are so light. He says we are going to order more tests, and if they are inconclusive then in the new year he'll refer me to a Paed specialising in chest problems. He told me that he was going to order a Cystic fibrosis sweat test because symtoms for CF are weight loss and respirtory probs, although it was unlikely that this was the cause, because his heel ***** was negative. He also ordered more blood tests and wee and poo tests..

Felix was AMAZING during all these tests, today he actually laughed whikle having his blood taken from his finger and the sweat test isn't painful at all..best thing is he gets these cute knitted toys from the blood testing centre today they were just so impressed with the laughter that he got a huge knitted donkey..at least he isn't in any pain..trying to do the wee test this afternoon was more painful for me!!

Anyhow I will ring him tomorrow to see if results are back, then we are back to the hospital to see him in 2 weeks, and to discuss the next move.

I have been told to put him onto 5 meals a day of high calorie foods to help to regain weight, and he thinks that with the way he breathes that it could be affecting the energy he burns IYKWIM?

I am strangely not stressing, as there is nothing concrete yet, I just wonder whether after all this they will say it is just him and send us home...

Just wondering if anyone has heard of this kind of thing in their baby or someone elses?

Hey Katanya,
I just wanted to wish you guys lots and lots of luck with your upcoming test results. I am [-o< ing that it is nothing serious, and will have everything crossed for both you and Felix.
Thinking of you both.
Take care,

Katanya, wishing you and Felix all the best for the tests. I hope all the results come back okay.

Good luck!!

Katanya I hope you can get this sorted out soon.

I have also had problems with Alana not putting on enough weight. Alana does have Cystic Fibrosis. She was diagnosed at 7 weeks. One sign of CF is their poo. Does Felix have fatty looking poo, that is really bad smelling? The fat in poo is due to them not being able to digest their food properly. This of course causes them to not put on weight. Also does he seem to be really hungry? Alana doesn't have any problem with her lungs, but it is the primary concern for people with CF.

I hope that the sweat test comes back negative. I'm sure it will as you had the heel ***** test. If it does, I hope that they can sort out whats wrong.

Let us know the results of the test once they come through.

Katanya, still [-o< for you that all will work out ok in the end for Felix and that there are no serious problems.

:luck: :luck: :luck: :luck: :luck: :luck: :luck: :luck:

Take care,

Thanks everyone for your well wishes, I hope the paed is just being cautious and it turns out to be nothing..

Iris, I have read your posts on Alana's CF and no I don't think his poo is fatty, until recently(starting solids) it smelt great (for poo that is when he was just breastfed) for the first 3 months of his life he was a huge/ good gainer all he did was eat and sleep..so CF doesn't make sense.

I think the paed is just covering all bases before refering him on to another specialist in Brisbane IYKWIM? He said he would be hugely surprised if he did have it but I think with the symptoms chest/lung problems and weight loss, he thought he'd double check..I guess there is always a possibility that the heel ***** was wrong, but we'll cross that bridge if we get there..will get results tomorrow anyhow..

The worst thing is my DP is away with work (doing a christmas camp actually) and it would kind of nice to have him nearby. When I rang him today and told him about the CF test, he was a bit freaked out. The thing is we both work with children with disabilities so we are all too aware that not everyone is born "normally" not that when it is happening to your own child it makes any difference..

Goodluck with it all Katanya. We will be thinking of you and have everything crossed that he passes with flying colours and it turns out to be nothing

Love

Good luck Sweet- I'll be thinking of you.

good luck - here's hoping that everything is ok

Got back the blood tests and poo and wee..all normal, still waiting for CF test to be done, should hopefully be done tomorrow..no really no closer to knowing anything :(

Katanya its so far a good sign that the blood, poo and wee test have come back normal. But I can understand the frustration in waiting for test results and also not having any answers. Good luck with the sweat test. Lets us know what the result is.

Katanya, how did it go? Did the other results come back yet?

the CF tests are normal..meaning NO CF..such a relief as I visited the MCHC this morning and updated them with all the goings on (open clinic) and the nurse said Oh wouldn't be interesting if he slipped past the heel ***** test? I thought no it wouldn't! Then she started telling me how some CF babies have respitory issues and others digestive and then some have both..so it started scaring me that perhaps the fats in his poo didn't mean anything and perhaps he did have it..luckily the test results came back this afternoon..

Iris, I think I related to you closer than ever today, i started crying in the car because I was scared of the unknown and what might happen to him in future. Then I wondered what would happen if the Paed rang me and told me that it was positive for CF, what would I do and how would I react, I just don't know if anything in my life would make sense if it did, but of course this was all selfish stuff for me to be wondering how I would survive if something happened to my precious little boy..

Of course with all these negative tests, they still want to look into things further but the Paed has made an appoint for me in 2 weeks and then will reassess whether to send him to the Brisbane Paedtrictian specialist.

He has lost another 10 grams..which doesn't surprise me that much considering he is not liking all this high calorie food, and his poor system must be over loaded..he had a dinner of pototoes, brocoli and olive oil, and then strawberry yogurt and he grumbled through every spoon full..I am just dying for the day when food can be a pleasent experience and I am not looking for a window of opportunity to spoon another mouthful in..

Then to make matters worse right after his bath he wouldn't settle so had a play with Daddy and did this ENORMOUS stinky poo that smelt like yogurt when i changed him..poor little belly.. 8-[

The MCHC said to just give him whatever he'd eat, don't worry about sugar (high calorie) and try tuna with oil, and dairy was fine etc..I am so confused all these things I wanted to wait for and now I am being told to stuff them in there..and breasfeed afterwards not before..

Sorry to rant and ramble on..just been one of those weeks...Poor DP came back after his camp today all happy and I was like "did you have a good camp, that's great, I have had a horrible week.." talk about a downer..

Anyhow now that Felix is in bed I'm off to spend some quality time with DP...

Its so hard the unknown!! I hope things settle for you guys!! It makes life so hard when every feed time is stressful!

HI Katanya

Hope you get some answers very soon, as I can imagine how frustrating not knowing anything is.

Lucky Feli is easy going, he seems to be taking it all in his stride which helps. LOL at the food thing though, he must think it very strange to be given so much food!

Best wishes Michelle

I'm so glad to hear that the CF tests came back normal, Katanya! I hope things get better soon and that Felix starts gaining some weight.

Take care.

Katanya I am so happy for you that the CF test came back negative. That would be some relief, though in some ways your back where you started with no answers. Frustrating!

Don't feel like you are being selfish because you are wondering about how you will cope or survive if something happened to you little man. I certainly had those feeling, straight after "if I could have Alana's CF I would!" I also had the whole why me, what have I done, am I being punished. I even thought to myself wasn't having a M/C enough! But you get over that, and that motherly strength kicks in and all you care about is your childs life.

I hope he starts to feed better. Alana is the complete opposite. She can't get enough of food. She can finish her bottle (230ml) in about 15 minutes. I know what you mean about given them food that they normally would not be given. I didn't want to start Alana on solids until 5-6 months, but I know I will have to start her soon. She's only 3 months.

Anyway I hope you can keep us posted on how he's going. I am certainly interested in his progress.

Thanks for your thoughts everyone, especially you Iris, I know you have been through all this (and worse) and understand the emotional rollercoaster it is. I appreciate your comments about the selfish feelings and as much as I said I would be prepared for anything when I had Felix, the reality is I want him to be healthy for the rest of his life..That is great Alana is such a big feeder, she sounds like she is really doing well..Felix ate some homemade icecream yesterday ..and the Grandmas took turns feeding him his food..they were amazed at how little he eats!

I had a wonderful Christmas yesterday because it is the first day for over a week that I haven't stressed about what Felix is eating or trying to feed him, nor talked about it to anyone as some of the people there didn't know about the tests, because we don't want to stress anyone out until we know something for definate..so it was good for me..I was the most relaxed I have been for a LONG time..
Pictures of our Christmas:

http://share.shutterfly.com/osi.jsp?i=EeANmzVqzaMmzCZg

Hope everyone had a great Christmas

Awww they're fantastic pics, Katanya! Thanks for sharing them. Felix looks so very cute in that santa hat! Glad to hear you had a great Christmas!

Sorry Katanya I`m so late in replying but just found your post. I wish you the best of luck with Felix and what great photos of Felix`s First Christmas.

Take Care

Deeanne

Glad to hear that the cf tests came back negative - hope that things start to improve.

Good to hear that you are more relaxed about what Felix is eating.

Hi everyone

We saw the paediatrician today and he examined hime and weighed him again.

The good news he has gained 110 grams in 10 days..YAY!!

The paediatrician has refered him to Brisbane, and hopefully we'll get some more answers there, unfortunately he will mean trips to brisbane(at least i'll get to visit Christy and Ambah though!) to the Royal Childrens Hospital. The noise in his chest is still there without any obvious infection and the breathing is still the same. So Paed said at the least it could be a chronic infection and anything else the specialist will investigate.

He told me that he didn't think likely that his condition would decrease drastically in the immeadiate future, he is concerned that it may be affecting his weight and hence the investigation.
So we are back at stage one, he refered him to dietician too but i cant get an appointment till march...sigh..nevermind as long as we can work things out by then!

anyhow good news in most ways..i am not focusing on this much just day to day.. situations like the tsunami makes you put small concerns in perspective at least!

That is great news about Felix's weight gain Katanya! I hope the hospital in Brisbane can help with some answers on the breathing, but at least he is putting on weight. All that egg custard must have done him some good =D> .

Yay for Felix! Its great when they put on weight. When is the first appointment for the new Paed?

Yay Felix and lets hope Brisbane will give some answers.

Good boy Felix!

I hope that Brisbane gives you some answers.

I also have a little boy who doesn't put on weight. Now he's nearly 20 months and I've given up... been to doctor after doctor and they all say different things, and my DH who's a nurse just says he's skinny and we can't do anything about it.

Mind you, my grandmother says that children won't starve themselves, and they eat when they're hungry. Her kids were all skinny runts too!

I'm sure you'll find someone who will support you with the BF and solid feeding.

Best wishes.

I am coming to terms with the weight thing I figure I am offering him plenty of food and BM when he wants it and so if he doesn't want it mustn't be hungry right? The extra 110 grams has added some wonderful and much needed padding to his arms and legs and even his face seems fatter..ribs still stick out but what can you you do?

Not sure when the appointment will be in Brisbane, the GC Paed has written the referal and they'll send me a letter..hope its' not TOO long away..I'be had good expereiences with the GC hospital paediatric services so far but not sure how good the non emergency care is..

I have stopped thinking too much about it, I have resolved to only stress when I have hard evidence in front of me..still good to talk about it though thanks for your support everyone..

No probs sweet! it's why we're all on here!! *hugs*

No problems, happy to talk anytime!

SO glad to hear good news on Felix, Katanya.

Hope all goes well with the next app, and you get to the bottom of things soon. If he is happy and healthy looking then you must be doing something right.

Cheers Michelle

Just letting anyone who was following what is happeing to us that I have posted in the Children with a disability/illness thread as now we know something is up..just got to work out what it is exactly!