help!!

[baylees mummy]

ok so i will start at the beginning. when i first brought baylee home he was fine for about 4 weeks. then it all went downhill. he wasnt feeding well, (arching,screaming,choking,gagging and refuseing feeds.) he wasnt sleeping well, (waking screaming,constantly fussing/grunting, waking every 15 mins sometimes and now it varies between 15mins to 1 hr and sometimes he will sleep 3 hrs on a rare occasion.) he is always screaming/crying/fussing in ALL his awake hours. he is happy about 30 mins all up in a 24 hr period. he is refluxing ALL day and spits up alot even 3 hrs after a feed.i can hear the acid coming up and going down. he gaggs and wretches for about 30 - 40 seconds outta no where and does not breath when he does this thereforhe goes blue. very scary. the only way to keep him quiet for short periods is to be constantly walking and swaying him in my arms faceing outwards all waking hours. i am so tired of paceing the floors ALL day long. i feel like im stuck with no where else to go and i cant even sit down for a minute or else he screams. i have taken him to the childrens hospital repeatedly for these symptoms and only got a response when he turned blue and stopped breathing. he now has a public pediatrician whom he sees on a weekly basis but she is very ignorant and wont do any testing. she has had him on 2mg/ml losec 2.5mls twice daily taken as a suspension and mixed with ribena concentrate as he wont take the sus[pension by itself, (he just gaggs on the taste and spews it up) i have tried useing dropper/syringe and putting tiny amounts in his cheek but nothing worked. he has been on it for 3 weeks and NO improvement at all. my life is hell and i just want a break and some answers. i asked her to maybe try him on zoton as it comes flavoured and may work a little better with him and she is supposedly discussing whether or not babies can have it or not with a pharmicist at the hosp. she has been discussing this for a week now so i dont think she is gonna do it. :no:
i am at the point where i want someone to take my baby for a week or two so i can recooperate. i feel so depressed and cant cope. is there any help out there? someone that can make things a little easier or work out what his problems are for me? my poor baby is in so much pain and has no quality of life at all right now. i have no partner suport as i am a single mother. baylee is 2.5 months old. please help!!!!!:banghead: :( :barf:

[RISA]

Hi Bayleesmum
Thank you for contacting us, and I am so sorry things are so bad for you! I was hoping you could contact us at our email address (info @ reflux.org.au (no spaces)) and provide a home phone number we could call you on?? I would really love to be able to talk to you more about all this, rather than just emailing. I will of course continue emailing if that is what you would prefer, but it sounds like you could do with more support than that (and it can be soo good to talk to another reflux parent too).

dealing with refluxers can be really devastating and overwhelming< and it is often made worse by the fact that most people just don"t seem to understand how bad things can be> on top of that< a lot of people tend to judge you when they should be offering support_ and it doesnt sound like you are getting much support at all>

Have you spoken to your doctor about how you feel? Do they know just how bad it is?

Do you have family or friends who can offer you some support? are they able to give you a bit of a break< or at least come to a doctor"s appointment with you to back up everything you need to tell them?

I will post this message now and hope you make contact at our email address< but i will also follow up with writing another message in case we don"t hear from you>

I really think it is important that you let your doctor know how you are feeling< especially as it sounds like you just cant do it any more!!! Honestly< reflux seems to be one of the most diffciult conditions anyone could be asked to cpe with< and you are doing it without the support of a partner!! I"m not surprised you are struggling> I struggled and felt like i was drowning most of the time< and i have a very supportive partner!!! How much harder on you this must be!!!!

I hope to hear from you soon<

Glenda

[baylees mummy]

i really would love to talk with you on the phone but i am afraid i would just cry. i would probably just prefer to email or post to you here. i forgot to ask you if you knew of any good pediatricians in my area or around it? i live near browns plains area. in qld. i also forgot to tell you that i am going to riverton center on monday but dont think it will help much as i think they are there for people haveing sleeping/feeding/settleing issues with healthy babies but i will try it anyway. i just wish i could have someone stay with me for a few weeks to help me out or something. im at breaking point and need some recooperation. that probably sounds rediculous but i really feel that way. i dont have anyone i know who could though cuz they either work or im not that close to them. i dont think i told you that i am 19 either. well any advice will be well appreciated. thanks in advance.:o

[RISA]

Hi Bayleesmum

Please please please- i would love to chat with you as it really can help heaps, and it is OKAY if you just cry because it happens all the time, and I did it myself. I do know why you don't want to, but it sounds like it's important you have that opportunity!!!!!Also, if you contact us, we can probably provide you some names of doctors to follow up with.

There, pushing over (sorry). I just know how much it can help and I spoke to another reflux mum today who said exactly that. You may also be interested to know that this mum is also going to Riverton next week!!

I do understand perfectly too, how you can feel at breaking point and it is really can be that awful!! Reflux babies can be a nightmare, especially as you are struggling to find answers and struggling to get that support!!

It's why RISA exists and it's also why I help out as much as I can. I wasnt/am not a single parent, and it was almost enough to break me- I was definitely at crisis point for quite some time and don't know how I held it together. On the plus side, it allows me, same as the other mums at RISA, to be good listeners because we have been there, and we know all too well!!!

If you can't bring yourself to talk to one of us (we are just reflux mums like yourself, so we totally understand) then please talk to your child health nurse or doctor about how you are feeling! Perhaps even the Parents Line or Life Line. There are still a few more days to go to get to Riverton, and I know how hard that waiting game is!

Please consider leaving us your phone number and we can try to organise some other support for you. We have some members who live close to your area, so that might be an avenue too.

It is really important for you to remember that none of this is your fault, and you are not doing anything wrong!! Reflux babies can be very high needs babies, and most people in the community, including family and friends, just dont understand! and of course then they don't offer you the support that is so important you get.

Glenda

[baylees mummy]

hi glenda,
im back from riverton and it was pretty good actually. they have gotten him to sleep and be content while in there but as soon as we got home he was a nightmare again. grrr.:banghead: i dont know why except that maybe it was a different place and different stuff to look at and he was constantly entertained by this. i was so confident going home and now thats all shattered. he is still sleeping okish but he wont be put down and be content in playing by himself or me. i am back to constantly paceing the floors with a screaming baby. shane (daddy) took him for the weekend but i have been running back and forth from here to his house about 30 mins away to try and settle him. i think i still will need some in home help with this baby. i just tried calling sharon but she was not home so i left a message. would you still like my number or do you have it? i am also starting zoloft at 50mg tablet once a day for my depression and have to see a gp about a referral to see a phsycologist on a weekly basis. i spoke to the one at riverton and totally let everything out and cried the whole time. it felt soooo good. he was worried about me because i am suicidal but i know i wouldnt do it as i am such a woosy and dont have the easy option. know what i mean? i also bonded with baylee in riverton and now know what being in love with your baby really feels like. thats a real positive hey. well i would love to hear from you and thanks for the on goimg support. sharon was talking about an in home child care worker? i think that is a great idea as i will feel safe knowing that he will not be put aside if screaming when another child has to be fed or hurt themselves. know what i mean? and also i would really like her to follow up with that carers payment from centerlink as his meds are really expensive. thanks again and hope to hear back soon. :wave:

[RISA]

Hi hun,
I am glad Riverton went well, but so sorry that everything seems to have gotten so much worse again. Are you able to talk to your gp soon about how you ar feeling? Does your baby's father have Baylee overnight, or does he just have him during the days on the weekends?

I'm really pleased to hear that you bonded with him too, and you got to discover what a gorgeous little boy you have. It is often far too hard to see that far when you ar e feeling so overwhelmed, so as you say, that is another positive you got out of Riverton, isn't it!

Good on you for laying it all out in the open at Riverton too. I know you were feeling like that, but I don't know if you found it hard to open up. I am very impressed you are strong enough to actually let people know you need help; as I said before, I never had that courage and I admire the fact that you have.

Are you able to relax at all while Baylee;s dad has him? Do you get called to come on over, or are you just so uptight you can;t not check? I know what it's like to get to that stage too, and it's horrible as well.

Sharon said she will follow up on the support she was trying to organise (unfortunately, she's sick at the moment, which is why things have slowed down), but will be back on track really soon.

With the carers allowance Sharon mentioned to you, you need to contact Centrelink and ask for the Carers Allowance forms to be sent to you. There will be a form for the doctor to fill out, so perhaps you can do that for when you see the gp too? Centrelink are generally pretty quick at sending the forms out, and will even help you with them if necessary.

Please stay in touch, and yes I think I have your phone number. Please take it moment by moment- and I hope you get to see more of those great moments that you saw in riverton. You know they are there, which is awesome, and even just knowing that, well, i hope that gives YOU hope too!

Glenda

[baylees mummy]

hi, yeah i am making an app with my GP real soon and will discuss the letter for centerlink and my issues. yeah he has him overnight but had to keep getting me to go up there to settle him as he couldnt. it kinda relaxing but i always worry how he is doing anyway. i actually found it hard to open up at first but when i started it kinda just all rolled out by itself. KWIM? i am sorry sharon is sick and tell her not to rush and to just concentrate on getting better. i will get on to centerlink about the forms right away but what do i ask the doctor to write for me? i know he has the capabilities of being a good baby and being hap[py so i just have to figure out what was diff in riverton. we will get there!! lol. thanks again glenda you have changed my life.

[RISA]

Hi,
Have you posted on our parents support group site yet? As a member now, you are entitled to post there, and I'm sure you will get a lot of support and encouragement from the other parents - exactly what you need right now I'd say.

It sounds like things have definitely improved since he went to Riverton. (fantastic!!). It's also really good that you are going to talk to your GP soon. I really think that's very important!

Re Centrelink, you just need to ring them on 13 2717 and ask them to send out the forms for you. I believe that's the one Sharon is talking about, but perhaps it's worth checking too?

Anyway, I hope that helps, and I'm so pleased I've been able to help too. You are doing so well, and I think you'll find tht you are stronger than you think, too

Glenda