Author Topic: Desperate help needed we have just gone on to Neocate ?  (Read 4986 times)

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Offline Debonair

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Desperate help needed we have just gone on to Neocate ?
« on: May 23, 2005, 07:31:30 am »
Hi

My Ds is 4 months tommorrow and has only put on 4lb since he was born now weighing 12.7 lbs, he was diagnosed with reflux, now MSPI and I just can't seem to get him to feed I've tried everything and today I just want to cry and cry, he will only take about 2.5 ounces at every feed yet, total of 15 a day should be 30. I have seen him down 8 ounces in the early days no worries, every day I wake up wishing this is the day he gets better, everyone tells me it's o.k., but it's NOT, there not here fighting to get him to drink, he wants the bottle but then he can't suck and if he does suck not hard enough, we have been told he is anemic because he is not digesting the old milk he was on, and his blood count for his kidney's are suspect I think from the research I've done, but the docs haven't said anything about that. He has been on this new milk since Fri now Monday and I can't see any improvement, what are the best bottle's and teats for neocate with gavascon in?, also his bowel movements are dark green with seed like lumps in is this normal?, he keeps going rigid when he needs to burp (i think) after his 2.5 ounces, I've tried burping after 1 ounce but it makes no difference. apparantly the neocate doesn't taste nice, i just do not know what to do he looks so thin and pasty and I am so worried, I cant sleep properly and keep having horrible dreams he's going to die, he did have apnea at 3 weeks old so I know this doesn't help but I just am not satisfied this is all that is wrong with him, has anyone else been through this is there light at the end of the tunnel? I need support and some confidence from people who have been through it not from my friends who are mums that have had no problems and tell me oh look there's nothing wrong with him he's got chubby legs! (that's muscle not fat however but I HAVEN'T THE STRENGTH TO EXPLAIN!, this is my first child I love him soooo much and I wanted him sooo badly I'm just distraught I'm not getting a chance to enjoy him. SORRY TO WAFFLE ON, has anyone else got a child who only takes about 15 ouynces a day at 4 months ?
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Offline matt&chris mom

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Desperate help needed we have just gone on to Neocate ?
« Reply #1 on: May 23, 2005, 14:31:28 pm »
Try this website http://www.quicktopic.com/23/H/aSxbbAkUULVMX
You will have to copy and paste it so it will work.

I have seen people post about neocate there.

I'm sorry you and your son are having problems (HUGS).  I hope he will start drinking more milk once he starts feeling better.


Minerva

Offline Tonya

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Desperate help needed we have just gone on to Neocate ?
« Reply #2 on: May 24, 2005, 14:35:10 pm »
I am so sorry you are going through such turmoil!  You are right, you have the right to enjoy your little one, its just hard at this moment!

I don't have a ton of advice, other than keep pushing your doctors for help/answers.
You said he was diagnosed with reflux - is he on meds? Do they seem to help?
It's only been a short period of time that he has been on this formula - give it a bit more time and maybe he'll be drinking a ton!

Also, I still have to do this whenever my ds is sick cause he refuses any food or drink, but if you are really really worried about how much he is drinking, you can give more frequent, smaller amounts of formula.  If he is drinking 2.5 ounces at each feed, maybe you could give him 1.5 or 2, and decrease the time in-between feeds.

When I have been really desperate to get fluids in my ds, I have used a medicine dropper to dispense formula or pedialyte(when I was concerned about dehydration).  You can just squirt some formula in his mouth anytime you want - one dropper full at a time shouldn't bother him, and if you are dilligent about it, you might be suprised how much additional fluid you get in!

Also, the bowels sound normal - pasty, seedy like bowels are normal.

Take care, my prayers are with you!
Tonya
Mom to Nathan - "Chunky Butternut", 02/18/04
           Madison - "Princess Pea", 11/29/06


Offline GraceKellysmom

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Desperate help needed we have just gone on to Neocate ?
« Reply #3 on: May 24, 2005, 19:03:22 pm »
I don't know if the link above is to the mspi forum boards or not. Try this link  http://www.mspiguide.com  and click on the forum button in the bottom right hand corner. There are a ton of old posts to read or you can post a new question and receive support. The moms check in and out throughout the day so don't get discouraged if the responses are slow.

I would personally push for reflux medicine stronger than Gaviscon. In the US, babies are given medicines like Prevacid, which change the acidity in the stomach and allow the esophogus to heal. If your doctor will not help you, then seek out another doctor who will.

I'm sorry I can not help with the formula, I've breastfed my MSPI baby for 10 months while I am on a special milk/soy free diet. I hope that website above can give you answers on the Neocate.

Please, please, try to get some help for yourself. Do you have a mother or sister that could come over to help with the baby so you can spend some time by yourself? You sound ready to crack - and that is not good for you or your child. {HUGS}
Stacy, Mama to
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Offline Livvismum

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Desperate help needed we have just gone on to Neocate ?
« Reply #4 on: May 24, 2005, 19:20:16 pm »
Hi there

Really sorry that I couldn't respond to you yesterday, we are getting PC problems here.

I absolutely know what you are going through as my dd was born at 9lb and she still hasn't doubled her birth weight (she was 17lb 13oz 1 week after her 1st birthday). We struggled getting her onto Neocate a few weeks ago as I decided to stop breastfeeding. She was only taking a max of 3oz each bottle but generally one or two. After about a month of perseverance she is now taking 6-8oz per feed and I never thought she'd get there.

Neocate is definitely an acquired taste and it may be that your lo just needs time to get used to it. Also it could be that your ds needs a little longer for his insides to heal and until then it may just be little steps.

The MSPI forum is definitely helpful but can get a bit technical but you'll meet lots of mums who have had a similar struggle.

I can't comment on the reflux as we were never diagnosed although Liv did show signs on and off.

Hope that helps. If you need anymore support or help don't hesitate to reply to this post or to pm me.

{{{{Hugs}}}}

Sara

Offline izzys mum

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Desperate help needed we have just gone on to Neocate ?
« Reply #5 on: May 25, 2005, 20:50:23 pm »
Hello   :D
We've been on the Nutramigen for a few weeks now and it's finally working. Izzy had to be introduced to it over a week - we had to add it to her usual formula. We did 5scoops normal/1scoop new, 4scoops normal/2scoops new and so on over a week. Yes she was still sick but not as much. Nutramigen is like Neocate.......an acquired taste. It smells disgusting and makes me feel sick when I have to taste her food in a morning when it's been added!   :)
But, we did get there and now she is a different baby. Her sleep is getting much better and she is a lot happier. We still add Gaviscon to her feeds but only on a night now. Have you tried Avent bottles and teats? We're using the number 3 teats when we add the gaviscon.
Her eczema is slowly getting better - we have cream for that now, and she is finally eating again.
We went through the first week/week and a half where she wouldn't eat more than 10-15oz but now she's back on 3 solid meals a day and 25 (ish) oz formula. Trust me (and I know how irritating it is when people say it) it will get better. You need to give a formula around 2 weeks to start showing any improvement and then if it doesnt go back to the doctors. Keep with the gaviscon for now but you may need to switch to something else if necessary. We're only putting it in night bottles now as it made Izzy constipated.   :(
I'm finally starting to feel like a good mum again. I've felt exactly like you where you cannot be bothered to explain as noone really listens. Just remember that there are people on here who have been through it and will try and help. They've certainly kept me sane   :D
Keep up the good work. And let me know how you get on
Isobel 13/09/2004
Spirited baby



Offline Debonair

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Thank you all soooo much for your support I have new news...
« Reply #6 on: May 29, 2005, 09:39:55 am »
Hi,

Well the day after I posted I had a routine outpatients appointment with the local hospital and one of the peadiatricans, I asked my mother in law to accompany me so I could talk to the doctor alone before he looked at my DS and make his diagnosis and be confident HE WAS listening to what I was saying this time!  :evil: I had a list of questions ready.
My Ds had to be weighed the nurse put him on the scales and that morning he had just point blank refussed any feed I asked my mother in law to try for me to see if he would take from her as he could most certainly feel my anxiety...HE DIDN'T, (I knew he wouldn't but about a ZILLION people have said ohhh he's probably just feeding off you being worried, it'll sort itself out) anyway he was empty as empty could be and he was dehydrated, the nurse said she was quite new to this and looked absolutely horrified I ASKED HER WHAT WAS WRONG AND SHE SAID OH NOTHING IT'S JUST YOUR SON HAS LOST OVER 1Ib and a half in a week, you could have knocked me over with a feather, i quickly baffled to her everything that had happened she went to see the doc and came out saying he'll see you in a minute I do hope he gets better soon.
Anyway I've been battling on telling everyone I know there is something wrong, look at his colour he's dehydrated etc, etc and everyone's just been saying he's ok, IS THIS YOUR FIRST CHILD ?, anyway the doctor was a bit confussed at first I didn't take my DS in and was anxious himself (For a change) to see him, I said yes in a minute I need to talk with you first!, I couldn't work out why he wanted to see him so quickly at first then he spoke and it hit me, he said unfortunately we are going to have to keep your son in hospital again (for the nineth time) untill at least Friday and feed him by tube he's too weak that's why he's not feeding and we are going to ultra sound him (this was before he even looked at him, of course he was right! however I knew that, that's why I was loosing it, I thought I was going to loose MY BABY!)
Anyway cut a very long story short, nothing came out on the ultra sound I am furious that now I am feeding my DS by tube when at least a month a go if they'd listened to me saying he was intollerant of the milk and it was hurting him, my son would have had the strength to continue sucking the new milk that would obviously have helped him as now after just one week of feeding him 6 ounces every 4 hours 6 times a day by tube, he is over 13lb put on 2lb, his colour is back and I am sooo relieved that I feel he is on the mend, and feeding is enjoyable because at the end i know HE'S eaten. and he is not in pain, Yesterday at one sitting he took 4 ounces by bottle and then the rest by tube, I offer the bottle before hand just incase he wants it himself. I have had a couple of people stop me in the chemist as we can now venture out of the house and say oh what's wrong with him ?, and the nurse said in the hospital be warned some people may be funny if they know it's a feeding tube and ask questions, I said do you know what, I DON'T care as long as my darling DS is here happy and I can feed him it doesn't matter how he gets it, they tried to say oh he won't need the tube for long and I am petrified they take it away and he gets that low again but I wont let them untill I am satisfied he's strong enough and wants to feed by the bottle, he and I have been soooo traumatised by it all... :cry:  honestly if you've been through this you'll understand but he must have been in sooo much pain he screamed in fright whenever the bottle came near him, now he smiles holds his arms up for the bottle and giggles at the tube when I change over, what a relief! THANK YOU all for your replies and the support and being such lovely people, we'll ket you know how we get on XX Oh and the diagnosis was just MSPI causing reflux, colicky wind, tummy ache, constipation and runny stools which could have been sorted when he was 6 weeks old now 16 weeks. Anyway for all our sakes, please be rest assured I haven't lost it, I love my DS and husband and know however hard it's been or is going to be the things in life that are worth it take a lot of hard work and are worth fighting for XXX
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Offline matt&chris mom

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Desperate help needed we have just gone on to Neocate ?
« Reply #7 on: May 29, 2005, 13:18:29 pm »
HUGS

I'm glad your son is doing better.


Minerva

Offline deedee

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Desperate help needed we have just gone on to Neocate ?
« Reply #8 on: May 31, 2005, 14:54:09 pm »
Hi! Just wanted to tell you my daughter (now 15 months) is a MSPI'er and a refluxer too - its been hell on sleep and all things that should be easier. Not to mention that I discovered the MSPI on my own at a year! Its been hell. This is the board that I found that was essential to my mental well being through it all - theres an MSPI section there - http://www.infantreflux.org.

How long have you been doing Neocate? As you can see once the milk and soy proteins get out of their systems its like a whole new ball game. I know how frustrating it can be since MSPI AND reflux causes stomach cramping, irritability, sleeplessness, and general discomfort. I so wish for you and your lo that relief is right around the corner which I am sure it is. Neocate takes a couple of weeks to heal any residual stomach damage from reflux or MSPI and it could take up to 3-6 weeks to get all of the offensive proteins out of the system. As far as the reflux goes - that can get much better once the MSPI is under control or it can be secondary or in combination with the MSPI like my daughters. Hope it goes away with MSPI treatment.
~Elizabeth
Proud mamma to Spirited Sophia

Offline Debonair

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2 weeks on
« Reply #9 on: June 03, 2005, 19:36:43 pm »
Hi,

Thanks again for all your support and Deedee your advice is much appreciated, my DS has put on another 1IB now 14IB and I weaned him today HE ABSOLUTELY LOVED the baby rice with his new milk neocate  :D we had a great time , (he still wont take the bottle) and I do believe he still has reflux secondary or possibly the proteins are still in his system.

The only other little problem we still have is his stools are still really hard rabit dropping like, he is passing them and accasionally they are congelled to one big lump which he does strain to pass, is this o.k. do you think? they are really green with streaks of almost black in, I have researched the colour is normal not sure about the consistency ?, it's been like this for 2 weeks now, I've been giving more and more water to help, we see the doctor again next friday, but as his own colour and weight is good I'm not too concerned.

I'll keep you updated.

Lots of hugs xx
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Offline Debonair

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Just wanted to let you all know my DS is 9 months
« Reply #10 on: October 28, 2005, 23:16:37 pm »
had tube out at 6 months and now takes 9 ounces of neocate per bottle what a turn around.
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Offline GraceKellysmom

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Desperate help needed we have just gone on to Neocate ?
« Reply #11 on: October 29, 2005, 00:53:25 am »
Can't believe I missed your updates, I'm so sorry! How fantastic he's feeling so much better and drinking.

Have you found that the Neocate causes the stools you describe? Is he still doing well with solids? What meds are you on now?
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Offline kc

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Desperate help needed we have just gone on to Neocate ?
« Reply #12 on: November 08, 2005, 23:23:24 pm »
Debonair,

I have just read through this thread & can't believe what you & your lo have been through, I was in total shock & in close to tears :shock:

What wonderful news that he is now drinking 9oz per feed! I hope that you are now getting to enjoy being 'Mummy' & so glad you posted the update. :)

Take care, hugs

Karen



Offline Debonair

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Re: Desperate help needed we have just gone on to Neocate ?
« Reply #13 on: February 11, 2006, 22:18:35 pm »
Hi

I just wanted to post this new message for all those who read the threads.

My DARLING son just passed his first birthday.....WOW what a year.

He is now 20lb...I remember dreaming about him being 18LB and praying for that day!, we had him christened recently and it was such a lovely day.

He is doing very well, eats lots of solids all  sorts especially with garlic he isn;t a fussy feeder at all, he loves his food, still drinks the neocate and loves it believe it or not! about 25 ounces a day...he just will not hold the bottle but to be honest I don't want him too, I love just cuddling him, listening to our music, feeding him and telling him how proud mummy is of him and how much her and daddy love him....he's even walking.....bless him.

He is what is classed as ATOPIC, Asthmati,c and has a low immunity, but to be honest this is nothing in comparriosn to what we did go through. The doc said he will grow out of theese.

I hope this post gives light at the end of the tunnel to anyone who possibly goes through what we did, I hope no one ever does!!!, BUT IF YOU DO PLEASE TRUST YOUR INSTINCTS.

On the positive it made me a better mother for lots of reasons, a bond me and my son & husband will share forever, and a trust in each other which is really what family is about so for that I am gratefull.

The post about NEOCATE stools is correct and if anyone wants any help or advice please contact me, I'm so happy to help.

THANK YOU ALL.

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Re: Desperate help needed we have just gone on to Neocate ?
« Reply #14 on: February 12, 2006, 02:03:53 am »
Forgive me, haven't read through it all. Could he be tounge-tied? I saw you write that he doesn't suck well?

*hugs*  That must be so hard.  *more hugs*

Hang in there and vent as you  need to here.

 :)