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  1. #21
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    Quote Originally Posted by faith72 View Post
    No, he didn't mention anything about meds for emptying. So there are meds around that work for that? He just said to try this new formula and he'll see us in 6 weeks time.

    Is Pepti Junior simply like a HA formula???
    Yes there are medications to help with gastric emptying, Erythramison is one of them, domperadone being another maxalon the third ( maxalon isnt as comonly used her in aus)


    With formulars Pepti Jr isnt the same as the HA formulas you by over the counter, the HA ones you get over the counter that claim to he HA are partialy hydrolised.

    then you have Alfaré (Nestle) Pepti-Junior (Nutricia) they are Extensively hydrolysed protein.

    then you have Neocate and Elelcare and they are amino acid based proteins

    Alot of the time pepti is used as a step down from neocate or elecare, when seeing if ready to wean back to normal foods, But its also used like in your sons case as a first step, and if that isnt enough they move onto neocate or elecare.

  2. #22
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    Quote Originally Posted by Mikenzees mum View Post
    Yes there are medications to help with gastric emptying, Erythramison is one of them, domperadone being another maxalon the third ( maxalon isnt as comonly used her in aus)


    With formulars Pepti Jr isnt the same as the HA formulas you by over the counter, the HA ones you get over the counter that claim to he HA are partialy hydrolised.

    then you have Alfaré (Nestle) Pepti-Junior (Nutricia) they are Extensively hydrolysed protein.

    then you have Neocate and Elelcare and they are amino acid based proteins

    Alot of the time pepti is used as a step down from neocate or elecare, when seeing if ready to wean back to normal foods, But its also used like in your sons case as a first step, and if that isnt enough they move onto neocate or elecare.
    thanks so much for that information. I'm wondering why we didn't go straight to Neocate or Elecare - I had mentioned that we tried Neocate for 3 days and DS seemed no better and actually worse - he said it can cause a bit of constipation initially and that's why he may have seemed worse but said 3 days is not long enough to determine.

    I just tried to feed him on the Pepti and he screamed while refusing the bottle. It's hard to know if he's in pain or just doesn't like the taste! I then gave him some pureed pear and rice cereal and he smiled and had 5 spoonfuls. Hopefully he gets used to the Pepti taste soon. You reckon if he continues to refuse I go half/half with regular formula initially to ease him into the taste?

  3. #23
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    DS2 was 4 months old when I saw a paed who put him on Neocate. He advised us to add it into his soy formula (which paed said most cmpi/a bubs are also allergic to) gradually increasing neocate and reducing soy formula. We did it over the course of 6 or so weeks. It did help him get used to it quickly. It did take a good week or more for solid improvements.
    neocate makes their breath stink, but DS2 loved his bottles and happily moved onto rice milk at 2 years old.

    In hindsight I would have reduced the soy formula much more quickly,as the chucking and other reflux symptoms did not reduce until we had eliminated soy from his bottles.


    What a load of rubbish some drs come up with. Both my boys are cpmi/a. DS2 more than DS1. We noticed a problem with DS1 at 14 months, when he stopped talking and started screaming on waking. DS1 didn't talk again until I took him off soy and dairy at 2 years 2 months. We haven't lokked back, his excema cleared up almost instantly and he started talking within days. He now talks at the level of a 4-5 year old. DS1 has been tested and is not lactose intolerant, but there's no way I'm game to try him on dairy even if a dr recommends we try. We're due for dairy testing at the end of the year. Who knows what the results will be??
    My mum, now in her 50s is still cpmi and can only handle small amounts of cows milk, and is very allergic to goats milk. I too can't eat goats milk, and hate it when people tell me to try goats milk in place of cows - it's a milk protein allergic - found in all types of animal milk - duh!

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    Sarahg - really?? Is that true about goats milk?? my paed has told me bubs is cmpi (never tested he just guessed) and said i could eat goat and sheep product instead!!

    And if that is the case how come it's called cow milk protein intolerance and not dairy protein intolerance??

    Or am I missing something somewhere??

  5. #25
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    Quote Originally Posted by TusMama View Post
    Sarahg - really?? Is that true about goats milk?? my paed has told me bubs is cmpi (never tested he just guessed) and said i could eat goat and sheep product instead!!

    And if that is the case how come it's called cow milk protein intolerance and not dairy protein intolerance??

    Or am I missing something somewhere??
    The protein in goats milk is very simalr to cows milk, they are still whole proteins and not broken down, Most that cant havecows milk cant have goats either

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    What about sheep? The only dairy I eat is sheep fetta. Does it have similar protein??

  7. #27
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    That I dont know, I shal try and find our for you

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    I haven't come into this thread for a while because I thought it wasn't making a difference to anyone that didn't already have their bub dx. So happy to see though it's made some people question. My son neveR had blood in his stools ever in the beginning. It wasn't till he was well for 6 months and then had something he reacted to that he got really bad colitis which basically caused him to pass blood clots.

    I think the fact he was so unused to having his digestive system compromised when he finally did get a little bit of something he couldn't handle it did more damage than when he used to have milk constantly. It also took him about a month to get better. After 2 years and 2 children with these problems I was sceptical because I'd been told everything and at first the elecare didn't work. It was just that he was so damaged it took a month to heal the damage but he has been fine since.

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    Quote Originally Posted by ManekiNeko View Post
    I haven't come into this thread for a while because I thought it wasn't making a difference to anyone that didn't already have their bub dx. So happy to see though it's made some people question. My son neveR had blood in his stools ever in the beginning. It wasn't till he was well for 6 months and then had something he reacted to that he got really bad colitis which basically caused him to pass blood clots.

    I think the fact he was so unused to having his digestive system compromised when he finally did get a little bit of something he couldn't handle it did more damage than when he used to have milk constantly. It also took him about a month to get better. After 2 years and 2 children with these problems I was sceptical because I'd been told everything and at first the elecare didn't work. It was just that he was so damaged it took a month to heal the damage but he has been fine since.
    This thread has been so helpful for me - thanks so much for posting it! The whole forum has been great as it can sometimes feel quite lonely having a baby that is not doing the normal thing and nobody else seems to "get it" and they don't understand how hard it is. So it's good to speak to people who know what they're talking about and know what you're going through.

    It's promising for me to hear that it took a month for your baby to show signs of improvement. We are on the Pepti Junior and saw an improvement yesterday with the amounts he was taking - he could take 90-100mls in one go instead of his usual 60mls. Then last night he woke up at 1am and screamed in pain (the last time he did this was when we trialled the Neocate about 6 weeks ago). Then today we are back to the 60mls at each feed and crying and not wanting the bottle. I told myself not to get my hopes up yesterday but I couldn't help it - now I feel let down again! He's not yet done a poo today so perhaps it's just a bit of constipation?

    Did you have good days and then bad ones?

  10. The Following User Says Thank You to faith72 For This Useful Post:

    jemmajam  (16-02-2012)

  11. #30
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    I definitely had good days and bad days. Sometimes he seemed ok other times not. I didn't make the connection at the time but seeing as I struggled to feed him and always had to while he was asleep I was absolutely thrilled to get about 1000ml of soy formula into him one day. The next day however he screamed for 6 hours straight and i held him the whole 6 hours. At first I was like ok he cries every day max 2 hours it's going to end. By I think about 4 hours I was in tears walking around with him just holding him crying asking why he wouldn't stop screaming and why this was happening and why I couldn't help him.

    I spent those 5 months before diagnosis in hospital stays with several drs giving opinions, went to gp's, went to hospital paeds not to mention the troubles i went through with my older child. I had really seen so many drs and been told so many things when the elecare didn't work at first I was scared. I remember he actually not long after starting the elecare started vomiting brown milk (obviously had blood in it) Thank god it was a one off and my fears were not valid and after a month he did get better.

    We sometimes get issues when he's accidentally got a hold of something he can't have like for example 1 smarty and within 2 hours he's had diarrhoea again. Sometimes it jsut passes but other time it seems to effect him more like when he ended up in hospital for 2 weeks at 11 months with colitis passing blood clots for more than 2 weeks. He had to fast on glucolyte for 3 days to heal the wound in his colon that was either a food reaction or virus. Just last sunday I gave him fruit that I didn't realise had eccinachea in and he had severe diarrhoea till thursday and atm has blood specks in his stools which is how the colitis started so yeah i'm a bit worried.

    Having said that though he doesn't have any problems when his diet is under control and that's been since 6 months (a month after he was diagnosed and he's 17 months now.) If pepti jr doesn't work don't loose hope because it's the least hydrolysed and my paed put my son straight on to elecare being the most hydrolysed because he felt his stool sample showed a real cause for concern. I hope all works out for you hun it is a hard thing to go through the screaming, the feed refusals, the sleepless nights and seeing your baby in pain and feeling helpless so I hope it all works out hun.


 

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