View Full Version : Why are doctors not checking for cmpi or cma?
ManekiNeko
12-05-2010, 18:15
I am really quite angry about this topic and I want to know why doctors are not offering up cows milk protien intolorance or cows milk allergy as a reason for colic and reflux symptoms in infants. I also want to know why parents of children with reflux sometimes refuse to accept that ongoing issues with reflux should be looked further into... Considering statistics say 50 - 80 percent of children diagnosed with reflux actualy have it secondary to smpi or sma with the majority of their reflux being the result of cmpi or cma. Why don't people want to believe this and continue to struggle on believing it's just reflux and not investigating further.
I went through 2 years of hell with my first child thinking she had reflux, the screaming, the wind pain, the dioherea (which i guess i mistook for teething) the feed and food refusal the blood stools. It wasn't till I questioned my Son's similar issues and told the doctor's I couldn't go on feeding another child in a dark room or during their sleep. It wasn't till 6 months old a stool test showed his high level of alpha 1 antripsyn in his stool infact 11 times the regular amount did someone question he was intolorant. He was then put on to a hydrolised formula and within a month we never had issues ever again.
Why are doctors not getting on to this and telling parents this is a possibility rather then just tossing them all in the reflux basket. I honestly don't even know many cmpi bubs that weren't misdiagnosed with reflux. Sorry but this just gets me frustrated both my children suffered in pain with no voice to speak out as do many other babies when are doctors going to get it right.
WorkingClassMum
12-05-2010, 18:30
ManekiNeko - I am sooooo with you.
My kids story is also a long involved one getting a dx - even the Dr DH at the RCH told me there was nothing wrong and I was dreaming :gloomy:
Once we had DS sorted and DD had the same symptons anbd WORSE my GP said that you don't get two kids in the same family with the same problem :rolleyes:
That being said, there are soooooo many more food products around now as when I started down this path nearly 9 years ago
sarsjovi
13-05-2010, 09:31
Hi :wave:,
Paeds don't want to know about it either!! I ended up diagnosing my DS CMPI myself.
I went to my GP with my DS who had blood stained mucus in his poo, fussy at the bottle, crying all the time etc. He sent us off to the Paed straight away. I expalined to the Paed i had been reading about CMPI and thought my DS may have it. He then told me my DS "probably" had colic and was just a "sooky" baby. He also told me my son couldn't have reflux because "he liked going in the car, as babies with reflux don't like the car!". I asked if i could take him off cows milk formula to see if it made any difference. He told me "if i really felt i needed to". He told me which formula i could try. So that night i put him on a new formula. Within days i had a new baby!!! No more fussing at the bottle and excessive crying and no more blood stained mucus in his poo :thumbsup:
Needless to say, i will not be returning to that Paed!!! :no:
ManekiNeko
13-05-2010, 09:45
Wow I still never cease to be amazed at some of the things doctors and paeds say. I suspect some mothers doubt a dx of cmpi or cma because drs bully them into thinking it's either just reflux or nothing at all. I know I had to "proove" the cmpi and soy protein intolorance to actualy get a hydrolised formula. Could it be that drs are so reluctant to diagnose because of the high costs to public health in subsidising hydrolised formulas?
Sparklydreamer
22-05-2010, 12:29
Aboslutely agree and its a frustration of mine as well. The number of people who have their babies diagnosed with reflux without the dr suggesting any investigation into possible causes seems massive. Its just like, 'well its reflux, not much you can do except try some zantac or losec' if they're lucky to even get that far.
We struggled with DD for 2 years as well, talking to dr after dr before someone listened to us. We pushed for help for DS early this time because we had more experience and were not going to be bullied. And we were lucky to find a great paed who was astounded at our treatment with DD. DS was put on Neocate. I feel very guilty that our poor DD had to go through 2 years of pain.
I think you're spot on that doctors are reluctant because of the high costs involved. I had our local chemist lecture me about using Neocate because of the cost even though I had a script! I go somewhere else to get it filled now.
reAllytee
28-05-2010, 22:17
Frustrates me to no end ...
Oh & I swear if I hear about 'Lactose Intolerance' one more time I am going to :geek:
Really fed up with G.P's with little to limited knowledge diagnosing all these babies as LI when it isn't the case .... Frustrating, irritating etc ...
Oh wells !
ManekiNeko
13-07-2010, 17:09
I just thought I would bump this.
Do babies with CMPI always have blood in their stools? DS has never had blood or mucous in his poo's - would this indicate that he doesn't have an intolerance? (and the fact that his stool sample came back as "normal"?)
Oh honey you are preaching to the chior on this one lol.
Reflux most part is a symptom not a diagnosis, Reflux can be a symptom for many many things, CMPI, delayed emptying, slow transit bowels the list goes on
Yes a child may have reflux but a child that screams and puked shouldnt be just brushed of with a reflux label, there should be more done to find out WHY
yes alot of babies reflux and are just happy chuckers and thats fine but it can also be a sign of more going on like with My DD
Frustrates me to no end ...
Oh & I swear if I hear about 'Lactose Intolerance' one more time I am going to :geek:
Really fed up with G.P's with little to limited knowledge diagnosing all these babies as LI when it isn't the case .... Frustrating, irritating etc ...
Oh wells !
Lactose intolerant
peanutbutter&jelly
16-07-2010, 19:27
F-ed if I know, but its ridiculous!
Once I worked out what DS's problem was he was fine... once it was pointed out that DD was heading down the same track, no more dairy = no more back arching and screaming. Minor miracle? Coincidence?
Ah no.
It was never pointed out to me by the paed, never by the ECN, never by the GP. I worked it out by myself with DS.
DD is almost 7 months (hear that Ally :( Almost 7, whole, months *sob*) and she can't tolerate any CMP at all, even through BM :/ Puke City :barf:
TripleTime
16-07-2010, 19:32
I found most parents go to their GP, GPO fobs them off & they dont take it any further. They dont push to find out why etc.
There was a thread the other day where someones child had stopped breathing when they refluxed but they stayed home instead of going to the hospital cause they'd been made to feel like a fool by their GP.
That is not cool in my books.
DS stops breathing when he reflux's, it not something to take lightly.
Lactose intolerant
Thats just cruel!
So, how long would it take to see an improvement by using a hydrolised formula IF DS has an intolerance? We tried Neocate for 3 days a while ago (my paed wanted us to trial it before writing a script) and he actually seemed worse so we didn't bother getting a prescription. I guess 3 days is not long enough. Not sure he liked the taste either - plus it stinks!!
WorkingClassMum
16-07-2010, 20:21
So, how long would it take to see an improvement by using a hydrolised formula IF DS has an intolerance? We tried Neocate for 3 days a while ago (my paed wanted us to trial it before writing a script) and he actually seemed worse so we didn't bother getting a prescription. I guess 3 days is not long enough. Not sure he liked the taste either - plus it stinks!!
about two weeks - the digestive system is very slow to heal as say compared to our mouth (the quickest healing area)
if Bub's is intolernt, it takes 24 hours at least for the last of the trigger food to move through the system, then the inflamation eases off and then the 'healing' starts - the intestional flora needs to re-blanance itself as well, and then it needs to get used to working properly - so all told generally two weeks
There should be a general improvement after 24 hours
Neocate DOES taste foul (and it stinks IMO), but kids do get used to the flavour fairly quickly in my experience.
Thats just cruel!
Its been a bit of a private joke between ally and my self for about 3 years, Both her and I hit our heads agaist brick walls trying to explain the difernt between LI, lactose over load and MSPI
WorkingClassMum
16-07-2010, 20:39
Its been a bit of a private joke between ally and my self for about 3 years, Both her and I hit our heads agaist brick walls trying to explain the difernt between LI, lactose over load and MSPI
Do you think the walls are getting softer???
Do you think the walls are getting softer???
Yes some what.
I remember a thread on here a few years ago that had me wanting to punch something
"so whats reflux anyway " Something like that basicly about it being nothing
well we had the GI appointment today and as Mikenzees mum says, yep he seems to think that it's caused by stomach being slow to empty hence why he can only take about 60mls at any one time without squirming in pain. He's prescribed Pepti Junior Gold formula to see if CMPI intolerance is to blame.
Anyone else had the diagnosis of slow emptying stomach and CMPI was the cause?
I forgot to ask him the next steps "if" the formula did not help.
well we had the GI appointment today and as Mikenzees mum says, yep he seems to think that it's caused by stomach being slow to empty hence why he can only take about 60mls at any one time without squirming in pain. He's prescribed Pepti Junior Gold formula to see if CMPI intolerance is to blame.
Anyone else had the diagnosis of slow emptying stomach and CMPI was the cause?
I forgot to ask him the next steps "if" the formula did not help.
Hey
If cows milk protien intolerance is the problem you may not see much change with pepti as that is only partialy broken down so if that doesnt help they may change to neocate or elecare instead. How they can help with gastric emptying is that they are already broken down ( digested really ).
Did they start him on any medication for the emptying ??
Hey
Did they start him on any medication for the emptying ??
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???
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.
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?
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!
Me&MrMagoo
22-07-2010, 18:43
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??
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
Me&MrMagoo
22-07-2010, 18:52
What about sheep? The only dairy I eat is sheep fetta. Does it have similar protein??
That I dont know, I shal try and find our for you
ManekiNeko
23-07-2010, 10:54
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.
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?
ManekiNeko
23-07-2010, 22:31
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. :hugs::hugs::hugs:
your son's first 5 months sound just like mine. I'm pleased to say however that we have definitely seen an improvement since being on Pepti Junior and he is able to eat more without wriggling around in pain. He still sometimes seems uncomfortable but it's usually after he's had about 140mls (which is a massive amount for him to drink in one go during the day). We're on day 5 today so hopefully in another week we'll see more improvements.
Yesterday's food intake was the best it's ever been and he had a grand total of 920mls over 24 hours!!! Admittedly he is still waking a few times during the night for feeding as he's not taking enough during the day to keep him going, but things are certainly looking promising. Hopefully we'll be able to wean him off the Losec at some stage in the near future!?
Since he is responding to Pepti, does this mean that his intolerance to cow/soy milk protein is mild as it looks like we might not need to move to Neocate or Elecare? Or has the severity of the intolerance got nothing to do with it and doesn't work that way? Also, can it cause constipation and does this subside?
Think I spoke too soon about his response to Pepti and he's gone backwards again and still not taking much during the day and we're relying on the dream feeds again. Bugger! (He certainly doesn't squirm around in discomfort like he did before though).
Do you think that because we have seen some improvement but not great, that he definitely does have a CMPI and that the broken down proteins helped initially but it's just not enough to sustain it and would need the amino acid based formula?
Has anyone bubs main symptoms for CMPI been chronic constipation. My DD was diagnosed when she was 3 months old and at that point was fully BF as she had probably only done a maximum of 15 poo's since birth, had recently gone 17 days with out pooing, then needed 2 enema's (everyone kept telling me it was normal for a BF baby to not poo regualy) and then they found a tear in her bottom from the constipation and FINALY refered me to a PEAD. She also had really bad reflux (maybe throw up 40 times a day) but they said as she was a happy chucker and thriving that they wouldn't investigate or treat. She would scream constantly and would only sleep being bounced over our knees on her tummy (we nicknamed her the beast at one stage).
So I have been on a Dairy and soy free diet since and every time I try to have dairy she goes backwards. She is also on 10mls of lactulose a day which helps her poo but when I tried introdusing soy into my diet not even 20ml of lactulose would help her go. So I have been weaning her onto Pepti Junior for the past month and the reflux has basicly disappeared but the constipation is still there. I don't like my pead and am going to change but I'm wondering if maybe Neocate or Elecare might help. So has anyone elses bub's main symptom been consitpation and if so has it improved with diferent formula's? My Pead has said she can stay on the laxitive indefinatley but to me that just seems like a bandaid solution!
Sarah
hi seziek,
My DS didn't used to have constipation issues until we changed his formula to Elecare (and previously Pepti Junior). Both of these formula's block him up and we now rely on laxatives (and sometimes even suppositories) for him to poo.
So in my sons case, it is actually the formula that is blocking him up. However it's better for his tummy and we just have to keep up the laxatives and he's fine.
The paed is happy for him to keep taking laxatives and said it's common for these types of formula's to cause constipation. So imagine as your baby has a history of constipation, it would be even more so with Pepti Junior.
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