DS and I need a mentor please. more MPI issues

[lilisuze]

Aaagh. I cant believe I have to write this post.

DS has been milk free for 14 months now. Managing fine on soya. The sick stopped as soon as we switched and all has been great.

Recently we saw a dietician who went mad that we were using soy and suggested nutramigen (which obviously DS just spat on the floor!). Then we tried a great tasting rice and coconut milk combo which was a disaster, within a day the little spit-ups re-started, so after a week, we stopped and switched back to soy.

the last few weeks I have been thinking that even the soy is affecting him. but i am not sure, and even a food diary is not really helping. Some days he is very grotty, grumpy, cries at the littlest thing and has runny poops. we are just starting to toilet train, so this isnt really helping the poor little guy! I think these days are linked to days he has lots of soy (ie an extra milkshake or soya yogurt)

so, the easy option is to cut down on the soy intake. But he loves his milk. And I so so so so want him to have normal milk, cheese and the rest of it. I am frustrated and tired by label watching. I am tired of having a tiny kid that keeps getting threatened with "failure to thrive". (he is 10.7kg at 21 months).

1. Milk reduction....where do i start? cut out a whole beaker of milk each day, or try and make it smaller?
2. and how will i know if its that? i mean, he's a toddler, they have crabby days!

Please help, or maybe just send some vibes

TIA

Lili xx

[*Jo*]

Lili, im sending you some vibes cos i feel like im gonna be in your shoes soon, not in the failing to thrive region, my boy is NOT failing to thrive at all! but we ahve MPI issues and some days when he gets more soy than normal he acts like what you are describing, so i feel your pain, it feels like you can never get to that "normal" stage with this stuff, we are still on Pepti Junior formula for his bedtime milk but has soy in his cereal or milk drinks during the day but the days i did rice cereal for a couple of days or soy only for a couple of days it just didnt go well either.

((HUGS))

[Mashi]

Hi Lili

Sorry to hear you are STILL going through such a hard time with this.

I know there is a lot of controversy over soy but so much of it is misunderstood or NOT understood yet. Yes, some research says that large amounts of phytoestrogens may not be good, but there is also research and clinical studies that show it's not bad at all. There is nothing conclusive at this point in time and for every bad you can find a good, so at this point, for me I don't even consider it an issue.  I would not expect a toddler to take to Nutramigen at this stage in the game - you might want to ask her if she will prescribe toddler Neocate, although TBH I am pretty shocked she would react so strongly to the soy issue but not have a clue that Nutramigen wouldn't exactly go down a treat    There are flavoured Neocate versions meant for toddlers and it might be worth calling her and asking if she can get you a script for one to try, if she's against soy.

On the toilet training front, I am only going to share what is my own opinion and I totally recognize that not everyone feels this way so am not offended if you and others disagree with me (and thus with that please keep in mind that I don't mean if offenseively either) - but I reallly think it is a bad time to start training.  Early toilet training at 8-9 months or so and you can end up with a child who is ready now, but starting a boy at 21 months, I think it is asking for more stress than you need at this time. Sure there are those who DO get it and it works but unless he is really showing signs of being ready and it's going to happen in 2-3 days, then I would leave it.  I've always read that boys are closer to 3ish before they are ready to do a train, unless you are looking to spend the next 3-4 months working at it - and so with this soft poo problem, IMO, I would just give it up and wait 6 months.  But that's just me  

If soy has never affected him before, I would find it a bit strange that it suddenly started to affect him.  Usually, as you know, intolerances are grown out of not into, though nothing is impossible.  With it being summer is he having more fruit? Have you tried cutting him down to just the bare minimum and seeing if he is better?

To trial milk, what has your dietician suggested? I cracked one night and gave DS a slice of cheese: we had just moved to Germany and I was struggling reading labels in German, because even though the basic words (milch, butter, jogurt) are similar it was thinks like "partially separated casein" and so on that I was worried about, kwim?  So after the cheese he was fine, so I did three or four days in a row where I gave him 5ml of milk in a syringe and he was fine.  There were a few days of some icky poops but we were told by the hospital paed in England that runny poops were normal for ALL kids when moving onto cow's milk. And after a few days he was fine, so we've not looked back.

I am also curious when you say he is threatened with failure to thrive - what have they said about this? If this is the case then I would expect the dietician to do a bit more than tell you to put him on a milk that he's never in H going to drink.  She should be offering you more support with his diet including ways of fattening him up and piling on some calories. Kwim? The other thing is, 10.7 kg at 21 months is FINE so what is their problem? He is on the 9th percentile so it's not even close to FTT at this point unless he is losing weight or was on a much higher percentile than he is now? It's more than my DS weighed at 21 months and not too much less than what he weighs now at 24 months (he's just crossed the line to 11kgs)!! Anyway, I would still go back to your dietician and ask them how they can help you to help him pile on some weight if that is what they are wanting from you/him.

Has she given you any advice on when to do a milk challenge? At St Helen's they will often do one at 12 months and one at 24 months if needed (ie/ not outgrown at 12 months) so you shouldn't be too long before they will do a trial for you.  

I also think you are right with the mood issues - it is SO hard to tell if it is just him/his age/toddlerhood or if it is the food but if you feel in your gut that it is worse on days with lots of soy you are probably right.  I just can't think of why it would be fine before you took him off of the soy and then suddenly appear when you put him back on it. Have you done any reading/searching on that? Just to see what you come up with.  

I"ll have a think and a read and see if I can come up with anything for you - in the mean time if i were you I would ring the dietician and ask for at least a phone consultation appt on how to fatten him up and asking if you can get flavoured neocate (actually even your GP will prob be able to write the script for that as they should have the dietician's summary letter by now...).

hugs Lil, i know you've been through a lot with this xxx

[lilisuze]

mashi....

the FTT is not quite there, because he is happy, and growing and was born full term at only 6lb 0oz! but they worry me when they mention it. Dietician was useless, said his diet was fine, but that he was small, I know that....he has always been small. TBH the issue was a lot worse when he was puking 20 times a day and losing so much milk, losing weight or at best gaining 1oz!

Re milk challenge, we are waiting til 24 months, but i am kind of thinking its pointless, if even too much soy affects him. But like you said, it might not be the soy, it might be too much fruit, it might be the heat, it might be grumpiness, it might be teething! This is why i would like someone to watch my food diary and see if they spot a pattern.

I'm not sure if the change back from rice to soy milk has changed anything. His poops have always been random (on cows milk he went from constipation to normal, and on soy he goes from normal to runny) but now i am looking at his diet more, and noticing the pattern again. where in the last year I have taken a back step from it. KWIM

Re: potty training, its just that he asks to have a poo, says "too late" sometimes, and holds his bum! if we catch it, great. If not its no issue, he hardly ever does wee's in time on his potty. but he likes it, and asks to go on the potty, and if he's too late and the poo is in his nappy, he still wants to sit down! I am totally not pushing it, and we dont worry when we are out or anything. i cant really stop him asking, can i?

I think the best plan is to try for a few weeks keeping the fruit down, and the soy the same. Its not so much of a problem really, i just want normalness!

[MLK]

Re the soy, it's not just the phytoestrogens, there are also nutrient inhibitors in soy that can interfere with digestion. Not to make you frantic with worry, just to let you know.

If you want to cut down the soy gradually what if you stopped giving him soy yoghurts/cheese and just gave him watered down soy milk?

I starting PTing my toddler at your son's age, he had a really bad fungal nappy rash and we had to give him lots of bare bottom time, we put a potty in the lounge room just in case! He was out of daytime nappies at 24 months so it can be done, not in 3 days obviously at this age. But if he is asking and you keep your expectations low, keep him in nappies for your sanity until he is a lot closer to finishing, then it can't hurt if you are both happy to do it.


We started the dairy trial at 24 months and it's been slow due to illness. I haven't given him straight milk yet but he is tolerating cooked milk and small amounts of cheese. Hopefully not too many more months for you too!

[Mashi]

mashi....

the FTT is not quite there, because he is happy, and growing and was born full term at only 6lb 0oz! but they worry me when they mention it. Dietician was useless, said his diet was fine, but that he was small, I know that....he has always been small. TBH the issue was a lot worse when he was puking 20 times a day and losing so much milk, losing weight or at best gaining 1oz!

Then I would defintiely NOT worry about it - he has actually gone UP in his percentiles then and is not near failure to thrive, he's just fine! I know the worry because I remember when that was thrown at us and I totally lost it...there is something about that term that makes you feel like YOU have failed to MAKE your baby thrive, failed to raise him, failed to nurture and so on, so I know the feeling of misery and guilt and so on. But I also try to keep in mind that for the same reason that every high street shop thinks that every 20-40 year old woman should be 5'8 and a perfect size 10, every midwife/health visitor/baby nurse and so on think that all babies and toddlers should be chubby little things with dimply knees and a fat belly to tickle.  And if you're not then obviously there's something wrong   

[quote/Re milk challenge, we are waiting til 24 months, but i am kind of thinking its pointless, if even too much soy affects him. But like you said, it might not be the soy, it might be too much fruit, it might be the heat, it might be grumpiness, it might be teething! This is why i would like someone to watch my food diary and see if they spot a pattern.[/quote]

Could be that he has outgrown the milk allergy and still has or has developed a soy problem, iykwim.  He could be totally fine on the milk by now, just because the soy is causing him an issue is not a reason to not try the milk, I don't think.  Not if he was fine on soy for 14 months.

Re: potty training, its just that he asks to have a poo, says "too late" sometimes, and holds his bum! if we catch it, great. If not its no issue, he hardly ever does wee's in time on his potty. but he likes it, and asks to go on the potty, and if he's too late and the poo is in his nappy, he still wants to sit down! I am totally not pushing it, and we dont worry when we are out or anything. i cant really stop him asking, can i?

No of course not!  I did not realise this is how you mean approaching it, I assumed you meant a full-on potty train like taking away nappies and putting him in undies and trying to get him to full on toilet-train quickly, kwim?

I'm not sure if the change back from rice to soy milk has changed anything. His poops have always been random (on cows milk he went from constipation to normal, and on soy he goes from normal to runny) but now i am looking at his diet more, and noticing the pattern again. where in the last year I have taken a back step from it. KWIM

Might be worth starting a diet thread in the food allergies forum and keeping track of it, see if anyone can spot something for you?