HELP: Can you MSPI parents help me make a formula decision?

[Mashi]

Not sure what to do here, in a bit of a bind. Maybe some of you have some thoughts or ideas....bear with me, this is choppy:

DS diagnosed MPI at 17 weeks. Trialled soy, didn't get on with it too well.  Went to Nutramigen at 20 weeks.   Been an amazingly healthy happy boy ever since.   Had some touch and go with introducing soy products (ie/ bread which in the UK contains soy flour) but by 11 months establised he is okay on soy.  Have been giving him soy yogurts, puddings, etc since 11 months and he's fine.

12 months old, moved to Germany. No Nutramigen here.  Other brands of hydrolysate formula though.  Brought as much Nutramigen as we could skive from the chemist and through customs with us but 6 weeks on it's pretty much gone.

About 2 - 3 weeks ago DS accidentally got some butter. He was fine for 24 hours. Paed at home (UK, before we moved to Germany) told me he needed to be on a hydrosolate formula and dairy free (Nutramigen, Alimentum, etc) until 18 - 24 months, UNLESS he got some dairy by accident and was fine, in which case to slowly reintroduce dairy and see.  So, after the butter incident, we started with bits of cheese, stopped reading labels in things for hidden milk (was SO difficult to do reading German food labels anyway) and he's been fine.  I tried yogurt one day, just a few licks off of my spoon, and he pooped very shortly after and it was pretty much water    The yogurt was full cream yogurt (not sure the fat percentage in that or what it would compare to, but it was very heavy). So don't know if that makes a difference.

Finally got into a doctor here (took a bit to sort health insurance). Lovely paediatrician, speaks enough English to be comfortable in speaking with me, but at the same time, is definitely not bilingual.  She immediately said to put him on Neocate. I was pretty shocked - I would think that we wouldn't move him to a more broken down milk at 12 months? Seems going backwards to me?  I really pushed and told her I didn't want to do that, but she gave me a trial packet and said to see how it goes, come back in 2 days.  Soooo, I left, sans prescription for milk.  Went back two days later and told her that he refused to drink it....which was a lie, the packet is sitting on my counter    (Was that REALLY bad of me to do?) 

She gave me a script for Nestle Althera, which is a brand of hydrolysate formula, same as Nutramigen is, just that Germany doesn't do Maed Johnson products, they do Nestle products.  But it has lactose in it.  Nutramigen is lactose free.   Nestle does another formula called ALFARE which is the same again, but I believe it is lactose free. She keeps hesitating about giving me the ALFARE and I can't figure out why - but I did come home and read the Nestle website and they have heaps of info about the Althera and none about the ALFARE so I don't know if it is being discontinued or something...not sure.

Soooooooooo this is getting long, sorry.   Have been slowly using the Althera the past three or four days, mixing with my last savoured tin of Nutramigen.  After 3 days, I am up to 50-50 and all day DS has had waterey poops.  As in, poop that is just water.  I do think that it is the lactose - I know that your body can take a while to get used to lactose if you've been lactose free.  But how long will it take?  I only have a couple of days until the Nutramigen is gone....

SOOOOOO my choices --

Keep with the Althera and when the Nutramigen is gone, plod on and hope he builds up a lactose tolerance?

Switch to alpro soy as his milk and try to add fats some other way? I hate this idea, I just don't think of that soy milk as being "enough" for him....he loves his milk, he needs his milk as he's not a big eater and I don't know...

Start working towards cow's milk? 

When the Nutramigen runs out, mix the Althera with soy milk bit by bit until he can drink the straight Althera with no problems?

Let her put him on Neocate?

Or...........??

Yes, I can go back to the doctor and speak to her.  Not really sure what she will say. The hesitation in that one is that I have to walk up to the office (30 minute trek uphill) to book the appt because the receptionists don't really speak enough English to do it over the phone.  And then the next day go for the appointment.  So really I am just being lazy. Plus, I go back in two weeks time for another vaccination so I could just talk to her then, but by that time will be out of Nutramigen. SO maybe I only need a temporary solution?

ARGH.. I'm sorry this is long winded, I didn't expect it to be.  Any ideas or thoughts or suggestions on what I should do?

[Edesanja]

What's your hesitation with Neocate? In NZ it is the only hypoallergenic formula available. (apart from Pepti Junior is the only other option but isn't broken down as much).

[Mashi]

Because Neocate is a fully elemental formula - the milk proteins are broken down into amino acids, which is the most they can be broken down. DS has been fine for the last 9 months on semi-elemental formula, where the milk proteins are broken down only about 70-80%...as we are moving slowly over the next 6 months to make the switch to cow's mil it doesn't seem right to go the other way.  And, Neocate tastes even worse than Nutramigen and I just can't see the fight involved in getting him to take it at this age.

[Edesanja]

Right, I understand. It would be like moving backwards. Sorry I can't really help with all your choices! (I had no idea there were so many available!) but I would follow your instinct and wouldn't accept formula with lactose in it if you think lactose is a problem. Why set yourself up for problems?! Can you explain to the doctor that you think that is the problem and that's why you don't want the lactose formula? (by the way I would climb the hill if it meant sorting this situation out!)

Is Pepti Junior an option? I'm pretty sure it's lactose free?

[Spectra]

Did she give you Neocate Junior?  The one for toddlers not babies?  Because that one tastes a lot better than the infant stuff, my son took right to it.

You say he can have soy, is there not a soy formula that would work better?  Or do they have some lactose in it?

It's hard to say, I mean I obviously used the Neocate, the Alimentum wasn't enough, and it was awesome stuff.  He grew so much on it, so much good nutrition.  And when I switched him, in the course of one week, back on to whole cow's milk he did fine.  While he was on Neocate he didn't have any contact with any milk products.  I don't know if there is a debate about this, but I didn't need to "build up a tolerance" for him to take the milk.  Maybe it's different here, but we were advised to stay away, clear far away, from all his foods he's allergic to until we trial him on it.  I didn't need to "toughen" up his tummy, he just grew out of it around 17 months.

I guess what I'm saying is for me I'd just use the Neocate, less stress if he does take it, and then try the milk again in a few months, then if he can handle little bits of milk perhaps put in an oz or two in his formula over time.

[Mashi]

Thanks Mel, I knew you would pop on here!

With the building him up to the milk, it's not the milk itself I want to build a tolerance up to - as you said, that's not the way it works with milk protein allergy and not a good idea. He was TOTALLY dairy free until 12 months. It's the lactose I am wondering about. I know that anyone, lactose intolerant or not, who stays off of lactose for an extended period of time, ends up with a temporary lactose intolerance and it takes the body a while to get used to it.  So I am wondering if that is just the problem?

Would you think that when his Nutramigen runs out, mixing the new formula (the hypoallergenic one with lactose) with Alpro Soy milk to reduce the amount of lactose he is getting, and then slowly build up is an okay plan? Or is drinking soy milk (not soy formula) as a main drink, even for a couple of weeks only, a bad idea?

As far as I know there is no soy formula over here - lots of controversy about it and in most of Europe it's banned....so it would be Alpro Soy milk from the supermarket

[Spectra]

Ahhh okay, I see what you are saying now.  Oh right, I also forgot about the no soy formula over there.  Can you buy lactose free cow milk over there?  I know you can here, and was thinking if you tried that and he still had a reaction at least then you'd know it is the milk proteins and not just the lactose.  Whereas if he did fine on it then you'd know for sure it was just a lactose issue.

If you don't have a lactose free milk, and you are worried about him getting all the nutrition/fat that he needs I'd probably try the mixing of the formula to see if he can tolerate the small amount of lactose gradually.  I know when my son turned 1 I didn't want him on rice milk because it had nothing in it, pretty much, and he wasn't eating that much solid food.  That's why I chose the formula route, to help him gain weight and get all the good nutrition.

Whereas with my daughter she was eating lots of solids at 1 and so she went straight on cow's milk at the time.  So I guess it depends on if he's eating much solids, or if he still needs some good nutrition from his liquids.  I suppose you could try mixing, and if that fails miserably go the route of soy milk with adding more fat to his diet.

I don't know if this really helps, really just my opinion of what I'd do in your situation, a tough situation at that. 

[MLK]

Another thought - can you get Lactaid drops or something similar in Germany? You add them to the milk/formula and after 24 hours it has broken down the lactose. Maybe you can get them over the internet? I had to use them for a while with DS2 when he was temporarily lactose intolerant before his MSPI diagnosis. After we used 1 bottle he was fine with the lactose.

[Mashi]

Lan I have been wondering that myself!  I have looked for the lactose free milk but not found any yet. Our local supermarket is quite a small one, have to go into the larger one in town to look, but thought about going into the pharmacy and attempting to ask for them.  I have a doctor appointment for him tomorrow so I will see what she says about it all. I only have about 8 precious scoops of Nutramigen left.  

[MLK]

Yikes! I have a recipe for MSPI egg nog in the recipe section if you get stuck, can make it with just coconut milk and egg yolk if you have problems with the other ingredients like the the rice milk, whole eggs and lactose. It's what I've used with DS2 since 13 months and he looks pretty healthy to me, and still has dimples on his thighs and cankles!

Could you order the lactaid over the internet maybe? Obviously won't get there in time for tomorrow though... Worst comes to worst you could try the Neocate and add vanilla or something or mix it with the Nutrimigen?

[deb]

Are you able to order Nutramigen online? Amazon has it here in the States.

[Spectra]

I also know Amazon will ship to other countries now.  They started that a few months ago.  I've already order I few things from there.

[Mashi]

Probably can, but with INSANE shipping prices! If it comes to that, then we would rather spend the same amount of money on a monthly trip to Netherlands or Poland and pick it up in person....which has been seriously debated and is a very possible scenario for us.   If doc won't give me non-lactose free HA formula tomorrow then it may be in the cards for next weekend....which is sort of a " " -- great monthly trip and all, but at the same time I would rather not have to do that, not have to spend our holiday and travel budget and such and such on formula runs, iykwim...

[deb]

My friend from Germany says look for a Reform Haus, and if they don't have it, ask them where they can find natural dairy-free stuff. She says it would be a specialty grocery and the Reform Haus would know. My friend took her dairy-allergic DD to Germany.

She also says there's an association there for food allergies where you can find info and she'll try and look it up for you when she gets a chance.

[Mashi]

Thanks Deb. The problem is that Mead Johnson (the makers of Nutramigen) have pulled out of Germany in the past 6-ish months.  They used to have it available here but don't anymore. I can get it in other EU countries, but not Germany.  We do have a Reform Haus although I have never been in....but I can't see how they would be able to get it and not a chemist when Mead Johnson won't export the product to Germany?  It's a pretty recent change, I spoke to them in June and found out they had pulled out, and had Steffi call some chemists in Germany to find out more...and my paed here has also told me, no Nutramigen in Germany.   

Wait....just re reading your post, do you mean getting other dairy free milk besides formula?

Would love the info on the food allergies association, am working hard on my German so may be able to sort through reading some of it, too!! LOL

Paed has also told me that we may have to do the blood test for milk allergy as our insurance company may require it because the formula is expensive. Although I admit that I have no idea how our health insurance works here.....just that I have some!   If he's not allergic according to the bloodwork (which as she said is not 100% proof as it could be an intolerance) .... we may not be able to get anything anyway. And may have to do these Netherlands runs.....sigh.