Saturday, March 8, 2008

Milk and Soy Allergy

Okay, so I get the hint ... you're waiting for an update on Matthew :) Sorry, been an upsidedown week, but here it comes.

After over a week without vomits and almost a week without fevers we decided to start Matthew back on solids - rice cereal. I originally wrote that we would rechallenge Matthew back on his old formula but had second thoughts on that idea. The only reason I was in a rush to do this was because I knew we had a GI appointment this week and I wanted to have a clearer idea of whether the formula was really the issue by time we got there. After some thought I realized that if we did not have this appointment I would not rechallenge him after only one week of stability. On top of this we were getting concerned that Matthew is now over seven months old and not eating any solids ... never mind that I was needing to get up more at night to keep up with his stomach. Since originally we were not having extreme luck with solids, we also realized it was important to get him back on solids to determine whether he is just a slow learner, fussy eater or has an actual food aversion. Since putting him back on his old formula may not give us instant answers we decided to first get him back on solids, develop some stability and then rechallenge ... depending on what the doctors said.

So we started pablum Sunday evening, second time was Monday evening ... that evening he woke up crying and ended up vomitting ... this after he had been extremely miserable all day. This was very depressing. Tuesday we had low-grade fevers and more vomits, so I put him on half Alimentum (formula) and half Pedialyte (electrolyte fluid). After twelve hours on this I rechallanged him on full Alimentum and he immediately vomitted. This time we went to straight Pedialyte and slowly worked him back up to full strength 24 hour later ... it stayed in and has ever since. And we won't even talk about how miserable he was from Monday to Wednesday! Monday night was depressing, but by Tuesday I began to wonder if this time he actually had the stomach flu. So needless to say I was actually thankful when Rebecca and I developed the flu (and later Marietta) ... not often a person says that! :)

So by Thursday when we had our GI appointment, I had just started him back on full strength Alimentum and wasn't really sure what to say about him anymore since this had totally thrown us off. Given that I was literally feeling quite awful, with absolutely no brainpower, I decided to try rebook our GI appointment. It took us just over two weeks to get the appointment (with special pulls from our pediatrician) so I figured we could survive a couple more weeks. Well just my luck, the regular secretary was out and the one filling in had no idea who we were and so insisted the next soonest appointment we could get was in July. Although I knew we could get in sooner I now didn't know how soon and didn't want to wait too much longer ... and with my pediatrician now on maternity leave, my special pull was gone (although usually our name is enough to make things move ... fortunate but unfortunate). So I mustered together all my power and packed ourselves up.

So as the title indicates, it is believed that Matthew has a milk and/or soy allergy ... we have to treat him as if he has both. Right now this is an educated guess, and we will work with this diagnosis unless there are indications it is not correct; then we go back. The flu did hinder us from determining how stable Matthew is now. Some of his symptoms do not completely fall into this diagnosis (increased resp rate, which by the way is slowly getting better), but some do. The diarrhea definitely can indicate this, as well as the vomitting and rash. When I discussed this with our pediatrician she felt his symptoms were too sporadic and inconsistent to be an allergy. The GI Doctor said that often when a child has a large allergy (milk) exposure which irritates the stomach it can take about a month for the symptoms to go away. So we did see instant improvement with the diarrhea when we took him off of a milk-based formula. The vomitting could just have been sensitivity still as he tried to recuperate. She didn't think the fevers fit in and thought it could have been some other non-related cause. As many have indicated rashes are common with an allergy (which by the way the last two days the rash has changed in charateristic and now looks like classic eczema). The fact that we struggled to get formula in him while on milk-based formula and then instantly he drank better on hypoallergenic (Alimentum) also supports the theory.

There is a lot to support this theory (which is why we originally thought it was an allergy). Since he hasn't been on the Alimentum for a month yet we still have some time yet to develop full stability before we can say yes this seems to be the case or no there is more to be concerned about. I had thought that milk allergies show up more obvious, but they said that it is not uncommon for it to take months before it is realized. Matthew would have what is considered a slow-onset / type 2 milk allergy - where the symptoms set in several hours after consumption instead of immediately (although when he vomits, it's immediate, he's usually not done the bottle and literally all that he drank comes back out). Maybe this is why he has always (for the months we've had him anyways :) been a fussier child. Funny how this all started with a high respiratory rate. We have no idea how this fits in. Sometimes the bodies resp rate increase to compensate if it is struggling, but a milk allergy would not likely cause such a struggle. You can get respiratory issues with a milk allergy, but this is more like wheezing, congesting, bronchitis/asthma like symptoms ... which his were not.

Is there a test for this? We were told that usually under the age of one the results are not accurate and often negative because a babies immunity is not good enough to show proper results. As well, our research has shown that only type 1 (immediate onset) gets accurate test results. The best way to determine with an infant is trial and error. So they had told us to put Matthew on a strick milk and soy-free diet until he is one year old. (We did not get into great detail about why soy as well, I think they just figure he's doing okay on the hypo-allergenic so we shouldn't upset his stomach anymore by testing but allow him to stabilize, as about 1/4 of people who have milk allergy also have a soy allergy ... since avoiding soy isn't that hard - I think - it doesn't matter either way to me). We have an appointment for him for when he's just over one year and at that time we'll decide how to proceed with challenging, testing, etc.

We move forward on this conclusion, giving Matthew's stomach time to heal and recuperate ... or so we hope that's all that is require now. This is definitely an easier diagnosis to handle then dealing with another GI-problem child. And so we pray that this is the answer ... as usual, time will tell, but at this point we remain optimistic. Thank you all for your continual prayers and support.

A common scene in our house this past week as it seemed we had extra blankets and sheets covering everything in order to prevent completely stripping beds or scrubbing carpets and upholstery.

I also introduced Matthew to Barney this week and here he is watching for a bit to give me time to gather my wits again. I know many people can't stand Barney, but I am a huge fan of him. All of my kids have loved Barney and I find his songs are mostly (I do have issues with a few of them) fun and/or educational. Anyways, sidetracked there. Our kids watch very little TV but knowing how much Barney helped calm James during those awful first months/visits in hospital (and continued to do so as time went) I figured I'd give it a try (even though Matthew is younger then James was). I put in James' favourite Barney tape in and it worked wonderful for about 1/2 hour at a time ... boy was this a blessing when I couldn't get out of bed and Matthew was miserable .... although I will say that for most of the time I was sick Matthew was an absolutely model child ... kid's seem to sense these things.

Do you think Matthew's enjoying the story? Isn't it great having a big sister who can read?


Kevin & Amy said...

Wow, what would be great if this is all it is!!! It is an inconvenience, but not life threatening which is a huge relief. We'll continue to pray for strength and guidance. I really hope you have solved the mystery! Get better soon:)

HH said...

So pleased to read this update. Sounds as if you may be getting a little closer to solving Matthew's health issues. I'm sure your breathing a little easier right now. Take care!

Lisa B. said...

My boys too have a milk allergy. I tried soy milk on my oldest when he was a year old (he's now almost 9) and he immediately vomitted it up as well. Both my boys are now on goats milk, however they seem to do OK with little bits of cheese and yogurt. I really notice it when they have a bowl of ice cream though - no vomitting but very irritable.
At least now you know what the problem is, and you can deal with it! All the best.
Lisa Baker

Anonymous said...

Oh, how we hope you have found the answer to Matthew's problems! Milk and/or soy allergies are quite common and you would have lots of support from other parents who have dealt with those allergies. We certainly hope it is that simple.
You remain in our thoughts and prayers.

Arend and Willa Dale