Wednesday, February 13, 2008

Peds Appointment

Okay, so another Matthew update. (I'm not planning to change the title of this blog to Matthew's Story, so this better all clear up soon :)

So last time I wrote about the diluted formula. We did that for two days and did not see any change in the diarrhea, only thing we noted was he was more content those days ... coincidence? (famous question!). So we figured we better not deprive him of his nutrients for too long and we put him back on regular formula. Miserable boy that day, no change in diarrhea again, vomitting at the end of the day. Time for a new plan of action. So we took him off of his milk-based formula and put him on a hypoallergenic formula called Alimentum. This is for milk and/or soy allergies and is also made with pre-digested protein. One day later we had proper stools again and back down to two a day. We've only seen mucas in one diaper so far.

This is all great and wondeful, but what does it mean??? It would be odd for him to develop such a reaction to milk after being on formula for six months, yet it is not impossible for there is such a thing as slow onset milk intolerance which usually develops after digesting a moderate amount of milk protein. But yet, he should have had some symptoms earlier (he hasn't had diarrhea before, but has had vomitting episodes before) and you wouldn't expect him to be effect for so long afterwards.

To add to our confusion and constant famous question of coincidence, last week Matthew developed a rash/bumps on his face, mostly his cheeks. Looks mostly like hives with raised red bumps, but is contained to his cheeks. Flares up and settles down, but doesn't go away, even after the formula change. Related to the diarrhea issues? or something totally seperate?

As for the cough. That one is more confused now by that fact that he might actually have a cold, although it's really hard to tell. Since the girls have colds and he's gotten worse the last few days I'm thinking right now he has a cold ... but doubting the original cough was a cold. He redeveloped his cough 10 days after coming off antibiotics, mild but back. It's nothing serious, just a congested sounding cough mostly during the beginning of his nap or in the late evening. It's not very often he does it when awake, he just sounds a bit congested when waking up.

His Resp Rate has come down to a high, but more acceptable level of around 55-65bpm. This is better then the 60-75 we were getting a couple weeks ago ... hopefully it will continue this way.

So the combination of everything ... means?? ... not sure!! The doctor thinks the rash is likely just a typical baby rash/eczema from the weather. Possible - altho I've had a lot of eczema and a the other kids have also and it definitely doesn't look like that. Milk allergy can cause a rash, but not necessarily contained to the checks tho. As for the diarrhea and formula she had no answer and no results from the stool tests we did last week. She suggested giving him another week or so on Alimentum and then putting him back onto his old formula, feeling the only way to really figure it out is to challenge his system. If symptoms reoccur then we'll have to do some further testing. Nothing we can do about the cough issues right now as we're not sure if he has a cold or not, and not even sure what it would mean, epescially considering the resp. rate has improved a bit.

After we got the LPI results back we were a bit more confident that we could just sit back and let the Resp Rate issue be for a while since that was the only symptom we were seeing. Then we got a good report on his heart, which added more reason to let it be. He continues to grow well which tells us his bodies not struggling too badly. The diarrhea issue just through a loop into everything and the presistent cough isn't all the comforting either ... but hopefully just a cold (fingers crossed). So we'll chug away at the formula issue and see what the next weeks bring.

Matthew's Rash. It flares up more and the red bumps get bigger and more of them at times, often after a nap. Pictures don't really show it very well. Seen anything like it? Just eczema?


HH said...
This comment has been removed by the author.
HH said...

Just wondering if Matthew is teething. Does he dribble when he is asleep so that his cheek gets wet. That can cause rashy cheeks too. The formula change is interesting, hopefully the next couple of weeks will really tell. I guess you have to keep plugging away at these mysteries, I'm sure they will reveal themselves soon. In the meantime, wishing you much patience as you try and figure things out.

HH said...

sorry, i double posted, now i've triple posted.

Steph said...

No teeth that we can see ... we keep checking though.

He is a huge drooler, always has been. So it's possible the rash is a combination of that and the weather, but he's always had perfect baby smooth skin before, even tho he's drooled tons all the time.

The first few days he had the rash that's exactly what I thought it was from - drooling and also sleeping in the drool. He sleeps on his tummy so I figured he'd just drooled a little too much and reacted. But then it got worse and never eased up ... and I also noticed it was worse after nap on both sides ... even the side he had not slept on. So that sort of ruled out that idea

Yes the formula is interesting ... it definitely brought results quickly. It's even more interesting trying to buy the stuff. Only a few places sell it and they only stock a few boxes (we got thru 1 box a day) at a time ... so I'm constantly running out for it. Hopefully they restock quickly since I've bought most of the supply at 3 different places so far. Never mind the price. The joys of picking something specialized. The only reason we picked it was because James went on it before we had him diagnosed and although it didn't clear up his diarrhea it did clear up his diaper rash. We thought that meant he was somewhat milk intolerant ... in the end the benefit came because of the broken down protein ... his body didn't have to work as hard to process this stuff.

Hopefully the docs right and he only needs it short term to get himself back on track. The other thing that makes us a bit doubtful it will be that simple is that for the last month or so we've been struggling to get him to drink a decent amount each day. Often he would drink 2-3 oz at a time and then decide he had enough (at the time we attributed this to his high resp rate ... you ever tried drinking water just after exerting yourself?). Now he drinks 5-6oz almost every time (that was also an instant change). So it's almost like he was building up to rejecting the old formula ... hard to say, wish kids could talk!!

Anonymous said...

My mom has celiac disease - it came later in life and it was first noticed by a rash and digestive issues. Cole also is now allergic to milk, and this was only noticed in the last few months - he had the runs permanently, and now that he's on a lactose free diet he's fine. I know these aren't answers to your questions about Matthew.... hopefully its something "simple" like an allergy. All the best trying to figure it out!


Anonymous said...

Wow Steph - that is quite the analysis. I hope and pray for you that all this gets sorted out quickly. Thinking of you often,

Anonymous said...

Rob and Steph,

We continue to follow your blog daily, always glad to read of even the slightest positive change in Matthew's condition.

We pray that the doctors will be given the wisdom neeeded to provide you with some definitive answers to all of this.

Arend and Willa Dale

Andrew and Natalie VanderHeide said...

Hi Steph,
Still thinking of you and praying for you all...we hope you may figure out what's up with Matthew soon.
Also, still thanks for the tips on setting up my blog....
Say hi to Marietta from Shiana (she asked me to pass that on)

T.B.H. said...

I sound like a broken record sometimes, but have you had your house checked for mold? That can cause all kinds of health issues in children.
Praying the problem gets cleared up for you really soon.
Thea H.

Anonymous said...

My son has a similar rash on his cheeks that comes and goes without reason, and I was told that it most likely is eczema related to a food intolerance (not an alergy) and that it should clear up by the time he's two (he's 1 1/2yr now). He doesn't scratch at it so I'm not sure it's eczema cuz isn't eczema itchy (I've never had it myself)? And this doesn't seem to bother him at all. He also didn't have it right away but it probably appeared when he was around 8 months or so.
Trish Smink

Anonymous said...

Hi Steph
I was wondering if you changed laundry soap or softener lately, sometimes that can cause a rash too, or has he been sleeping on cotton or flannel sheets, if I recall flannel is harder on the skin. Wish you all the best, say hi to everyone.

Steph said...

Thank you all for your post, comments, e-mails and little bits of information/advice. It's always good to hear from others and get ideas that we may not have thought of.

It's a comfort to have heard over the last days of other people who have developed allergies (or at least the signs/symptoms of them) later in life, giving us hope that if this continues we're dealing with something easily treatable.

A few things in the past days have kept up puzzled, but I won't get further into that now. One good thing is that the rash has lessened. It still flares up at odd times, but when it's not bright red it almost looks like it's completely gone (whereas before there was always mild bumps and redness). Possibly he's slowly getting over it, altho when he flares up he leaves us puzzled, as it's not necessary after a bottle (the only food he's getting now) or when sleeping/waking. Altho the most common occurence is with sleep, but when this happens both cheeks flare up, whether touching material or not ... and the yesterday we also seen this happen when he was held while sleeping ... both cheeks where flared up when he woke.

As for using a different laundry detergent, we have not changed laundry detergents, so it's unlikely the cause, but it's not hard to just try a different one for a bit. He does sleep on flannel, so I'll have to find some cotton and see if that helps.

On the mold issue. Thanks for the reminder, it was one of those things I was going to look into but forgot. I did review the idea a bit. His symptoms don't totally fit it, but I wouldn't rule it out just yet. Hard to say whether the house has mold our not ... no visible mold, but could have it between the walls etc. If things persists we may have to consider testing the house for mold.

My experience with eczema is that it's mostly itchy when it's flared up. If he had eczema it would be a moist type and not from dryness as his skin shows no sign of being dry. It would seem that eczema is a pretty broad term used for any type of rash that doesn't fit into the already named rash list. Now she did call it Baby Rash and/or Eczema. I can't find any definition of an baby rash, when you look that up it will bring you to a list of common rashes babies have, but nothing that is just labelled as a unexplained baby rash.

So for the time being we continue on the Alimentum formula and watch how things go.