Thursday, June 23, 2005

The results are in!

I decided that since the ND is going to be out of town next week I'd see if the lab could send another copy to Max's pediatrician. I called them and they said according to state law they couldn't unless the dr who ordered them ordered a carbon copy to be sent to them. So I was going to call the ND's office to see but before hanging up thought I'd ask if the results were ready. They were! Would the ND have them now? Yes.

Yes!

So I called the ND's office but there was no answer. The machine picked up but I decided to call back until I got a real person. I called a couple more times but after getting the machine each time, finally decided to leave a message since I had to go out. I listened to the message and it turns out that her vacation started today.

Noooooooo!

We were *this* close to getting some answers (again!) but now we still have to wait until at least Tuesday July 5. And that would be for just a phone call. Bleh. And of course since the office is closed, I can't ask for them to be sent to his GP. Somebody has such a sick sense of humor.

But in happier news, when we went to Katie's soccer today everyone was commenting on how much better he looks. And right now he's even flaring up a bit, especially on his face. It might have something to do with the fever he had earlier in the week since I've heard that the stress of an illness can bring on a flare up.

Tuesday, June 21, 2005

What a cruel little joke....

So after a week of beautifully clear skin, some little bumps started popping up around his mouth and eyes. And bigger pimple sized bumps filled with fluid that have since crusted over and turned to scabs appeared sporadically on his body. I'm not sure if this is something new or what it could be. They seem to be going away though so I'm somewhat relieved about that. We even had his picture taken last week.

We're now on the second vial of zarzaparilla and i'm nervous it's going to run out and he'll flare up again. Or that I'll discover that it's just been suppressing the reaction instead of helping purify his blood and liver.

I called the ND office last Friday to see if the results from the blood test were in since the lab said it would take about a week and they said that they were indeed back and we'd discuss them at our appointment on Tuesday (today). So as I sat here counting the minutes to answers, I get a call saying that they aren't back yet and the allergy tests usually take about 3 weeks so we need to reschedule our appointment.

oh god no.

How can they take this away from me when we were so close??? I know we're missing something because he's still itchy without the lotion. I was fantasizing about what foods I would be able to eat again today. I had it all planned out in my head as to which ones I wanted the most and what order I'd add them back if allowed. I was at the finish line, and someone yanked the tape away as my fingers were about to touch it.

So the results are due in around next Wednesday. The ND is on vacation that week though, and the following Monday is July 4, so the office is closed then. That week is booked pretty solid, but they had an opening Friday, July 8, so I took it and begged them to call if anything sooner becomes available.

July 8. That's 2 1/2 weeks away. I feel like I've been kicked in the teeth. Or something big and heavy was dropped on my head. All I can do is laugh and half cry because this is sooo my luck. I was hoping since Max deserves better, his luck would win out but I guess not in the way I was thinking/hoping for. At least we still have 3/4 of a vial of zarzaparilla left. I don't know what I'd do if Max was still in agony.

Saturday, June 11, 2005

Getting better...

I'm so amazed with this stuff. Max slept soooo well last night and I didn't have to pin his arms down. Heck, we didn't even cover his hands with socks! And in the morning when I had to wake up early, he was able to keep sleeping. Even through my breakfast. His face color is normal and you can't even tell that two days ago his skin was broken and weeping. I am so relieved to have found something to help with the chronic agony.

Friday, June 10, 2005

What *is* this stuff?

Yesterday two small vials of lotion arrived from G's mother in Chile. It's a mysterious herbal compound that's famous (there) for it's healing properties. I don't have a clue as to the ingredients as they are only labeled:

ZARZAPARRILLA

Uso Externo Dr:Quenacom
FARMACIA PERALTA

We tested a small spot on his arm in the morning and since there was no adverse reaction by bedtime, I applied it to his face, arms and legs.

He is looking *amazing* today!

His face is practically it's normal color. Yesterday, it was angry, red and weeping all over his face. His arms were worse, very oozy yesterday, and today, they're drying up and look better than his face did yesterday. He slept a little better last night (and by that, I mean he didn't pull his arms out of his sleeves to scratch. I usually pin his sleeves to the bed to prevent him from waking himself up scratching) and is less itchy today. And he's full of smiles!

Thursday, June 09, 2005

Track Marks

I'm finally catching up to where we are right now. Yesterday we got the form for the allergy testing in the mail (insurance issues) and were able to go in to the lab to get his blood drawn. There were several tests ordered including CBC, thyroid function, lead levels and the biggie: IgG. This is the one where they'll test for 115 different foods.

The techs were very friendly and great with both babies. Still, it's really tough to watch. They lined up 6-8(!) or so vials. I'm not sure on the exact number, but it sure looked like a lot. Everything started moving in slow motion as the needle came toward his arm. I never realized how big the opening was before. I'd debated beforehand whether to nurse him through it or immediately after and decided that I didn't want the experience associated with nursing and held off. I held him tight and he didn't even flinch as it went in. Brave baby! They had a tough time getting the blood flowing at first but soon it started moving. Then he started to get upset. That actually helped for a little bit. After a few vials they switched to his other arm. That sucked. But soon it was all over. There's now some bruising on his left arm though. He looks like one of those bad boy baby junkies. Poor li'l guy! The way I figure it, a couple needle pricks are nothing compared to the chronic agony he's in now.

Random Observations

We've been taking our supplements and avoiding the mega list of foods to avoid and have made some observations. I'm not sure if they're good or bad, but for what it's worth, here they are.

*Max is pooping more often. And instead of the thick, mustardy poos, they're dark green and more liquid. He seems to have less gas discomfort also and his tummy isn't as rigid.

*The zinc I'm taking makes me nauseated. It's the same feeling I used to get from my prenatal vitamins. Plus it gives me a slight headache. Not enough to be really painful, but bothersome nonetheless

*The eczema on Max's legs has gotten much better, but his arms have gotten much worse. I'm wondering if this has something to do with putting him in short sleeved shirts because of the heat since it starts directly where the sleeves end. Which also makes me wonder if it's not foods at all but instead environmental.

*Maybe I should scratch that last part because now I'm noticing it's spreading to his shoulders. Haha, I said scratch....

*Every time I think I have a long list of things to write down, it ends up being significantly shorter than I expect.

Bottom line is that despite all this crap we (and by that I mean *I*) are doing doesn't seem to be making a heck of a lot of difference in his insane itchiness or ugly, weeping rash.

Wednesday, June 08, 2005

The Incredible Shrinking Woman

So I bitch and moan a lot about how much it sucks to not be able to eat pretty much everything. I thought I'd take a little time to reflect on the good things that are coming out of this.

*I've lost about 21lbs since starting eliminating foods about 10 weeks ago. I'm back into my old clothes, but still need to lose about 20 more to look really good in them.

*I'm more regular. Instead of once a week, I'm up to about once a day, sometimes twice! I find it pretty ironic considering I don't think I'm eating enough to produce that much waste.

*ummmm....did I mention the weight loss?

I guess the list is shorter than I thought. Maybe I'll think of more later.

ND appointment

So we visited the ND last Wednesday and it went well. She mentioned that in her approx. 15 years experience she hadn't seen too much of this until recently and she's seen around 10 cases in the past 2 years. And in babies of vegetarian mother's who are nursing. Maybe I took that the wrong way, but I'm awful curious about the connection to nursing vegetarians. So for the first time since this whole ordeal started, I'm feeling hopeful.

We spent a long time discussing his birth, when/how the eczema started and progressed, and my diet and everything I mentioned in the previous post. She checked him out a bit and noted that he was very gassy. She told me to eliminate mucous foods, rice, white potato, banana, grapes, avocados(noooooo!), get strict about eliminating corn and to eat for my blood type, which is 0+.

So to recap, here's a list of what I can't eat:
dairy
soy
wheat
eggs
citrus (including strawberries and tomatoes)
nuts
chocolate
coffee
caffeine
alcohol
corn
rice
white potatoes
bananas
avocados
grapes
mucous foods
anything specified as "avoid" by Eat right 4 your Blood Type.

She also recommended an herbal tincture and baby bifidus for him and zinc and b6 for me. And to use Dr. Bronner's soap for all my cleansing needs from laundry to myself.

And gave a reference to get allergy testing.

Normally I don't opt to do testing, especially tests that aren't particularly accurate, but I am so looking forward to doing this and getting the results because at this point my diet is extremely restricted and Max is still itchy as ever. To be able to add back any food to my diet instead of taking more and more away would be such a relief.

Tuesday, June 07, 2005

A little background on us

Max first flared up around 3.5 months. It started on his cheeks and quickly spread throughout his body. The same week it started, I started eliminating dairy, eggs and chocolate, which made me a vegan since i was vegetarian to begin with. After 3 weeks of seeing no improvement, I added wheat, soy, citrus, nuts, caffeine, alcohol, corn (although keep finding new hidden corn in my foods) hmmm, i think that's it... So basically I've been on a majorly restrictive diet for 2-2.5 months.

We use a hypo-allergenic detergent, and I use only a small glug per load. I only use vinegar as a softener.

We've tried many bathing routines. At first we rarely bathed him. Then we saw a dermatologist who suggested nightly bathing. So we tried that and he got better for a few days, but then went back to 'normal', which is red, inflamed and weeping. We never use soap, except a couple times a month i'll use a tiny bit (aubrey vegan baby soap) on his hair when it gets really oily. I always slather him with a moisturizer immediately after taking him out of the bath and at most pat dry, never rub.

We've tried countless creams, lotions, balms, salves, ointments, etc. Some seem to work for a few days but just as we get hope that it may be working, his skin gets worse again. I've refused to use the steroids because while i'm sure they'll calm the flare up, as soon as we stop using them, it would come right back because they don't treat the underlying cause. Thankfully, dh is with me on that and i don't have to fight him over it.

We cover his hands with socks most of the time so he won't scratch his face bloody and cover the rest of his body with long sleeves and pants (100% cotton). Sometimes at night I'll pin his sleeves to the bed so he doesn't wake himself up by scratching/rubbing. Sometimes he figures a way to scratch anyways though...

I'm taking EPO supplements, 6 500mg caps daily, and probiotics. I also finger feed Max some probiotics. I'm also eating a lot of flax seeds and put lots of olive oil on my salad and veggies and eating lots of avocados.

We have almost all hardwood floors in the house and I'm washing the sheets 1-2 times weekly in hot water. we do have curtains in our room, but i vaccuum them and wash them regularly.

We're seeing a pediatric naturopath for the first time tomorrow and i'm really hopeful that she'll be able to help. and the best parts are that she's close, our insurance covers her and we've heard nothing but great things about her from friends. {this was written last tuesday, i'll update about the visit in the next post, it's just really tough to type while trying to keep max from scratching himself}

I think that covers it all. He's still insanely itchy and it's gotten even worse the past couple nights. I feel like such a failure because I'm trying to do everything I can to help, but nothing's working. Our lives have been taken over by this and I can't sleep well at night because I spend the whole time making sure he's not scratching/rubbing. He's such a mellow little guy and so happy despite all this, it just kills me that i can't help.

Eczema SUCKS!!!!!

welcome

i'll be using this blog to vent about our battle with my baby's eczema.