is how i feel.
we had a surprise appointment today with the allergist, it was supposed to be 6 weeks from now, then moved up to 2 weeks from now, and then they had a last minute cancellation. so we were going to do some skin tests, try to get some questions answered, find a plan to get grayson sleeping through the night instead of trying to claw himself all night long. but none of that happened. first of all, we find out after we get there that "oh, we can't do skin tests on him because of the medicine he's on." really? why again am i here? so bag that. instead it was things like "i just saw this ad for a new moisturizer, i'm not sure if its a prescription or what it has in it, but do you want to try it?" sure. thanks. then it was "try vaseline instead of aquaphor after the bath". "but dr, what about the new moisturizer you just prescribed?" "oh yea, well try that in the mornings." ok. "dr, what about singulair? how do you feel about that?" "eh, it can't hurt. give it a whirl." ok. "dr, should i have him on zyrtec, benadryl, hydroxyline, which one for his itches?" this turned out to be a very long answer which changed in instruction and dosage about a dozen times. what was SUPER neat was the nurse who came in three times to remind the dr that other patients were waiting. oh i'm sorry. let me pick up the blood and dead skin off your carpet and take my cracking child out of here..( he was crawling around on the ground). i asked if we needed to do more blood testing. in a rush, she said "yes, talk to your pediatrician about it, he can order all that." order all WHAT? oh my gosh WHAT do you want him tested for? give me some kind of instruction please! what is wrong with you? i got out of her that we should retest him for the things that he tested positive for last time, plus anything more that i'm feeding him. she also told me to stop drinking my yummy creamer in my coffee in the morning because he could possibly be allergic to casein, one of the 29 different types of milk proteins (he is allergic to milk, just not sure which proteins). do you know that i look so forward to my morning coffee with creamer? oh well. its not like i'm a stranger to sacrificing my tastebuds this year! its seriously no big deal, i just want to whine about everything right now. i feel defeated. i feel like i'm on my own here, trying to figure this out. i told lyss earlier today, "i feel like he has been prescribed 387 medicines and i can't give them all to him at the same time so its totally my discretion to figure out what he needs and when. and i'm not capable. i don't trust myself. i think it MIGHT be the lack of a medical diploma that crushes my confidence. she also said for me to wean him now and give him neocate (approx $1000 a month formula that our insurance has denied twice). that went over really well this afternoon when he drank half an ounce, threw the bottle at me and screamed so loud that aislyn woke up. oh, she also said to rip up our carpet. i think we'll get used to living on the DIRT at some point since we cannot afford to lay anything on top of it once we rip it up. so she said "just keep him off the carpet". ok. i'll do that. do YOU have a ten month old son? clearly you don't. i'll just hold him all day and set him on the counter when i'm tired. when she did the exam and looked at his skin, she said "you should make another dermatologist appointment". really? cuz this is what he says. "good job mom. don't feel bad. its eczema. you're doing everything you can. thank you for the $30." i asked her about our amazing backyard that kenny built for the kids with lots and lots of grass. "yeah, i would keep him off of that. and since there really isn't a sunscreen that won't break him out, then you should dress him in long sleeves and long pants and a hat with a big rim on it every time he is outside, which should only be in the mornings and evenings. insert cussword.
caveat- i do really like our doctors. they are nice people. but sometimes i think that they don't know what to do with him, and thats just that.
at any rate, my kids are beautiful, healthy besides this, and super fun. so even though i still want to throw up after my not dr visit this morning, i will resort to continue to praise God through circumstances not understood. i will do what i can, research what i can, try to protect him and keep him away from foreign detergents (ha) and pray that this too shall pass. i leave you with a pic i snapped the other day of both of my kids at the same time kind of smiling but not lookin at me. g's face looked ok that day so i'm really excited about this one. it might be the only one i get this year, so expect to see it again on your christmas card.
8 comments:
amy, you are an amazing person, so strong and such a testimony - praising God through this storm - not many can do that. we will continue to pray for discernment for you and healing for little g. we love you guys.
Amy, when you get a chance, email me. The reason I brought up the gluten issue earlier is because his poor skin looked exactly like mine before I was diagnosed with the gluten-intolerance. Which, unfortunately, is the same thing that my father has and it's looking like my son my might have it to.
theweathersbees at hotmail dot com
It might not be the answer. But if he gets diagnosed with an allergy to gluten, I CAN HELP with guiding you through the pitfalls of that diet. I promise...it works. The alternatives to a child are much easier than an adult...they don't usually know what they're missing if they start off the with "right" stuff.
Blessings and prayers for your sweet boy!
Andi
Oh, I also have a dairy allergy. Casein. Sucks. My son has that too. :-(
Hi Amy,
We met a couple times in ABQ. Courtney used to babysit for my daughter Mattea. I've been following your story and just had to comment - for two reasons, as a mom and as a nurse. After recently battling some issues of my own with my children, I can feel your pain in regards to the medical staff. I'm so sorry. You should never ever leave the doctors office feeling like you did. At the same time, even though you don't have a medical degree, nobody knows your child like you do. Go with your gut and the insticnts God has instilled in you. I personally believe (not that I have a medical degree, but years of experience in pediatrics) that they could be guiding you better down this uncertain road. There are meds out there in which you've listed that may help the situation. I also have a really good friend who sought help for her daughter from a specialist in Wisconsin. Besides God's grace, she truly believes this healed her daughter - and its all natural. IF you are interested, Courtney has my email. Please hang in there and don't get discouraged with your doctors (although you should definitely be after this visit). Remind them they are there to help you and demand answers. Be his advocate and fight tooth and nail for him. I can put you in contact with my friend if you so desire. I saw her skin and it was so bad, she would sit in her carseat and bleed. She has been healed. Good Luck
This too will pass...
Oh Amy, I'm so sorry you are going through this. It is so hard. The dr only see the baby for 15 min while we live w/ them everyday. i feel it is very difficult for them to truly understand what we go through daily. I hope you can get something figured out.It is good that you can remember how healthy our kiddos really are and how much worse it could be. We get a reality check every time we go to Cook's as there are so many sick kids there. God heals and I pray that he does so for Grayson and Cooper.
hey amy. it's anna. I so totally felt for you when I read this. There were appts that I went to where I left absolutely clueless as to what they even said. I wouldn't even remember the appt because I was so confused and dazed.
one thing that should encourage you a little bit is that ebay is an allergy mom's best friend. We get our Elecare at about the same price as Nutramigen. Like about $100 for 6 cans, which can last about 3 weeks or so. There's lots of Neocate there too. And if I remember, they have flavors you can add to them. i'll do some more research and give you more info. ebay for formula is scary, but you just stick to very reputable sellers and sealed manufacturer cases rather than separate cans.
If you go back to your pediatrician for the blood tests, ask how many food ones they can do and do all of them. we just had the milk redone and still don't have the results back. it was so discouraging when the skin test came back negative and after 3 bites of pancake he had a worse reaction than I've ever seen. i sat in the bathroom while he was in the bathtub trying to discourage itching and cried.
my advice would be to add neocate slowly to your breastmilk so that he becomes accustomed to the taste gradually. no one can go from yummy breastmilk to something akin to cardboard cold turkey. we're trying soy milk again that way. 1/2 oz per bottle for 4 days, then 1 oz, etc.
even more though, take a break and give yourself a breather. just sit back for a few days and not think about it, worry about it or anything. regain some energy, formulate a plan and try again. i guess the only thing you can't avoid at this point is to deal with the medication. i'll talk to you later about the singulair thing. it's working pretty well with titus in combination with a nightly nebulizer, but he's quit eating again, so his reflux could be acting up. but it's not right for everyone. there's also something called clarinex that my doctor mentioned, but i read on the internet and it seeme dto have more side effects and i didn't have to go there.
ok, i'll talk to you soon. jsut know that we're praying for you and i feel every pain. my experience was just different. just don't let the doctors convince you that you're "doing your best" and we "can't do anything else." I was so defeated and doubtful about my own instincts and observations, that I ignored them until it was way too late.
ok, i coudl write forever. sorry.
one more thing - life gets a LOT easier once they can walk. That way they don't really touch the grass. Titus wouldn't have ANYTHING to do with grass, but rubbed his knees to bleeding on the concrete because the ezcema was so bad. just get long board short stuff so he won't rub his knees and once he starts walking it just won't be as much of an issue. the sun is tougher, but maybe the dermatologist could help with that???????
I was told about your blog by an online friend. I have two sons with severe food allergies. We don't have eczema, but I have a friend locally who might be able to give you some ideas. Her son had such severe eczema that he was covered in blood and scabs for months. None of the doctors helped and she was so lost and frustrated. He is now doing so much better. I can put you in touch with her if you would like. You can email me or contact me via my blog.
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