TSW Week 3

I'm not really sure what changes there have been in Lucy's skin.  She continues to go through the cycle of really dry skin, massive shedding, healthyish skin, then drying out again, repeat.  Our daycare provider did note that this week she seemed happier.  I think I can agree with that although this past week was crazy for us in general so I feel like I barely even saw the girls.
I do think Lucy is losing weight.  I haven't confirmed this by weighing her but in general she doesn't look as "plump" as she has been.  In particular, her cute little pot belly is starting to disappear.  Her appetite definitely fluctuates, which I know is totally normal for toddlers anyway.  Some days she seems to be reeaally hungry and other days she doesn't want anything.  Of course those days are harder because her diet is so limited and I can't help but wonder, would she eat more if we were able to offer her the foods she used to love eating?  I've thought about mixing protein into her soy milk but we don't have any that doesn't have milk or wheat ingredients. 
Sleep-wise Lucy is still doing great.  Last night she woke up a few times but I think she quickly went back to sleep. 
Right now our daily moisturizing regimen is morning bath followed by Curel Intensive Moisture and either vaseline or the dollar store coconut oil mixture.  Before her nap, she gets coated in Curel again.  At night she gets another bath and then we use the Bee Magic followed with more vaseline or dollar store stuff.  She hates getting rubbed down and tells us to "get out of here" or "let go"  I know some people just skip all moisturizers but her skin is so dry, I feel we need to keep doing something.
Oh and she has almost completely regressed on the potty training.  If she's in the bathtub she will ask to sit on the potty if she needs to.  And when she needs to poop, she'll tell us.  But she wants to wear a diaper every day now and she doesn't tell us when she needs to pee; she just goes in her diaper.  I think we'll just end up retraining her on Christmas break.
I think our biggest concern at this point is just making sure she's eating enough calories to help her body fight whatever is going on.  I'm just praying she doesn't lose any more weight (if she has lost any).

Taken 8.29.13

This was a "good" day for her- still pink but skin was pretty smooth

TSW: Week 2

This last week we stopped the Protopic completely.  We had put some on Lucy last Sunday morning and I didn't apply any on Sunday night because her skin looked pretty good.  We didn't do any on Monday either for the same reason.  And we just kinda decided that maybe she didn't need it anymore.  Lucy's skin seems to be cycling.  And I know this is common in TSW but from what I've read, other people seem to have a longer cycle maybe?  With Lucy, her skin will be suuuuper dry and flaky.  Her skin will feel like very thin paper.  It's like this for a day or two, then she'll go through this massive skin shed (seriously, her car seat is pretty gross) and the skin underneath will feel smoother and healthier.  And then it starts all over again.  So on Friday her skin felt almost supple even, but I noticed on Saturday it felt a little bit drier and then this morning it felt even more dry.  And this morning I could see the backs of her knees starting to get dark red lines so I'm sure they will be cracking soon.
We've still been using a variety of things.  In the morning we've been putting on moisturizer; we were using the Curel but we ran out so right now we're using the Aveeno oatmeal and ceramide formula (it's okay; not as nice as the Curel ceramide treatment).  Then over that we've been using the stuff I found at Dollar General that has the petrolatum, coconut oil, etc.  Usually before her nap, she gets lathered up again in some sort of moisturizer or Aquaphor.  Then after her evening bath, we use the Medicine Mama's Bee Magic and coat that with either Vaseline or the Dollar General stuff.  I do use the Bee Magic on her face twice a day because I feel it moisturizes really well.  If it wasn't so expensive I'd be putting it on her all the time!
We did find out earlier this week that the culture her dermatologist did on her scalp at the end of July came back positive for MRSA.  That sounds scary right?  It's just bacteria that is resistant to common antibiotics.  So she's on an oral antibiotic right now.  I don't really know about this since her scalp has been looking so much better and there is definitely not as much open or oozing skin as there was.  So I don't know if the MRSA was already gone by the time they called us??  I don't really know how all that works so we're doing the antibiotics just in case.
Lucy is still sleeping so well.  I really feel so blessed for that.  I know she itches in her sleep a little bit because her hair is always messed up and the sleeves of her PJs are always pushed up in the morning but I also know she's not scratching the whole night.  I think she must do it when she's in the lighter stages of sleep.
Her gluten/dairy free diet is still going pretty well.  Although I guess she kind of "cheated" twice this week.  One night, she and Taylor were eating dinner at their play table and Taylor got up to use the restroom.  Well Lucy decided to help herself to some of Taylor's chicken nuggets which of course have wheat.  And then yesterday Lucy came to school with me and I thought I had brought plenty of snacks for her (box of raisins, 2 pouches fruit snacks, and 1 mashed fruit/veggie pouch) but even after eating all that Lucy informed me she was very very hungry and all I had was a package of Goldfish crackers.  I don't think she was really bothered by it but today she did have some very loose poop so maybe it just affected her tummy and not her skin.
I guess I'm still just waiting for it to get worse.  So far, everything seems to be going well despite Lucy being so itchy.  She's not even as itchy as she was the first few days.  I don't know if her addiction is just not as bad as other people's or maybe all the things we're doing (baths 2 times a day, multiple moisturizers/skin protectants, and the diet) are just really helping her but I'm very grateful that so far this hasn't been too terrible.  I mean, it hasn't been that much worse than when she was on steroids.
I took this picture yesterday morning; her skin looks pretty good but it actually felt a little dry/rough and as you can see, she's still itchy

Oh and yes, she is wearing a diaper.  I can't remember if I mentioned last week how she has regressed a little with the potty training.  Some days she's done really well telling us every time she has to go (even when wearing a diaper) and other days she just goes.  We always give her a choice of what to wear in the morning and sometimes she picks undies and sometimes she picks diapers.  I'm not too concerned about it; if we have to retrain her in a few months, it won't be a big deal.

TSW- Week One

First, TSW= Topical Steroid Withdrawal.  It's much easier to type TSW ;)

So we've been a steroid-free for one week.  I'm beginning to understand how horrible this process is and will be.
Overall, Lucy's skin has been pretty bad- red from head to toe with some small clear spots on her legs.  The rash she had in her diaper area has definitely gone down.  Her scalp also looks a little better.  Still pretty flaky but what's under the flakes is clear skin.  We try and comb her hair at least twice a day; Walker is better at getting the flakes out than I am.
I'd say the worst symptom right now is the itchiness.  Lucy is almost always scratching, no matter what she's doing.  It is no good telling her to stop, or pulling her hands away from her body.  She is relentless and she gets really mad.  I found some cute toddler gardening gloves that have Disney princesses on them; I thought maybe she wouldn't mind wearing them.  I thought wrong.  Trying to get her to wear them was kinda like when my parents thought it was a good idea to put "boots" on the dog.  Except Missy didn't protest nearly as loudly as Lucy did.
What we've been putting on her skin:
We do use the Protopic sparingly every other day.  Walker and I had to kind of reach a compromise on this as I didn't want to put it on her at all.  I had read on the ITSAN forum that some people flared (as in skin turning red, itchy, oozing, etc) after they stopped using Protopic, compared to before using it.  They said it just stretched out the withdrawal.  But we agreed that we could try it and if we thought she flared really bad after using it, we wouldn't use it again.  I guess since we actually have a supportive dermatologist now we can at least try things he suggests, that way we don't lose that relationship.  It does seem to be helping the appearance of her skin, but will it be like the corticosteroids where she flares immediately after we stop using it for a few days?  We'll find out in another few weeks.
We've also been using a lot of vaseline.  Often TSWers cannot tolerate anything else on their skin.  As you can imagine, this has no effect on the itching and doesn't really moisturize the skin that much.  It basically just forms a protective barrier.  We have put her other moisturizers on at times (like the Curel) but she doesn't seem to like those.  For her diaper rash (not even sure we can call it that since she only wears diapers for sleeping) I used Dr. Smith's Diaper Ointment. I picked it out because I could actually pronounce all the ingredients in it and I knew what all of them were.  I think it worked well.  For her scalp, I found this spray by Shea Moisture called African Black Soap Dandruff and Dry Scalp Elixir.  I found it at Wal-greens.  It actually lists eczema as something it treats on the front of the bottle and like I said her scalp is looking better so I guess it is doing something positive.  And lastly, I ordered some ointment that many TSWers have recommended: Medicine Mama's Sweet Bee Magic.  It is pricey.  I managed to get a deal on it (basically 2 tubs for the price of one) but even still, it's not something we can slather on as much as vaseline.  It is very nice though.  Lucy tolerates it pretty well.  I can't tell if it's helping all that much or if her skin looks a little better because of the protopic.  I like the quality but I might try making it myself- I found a homemade recipe online.  Now I just have to find the ingredients...
 Lucy has been taking lots of baths.  This is quite a change as Lucy used to HATE baths.  Like screaming the entire time, asking to get out of the tub.  Now, she asks for them.  We've been letting her take 2 long baths every day.  Sometimes we'll put in baking soda, colloidal oatmeal, or epsom salts.  We even did an apple cider vinegar bath one day (heard it was good for fighting off bacteria).  She really doesn't care what's in the bath, as long as she's in the tub.  I don't know if the baths are soothing to her or if she only likes them because she has access to all of her skin for scratching.
We do Zyrtec twice a day because supposedly it can help with the itching.  I don't know that it does but we'll keep using it for now.  
Praise God, Lucy still has been sleeping pretty well.   Her naps this week have been around 3 hours (although one day she napped for almost five!!) and at night she's still sleeping anywhere from 10-12 hours.  We've had a few nights where she's gone down and didn't make a peep until morning.  The other nights, she might have trouble getting to sleep but then be fine the rest of the night, or she'll wake up between 10-12 really fussy but somehow we always manage to get her back down.  So far, Walker and I haven't lost much sleep.  I'm praying so hard that continues!  It's hard enough watching her scratch all day and deal with all of her fussiness, but I know it'd be 10 times harder if we weren't getting sleep.

What follows are 2 pictures of Lucy- if looking at crusty or red skin turns your stomach, then don't scroll down.

I think this was taken on August 11th- 3rd day without steroids.  You can see how red she was getting already

This was taken on August 14th, 6th day with no steroids.  Her face is definitely the worst part right now.

I guess the good thing is that her face looked better just a day later.  We've been trying to very gently get the crusties off her face but she really can't tolerate us touching her face right now.
I think the hardest part of this is seeing how this is affecting her spirit already.  She doesn't want to go places anymore.  Most days all she wants to do is sit on the couch and watch TV or play on my iPad.  Or of course, take a bath.  I try to engage her in playing with her toys but she just tells me "no."  I feel like the last 2 days we've seen her mood improve a little bit.  Many teens and adults going through TSW develop depression; I really hope this doesn't have any long-term negative effects on Lucy's emotions.

The A Word

Anyone who has spent even a little time with Taylor notices that she's...quirky.  She's has little oddities that sometimes make me go "hmmm, do all 3 year olds do that?"  I think a lot has to do with her language.  She still doesn't sound like a three-year old.  Well, not a three-year old who will be four in a few months.  I mean this is expected because she hasn't received any speech therapy the last 9 months.  Don't get me wrong, Taylor has definitely improved but she clearly is still very delayed.  But every once in a while, I'd think "well, is it just speech delays?  Is there something else going on?"  And I'm not the only one to have thought this.  Of course it can be hard to tell another person you think there is something wrong with their child.  I mean how do you do that without making the person think you're attacking their parenting? 
I'm digressing....at the prompting of my sister, I started doing some research on autism.  Ugh...even typing that word...please don't misunderstand me.  I know having a kid with autism is not the end of the world, but for whatever reason I've always been SO afraid of having a kid with autism.  I'm not really sure why- it just did.  Geez, digressing again.  Okay so like I said, I started doing some research.  Most of it was done on Autism Speaks' website.  Just reading different things and after filling out the M-CHAT, I decided to go ahead and see a developmental pediatrician. 
We went this past week and met with the developmental ped. at Christie Clinic (FYI, the developmental ped. for Carle Clinic books appointments at least 8 months out).  The appointment went well.  The ped. did some different things with Taylor, some quick assessments of her visual motor skills, her receptive speech.  After the assessments the ped. said the words I was wanting to hear "I wouldn't say she has autism." Phew! BUT, like I suspected there are things going on.  He said she has some hyperactivity (uh yeah, she's a wild-child!) but there was no need for medication yet.  She also has some sensory processing issues, meaning she can get overly stimulated by her environment.  And lastly, while he won't label her as autistic, he is saying she has a "social disability."  Basically, he thinks Taylor has trouble reading nonverbal cues.  We see this too and we have been trying to work on it with her but we're not experts obviously.  He also added that perhaps she struggles with her speech because she is so over-stimulated.  It makes sense but is over-stimulation the sole reason for her delay?  I just don't know enough about the link between the two.
So now our next steps are to give the report to her school and hopefully they can add on to her IEP to provide additional services.  The ped. thinks some occupational therapy would be good for the sensory processing (like deep massage and brushing), and maybe she could get some social work too.
But labels or not, Taylor is still Taylor, quirks and all :)

This Could Be the Beginning of a Very Long Road

Over a month ago, I wrote a little bit about Lucy's eczema and what it's been like dealing with that.  I would love to say that this post is all about how much BETTER she is!  It's not.  Actually she's worse.  Over the weekend she woke up with her eyes swelled shut.  I don't think this was caused by the eczema.  Or maybe it was (maybe she rubbed her eyes too much in her sleep??).  I thought, maybe it's something with her allergies.  The only thing I could think of at the time was we had eaten at a restaurant on Friday night and the girls had some chicken strips and fries.  It's possible they cooked it in peanut oil as I forgot to ask.  However, the swelling didn't go down that much, even after giving her some Benadryl.  The next morning, when she woke up, her eyes were swollen again.  She could open them at least, but just barely.  I took a closer look at her allergy report from when she was one.  The allergen with the highest reading?  dust!  And NO ONE bothered to tell me that when I was called with the report.  Really people?!?  You think you might mention to me that I need to keep my house cleaner?  So we are trying to combat the dust in our house; not an easy task.  I've set a goal to vacuum the girls' room at least twice a week.  I'm also trying to sweep the laminate floors daily.  And I'm sure we will look at getting a hypo-allergenic cover for her mattress and probably an air purifier for her room.  (if anyone is selling either of these things for cheap, let me know!).
But something still isn't right with her eczema.  I didn't understand why we'd use a steroid cream, she'd clear up, but within days of stopping the steroid cream, she'd flare right back up.  And of course the dermatologist and physician's assistant we were seeing, were not very helpful.  I mean, they definitely tried, but I felt like I was told something different at each appointment.  I couldn't keep track of what we should start doing, stop doing, and continue doing.  I think this past weekend, I hit my limit.  Something about all this just didn't feel right.  I did some more reading on NEA's forum and I kept seeing "topical steroid addiction" pop up.  Now I had heard a little about this before and I had even mentioned it to the physician's assistant but he dismissed it so quickly, I thought okay, that's not it.  But over the last few days, I've been reading more.  I found a wonderful blog written by a lady who has gone through with her daughter everything we've been going through with Lucy.  Our stories are practically identical (except Lucy's started way earlier in life).  I read that blog and just cried and cried, identifying with so much.  I found some other blogs with similar stories.  I started to feel that this is what we were up against.  I also read about how reluctant the medical community is to accept this.  How doctor after doctor refuses to acknowledge that some people just can't handle topical steroid creams.  Unfortunately, the only "cure" to this is complete withdrawal.  It is a long, and very painful process.  The lucky ones are "healed" in 9-12 months.  Others (who have been using topical steroids for years) take much longer.  So now I was torn.  Do I put Lucy through this torture in the hopes that in 9-12 months, her skin is clear and she no longer itches incessantly?  Do I just keep slathering steroids on her, knowing that continued daily use has horrible side effects down the road?  It is an awful, awful decision.  And given the fact that there don't seem to be too many doctors out there supporting it....well you can understand my hesitation.
In the meantime, on Monday morning when Lucy woke, her hair looked like a matted bird's nest.  The back neckline of her shirt was soaked and there was a spot on her sheet as well.  Lucy had scratched her scalp so much overnight that almost the whole thing was raw and oozing.  Her scalp had been progressively getting worse this summer and I'm sure you can guess what we were told to put on it: yep, a topical steroid.  Which, at the time we did.  But I wasn't comfortable doing that with the new information I had.  Plus, the skin was oozing; was it even safe to put anything on it?  I called the dermatologist's office again and left a message.  When they called back, they said we needed to come in for another appointment.  Gee, what a shocker.  But this time, we were going to see a different dermatologist.  A dermatologist who has a pediatric certification.  Wait, WHAT?!?!  We've been battling this for 2 years and NO ONE thought "gee, maybe this CHILD should see someone who has a background in this?"  UGH, whatever.  I'm over it now, at least we had an appointment to see someone who maybe was more knowledgeable. 
So we had the appointment today.  I must say, I like this new dermatologist.  He looked at Lucy's allergy report (no one had ever asked me for that before; they just told me it was unreliable and really, allergies don't cause eczema...::eye roll::).  He recommended a wheat and dairy elimination diet.  We had kinda tried those before, but not at the same time and not for very long.  You might think it's incredibly limiting, but Lucy has a limited diet anyway (she's 2 and a picky eater) so we only have to cut a few things out. 
He also said he was going to give us a prescription for a different cream (oh joy) that he thought would be really nice for her.  Inside my head I was thinking "oh gosh, here we go again..."  Finally, I gathered my nerve (preparing myself for the response I was sure was coming) and said "what about steroid cream addiction?"  The doctor said almost immediately, "yeah that's a possibility."  I was quite simply, stunned.  He looked at her arms again and said "this is not typical eczema" and seemed to agree that because of her history with the steroid creams, she most likely was addicted.  He then mentioned a doctor out in California who's been researching this and Walker and I were like, yeah Dr. Rapaport!  I swear, I heard the Hallelujah Chorus in my head!  I couldn't believe this doctor was supporting us in this!  So now we have a prescription that is NOT a steroid that will help with the itching.  We still have the steroid one for her scalp.  We're going to use that for a month.  But we are stopping steroids after that.  It will not be easy.  I'm dreading it.  I know we will probably not get a lot of sleep.  I know Lucy will be pretty miserable.  But I also know it will be worth it.  I know if we can get her off these steroids, we will have so many other ways to combat any eczema that might flare up again.  I'm also feeling hopeful for the diet change.  More and more, it appears that eczema is the body's way of telling you there's something bigger going on.  I don't think it's a coincidence that Lucy's skin started getting really bad when she started eating more and more table food. 
I know I will be praying a lot in the coming months.  I think God has already answered a huge prayer in that we have found a dermatologist who will support our decision to get off steroids.  I'm scared about the coming months.  I have a very good idea of what they could and most likely will be like for us.  I'm praying for a miracle.  I'm praying the itching and burning from the withdrawal will be kept to a minimum.  I'm praying she won't get any staph infections.  I'm just praying that one day Lucy will have beautiful skin and that she can be a normal kid living a normal life.
I'm going to try and do regular posts on her progress.  I also want to take pictures.  They may not be pretty pictures but hopefully over time they will show improvement.
And I think I need to add in here, I'm not saying topical steroids are evil.  They do have their place and they do work for a lot of people.  They just don't seem to work well for us.