Tuesday, October 2, 2012

October 2, 2012

Ok, well a month has past and Lily is doing GREAT. Because of her limited diet, I have really been able to see her sensitivities. For example, there is an ingredient called xantham gum that is often used in gluten free foods. It can derive from several places, wheat, dairy, corn etc. Lily typically does not do well with this ingredient. She had some brownies that claim to be free of everything Lily can't have...but have this ingredient. Their website says that this ingredient comes from a source that makes it ok...well if that is the case than Lily can't have that ingredient under any circumstances because it makes her more hyper and less focused. So yet another, note to self.

Because we went cold turkey with the diet and eliminated everything at first, it got me thinking about her allergies and wondering if it was all corn related...after all, corn is in almost EVERYTHING, which includes ice cream and yogurt. The new experiment: Give Lily milk (and only milk) related products to test the possibility that MAYBE she could have dairy? So I went on the hunt for some yummy ice cream and didn't find ANY that I could give her so I ended up buying Kefir which has ice cream consistency but is more tart and tangy than sweet. Can I have another bowl? ABSOLUTELY! A third bowl? Why not? How about some cheese sticks? Sure, have THREE :)

Observation? Hyper Hyper Hyper....needing to climb EVERYTHING, no focus...she wouldn't follow direction. Then we climbed into the van to visit my brother and she wanted to read a book on the way. No big deal usually, she's been reading for a couple of years now except now, "Mommy my eyes won't focus! I can't read this!" She was totally frustrated. The following day Lily was super emotional, crying about everything. The third day she seemed back to normal (they say it can take up to three days for casein to get out of your system). End experiment. No more dairy for sure.

So, for those of you wondering what in the world she CAN/will eat, here is the list (with hopes of finding more things)
Vegetables (fresh or frozen, nothing from a can) Broccoli, green beans, carrots
Eggs (hard boiled or scrambled)
Rice, potatoes
Chicken (plain, kinda boring)
Bacon (this is a questionable one, I've been trying different ones)
Ham
Chocolate Chip Waffles and Pancakes
Fruit (fresh mostly and organic when possible, very few fruit cups are acceptable, nothing canned of course)
Rice pasta
Organic peanut butter (I use it on bananas)
Cookies (there is a small variety at the natural food store I was able to find...hard to find without soy though)
I found some organic rice krispy type marshmellow bars that she thinks are so-so
I also found a coconut strawberry bar that she really seemed to like, so I'm going to stock up on those.
Orange Juice Pops that I freeze myself
There are some fruit twists and fruit flats that she likes, they have citric acid in them though (on the list for corn) but it's hard to stay away from citric acid so I allow these from time to time.
Organic Lollipops and gummy bears (same deal with the citric acid though, but the girl has to have SOMETHING good!)

I'm sure there would be more if I was a creative cook (which I'm not sure I could ever be) I am going to try making some butter that she could have. I made a whipped topping from full fat canned coconut milk, organic brown sugar and some raspberries that she seemed to like, but the cake I made to go with it was quickly deemed unacceptable. I had found an angel food cake mix that I thought would be ok. The first ingredient was sugar, which I was concerned about. If an ingredient is just listed as "sugar", you don't know where that sugar comes from, so I've found that too, has been problematic. After eating the cake, at bath time she wouldn't follow direction to even get to the bathroom and get undressed. You could tell she was trying but for some reason she felt she needed to run around. When Anthony got frustrated when she couldn't get undressed she declared, "My brain won't SHUT UP!!" End of cake. It's all trial and error unfortunately.

After all this, I came across an article about rice and how it's filled with arsenic and that you should stay away from rice syrup. Well isn't that lovely? You just can't win. There's always gonna be something.


Saturday, September 8, 2012

September 2012

Well, I obviously stopped blogging for awhile, mostly because everything was going great and I didn't have much to report, no news is good news right? So I'm blogging again...you know what that means.

Here is the update from the past year:
I decided last December to take Lily off of her antifungal to not only see how she would do without it, but to also give her body a break I thought it would need after being on it for so long.
Here is some advice: NEVER change what is WORKING! She started going downhill again. It was pretty gradual. Her focus was off, she couldn't sit and attend well at school. I let it go though, stupidly.  I was focusing on other things...

In Feb. we took a family visit to NY and Lily did so well around her cousins that both Anthony and I felt God tugging on us to move there in the summertime after she finished PreK.  Then Anthony got laid off in April...PUSH, we moved to NY June 12th. Just prior to that the kids and I (Anthony went to NY to get started on the job hunt) moved in with my best friend Jenn, who has 2 children as well, the same age as Lily and Meadow, for a few weeks before our move date. Just before we moved in with her, Meadow had gotten  horrible cough (so bad she threw up several times a day from coughing so hard), Lily and I got it too, it was BAD...persistent...NO SLEEP...totally awful, would NOT go away.
I DID NOT want us to pass it on so we went to the Dr.'s and they gave us antibiotics...didn't work....how about another antibiotic? NOPE. Steriods? Nothing would touch this nasty cough and I was afraid it would turn into something worse, and we no longer had insurance, or much money at all, especially with the impending moving expenses.

The result? Nasty cough got passed around anyway and Lily....poor Lily...no antifungal and all this SHIT I gave her (I KNEW better!!!) that just fueled the yeast to the point where she turned into an AUTISTIC MESS, 24/7. Here we were back at square one! NO EYE CONTACT, she wouldn't even Acknowledge me almost at all! It was so hard. Here I was with her, but she really was someplace else. I missed her so badly. I had read a lot about children with autism having a "flight" issue...now that was Lily. Here one second, gone the next. My days were spent trying to find her. I'd have to ask 2 year old Meadow to watch her 5 year old sister!

She was off into her own world, playing in piles of dirt outside for hours on end and obsessed with finding water to make mud and cover herself in it. It was a dark time...I cried and cried. Then I finally called her DAN Dr. and got her back on her antifungal (thanks for the laon mom). There was improvement right away, but I wanted more. I started her on the GFCFSF diet...boy that was hard, but we stuck with it. She had a ton of improvements, but I can't say it was the diet, I really feel like it was the antifungal. After a couple of months I didn't see quite the improvements I was hoping for from the diet.

THAT brings us to today: when you are the "diet" you eat an awful lot of ingredients that come from corn. What happened a few days ago astonished me. Lily was eating a bowl of popcorn (plain, popped with olive oil on the stove). She ate A LOT. Lily went crazy, running all over the place, getting into things...and when it came time to swallow her pills (not an issue for almost a year, even in the crazier months) she went bolistic. Crying and refusing to take them. I couldn't force her to take them (bribing didn't work either) and she really needed to, so I told her she had to sit in time out until she was ready to take them. She cried and cried screaming, "I don't know what's happening ME!!"

I lost it. I felt so helpless. What can I do to help my child?! After a ton of tears from everyone, she finally took her pills (and got a big pile of chocolate chips afterwards :)
Then it hits me...it was the popcorn! She had been fine all day up until that point, and the previous night we had some difficulty giving her her meds and she had eaten some corn pasta.

Lightbulb...someone answered a post a few months back, answering my question about the diet. Her daughter ended up having an issue with corn. GOOGLE...corn, autism...ANSWER: common allergy with people on the spectrum, gluten, casein, soy and CORN.
GOOGLE...ingredients that contain corn...ANSWER...2 pages worth.
What is Lily going to eat NOW?

Well today was Lily's first day on the very strict diet and she did AWESOME.

Breakfast: scrambled eggs and ham
Snack: Banana's with peanutbutter and later Frozen bananas that were dipped in peanutbutter and chocolate.
Lunch: Hard boiled eggs
Snack: banana
Snack: apple
Dinner: grean beans and mashed potatoes (some cucumber)
Dessert: an awesome but expensive allergy free piece of spice cake.

Todays events:
  • playing with her sister (this one is big)
  • not screaming when her sister took the ipad, her declaration, "Hey, I want to see that too!"
  • She filled Meadow in on what she had missed from "Elmo's World"..."Meadow, at first he was a fish!" (Elmo had been pretending to be various pets)
  • Meadow was playing Dr. and Daddy was her patient. Lily sat next to me in the "waiting area" (I had no idea she was waiting for a turn!) and finally said, "Can I be the patient now?" and went right up and sat next to Daddy and actively took part in the play. It's such a huge thing for her to have observed everything quietly first and then jump in.
  • Much better eye contact
  • When Meadow asked for her attention while Lily was watching TV (a damn near impossibility for anyone) Lily was actually able to look at her and declared, "I'm FOCUSING!" She was just as shocked as I was, lol.
So here we are, on the road to recovery, yet again. I know the Lord allowed all this to happen so that she would get bad enough for me to start her on the diet. I never thought she needed it before, she was always doing so well, but sometimes we are blinded too. She did well in day to day settings, but when you put her certain social situations, it was always clear she needed more help. I know things won't be perfect, but I am certain that she will do awesome.

Lily starts Kindergarten in a couple of days and is so excited. In NY, in the district we live in, kindergarten is only 2.5 hours! This too is a blessing, now I will be able to moniter all her food intake to make sure she's the best she can be. After 3 years of full time PreK, this should be a breeze for her and hopefully her anxiety will be less :)

Meadow, has been doing awesome. She talks NONSTOP now, and is a pretty bossy 2 year old. She's wonderful and is such a blessing in our lives. She loves to tell knock knock jokes like:
Knock Knock
Who's there?
Jamaican
Jamaican who?
Jamaican me Crazy!

Or
Knock Knock
Who's there?
Orange
Orange who?
Orange you glad I didn't say Nana? (if you know this one, you know she skips a lot on this one, lol)

She loves to sing and dance and likes to make everyone laugh. She still doesn't sleep well at night though. She still can have problems with constipation, I have to give her extra fiber. She wakes up crying around 6-8 times at night, I hope she grows out of that soon!

I'm going to try to post daily, at least what Lily is eating so I can keep track. :)

Wednesday, November 23, 2011

Lily is FIVE!!

Well, I'm finally updating. Lily is FIVE! I always said recovery by age five and look at her now! She's not fully recovered of course, but she's EXACTLY where I knew she would be! She has overcome so much and I am so proud of her! Reading, writing (the best in her class! This from a girl who would scream and cry in frustration of having to draw even one line on a piece of paper), singing, joke telling, manipulating (mommy, PLEASE?!), negotiating (how about I eat my dinner and then have TWO cookies?), artistic (her drawings are getting to be the highlight of my days...her people actually wear CLOTHES now! LOL) are only a few of her many talents. It's hard to see the autism most days, with the exception of some short emotional meltdowns and her difficulty switching her attention to you if she is engaged in play or watching TV. Also she still has  difficulty with sound sensitivity (toilet flushing is a big no-no) but over all she does very well with the day to day and the things that she needs to work on (your typical social stuff) will come with time and aren't quite as important now as they might be next year or there after. She will be in a regular kindergarten class next year, which was always our goal.

Though Lily is far into her recovery, I think about autism daily. My other little girl wonder, Meadow (who is now 20 months old), is a constant reminder of where we once were with Lily. She's incredible and her ability to communicate effectively without much speech is amazing. All of the little things she does are so appreciated. Her sideways glance, her naughty nature, her call to everyone for attention, her complete ability to understand most EVERYTHING. Meadow could be the poster child for the "neurotypical". She went through some speech issues though (she still is, but it's too early to matter now that she's got the ball rolling). When I took her off bottled water and started giving her filtered tap water (she was about 8 or 10 months old I think), she lost most of her ability to make sounds. With the exception of Mama and Dada, she only ever grunted. I had her evaluated and she didn't show the natural pattern of speech delay, it was definitely something more. Meadow babbled as a young baby and her second word was not "Dada", it was "Lily". She also could say "cheese" and "baba". She stopped producing sounds. Luckily this was her only area of impairment. As soon as I came to the realization that it was our water that was effecting her (some people might think I'm crazy, but my gut hasn't been wrong yet...and there can be some nasty stuff in your water system these days and few think about that), I started ordering Zepherhills water and had a cooler brought in. I not only use that for our drinking water but I cook with it and use it to wash our fruit. I started giving her epsom salt baths as a natural chelator and it started to help her develop her sounds again almost immediately. It's been a couple of months now and she now says a hand full of words, and all kinds of "almost" words ("Paaa" for "Pop" for example) and can say "cheese" and "Lily" again. I can still sense her struggling to put sounds together that she shouldn't have to struggle for (for example, she can say each sound individually, but can't put them together....like she can say "mmmmm" and "eeeeee" but can't say "me". But she's getting there. I was never concerned about her "speaking", she's a bit young for that and everyone speaks when they are ready, but not being able to make sounds? Hmmmm....been there before, NOT normal.

Our kids systems can be soooo sensitive, I'm not sure why that is but one thing is for sure...ENVIRONMENTAL TOXINS CAUSE AUTISM. No one disagrees with that. Meadow has not had one vaccination yet, but has had her brain compromised by some kind of toxin. Lily's toxins were INJECTED in her in large amounts, hence the major damage and longer recovery. Toxins are everywhere in our world, especially in today's world. That's why virtually everyone you know, knows SOMEONE affected by autism in some way.

Boy, she's come a long way! Here's a video from when Lily was 2.


video
No one will ever be able to tell me Lily must have been "misdiagnosed".  I'll post a recent video soon.

May 2011

I guess it's time for my biannual entry, lol. Meadow is now one and walking and chases after Lily all the time. She still craves attention from Lily and Lily is still hard pressed to give it to her, though Lily does clearly love her sister it's not all Meadow would like it to be. Time will help, and when Meadow can start verbalizing her wants, I know things will take a turn.

Lily was having a hard time with her anxiety over pretty much everything and it was hindering her progress at school. Meltdowns around every corner. It is so hard to watch your child cry and become upset over trivial things. Having to go to the potty, wash hands, pick up a toy, get dressed for school, transitioning to another activity etc. To everyone else they are trivial...to Lily they are things that trigger emotions in her that she just can't control. So after trying everything that I could think of and her teachers doing the same, I decided to bring her to the doctor so that she could get some antianxiety medication. BINGO, a home run from the very first dose! Her body is very sensitive so it doesn't take much to affect her. Her teachers were thrilled, as was I. She started to get more hyper during the day and had trouble settling down at night, so I increased her trazodone in the evening and that seemed to help a lot, but by 3 or 4pm she seemed overtired so naptime for everyone! It makes her bedtime later, but her body seems to like that schedule. Last year she used to nap from 2-6 and then sleep 8 hours at night.

Saturday, January 8, 2011

january 8, 2011

Where do I begin? Lily is doing awesome, as usual. Things were rough with her relationship with Meadow for awhile. It was so hard to watch Meadow crave Lily's attention so badly to just have Lily reject her. We tried every kind of encouragement we could think of. I even tried bribing her to spend time with her, thinking if she only started the interaction maybe it would increase...no go. Meadow tried so hard and now that she is crawling she can literally chase Lily for attention. Sometimes Meadow would just look at Lily and laugh (her only hope of Lily looking her way). It worked initially, and then it stopped. Lily's resentment towards her sister was just too great.

Now? Things have FINALLY made a turn around. We were all stuck home sick for 2 weeks over the christmas break. Lily had no where to go to get away from her sister. With lots of positive reinforcement and lots of time together things began to improve. A friend of mine suggested I write Lily a "social story" outlining her "story" of getting a sister and how great it is to have a sister, what you can do with a sister etc. I wrote up a pretty lengthy one and included lots of pictures of everyone and Lily LOVES it. She calls it her "adventure book". It made all the difference. Lily actually shows excitement to see her sister in the morning when they get up. She recently invited her to play and introduces her to strangers at the store when we are out.

Have I mentioned that Lily is READING!? I can hardly believe it! She is really very good and it is so wonderful to listen to her. She recently is doing better with writing, though she still has a lot of difficulty, she loves to connect dots or trace letters and numbers. She actually asked me yesterday if she could color...wait...isn't this the girl that HATES to color? Lily LOVES to do arts and crafts and loves to work on workbooks that I buy for her at Target in the dollar section (whenever I happen to see some).

Lily did better going back to school this week. For the past few months she really had a hard time with going to school and would have meltdowns in the mornings ranting about not wanting to go to PE, or do table time or have to go to the potty at school. I really think all those were excuses and that she just couldn't voice that she wanted to stay home with mommy too. I think she was jealous of Meadow. Since her relationship with Meadow got better, so did her outlook on school...coincidence? I may never know for sure.

Lily is changing in so many positive ways. I'm hard pressed to come up with other things to work on with her...yay! She still has difficulty following a point, so I need to describe where things are instead of pointing. We will continue to work on her writing, that part of her brain needs a lot of repair. Auditory processing is going to be her longest hurdle, but she improves every day.

Saturday, October 16, 2010

Well, it has been a good long time since my last update. Lily's little sister Meadow was born and is now 7 months old, and Lily just turned 4 years old two days ago! First I wanted to update on my last zinc suppliment comments. Lily was taking Zinc Picolinate (I have no idea what that is exactly) but Lily's response was to the picolinate, not the zinc. We switched her to regular zinc and the changes have been even more astounding.

Lily has had a hard time adjusting to being a big sister. At first she didn't seem to mind, it felt to me that Lily considered her an accessory. THEN reality set in. Lily was a handful for a number of months. Getting into EVERYTHING and making a mess everywhere she went. She didn't want to listen and even went through a period of time where she actually ignored me completely and wouldn't look at me. It wasn't as though she wasn't getting enough attention, it was that she was not getting ALL the attention...which I suppose is pretty normal for most any sibling. She didn't want to have anything at all to do with Meadow and refused to even look at her almost at all.

Recently she has done so much better. She has been listening better and is so much farther down her road to recovery! Basically her main obstacle is her auditory processing. She still has some difficulty understanding some questions and her self expression is a continued struggle for her...but she is doing so wonderfully. She talks in full appropriate sentences about 80% of the time and the other 20% is coming along. She has picked up so many different phrases and uses them so appropriately (she is our little comedian as well, always making us laugh). She LOVES school this year and can finally enjoy a lot of her day instead of struggling over simple things. Lily is now potty-trained!! I never thought that day would come but about a week after school started this year she transitioned to underwear 100% of the time! Woohoo!!

Lily is following direction and I can't say enough positive things. I still make her a bottle everyday, since that is the only way I can get her to drink all of her nasty suppliments (mixed with infant formula still...yuck!). I left her room to make it and a few minutes later she yells from her room, "Hey mom! You got that bottle yet?!" Last week Lily asked her daddy for a snack. She said how about popcorn? Daddy said no. She said, how about cookies? Daddy said no. She said, how about an icecream sandwhich? Daddy said, "Lily, are you hungry?" She looked at him and said, "you think?" LOL. She also put herself in her own timeout after getting busted for something she knew she shouldn't be doing. She went and sat down and said, "I'm in a big timeout."

Lily now introduces herself and has to make friends with everyone. While we were at the pool she decided to go over and talk to a group of teenagers, AGAIN. As I went over to relieve them, I heard her say, "my name is Lily....your name isssss???" Then she introduced me to them by saying their name and then saying, "this is my friend Mommy". SOO cute. I went over there another time and she turns to me and says, "mommy, say helloooo to the guys!"
She has been asking tons of questions, but she hasn't been asking "why" questions yet. The time will come soon enough and it will be bittersweet for sure, lol.

Monday, March 1, 2010

3/1/10

Children on the spectrum are so different from the "typical" crowd. This goes without saying, but I am AMAZED at how differently their bodies process substances both natural and foreign.
I feel that babies are wired a certain way when they are born. They are a blank slate and some have the "potential" to develope autism if they are introduced to things that their bodies can't handle as well as "typical" children. Their immune systems are a large part of this, but I think it's more than that. Children on the spectrum are lumped together in a catagory, but they are also individuals that have such different body makeups. They each respond so differently to what they come into contact with. It's hard to "crack the code". It's a constant trial and error with each child to see what might help them to improve. Some kids do better on "the diet", some don't. Some respond to certain therapies, some to biomedical interventions or a combination of both. Some children don't appear to get better no matter what, some children respond amazingly well and lose their diagnosis completely or respond somewhere inbetween. The term "spectrum" is used because children can be highly effected by autism, mildly, or anywhere inbetween. I think "spectrum" fits beyond that for any number of reasons.

So what am I getting at? Well, I am constantly surprised by such little things that seem to effect Lily in HUGE ways. Some that don't even make sense to me, and CERTAINLY don't make sense to Dr.'s (makes them skeptical even, or think I'm crazy), but I KNOW my child. I'm with her and see the cause and effect everyday. I even play around and test my own hypothesis. I've been doing that since I first noticed Lily was "different". I don't care if it doesn't make sense, as long as my little girl keeps excelling.

Lily's DAN Dr. has been trying to get her zinc-to-copper ratio more equal. Her copper level is much higher so she is on a zinc supplement. She was found to need even more zinc, so we upped her dose from 1 capsule to 1 1/2 and she had been on that for months. We tested her again and her zinc level actually went down instead of up. Due to this, we recently upped her dose to 2 capsules at his suggestion. After a week I began very frustrated with Lily's behavior. Her eye contact and attending went way down and her frustration level over little things skyrocketed into total meltdowns for seemingly no reason. I didn't correlate these two things initially. I was talking to Anthony and said, "I don't get it. What changed this week?" He reminded me that we had increased her zinc and I just couldn't believe that something like that would have such an effect on her, but for the heck of it thought we'd cut the zinc back. Not just to the previous dose, but cut it back to one capsule to see what kind of a difference might happen if 1/2 capsule increase made her so much worse, why not take somemore out and see if we get the opposite reaction?

TWO days on only 1 capsule and my girl is talking in MULTIPLE FULL SENTENCES. She is responding, engaging, and "getting" phrases and conscepts that she didn't previously. I came home from work last night and was amazed!
Here is just one example of something she said:

"Where is my blanket? (goes into her room) Oh, I found it! It’s right here on the bed! (comes out of her room) Look what I found!"

Now don't get me wrong, she's not speaking perfectly all the time, but what an improvement! She was able to tell me what she did today and answer most of the questions that I had for her.
Where did you go today?...To the Park! What did you do there?...Eat fish. Oh, you fed the fish?...Yep. What did you feed the fish?...Bled! (that's bread, lol) Lily ate Bled too!

Where has been something she has been understanding, but the concept of "what" has always been more difficult. Back and forth conversations are generally a struggle for her and she just rambled things off like it was natural for her.

Here are a few other things she said last night:

Where is the ball? I can’t see it.
I’m hungry. Want a snack. Want some bread (pronounced “Bled“)
Turn the music off Daddy.
This ball is different! (comparing two balls)

To be honest she just continued to amaze me and I couldn't keep up with everything she said then and even this morning (she got up happy as can be at 4am). Nothing is better than watching your child blossom. I feel so blessed today!! I know she will continue to do well. I watched some old footage of her last night and can't even believe the difference.
I wonder how she'll respond after her sister is born? I'll find out soon!

Sunday, February 7, 2010

2-7-10

I know that the blogging has been few and far between. I really wanted to be better about updating, but I haven't been getting as much sleep as I'd like, so I've been taking every opportunity to take naps when I can. With only 5 weeks left before Lily's sister is here, there has also been a lot to prepare and a lot of appointments to go to.

Lily has had her ups and downs but all in all has been doing wonderfully as usual. Her speech is coming along very nicely and she is using more sentences and putting more thoughts together. She has a much easier time communicating, though there are times we still have no idea what she is talking about (I think that's still a probably some of her typical peers share as well).

Lily's echolalia is gone, at least at home anyway. Apparently Lily is having a hard time processing information at school, because her echolalia is still very much present at school. They are also concerned about her speech, in that it has not improved. All this is puzzling to me since she does so well at home, so I'm going to need to figure out why she does better at home than at school.
The good news is that she now qualifies for speech services and has started to get speech therapy at school twice a week.

Here are some of the cool things that have been occuring lately:
  • Lily said today that she was hungry! (oh, the small things that mean so much...FINALLY)
  • Lily asked Daddy yesterday to COLOR! (this has always been an activity that she hates and struggles with) Lily actually DREW some pictures and used multilple colors. I was so excited to see this when I got home from work yesterday!
  • Daddy and Lily went for a walk today and Daddy asked her where the bird was and she said, "Right there, next to the pond!"
  • When Daddy and Lily went for a walk and they came to a fork in the sidewalk she asked, "Do we go this way, or this way?" and pointed in each direction.
  • Yesterday, Lily was upset because I was at work and she had missed me, so she was crying and said, "I wish mommy home! I wish mommy hold you" (it's so nice when she can verbalize how she is feeling and share why she is upset).
  • The other day Lily put the head of one of her princess figures into her mouth and said, "Hey, it's dark in here!" (I always get excited when she's playing and doesn't use scenes from movies as her dialog)
  • Lily sat in her highchair and said, "want snack" and I asked her if she wanted some banana and she said, "want raisins" (most people would think nothing of this, but she has NEVER before asked for something specific that was actually good for her!)

More to come later!