By Mayo Clinic staff

Cold urticaria (ur-tih-KAR-e-uh) is an allergy to cold temperatures. With cold urticaria, exposure to cold temperatures causes redness, itching, swelling and hives on the skin that has been in contact with the cold. As much as possible, people with cold urticaria should avoid exposure to cold air and cold water. For example, swimming in cold water is the most common cause of a severe, whole-body reaction — leading to fainting, shock and even death.

Bath time has always been a love-hate relationship for Simmi. She would love to be in the bath when it was very warm, but as soon as her skin would start to get cold from being wet above the water line, she would break out in horrible hives, start getting very upset and eventually scream and want to get out of the tub. Washing her is tricky too, because she will scream through the whole event as though she is terrified and in extreme pain. She is in pain. The poor darling starts to break out and she goes into panic mode. My last bout with her in the tub was a fight with her actually clawing and ripping at me like a wet cat trying to escape from her watery doom.

I gave her plenty of time this morning to warm up to the idea of taking a bath today. Actually I’ve been telling her over the last three days she will be getting a bath. She immediately starts to cry, then she screams in protest over and over…there’s just no reasoning with her. When I say protest, I mean real protesting like “no bath, no bath, no bath” with fists clinched and striking the air. She is a natural protester with sayings at her disposal at any given time! If she wants to watch TV but I’ve said no, she’ll protest “TEE-VEE! TEE-VEE! TEE-VEE!” Stomping and thrashing the air with her fists like she’s at a feminist rally. Anyway, today I gave her ample warning about the bath, and she cried at first, but then sat at the table and while painting I could see her facial expression go from being vexed to happy and then back to feeling vexed. Then she would ask me, “Mama take a bath? Poppy take a bath?” I replied that yes we all take baths and I need Simmi to get all clean. She thought about it some more, and I then added that I would let her blow bubbles in the tub. That closed the deal. She finished painting and off to the bathroom we went.

I put her in the tub and after 10 minutes I noticed she didn’t have any hives. After 20 minutes still no hives! Then the moment of truth arrived…washing her hair and body. I was dreading it almost as much as she usually does. I told her it was time to get washed, she protested loudly but then stood there and let me pour the water over her head. She stopped crying and didn’t make a noise. I washed her hair with shampoo and and rinsed it out, and still no crying. I washed her body, and I didn’t find any hives! 4 1/2 years of screaming in the tub from being in pain has come to an end- I hope. She also has had only one break out of eczema and we’re trying to figure out whether its the bananas or the dishes. If dishes aren’t washed properly, she can and will break out all over her body. The eczema disappeared very quickly which leads me to believe its the dishes. She’s eaten bananas today and had no reaction. We don’t need to use any kind of steroid creams to control her eczema because its simply gone. No rough patches of skin, no itching, and now finally at long last no cold urticaria. I usually take her out of the tub and wrap her up in a towel quickly to try and ease the pain for her, but this time while I was drying her off her room was very chilly and she had goosebumps all over but no hives. Amazing!

I still have her on GAPS but we are still at that 98% mark. I ordered a juicer this week so that I could begin to introduce her to fresh juices and so she can help make it. If she’s involved with juicing she may be more willing to drink it. When I’m confident that she will drink the juices we make, I’ll remove the rice milk from her diet.

Her speech continues to improve as well as her interactions with us. She can sing Twinkle Twinkle Little Star to about 75%, and she learned Its Raining Its Pouring and can sing that one to 75%. Her attention span is increasing and she can now attend for 5 minutes or more. Here is a video of her from January 6th. I took some video of her today, but I haven’t uploaded it yet.

We slice butternut squash very thin with a mandolin, brush them with a little organic olive oil and sea salt and dehydrate them for 12 hours in the oven on the “warm” setting. Since we are up at a high altitude, it may take us a shorter time to dehydrate her chips than those living in lower elevations.

She has enjoyed her new chips so much, that we are now experimenting with apple slices and banana chips. So far she has loved them all. I want our next batches to include beet chips also.

Simmi continues to improve daily on this diet. She did go through the past last week with her back breaking out with what looked like chicken pox. It wasn’t chicken pox, but it did look like that. I think she’s just detoxing.

The time is quickly approaching when I will be removing the rice milk from her diet. We haven’t removed it yet because I need to buy a juicer and have her work with me to make the juice. I find that when there is something I want her to eat, when she’s involved in the process, she will eat it. Whether it was a new batch of cookies or a new vegetable, it always went more smoothly getting her to try it if she was involved.

As soon as I know she’ll drink fluids other than Welsh’s grape juice and rice milk, I’ll stop buy the milk.

Yesterday she had fun blowing bubbles and hanging out on the back porch. Lately when we try to get her to come out back with us she has been objecting. Yesterday she said she was scared of Virgil (our rooster). Virgil isn’t mean or nasty ever. He gets loud with his crowing, but other than that, he’s chicken little. LOL I wouldn’t tolerate a nasty rooster and if I couldn’t get him to be nice with treats and lots of love, he’d be headed for the cooking pot.

The other thing that I’ve been noticing is the change in the shape of her face. Her cheeks used to be set abnormally low due to not speaking very much or not speaking properly. Her cheeks are now set up higher. I’ll try to get photos of her face this week.

Here’s a boring video of her just blowing bubbles:

Another thing that has changed tremendously are her bowel movements. From the time she was 3 months old she suffered with horrible constipation. Not only was a laxative needed, but I would have to manually extract any impacted fecal matter from her. She would be in pain every time she needed to poop. From 9 months old until this year she was on Miralax everyday. When she started eating more fruits and drinking grape juice in the spring, we were able to stop the Miralax. Up until that time, she would only take a few sips from a cup and she preferred to drink her milk from a bottle. We kept her on the bottle to make sure she had enough fluids in her each day if we needed to put her back on Miralax. I’m happy to report that she no longer needs the Miralax OR a bottle. Yes, it does look stupid to see her drinking a bottle before she goes to bed or if we are traveling somewhere in the car, but she’s not allowed to drink it anywhere else. Anyway, now that she’s been on GAPS, we’ve seen a big change in how she moves her bowels. She has well formed, full loads (she isn’t potty trained yet) that do not hurt her coming out. Before GAPS, even though we didn’t need Miralax anymore, her movements were small, hard and she would complain a lot about her tummy hurting. She still does to a certain extent complain about her tummy hurting, but I’ve come to understand that when she says that, she’s just about ready to poop.

Potty training isn’t even an option yet. All my kids were potty trained before they were 2 1/2 and each day that I need to change her diaper, I think to myself, “Really? I’ve been changing your diaper for 4 1/2 years now…come on.” I wouldn’t say that out loud to her, but if I did convey a potty training message it would sound something like this, “Simmi? When are you gonna start going peeps and poops on the potty?” Her reply? “Uh? No thank you!”

As you can see we have a few challenges ahead of us. Getting Simmi off of rice milk, getting her to drink juice, and finding out the winning combo to get her on the potty!

Simone continues to do well with her verbal communication. We understand her clearly, she makes her requests known and she also continues to engage us. Vicki got her a Leap Frog computer (LeapTop) and now Simmi will sit at the table from time to time with a notebook and pen, pressing each alphabet letter and trying to write them down. She’s also able to now associate letters with the animal that represents it. She hasn’t learned any new songs, but I’ve been so busy over the holidays that I haven’t worked on teaching her any either.

Big changes are coming. I’ll be doing the full GAPS diet with her when she finally transitions to no rice milk. The milk is the only thing keeping her from being on it completely. I won’t be making her do the intro diet since its too harsh for her, but I will be doing the intro diet. The intro includes bone broths throughout the day, and if she sees me drinking them, I’m hoping she’ll start to ask for the soup. Right now she will only drink the chicken stock I make. She’s not a fan of the beef bone broths.

Anyway, on Tuesday, Shoshie and Noah came home from NJ and it was pure joy to have all my kids together again. They are all so unique in their personalities, quirky in their own special way and I love seeing how they are growing and maturing. Noah will be 15 tomorrow and becoming quite the young man. We had the pleasure of meeting his girlfriend for the first time yesterday, so it was an extra special Christmas for us.

Shoshie becomes more beautiful with each passing day, and I love her off color sense of humor that pops out from time to time. She’s been extremely helpful, observing what needs to be done in the house and just stepping up to get it done.

Hannah was being her beautiful self, staying on her running and exercise schedule and preparing for a show she was performing in last night. Gina showed off her new cool dreadlocks, was flamboyant and goofy with a new addiction to crocheting. Throughout the two days Gina was with us she only put down the knitting needle to eat or text. She was even trying to knit while opening gifts. I love that she finds knitting so satisfying. She wanted to teach Dom and I, but I fear I’ll be just as addicted to knitting as she is and I won’t get anything done at all! I look forward to the day when I can finally sit down and learn, hopefully by next fall.

Simmi was so excited about all the gifts. It took two days to wrap everything up and during that time she did great not picking them up or trying to open them. I thought I would have to put everything away but since she didn’t try to rip anything open, I left them around the tree. She was more interested in snatching the balls off the tree and hiding them in her room. Simone was super excited with each thing she opened. Even the socks and gloves I wrapped up were an ultra super exciting adventure.

Last night I behaved badly and in the morning had to apologize for the verbal diarrhea that spewed from my mouth. Yes, I do have times when I say things that are either inappropriate or even hurtful. Thank God I have forgiving children.

As I mentioned earlier, I wanted to make all the gifts this year. It didn’t happen. I got most of the materials I needed, but I wouldn’t dare take the fabric out with all the sheet rock dust lingering around. When we finish the dining room, the next project will be our bedroom downstairs. Right now its just a hot mess. There are tools and other junk hanging out down there. We’ll be painting the walls, refacing the fireplace (yes we have a big one like the dining room fireplace in our room), adding new carpet and finally getting settled in. Once that happens we can move on to more exciting work. Where we sleep right now is on the main floor and that will be turned into three different areas. First, a small area for the treadmill. Second, a room with three built in bunk beds (six beds total) so all my daughters can bunk together when they come to visit and also for other out of town visitors that stay the night. Third, our work area for sewing and crafting.

Here are a few photos and a video:

Anyway, Simmi started talking to Vicki. (We were in her car and she was driving.) So Simmi says to Vicki, “Come on Vicki, give it (get it)! Give the cows! Come on give it! Give the horses! Hey! Do you see that rain cloud? Look at the rain clouds!” I just started cracking up laughing as well as tearing up a bit to hear her thoughts on how the driver is responsible for getting you to the cows, horses and sheep. Normally her car conversations go something like this, “Mom, see cow? Where da cow? Where go?” Over and over again until she did see one and then it was “Oh! there is cow!” and she would expect everyone to acknowledge the cow.

Another thing she did very interesting and promising was to pretend to read her book. She picked up her little chubby night time book and started to tell a story. She has never done this before. Now, even though I couldn’t understand what she was talking about, it was her sentence structure that smacked me right up side the back of my head! Yes, it sounded like Simone was telling a very detailed and exciting story in another language. I enjoyed listening to her slowly speak. Usually when she talks, everything sounds like a run on sentence with no breaks, inflection, expression, question, or anything else. Just one long drawn out sentence, and she expects us to understand what she’s saying. This was quite different than her normal gibberish. I think she’s graduated from baby speak to mature sentence structure even though her words are unknown. I can no longer say she jabbers on. She is clearly starting to communicate with us more each day.

She also learned a new song. I’ve been singing this song to her for well over a year, but the other day it just popped out and she sang it from start to finish. The song was “One, two buckle my shoe.” She can sing it WELL, and we can understand every single word she says. To go from never singing that song to singing her heart out and thrilling herself over knowing the words is a big milestone. So now she can sing her ABC’s 100% and One, Two Buckle My Shoe 100% correctly. Oh, and she is now improvising with the melody as well as words… One, Two Buckle My ‘STINKY’ shoe. You heard correctly. This child of mine is really starting to develop her sense of humor. For her to throw the word “stinky” before shoe in to the mix showed me that this is NOT mimicry. She is sincerely speaking as she desires, not because she has heard us say something. I have never said to her “lets sing one, two, buckle my stinky shoe.” When she said that the first time last night, she cracked herself up.

As I said earlier, we went to Sam’s Club. I don’t like shopping at all, and definitely do not like taking Simmi with us to the store if I need to go. Can you say sensory overload? She’s all over the place, becomes angry, won’t listen, starts in with the high pitched screaming and basically suffers throughout the store visit. There are times when she does okay, but yesterday was NOT one of those times. Screaming her head off is not fun for her. She is having a real crisis in those moments and she can not control herself. What was interesting about the Sam’s Club incident is that while people noticed her high pitched screaming, they seemed unphased by the whole event. I guess a child that is larger than a five year old in diapers is a dead give away that something not right with the child. She did calm down a bit when I wouldn’t allow her to come out of the back of the cart. She sat there amusing herself with the liquid in one of the bottles of alcohol we were purchasing. She would just tilt the bottle back and forth and laugh. It brought her comfort. I was glad for that. I know it always seems like parents that go through melt downs with a child must be in agony, but I don’t look at it that way. I look at it as this child is having a melt down because she can’t cope, she can’t organize her actions, she probably feels like everything is amplified tenfold. I imagine for her it must be like having everyone talking all at once, the sounds of EVERYTHING around her also amplified, the lights super bright, blinking lights assaulting, touch feels like pins and pain, and laying on the cold concrete is the only relief from everything. I wanted to just turn around and leave in that moment, but we had stuff to do and my hope was that she would handle the situation a little better in the next store.

Actually, let me back up and say that before we even went to Sam’s Club, we went to a Japanese restaurant. She didn’t know what to do. We don’t take her to restaurants at ALL. We’re taken to our seat and she starts screaming when I try to sit her down. Why? It was unfamiliar to her. We all sat down, she stood there crying and then saw other children in the restaurant sitting and eating. She sat down and didn’t give us any problems. She ate her food, we ate ours and all was right in the world.

Next stop was Williams Sonoma. She did great in the store, found lots of things to touch and lots of people to talk to. Maybe its the big open bright area of Sam’s Club that makes her nuts. Anyway, I got my cutting board (thanks Mom and Dad!) and we headed over to Kohls for clothes. She did fine in that store too, finding little kids to play with in the kids clothing section. We came home, she ate dinner and fell fast asleep.

Here is an audio I took of her as I was putting her to bed. If she knew the camera was on she would most likely not even sing. She’s very aware of herself now, so I hid the camera.

She can somehow get things out of a completely locked closet that is locked up higher than she could ever reach, yet the object she wants is in her room and the closet door is STILL locked. Not only that, she could never even release the lock spring to work the lock. It baffles my mind sometimes. I wish it were only those little things that she does, but there are much grosser things that I’m not willing share online. She will strip her sheets off the bed, remove her pillow case, rip down curtains, break anything that can be broken and if there are tools around, she’ll hide them under her shirt till she gets them into her room. Simone will use the tools to dismantle things like door knobs, unscrew the face plates on sockets and light switches, remove the base board heating panels and try to remove the heating elements inside. We have child locks on all her drawers in her room which she can disengage. She will then take all the clothing out of the drawers and climb into the middle drawer and sing her heart out. We’ve caught her more times than I’d care to count sitting in the drawers. She likes to also steal money from every one…coins to be exact, and she will then deposit them into the television set in her room. She has destroyed two TV’s that way. We set up the TV in her room so she could watch videos during the day. The TV is never allowed on at night. The other day when we brought her TV back into her room, it wouldn’t go on. After jiggling it a bit, we could hear all the coins inside. We did purchase another TV which will be mounted up high where she can’t get it, but we have a feeling that baby MacGyver will somehow break this TV too. I think she can levitate when no one is looking. LOL When our other children were small, each had something they did that was mischievous, like Gina feeding the VCR a grilled cheese sandwich, taking all the baking ingredients out and pouring it on the floor to make a giant cookie. Hannah has raided my stash of fabric and craft items to make things and left a huge mess, Shoshie has hoarded items of value to her in her diaper and when I’d change her I’d find crayons, pennies, doll heads (wouldn’t fit the whole barbie), paper money and game pieces. Noah used to hide all the clothes and toys under his bed or in the closet when asked to clean up his room. But none of them have ever compared to Simone’s drive for destruction.

As she changes on the GAPS Diet, we’re hoping some of her sensory issues which cause her to destroy things will diminish. With renewed hope comes deciding on how best to finish her room. Last year we painted her room, put shelves up, two mirrors (one she shattered into a lot of pieces), coat rack (she dismantled it), and there is new carpet. Her mattress sits on the floor, and she had a TV, VCR and dresser in her room. We had a very heavy duty black wool blanket up on her window so that the light wouldn’t bother her…she ripped it down. We’ve tried to put it up many times, but she is always able to rip it off the walls. Any curtains I’ve put up, the rods are bent and broken and the curtains come down. If she gets hold of pen or worse MARKER she will write all over the walls, herself and anything else she thinks needs to be decorated. Her room is just bare boned no frills. I want something more for her, but I worry that it will be all in vain to do it. I’m optimistic that in the next few months her behavior will change and maybe we can put together a real little girl’s room, outfitted in pink and glittery things that she enjoys so much.

Anyway, as I continue to update on her progress, I’m astounded (as is everyone else) at the leaps she’s making. I’ve added a page at the top of the website that is documenting her progress and things that she’s saying new. It seems she has something new to say each day, except for yesterday interestingly enough. Yesterday she reverted to screaming, grunting and pointing. I can’t help but wonder if it was just the change in schedule or it was the pop corn. Corn is one of those items that is not allowed on the GAPS Diet. As I write this, Simmi is singing in her room and through the monitor I hear her singing her ABC’s as well as Twinkle Twinkle Little Star. She understands and put it together that both songs are the same melody. LOL
This is a video I took of her in September 2011. Notice how disengaged she is and how she doesn’t seem to be “all there.”

Now, since we’ve been taking out all starches both rice and potato and corn, here’s Simmi after a few weeks on GAPS and not even fully following it yet. The first one was taken on December 12, 2011, and the other one was taken two days ago!

Her emotions used to be very simple, yell and get angry if she didn’t get what she wanted, cry and scream if she didn’t get what she wanted…and everything belonged to her alone. That also is very much toddler behavior. But she’s 4 1/2 and just now learning that she has other emotions too. Yesterday she wanted to look at all the photos my dad had given me (they were sitting on the table) and I was in the middle of doing dishes. She pointed to the photos and I told her my hands were wet and that we would see them later. She wanted them right in that moment and standing my ground I said no. Instead of screaming and yelling, she crossed her arms, collapsed onto the floor and sobbed quietly. I left her to her sobbing and three minutes later she got up and walked away without touching the photos. Normally she would have screamed, grabbed at them, tried to form a diversion and stole the photos off to her room where she’d shred them up. She didn’t do that. Again, this is an amazing milestone.

So again I ask, is it the diet or is it her own neurological growth and the omission of rice has nothing to do with it? I have SO MANY QUESTIONS! We took out potato chips, sweet potato chips, and corn chips, replacing them with crunchy raw carrots and celery. She loves celery almost as much as she loves carrots. Simone alone can finish off a five pound bag of carrots in a week or less. I truly believe we are on to something here and I’m excited about Simone’s future for the first time. I’ve seen videos of children who were very autistic and then after a year on the diet were no longer screaming, having meltdowns, could actually speak (and speak well!) and could fully engage their parents. I was so amazed by that. If it can do that for these autistic boys and girls, I will be so excited to see what it can do for Simmi who often acts autistic but hasn’t been diagnosed. If it makes her apraxia of speech and global apraxia better, awesome! If it helps her to organize her movements better, she will be more confident to try new things. She’s still stuck in her own world where everything must always be exactly the same everyday…I long for the day she will be flexible enough to go outside to play and come in and not have a meltdown because she didn’t watch Peppa Pig.

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