Posts Tagged ‘Food allergies’

6 Year Old Birthday Party!

Saturday was Tallulah’s best Birthday Party ever. For the first time we invited a lot of kids from school and out of the 20 invites we sent I think we had about 17 or 18 kids come. I kind of lost count with siblings and last minute rsvps. I actually had to run out and buy a few more things just before the party because I was afraid we would run out with so many more kids than we were planning on. For other Birthdays the most we have ever had is 4 or 5 other kids besides my own. And we have never had anyone drop their kids off with us before. That was a totally new experience. I was a little nervous because I didn’t know most of these kids or their parents, but Madison, Lu’s one-on-one school aide, told me that the kids who came were pretty much Lu’s little gang at school, with some brothers and sisters along.

 

It’s hard to express how happy it makes me to know that she has a little gang at school who looks out for her and wants to hold her hand on the way from homeroom to art or recess or whatever and who want to sit all around her at circle and movie time. I was really impressed with all of these kids. They were all so considerate and patient and totally awesome. They formed themselves into a line for the pony rides, they abided by the limits we set on how many kids could get on the trampoline and one would get off when another one wanted to get on. But mostly, they were just so nice to my kids. Several times during the party I kind of started to tear up.

Back when Lu was first diagnosed I remember talking to the psychologist who gave us the diagnosis about friendships and meaningful relationships and she told me that it is likely that those human interactions that mean so much to me could very well hold little to no meaning for her. That was one of the hardest ideas for me to grasp and I have always wanted to find ways to encourage friendships without going total psycho mom on someone else’s kid insisting that they be best friends with my daughter.

 

 

 

 

I try not to push this at all because I would hate for Lu to experience social rejection before getting a chance to experience real friendship. We all experience rejection at some point in our lives. I still remember early grade school snubs from when we moved several times within just a couple of years and I was the new kid over and over. My main difference was just that I came in during the middle of a school year when everyone else already had their friendships established and I didn’t know anyone.

 

 

 

 

 

For my kids the differences are greater, and the work of making friends, that much harder. It’s nice to know that there are special kids out there who will go the extra mile to be friends with awesome and quirky kids like mine. I also think that both Dahanna and the school aides helped a lot at the start of the year to get kids interested in interacting with Lu. They have also taught these kids a lot about autism as I learned from a conversation with one very earnest little 6 year old who wanted to know why Tallulah’s sister has autism too. But we are now at the end of the school year and it is great to see that there are kids who still genuinely want to be her friend.

 

At the end of the day when we were putting the kids to bed I asked Lu if she had a good Birthday and she gave me the thumbs up and whispered, ‘Good Birthday’ with a sleepy smile. I didn’t get a picture of that, but here is Myffy pegged out early in the hammock in the back yard. All in all, it was the best Birthday Party yet.

WE DID IT!!! Our Autism/EE Disneyland Adventure!

Well we did it. We took our kids to Disneyland! A year ago I didn’t think a trip like this was possible. Back in January I even wrote this post called Disneyland and the Dog about how we couldn’t imagine being able to take our kids to Disneyland before learning about Arizona Goldens’ Autism Service Dog program. And now, less than a full year later we have accomplished an enormous family goal! We have gone on our first completely non-medical family vacation in 5 years and did the fun kind of things that other families do with their kids.

There were a few hiccups and tough times along the way, the drive was long and mornings and evenings so off schedule caused a fair bit of anxiety for the kids, but the actual time spent in the Disneyland park itself was so much better than I could have hoped for.

We decided not to buy multi-day passes ahead of time because I am so used to the things that we expect the kids to like the most turning out to be too difficult or traumatic. I could just see us getting there and the crowds and noise and motion being too much for the kids to handle for more than just an hour or two. I fully expected to only stay 2 or 3 hours on the first day. But thank goodness we planned ahead and brought Lu’s tube feeding equipment and food with us in back packs into the park. We stayed for more than 7 hours and walked more than 5 miles inside of the park for 2 days in a row (thanks fitbit step tracker)!
I need to give some credit where credit is due here and a ton of credit goes to the lovely Madison, Tallulah’s one-on-one school aide and one of her home ABA interventionists; as well as credit to the also lovely Dahanna who was a total star! The way we worked things was that Madison mostly was in charge of Tallulah and Dahanna, walking with them both, giving Dahanna commands, holding Lu’s hand in one hand and Dahanna’s leash in the other, keeping the two leashes from getting entangled and the rest. I was in charge of Myffy and had a back pack with just the feeding pump, bags, tubes, adapters and syringes in it which is not very heavy in case I needed to run after Myffy or jump in to help Madison with Lu. And Stew was in charge of everything heavy and everything else; the stroller, the cold bag with Lu’s food in it, and another back pack with all of the other stuff we might possibly worst-case-senerio need.
Dahanna did a great job of navigating the crowds, waiting in lines, keeping our group together like a sheep herding dog and riding all of the rides with Lu but one (that one was the Dumbo ride which I was afraid to put her on because I had this momentary vision of her hopping out of the Dumbo when it goes up and down in that shakey way, it was the first ride we tried and it took me awhile to realize that she can handle pretty much anything we can). The people around us marveled at her calm demeanor and professional air as she hopped in and out of all the crazy shaped ride cars and never even batted an eye when the Pirates of the Caribbean ship plunged down into darkness and water sloshed in, getting her pretty well soaked by Lu’s feet.
One thing that I was really impressed with on this trip that I never even noticed as a kid was how alert and awesome the Disneyland Staff are. Maybe this was accentuated by having the service dog which is a very visible sign of a kid with a disability, and maybe it was having the guest assistance pass which put us into the disabled lines, but even when we were just walking around and trying to get food I felt like the staff were constantly watching, ready to help and totally on the look out for kids in distress.
When we went to eat the chefs came out to talk to us about the kids’ food restrictions, and even though Lu never actually ate anything by mouth the whole time we were in the park, I so appreciated their willingness to make up special food that my kids could safely eat. We got gluten free rolls, BBQ meats that were not dredged in flour and had a special sauce, pancakes and burritos that were gluten and diary free. It was great. Myffy ate a ton of everything and hopefully next time we go Lu will be interested in eating as well. Normally Lu does not like doing her tube feeding anywhere but in her own bed at night, on her beanbag or on the sofa during the day, and she will let us coax her into feeding at the dining room table with us as we eat dinner for 15-20 minutes usually before asking to  move to the sofa. So even though we brought her feeding stuff with us, I was pretty sure she would want to go back to the hotel. But she didn’t. She let us hook her up right out there in public at the tables of the Disneyland restaurants. And she hardly even seemed to notice.
On the first day there it wasn’t until half way through lunch that I realized that I’d completely forgotten to bring Lu’s ipad which is usually the only way we can get her to sit with us through a meal. I felt a moment of panic but then looked around and realized that everything around us was better than a life-sized ipad. All day long Lu’s face had the most amazing glow of happiness. And once she got used to the routine of waiting in line and then going on rides, she eventually didn’t even seem to mind the wait too much. Especially once she got tired and wanted to sit in the stroller while waiting.

We rented the stroller with Myffy in mind because her legs are so short and she is a pretty slow walker, but she would not go in it even for a moment. She wanted Mommy up and no one but Mommy. So I carried her. All the time. For over 7 hours and over 5 miles a day, two days in a row. And boy was I feeling it by the end of the second day. I was so glad I could look forward to that chiropractor appointment I’d made for a couple of days after we got back. I made a mental note to schedule a massage as well. But aching backs aside, it was an awesome trip and we never even came close to my worst fear of losing a child at Disneyland.

 

 

 

It was a couple of long hard days, and Myffy didn’t quite make it without a little nap in line for It’s a Small World (which I think we rode 7 times during the two days), but all in all I’d call our Disneyland Adventure an unqualified success!

Myffy’s Birthday, a new medical mystery and getting ready for Disneyland!

My sweet little Myffy is now a big three year old girl! Turning three has become an interesting rite in our family because besides being a significant milestone for any child, at three our kids also age out of the Arizona Early Intervention Program and age into a whole new set of agencies and services. Especially now that Myffy has her official diagnosis of ASD.

Myffy’s party was super fun. We decided to keep it small and a bit on the down low since that is what usually works best for both kids. In the past when we have packed the house for a party that is usually when Lu gets overwhelmed and needs to retreat, and even Myffy seems to prefer smallish play dates to having tons of people around. And this way everyone got to have a couple of turns on the pony.

 

It was really nice to see Lu and her best friend from school playing together. Can I tell you how exciting it is to write ‘best friend’ about Lu? But it’s true! They hang out at school and have been having regular play dates on the weekends lately. The best thing is that her friend seems to really enjoy Lu’s company without getting frustrated or bored by the lack of conversation. They jump on the trampoline together, paint together, draw together, swing together, run around together and basically just hang out, together! It’s so great. And at Myffy’s party they rode Lu’s pony together.

 

 

 

As the Birthday Girl Myffy of course got lots of pony rides! In the past she has only seemed vaguely interested in the pony, sometimes wanting to get up with Lu if Lu is riding, but never all that interested in riding herself. Today all that changed. Which is probably good since Lu is going to out grow Cinnamon someday and like all other things between siblings, Cinnamon can get handed down.

I love how happy she was to be up there and she even said ‘yeehaw’ and ‘giddyup’ like Jesse from Toy Story, and then said ‘more riding horse Mom,’ when she wanted another ride. Gotta love an expanding vocabulary!

 

 

In the midst of all the activity of Myffy’s birthday and starting her new school with her own IEP and services and everything, some new things have come up with Lu. Lu seems to be having head aches. Regularly. Pretty much daily. But not constantly. Intermittently. She shows her distress by pressing her fists against her forehead, sometimes hitting, sometimes pressing her palms hard against her eyes. She has started hitting her head on the wall again which we haven’t seen in ages except for a little bit during the failed food trials last summer. She has also been saying “eyes” a lot while opening her eyes wide as if to show me. I have looked for something in her eyes but have not seen anything. Sometimes she rubs them. Often she cries. And she is grinding her teeth loudly. The teeth grinding is actually the first thing that we noticed. It’s been going on for several weeks. We saw the dentist (an ordeal in and of itself) who saw nothing in his exam to make him think it was dental pain, but suggested we get dental xrays- something they have never been able to accomplish with Lu before. We saw a new doctor who had several ideas but wanted dental xrays first. A dose of valium and versed later we were able to get decent xrays on the second try. The dentist was so thrilled with actually being able to work on her that he asked that she have versed before every appointment. Sigh. We also saw her GI doctor to have her mic-key button replaced. Which is completely terrifying to Lu. That doctor also suggested that we sedate Lu before every clinic visit. Even just the check ups. I’m really struggling with all of these requests to medicate her. I understand why they ask. She is difficult to examine, difficult to work on, distressing to other clients and clearly expresses her terror. But seriously, how much sedation can one little 5 year old take? I’ll probably come back to this in another post.

But back to the headaches: her dental xrays came back with a little decay showing, not enough to cause pain and not even enough to warrant filling right now. The dentist suggested filling it at her next cleaning which he thinks he can do with versed. Otherwise we have to book her into the hospital with full anesthesia to have a small filling done. The new pediatrician wanted to rule out dental pain before xraying the sinuses and then moving on to other imaging, like MRI or CAT scan. And then there is the possibility that she might be developing migraines. Both her paternal grandmother and a paternal aunt have migraines. Which of course won’t show up on any of these scans. The symptoms are affected by a dose of children’s ibuprofen which I though would rule out migraines, but the doctor says not necessarily.

This is one of those many, many moments when I wish that Lu could communicate enough to at least tell us a little more about this pain. Where is it? What does it feel like? Is it there all the time and just gets worse and better or does it completely come and go? Is it all of a sudden or does it slowly build? Is it a sharp pain, or more like pressure?

Oh and then yesterday I got a note from school in her bag saying that they tried to test her eyes and recommend that she see an eye doctor. One more possibility. If she has vision problems, that could be causing pain too, right? So today my list is full of new appointments to make and new conversations to have with various doctors. And probably a call or two to the new secondary insurance company since we were informed last month that Lu’s old Medicaid insurer Capstone (who we never had a single problem with) was suddenly no longer her insurer.

In more exciting and upbeat news we are also starting to prepare for our long awaited trip to Disneyland! I’ve ordered Lu’s tube feeding supplies to be delivered early and her prescriptions as well. I’ve started making checklists for packing to make sure we have everything we will need for the kids and Dahanna for as many contingencies as I can imagine ahead of time. I need to find out where the closest stores that carry allergen free foods are relative to the hotel and figure out which foods to just bring with us. I’m nervous but excited. I really hope they will love it. Fingers crossed!

The Trouble with Food Trials

It has been more than a year and a half since Lu was diagnosed with EE and had her feeding tube installed. Since then we have been slowly working our way through food trials one by one to find out which foods her eosinophils react to so we can eliminate those foods and rebuild a by-mouth diet. The ultimate goal is to be able to feed her enough food by mouth to sustain her and get her off of the feeding tube for good.

Don’t get me wrong, the feeding tube is a miracle that saved her life, got her back on the growth chart and put enough weight on her to help her look like any other kid a year or so younger than she actually is (rather than a survivor of famine), and for all of that I will forever be grateful. But now that she is going into kindergarden NEXT WEEK (pardon the capitals but I’m kind of freaking out) I want to get her to the point where she can sit down and eat lunch with the other kids instead of needing to be hooked up to the feeding tube.

This won’t be a problem this year because our team has decided that Lu will do half days of kindergarden so she can continue her intensive ABA Discrete Trial Teaching program at home in the mornings (this is where all of her skill acquisition has been going on all along), and then will attend school after lunch. So we do a tube feeding before she goes to school and another when she gets home from school, easy-peasy. But we are hoping that by the the following year, when she will be going to kindergarden for full days, that we will have found enough foods for her to be able/willing to eat a by-mouth lunch that will sustain her though the afternoon.

 

The problem with the food trials is that so far, only egg and soy have gotten the ok from her GI doc. This summer has been a disaster of trying first dairy, then non-peanut tree nuts. It has been amazing and horrifying to watch the way the worst of the old autistic behaviors have come back in reaction to the foods. I’ve realize that so many of the odd stiff-muscled movements, hyper-active jumping, spinning, vomiting, the extreme levels of verbal noise-making (from the quieter moaning, whimpering, twittering, and throat sounds, to maniacal laughter/giggling, yelling and screaming), and even hitting her own head are all responses to internal pain. The most amazing thing has been that for the first time, she has finally been able to add in the telling and imploring “Ow!” when she looks at me and hits her forehead with her fist. And after seeing her recover and what she is like when she is not in pain, I feel we have finally confirmed that these are not just autistic traits that she does at random (like we were told they were), these are both her reactions to pain and her way of trying to tell me she is in pain. At one point the other night she even said ‘help me’. Do I even need to say how badly I wanted to make it all go away? But all I could do was put some children’s tylenol in her tube and hold her as she twisted and twitched and eventually fell asleep.

It has been so measurable this summer, both with the dairy trail and the nut trial, the difference in sleep disturbance, self stimulatory behavior, attention, compliance, and even this small bit of self injurious behavior in hitting her own head, oh and the return of the terrible vomiting, that we just have not been able to go through the full 90 days to get to the endoscopy at the end of these food trails. We can see how badly she is reacting, so we stop. It’s hard to believe a bit of inoffensive almond milk can have such and extreme effect on someone, but there you go. I just hope it all wears off before she has to start school next week.

Just to clarify: I do not believe that changes in diet in any way ‘cure’ autism. However, I do believe that if a child has a condition like Lu’s EE that causes pain which the child is unable to express verbally, and changing the diet removes that pain, then I do believe that it can affect some of the behavioral characteristics associated with autism. Thanks for hearing me out on that one.

So where does this leave Lu’s diet? Mainly fruits, veggies, meat (for Lu this means bacon), gluten-free grains (like rice- not that she eats rice but she can have rice milk, rice dream ice cream and rice flour), eggs and soy. And the things she can’t eat: wheat, all gluten grains, dairy, all nuts, fish and shell fish. Now that she is finally sometimes showing something of an interest in the food the rest of us are eating, we have decided to all go gluten, dairy, fish and nut free. Though we may still sneak in a bit of sushi on a date night if we have a babysitter. For those of you who know me well, you know how hard it has been for me to give up my beloved fluffy, crusty loaves of fresh and fragrant sourdough, not to mention the occasional beautifully baked and layered butter croissant. And how hard it is for me to ever actually get my 5 fresh a day. I’ve been doing lots of experiments with the Vitamix to make drinks and soups that get us the nutrients we need. It’s an on-going experiment. If anyone out there has suggestions for amazing allergenic recipes that kids will love please let me know. I’m only an ok cook and an even worse baker, but Stew and I are both pitching in to try to give this our all. Who knows, maybe we will manage to lose some weight and get healthier in the process. One can only hope.

My Big 5 Year Old Girl!

A lot has been going on around the Turrell/Anderson house lately. We got the results back from Lu’s last endoscopy and while she did have a few eos (1 in one screen, 2 in another and 4 in another) our GI doc says that anything under 15 per screen is considered to be within normal limits so Lu has been cleared to continue eating eggs and move on to a new test food. We decided to go for one of the big guns: dairy. I was pretty excited to be able to give her back dairy for her birthday. Of course the doctor warned us that if she has a strong reaction it could ruin her birthday, so we eased into it by starting with chocolate pediasure (which includes a modified version of cow’s milk for the lactose intolerant). This used to be about half Lu’s daily diet back before her diagnosis, and if she is able to drink this by mouth again it could take us a long ways towards getting her off of the tube eventually. Was she happy to have her choc-milk back? Oh my goodness was she! And she seems to suddenly be a little bit more interested in eating other foods too. Here she is eating the miso soup with tofu that she used to eat a lot but hasn’t wanted in ages. She requested it while she was already doing a feed and ate quite a lot.


Here she is at her Birthday Party drinking chocolate pediasure while taking a break from the pool and the trampoline.
 
 
 
 
 
 
 
 
 
 
I’m so glad that it is finally warm enough for the kids to be able to go in the pool in the back yard. Both kids absolutely love it and would stay in there all day and all night if we would let them.
 
 
 
 
 
 
 
 
 
 
One of the most exciting things about Lu’s 5th Birthday party is that for the very first time since before her regression and diagnosis she spent an entire party out with the gang and never once retreated to the bedroom to give herself a break. She greeted people as they came when we prompted and said good bye as each guest left, she seemed happy to have other kids in the pool with her, eating with her at her table and jumping on the trampoline with her. It was fantastic! I really hope that being 5 is going to usher in a new era of Lu’s heightened sociability.
 
 
 
 
When she got tired and needed to rest for a bit she just curled up in her little lounger and watched everyone for awhile. We didn’t even have to use a tv or iPad to convince her to stay in the same area as everyone else, which we usually have to do if we want her to sit down and hang out with a group of people. She just seemed so casual and so comfortable. I don’t think she got upset even once.
 
 
 
 
 
 
 
Tallulah’s cousin Danica has always been one of her favorite people on the planet. Even through Lu’s most anti-social times she has almost always had at least one hug for Danica when they saw each other, and usually a lot more than that. On this day she couldn’t seem to get enough Danica time in.
 
 
 
 
 
 
 
 
For a moment I was a little sad that she didn’t want anything to do with any of the amazing allergen adjusted cake and ice cream that we were able to get from the bakery at our local health food store, but hey, you can’t have everything. And the truth was that she was too busy jumping and hanging out in the pool that she didn’t want to take a break even for cake and ice cream. Whatever. She had fun. And that’s all that counts. And right around 6:30pm the awesome day was rounded out by a solar eclipse. Awesome! 
We didn’t go crazy with gifts this year, mainly because in a few short weeks, on June 8th, Lu will be getting her Autism Service Dog. Thank you so much again to all of the wonderful people who donated and helped pass on the word about our fundraising project. We raised the money faster than we could ever have hoped and Lu and her dog will definitely be ready to go to school together in the fall. This is the best Birthday present we could ever have hoped for her and it’s all thanks to our wonderful family and friends. 
Stew and I have finally decided to join the 21st century by making a real honest to goodness mailing list through Mail Chimp instead of always trawling through our hotmail and yahoo contacts list trying to remember, was this someone who bought a cd once? Or someone we met at that autism conference? Most of you will probably be getting a first mailing from us very soon if we have your email address from dog donations or music and etsy mail orders. If you want to make sure that you are on the mailing list you can subscribe below and expect periodic updates on Boot Camp with the dog, any new music projects in the future, and whatever else we get up to. Don’t worry, we won’t be filling your inbox with emails every day or anything. We mainly just want to make sure that everyone who donated $25 or more gets the Thank You cd Stew made and that we can update you on progress. Thanks for reading. Thanks for supporting us and the kids.
 

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