@Bosha711 & @LoisLayn

Cheenomae · July 2014

@Bosha711 & @LoisLayn, I'm here checking in on you both.

Bosha, how have you been feeling? Are you completely done with treatment?

LL, how has Tessa been doing with her modified diet? Have you noticed it being helpful for her? I have a friend that's doing the same thing for her son (he's closer to 10) and she feels like it's made a dramatic difference on his behavior!

Cheenomae · July 2014

That is so great to hear. I can't imagine how difficult that transition was for her and of course for you guys. She's so used to getting certain things and having her life a certain way and to just have it all taken away must have seriously jolted her. She's definitely young enough that she wouldn't just understand right from the start, as my friend's son did. Good for her! Good for you guys for being strong enough to stick it out.

Obviously she's always been amazing to you and such a perfect little being, but I imagine it's changed your relationship too because the level of frustration is now at a level of what the "average" parent of a young child goes though. You know...because young child!! You have so many less additional meltdowns and outbursts because you've been able to identify and change that catalyst! That's exciting news!!

kelbel527 · July 2014

loislayn said:

Once we met with a few people besides our pediatrician, we felt a lot better about trying these other therapies before jumping to meds. It's likely that eventually, she will need meds, but she's not even 4 yet and isn't in a structured school environment yet so if these are improving her behavior, why not go with these until we need to look again.

One thing that has helped us tremendously was in how WE acted and reacted to her. We got so frustrated and once we realized that she wasn't just being an asshole kid, that she couldn't help it, we were all better off. Now we know how to recognize it, how to adjust it, and how to reel her back in. Speaking calmly and rationally to her and getting her to check in with us has helped. She's smart enough to understand it all.

We also had to change our mindset about our "perfect little girl". She's not capable of sitting at the table and quietly eating supper. So what's the goal here, to eat supper? So she's eating her whole supper but she needs to do it standing up because if she sits, she can only focus on that and NOT the food. Fine. Goal accomplished. she needs to run in circles while I read her a book, but she's listening to the story and can tell me what it's about, FINE.

So, I haven't been on here as much lately, but I've been thinking about Tessa, especially since we're still struggling with Brody.

If you don't mind resharing (or if you don't want to do it here, I can send you a PM). But what did you find out is going on? What food habits have you changed?

I know you went into some of this a few weeks ago, but I have been working so much I never got a chance to go back and read it.

We are in process of getting in with a behavioral therapist, but haven't gotten an appointment yet. I didn't realize it would be so hard, but we had to fill out a bunch of paperwork first.

Cheenomae · July 2014

I love it!! I feel like besides all the diet changes and the changes in your reactions to her and your original mindset for your "perfect little girl", all of which are HUGE and should be enough, your patience and ability to pick your battles is another HUGE success.

I know people who would lose their mind if their LO wanted to run in circles during story time. Who the hell cares? She's loving it. She's hearing the story. It's fun for her and is passing time so why the hell not? You've done well, mama!!

Holly_1007 · July 2014

Butting in. Just wanted to say how happy I am for you and Tessa that you have found some things that are working!

Holly_1007 · July 2014

And I've also been thinking about you, Bosha and hope that you are feeling well!

kelbel527 · July 2014

Cheenomae said:

I love it!! I feel like besides all the diet changes and the changes in your reactions to her and your original mindset for your "perfect little girl", all of which are HUGE and should be enough, your patience and ability to pick your battles is another HUGE success.

I know people who would lose their mind if their LO wanted to run in circles during story time. Who the hell cares? She's loving it. She's hearing the story. It's fun for her and is passing time so why the hell not? You've done well, mama!!

We've just started to do this more in our house & it's helping us as well. We could spend 15 minutes fighting with Brody to put his clothes on by himself, or when I know he's tired and having a tough morning, I could help him get dressed (which he prefers and it avoids a meltdown). My kid still knows how to dress himself, but if I can avoid a meltdown on something that isn't the end of the world, it's worth it.

Cheenomae · July 2014

loislayn said:

Cheenomae said:

I love it!! I feel like besides all the diet changes and the changes in your reactions to her and your original mindset for your "perfect little girl", all of which are HUGE and should be enough, your patience and ability to pick your battles is another HUGE success.

I know people who would lose their mind if their LO wanted to run in circles during story time. Who the hell cares? She's loving it. She's hearing the story. It's fun for her and is passing time so why the hell not? You've done well, mama!!

That was the biggest problem. WHY did I need her to sit still, listen, with her legs crossed and hands in her lap for 20 minutes? Is that even reasonable?! NO!

We made special Tessa popsicles a couple weeks ago (yogurt with fruit, frozen into popsicle shapes) and she loved it. Granted, following instructions and not throwing everything in at once and trying to turn on the blender wasn't her finest moment, but I had to sit back and laugh and enjoy the fact that she was engaged in "reading" the recipe, trying to help, and wanting to be involved in her special popsicles. It's caused me to lighten up and be ok with not being in complete control of her every action, and that's been a huge plus for me too.

See, this is why I love TB. Just reading this is teaching me that KIDS ARE KIDS!! It doesn't matter what additional things they have going against them, for everyone it's something. I need to seriously starting losing some of my control freak ways and lighten up. I have done something in the kitchen with Kenleigh THREE times total in her whole life because I can't even imagine the mess and losing control I'd have to do to let a 4 yo participate. Every time I have fun in the moment and then realize how messy and not fun it was at times. That's why I never jumped on board with the kitchen helper....yeah right, my kids aren't coming in the kitchen with me.

I'm branching out. Today. Or tomorrow.... or sometime soon, but I am!

Also, those popsicles sound delightful!

kelbel527 · July 2014

loislayn said:

It started with each of her pediatricians (we had recently switched to a new one) mentioning possibly ADHD. They both wanted to start meds with her, something we weren't quite ready for. We spoke to our DCP and the local education agency who has preschool therapists, and they did a home study and a few daycare studies. They acknowledged that she was a challenge and had issues but that she didn't qualify for meds or special education at this stage.

She gave us a ton of ideas for how to work alongside her interact with her to get the best outcome, and how to recognize when she needed an intervention. We've started doing "chillbreaks" when she starts to spiral, which includes quiet time in bed with one of us, reading books, playing ipad, looking through pictures/videos on our phone, talking about feelings, and giving her 10-15 minutes of relaxation which really helps reset her mind and attitude.

The biggest thing that has helped us is removing all artificial dyes and annatto from her diet. We started March 1 and haven't looked back. For us, we weren't sure it would help or make a difference, but since we didn't want to start down the path of medications and stimulants and lab draws at her age, we figured it couldn't hurt anything. And since it's been out of her system, her improvement has been remarkable. Just incredible.

Thanks for sharing @loislayn! I'm so glad what you've been doing is working! It sounds like you have a lot of great tools right now!

We (well, I am) worried about ADHD, but haven't gotten into a specialist yet. My sister, brother and Dad all have ADD, so I am familiar with a few behavioral techniques, but those center mostly around the attention piece and not at a 4yo level. It also makes me fearful of medicating some day, but that's a bridge we'll cross when and if we have to. That said - he's 4, so many of the characteristics of ADHD are also typical of a kids this age. So talking to someone is obviously our first step.

I'm curious if a diet change would help us as well. I am going to look into that.

There are somedays that are perfect in our house. But most days I find myself spending so much of our day figuring out how to avoid meltdowns and still manage to enforce the rules. And then during the workday, I'm worried that I'll get a call from daycare all day. It can be exhausting.

cmarie520 · July 2014

loislayn said:

It started with each of her pediatricians (we had recently switched to a new one) mentioning possibly ADHD. They both wanted to start meds with her, something we weren't quite ready for. We spoke to our DCP and the local education agency who has preschool therapists, and they did a home study and a few daycare studies. They acknowledged that she was a challenge and had issues but that she didn't qualify for meds or special education at this stage.

She gave us a ton of ideas for how to work alongside her interact with her to get the best outcome, and how to recognize when she needed an intervention. We've started doing "chillbreaks" when she starts to spiral, which includes quiet time in bed with one of us, reading books, playing ipad, looking through pictures/videos on our phone, talking about feelings, and giving her 10-15 minutes of relaxation which really helps reset her mind and attitude.

The biggest thing that has helped us is removing all artificial dyes and annatto from her diet. We started March 1 and haven't looked back. For us, we weren't sure it would help or make a difference, but since we didn't want to start down the path of medications and stimulants and lab draws at her age, we figured it couldn't hurt anything. And since it's been out of her system, her improvement has been remarkable. Just incredible.

I've never heard about removing this from a diet. Do you have any information about this? I'm curious! Glad you found something that worked for you @loislayn!

bosha711 · July 2014

Thanks for checking in!

@loislayn‌ what great news about T! Sounds like you're doing a great job being so proactive.

I'm doing ok. I have bloodwork & an Endo appt in a few weeks, so I will see then how my "numbers" are doing. Hopefully they have continued to go down since the last time.

I'll be doing a radioactive iodine (RAI) treatment, most likely in early October. I'll be going over the details at my next appt, but basically I go on a low iodine diet for 2 weeks, then go off my meds, then take a radioactive iodine pill, then go into isolation for a week & get a full body scan done. This will allow doctors to see if there is any trace of cancer left or if it popped up anywhere else. The RAI also will ablate any remaining cancer cells, theoretically. It will also give the doctors a more accurate baseline for what my "numbers" are, so they can compare it to any variations going forward.

So I'm just trying to put that all out of my mind (aka denial, lol) for now so I can make the most of the summer.

Thanks again for asking

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