JoElle's dr appt

JoElle's dr appt with her psych. went well.

He automatically noticed JoElle had lost weight since the last appt, about 5 weeks.
So, in 5 weeks, she had lost 3 lbs from Aderrall. She only weighed 30 lbs, so this is 10% of her body weight. She couldn't eat much at all, didn't have an appetite, her stomach hurt constantly, her head hurt constantly. Her anxiety was increasingly getting worse, she couldn't stop biting her nails at all, then she needed one of us to sleep with her. She was starting to cry all the time again.

We all agreed to take her off immediately.

I suggested she might be bi-polar instead, as it is often mistaken for ADD/ADHD. Her dr won't diagnose her as such at this age. But, neither will my dr or my mom's dr.

Instead, he put her on a med that works like a mood stabilizer, but is actually an anti-seizure medication. So, Dr. A. is treating her as if she were bi-polar, without calling her such. Crazy, huh?

One of the worst things going on that concerned us so much was that JoElle was going into these catatonic states, we could not get her attention, she would just stare. Then, after a few minutes, she would snap out of it, complaining that she felt like she couldn't breathe and she was going upside down, right side up, upside down, and she was scared.

I thought this sounds much like a panic attack. The Dr. said it could also be a type of seizure, hence the med he put her own. Also, until she is 6, she cannot take any mood stabilizers labeled as such, per FDA regs.

The pharmacist confirmed it sounds like a seizure and the med is a good one. The only thing to look for is increased anxiety within the first 4 days. So far, none of that. Of course, it has only been 1 day.

On a positive note, even on the Aderrall, she decided she was ready to be baptized. AND she decided she was ready to go back to her Sunday School class with Mrs. Kay and Mr. Eddie. She did it, and stayed second hour. We are so proud of her!!! She made a friend, Lauren, who is also lonely a lot in there with the other kids, and who also is a good gymnast.

Yesterday was a good day for JoElle. She is still on Prozac and then Trazadone to sleep, plus this new med. She is sleeping well b/c of the med, tried to take her off, didn't work.

Psch appt for J.

We had to take JoElle to her monthly appt with her psychiatrist, we have many concerns about possible panic attacks, she becomes almost catatonic, and when she snaps out of it, she says she couldn't breathe and she was upside down, right side up, and scared.

The outcome was to take her off of Adderall, which we were using to treat what appeared to be ADHD. Without it, she was not able to focus, stay still, couldn't stop doing flips, back kick overs, handstands, etc, ALL DAY AND NIGHT until she would have to take her sleeping pill, which is the only way she can sleep and stay asleep with no nightmares.
BUT, it was causing her anxiety to worsen, it had gone away, she can't stop biting her nails, her stomach is hurting bad constantly, along with a persistent headache. After 6 weeks, these side affects should have gone away.

I suggested that she might be bi-polar, runs in the family, although no dr has "labeled" it such in my mom, my dad, or me. But we have the symptoms. For whatever reason, her dr is also trying to avoid diagnosing bipolar. Not sure why?

Her dr thinks instead of panic attacks, that she could have been having a form of a seizure. He prescribed what he called a mood stabilizer, but what I found out by asking the pharmacist is that it is actually an anti-seizure med, as there are no mood stabilizers approved for children who are 5.
The pharmacist warned me NOT to look up mood stabilizers, as it might frighten me a bit!
He did tell me to watch for an increase in anxiety over the next 4 days, if so, stop meds, call dr.
Other possible side affects to watch for- tummy ache, which she has already been dealing with.

After 4 days, Dr. A also said if no affect on her, then to give her half pill in the AM and half pill at 4 p.m. She is supposed to stay on Prozac in the morning, 4 p.m. this new med, and trazadone at night. We will see what happens....

Art at the Kimbell

This morning, JoElle and I attended a free program at the Kimbell Art Museum in Ft. Worth called Pictures and Pages.

The ladies who run the program first read a book to us called "What would you do with a tail like this?" It was a great book with wonderful drawings of various parts of animals bodies, along with what they do with the body parts.

Then, we had a tour of specific paintings in the gallery, paintings which included different animals. The kids were asked to describe the strokes the painter used on various parts of the painting, then reach into the Feeling Bag to find a certain texture, such as the tiger's tail, or the pheasants feather. It was a great way to incorporate kinesthetic learning along with the sensory aspect.

Lastly, they kids chose which animal collage they would like to create. JoElle chose a monkey, I will post pics of it soon. She loved it and created a great collage.

Afterwards, we ate at the Kimbell's Cafe, oh the food is delicious! Mostly vegan, too, very healthy, and offers an array of hot teas, cold teas, lemonade to which you can add fresh mint, and of course coffee!

Updates on JoElle

So, JoElle has been on ADHD meds for almost 2 weeks now. I can tell a pretty big difference, but it has been crazy b/c of Christmas and New Year's, all the new toys, and no gymnastics.

Tim is not so confident in the efficacy of her medication regimen.

I feel like we have to hang in, see what happens over the next weeks.
I see so many positives, there have been a few minor setbacks, but nothing we haven't overcome.

I trust that God has great plans for JoElle!

Lately, she has been baptizing herself in the bathtub and today she told me she is ready to be baptized "for real." She is very excited! She is now able to pray again, when she was seriously depressed, she could no longer pray at bedtime, now the gift of prayer has been flowing from her mouth.

I wish I could record some of them, they touch our hearts tremendously and I know God is smiling down at her!

Tonight, in her prayer, she proclaimed loudly " I KNOW you are REAL, GOD, and you created EVERYTHING, and you can do ALL THINGS..." and her prayer continued, from her heart. She even prayed for those who do not do the right thing and say the right thing, asking for forgiveness for them and told God "I know you take care of everyone, but I will also help you take care of people, and feed them if they need food, I will be a superhero for YOU!"

JoElle and Meds

Yesterday I had to up her Aderall to an entire pill b/c it was not doing her any good, but today she scared me.

She fell asleep in the car on the way to counseling (which is very rare) and I could not rouse her for almost a minute. It was very strange.

Then, with her counselor, she fell asleep again and was hard to rouse. She was breathing fine and her heart was beating fine.

I confirmed with the pharmacist that ADHD meds do not make a person sleepy/tired/lethargic, so it must be the trazadone at night having lingering affects, since she is starting to become calmer from the medication.

I was proud of her that she asked to go to sleep with no sleeping aid, then asked for half a little later when she couldn't stay still and go to sleep.

We took her to Cook's Children's Hospital today for her EKG and no problems there. Very happy that her heart is handling the meds she is on.

She is calming down quite a bit, doesn't have much anxiety and not much depression either.


UPDATES: After only a couple of days, she was unable to fall asleep again at night with half a trazadone and is now back on a full pill, and is not falling asleep during the day.

Meds...

So, we tried upping JoElle's daytime med to an entire pill b/c it seemed like she needed a little extra help.

Bad idea!

She went looney, couldn't hold it together, crying, couldn't calm down... I had to give her half a pill of trazadone just to calm her down.

Needless to say, we are sticking to half a pill, but we did have to up her to an entire sleeping pill within just a few days of seeking the psychiatrist. She is sleeping well now, it is wonderful! She has not slept in over 2 years, not peacefully, not enough....

We are blessed to have been sent to Dr. A. I trust he will help us and help JoElle. She called him Dr. Pepper and he told her she can call him that if she likes, since he loved to drink Dr. Pepper.

We are starting to get our little JoElle back and I am so happy. Every day is still tough, we still are learning so much. But she did tell her counselor, Alli, that the pill her Dr. gave her helps slow down her thoughts and she is happier.

Tomorrow will be two weeks on medication.

Sometimes it is still so hard to believe that at 4 she has such bad depression and anxiety and has battled this for over a year now, but nobody would listen to us.

Yet at the same time, she still has so much joy! Not always, of course. But tonight, as she prayed at bedtime, she expressed to God how much she loves Him, more than anybody else, and she thanks Him for making her.

Alexa is really growing up fast

I haven't posted much lately, so much has happened. Alexa is really growing up, she doesn't seem like a little toddler anymore at times!

Her words are still growing exponentially, she had her language explosion a few months ago and is enjoying stringing words together to form sentences and questions.

Some of her favorite things to say lately:

"Can I have that?"
"I want to touch it"
"Want to pray?" is another favorite! She ALWAYS remembers to pray when she eats and before bedtime, also at other random times!

Today, she learned "Happy Birthday" and she was singing "Happy Birthday" to herself as she played with cups on the kitchen floor, her singing voice is so adorable,really soft and sweet, she has a pretty high voice. She sang Happy Birthday to Nana last week and loves it now!
She likes the word "pumpkin" since it is almost Halloween.

Some other words she says very clearly and all the time: water, Nana, Ana, Madi, Peyton, Dan, Granny, Grandad, bed, JoJo, baby, potty, bath, moon, it's hot, it's a hot day, it's cold, boo, Jesus, amen, fries, apple, Dora, ...so many more, just some I can think of!

She can sing almost every word to all of the Yo Gabba Gabba songs on EVERY episode, along with most of the words to our adult choir songs on our practice CD's, the entire Avalon CD, Little Levite CD, and several other kids praise CD's. Also, she sings almost every word of many songs like "Twinkle Twinkle", "The Itsy Bitsy Spider" and can almost get every letter in the alphabet.

Alexa is learning to read and write, too. She can write "A" "e" and "o" and tell you what letter it is, she also recognizes a handful of written letters, possibly more: A, B, C, D, E, J, O, S for sure.

She knows a few colors without any help, green, pink, blue, purple, orange, red.

Alexa is getting pickier about having messy hands, although she likes to get messy, she wants it wiped off rather quickly. She loves to wash her hands in the bathroom, all I have to do is say, "Let's go wash our hands" and she runs to the bathroom, gets on her stool, tries to turn on the water and sometimes can, uses soap and scrubs her hands and rinses.

She is like Daddy in that she loves to eat lotion, when he was her age, so did he! She esp loves Jergens, almond flavor, she comes and asks me "Can I have lotion?" and then say "MMMMM, yummy!" when she starts to lick it off her hands!

Alexa has such a great personality, although quite hardheaded at times, she is also a great listener and very compliant much of the time. She is easy going most of the time, but gets upset so easily at certain things, esp her sister. When she gets upset, she throws things, runs off and hits something, bites JoElle and me, bites herself, throws herself on the floor, but rarely cries when she gets upset. She is learning to cope with her emotions much better though, I try not to laugh as she attempts to work through them on her own.

I normally don't have to repeat my requests for Alexa, she does whatever it was the first time, but JoElle has to be asked over and over and over...ad nauseum. There are many times Alexa is defiant, but on all of the litle things, like "Go get your shoes on", time to go bye bye, turn off the tv, turn it back on, put that in the trash, go brush your teeth, close the door...etc etc. she is GREAT about!

Alexa is super friendly, she makes friends easily, loves to hold hands with other kids, even if she just met them, loves to smile at everyone and laughs when her new little friends smile back at her! She can usually get strangers to say hi back to her, like today at the mall, she got two men in the 20s to say hi to her, I didn't expect them to even acknowledge her!

Alexa is huge for her age and for being a girl, at her last checkup for 18 mo, she was measuring 90 percentile or so for height and for weight. She has outgrown her 18 month old pants/jeans in length by several inches and can wear 24 mo length. She has been wearing 3T shirts for quite a while now, although some 18 mo to 2T fit ok. At this age, JoElle had a tiny waist and was short, so she wore 18 mo clothes until Alexa was born, and she was 3 years old!

Alexa just entirely skipped a shoe size last month, she jumped from a 5 to a 7; she wore 6s for a few days, then they didn't fit, I couldn't believe it! The same day I had to buy her new sneakers, size 7, my sister had bought Madison new shoes, also size 7 and she is almost 3! But her feet look proportionate to Alexa's size, unlike JoElle's feet, they used to always look big for her size. JoElle wore size 10 shoe for almost a year, now she is in 12s I think. She needs 5T/ XS 5-6 size pants and shirts now!

Alexa loves to drink my coffee and she will fight more for it!