Some history behind JoElle's medical condition

JoElle was 4 when she was diagnosed with severe anxiety and depression, but we already knew things were not "normal" when she was only 1; she quit napping before she was even 1, she never could go to sleep at night, even when she was a toddler, then she started crying when she was 2 when I would drop her off, but it wasn't the normal separation anxiety either, then it got even worse after 3- she would stand in her room, naked, not sure why she was in her room (to get dressed), she would ask me, "Mommy, why do I just stare all the time?"
From 3-4 I was at home with her and Alexa so she did ok, we found ways around the difficulties, she went to sleep every night with 2 benadryl still late,at 10-11:30 p.m.

Then it just nose dived when she was 4 and she started mother's day out, I was teaching there, I started seeing her zone out, cry, become despondent, become defiant to me, I thought she was just choosing not to listen, finally realized she just couldn't concentrate on what I was saying so then I started thinking ADHD.

But as I talked to her, I found out her mind was racing with lots of thoughts, she described it like someone spinning a wheel in her head, the wheel would stop on different random things. One such thing was on hurting herself, taking a bad pill, her "wheel" was telling her to cut out her eyes, to cut off her nose, and to cut her wheel out of her head, but she knew not to and didn't want to.

Obviously, we were really concerned. The dr's and hospital all confirmed severe depression and anxiety. Once it was under control, we were still seeing some focus issues and too much energy. She is on sleeping pills to sleep. So we tried ADHD med, for a 5 yr old, the FDA has only approved Adderrall, it did not work, she lost 3.5 lbs in 5 weeks.

So we all agreed to take her off the med, I offered up the question of being bi-polar, so now we are treating her with mood stabilizers, which is actually for seizures, again the only one approved for under 6, but some of my friends have taken it and it has worked as a mood stabilizer. She was having seizure, we just didn't know, she would stare and we couldn't get her attention, then she would tell me she it was like she couldn't breathe and she was upside down, then right side up. Everyone says what she is describing is a seizure.

She is doing better though, we have found a great charter school in our city, called the Classics Academy, please pray she is picked FIRST in the lottery at the end of March. I feel strongly that this is where she is supposed to be, so does Tim. But it is in God's hands. It's free since it's a charter school, but they teach Spanish from K on, and they teach the Trivium way, grammar of every subject is important. Plus, they learn some Latin in the morning and an English world derived from it. The principal actually hired Tim at Fidelity Investments back in 2000! Isn't that crazy!?

JoElle's weight

JoElle is still losing weight... she is not even on Adderall anymore, and hasn't been for several weeks now. She is eating like crazy, more than she ever used to, is drinking a ton of chocolate milk....

She was 40 lbs just over 6 weeks ago, the after 4 weeks on Adderall she had lost 3.5 lbs. She had no appetite (one of the side effects) plus her stomachache and headache never went away (also side effects).

She is now at 35.5 lbs. We are charting it on the Wii Fit, it just keeps going down it seems.

Alexa is almost 2, and she weighs 30 lbs. She also is wearing the same size clothes as JoElle.

I am a bit worried about her, but I know she has to start gaining, right?

Update: as of April 1, 2010- JoElle is now up to 42.5 lbs! All of it muscle :) She started to eat normally 6 weeks ago when she stopped taking the antidepressant and the mood stabilizer, it is so great to see her growing again and eating without us having to remind her all the time. Oh yes, she also grew taller, by about an inch or so, not sure exactly as we haven't measured, but judging by her pants getting extremely short and needing 5T, I would say 2 inches at least!

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....