ADHD Update

Last week, I attended a parent-teacher-speech pathologist meeting with Ellie in tow.  For over an hour, my typically hyperactive, unfocused little girl sat in the corner with a group of baby dolls and played.  Relatively quiet.  She sat.  She engaged in pretend play.  She did not try to run out of the room once.   Two weeks ago, this was a distant, unrealistic dream of mine.

This picture says a thousand words.

We had a snow day (I know!  "Snow" in Austin.  Hell hath frozen over.  The world has ended).  I set Ellie up with paint, brushes, paper and a table.  Look closely at this photo and you shall notice the following:

1. Ellie is sitting.

2. There is no paint in or around her mouth

3. The paint cups are in their upright position.  As in not dumped onto the table or floor by an impulsive little girl.

4. She is wearing a princess dress under her paint shirt (okay that is not important but I know Ellie would want me to point out her awesome clothing choices)

5. She is painting.

Let me reiterate.  She is sitting and painting appropriately.  There is nothing in her mouth!  She did not throw anything!  Ellie painted like this for 30 minutes.  THIRTY minutes.  Practicing those fine motor skills and focusing.  

In my last post [Denied Entry], I bemoaned the fact that Ellie's private summer preschool was refusing to let her attend this summer due to their fear of choking.  I explained that she no longer mouths.  I know that this is hard to believe.  I can scarcely believe it myself.  For well over two years, I have written post after post about Ellie's obsessive mouthing.  How she couldn't even use a writing implement because she was fixated on mouthing.  How she couldn't play because she was mouthing.  How other kids didn't want to play with her because she chewed on their toys.

Ellie playing in her sandbox.  She played for 2 [TWO!!!] hours

What happened?  Did I glue her mouth shut?  Did I feed her an exclusive diet of tree bark to make her oral avoidant?  Have I resorted to duct taping and strapping Ellie to a chair?

One word.

Adderall.  

Some of you may be thinking "it is about freakin' time!" while others may think "she is too young" or "there are more natural, better ways".  

After my last post about Ellie and ADHD, Andrew and I had to make some tough decisions.  If you want to read other methods for the management of ADHD, read through this blog or read this post.  I have written about most of them.  If you think she is too young, like I did, peruse the AAP guidelines for the treatment of ADHD in the 4-6 year-old age group and then consult the Lexi Comp Pediatric dosage handbook for methylphenidate and amphetamine salts (actually don't do that, the side effects are scary).  Anyway, short-acting stimulants are approved for children down to age four. My mama bear opinion was that she is too young and stimulants are scary and I am going to do behavior therapy and sensory integration until it kills me. . . except, it wasn't working for our daughter.

To wrap my brain around the concept of placing my baby on a stimulant medication, I asked myself the following questions many times in the past few months:

What if my daughter had diabetes?  What if her pancreas was malfunctioning and not able to produce enough insulin for her body?  Would I refuse to treat her with insulin?  There are risks to any medication you know.  

My daughter has ADHD.  Her brain is not working correctly.  The neurotransmitters of dopamine/norepinephrine are not functioning properly when exposed to stimuli and various neuro-pathways are not functioning properly.   Would I treat her with a medication to help regulate these neurotransmitters and pathways?

Photo: Scientific American

Yes.

I will tell you that it has not been a walk in the park.  Each person responds differently to medications and there is trial and error to find the right one.  

We tried Ritalin.  We saw nothing with the first dose.  When we bumped it up and I helplessly watched my daughter lay on the floor crying and screaming for 4 hours--the exact amount of time it took for the medication to leave her system.  It was horrifying and I was back to questioning my judgement.  

We then switched to a different class of stimulants and tried a tiny dose of Adderall and saw. . . nothing.  We then increased the dose and saw. . . nothing.  

We increased the dose again and saw. . . appetite suppression (a common side effect) and no behavior changes.  We increased one more time and BINGO!  A light switch turned on in Ellie's brain.  

My Ellie could focus.  She could focus for very long periods for activities that she is interested in.  She can focus very well on escaping activities that she does not want to do such as going to ST at school or going down for quiet time. She is a little less impulsive (think a 7 out of 10 instead of 10 out of 10).  She still gets distracted for following directions when it comes to hanging up her back pack, putting on her shoes, or toileting, but she requires a little less redirection.  The most surprising and completely unexpected effect was the cessation of her mouthing.  It just stopped.  I even sent her to therapy without her chewy tube *gasp*.  

The biggest side effect we have seen is her lack of appetite.  She barely eats until the late afternoon/evening.  It appears that she has lost a little weight.  We are trying to increase the caloric content of different foods and we have learned to only offer her small bits at a time, at frequent intervals.  We are also discussing a "drug holiday" on the weekends.

Adderall is not a miracle drug.  There are still several behavior issues that we are working on Ellie with, but we are excited to see her play and paint and color.  

This photo has nothing to do with ADHD.  I just wanted to prove that it did indeed get cold here.  Oh and prove that Ellie owns a coat!

Denied Entry

In Ellie's PPCD (preschool) setting at the local elementary school, she is in a classroom with one teacher, one aide, and 11 other children all with special needs.  She has some exposure to typically developing peers when the Pre-K class visits Ellie's class for various activities.

For the past two summers, Ellie has attended a private preschool during the summer.  Each summer I have watched her thrive socially.  She loved this place.  I loved this place.  I thought that they loved her. 

This past week, I contacted the preschool to get her enrolled for the upcoming summer.  They politely refused to take her back this year.  I am devastated.  I feel defeated.  I feel as though everything has been an upward battle.

Their reasoning: they are not able to provide they type of supervision that she needs.  They are not equipped to handle special needs.  Why the sudden change?  Ellie started this school before she turned two.  She has always been placed in a slightly younger class to account for her developmental age rather than chronological age.  This year, she would be 4.5 years-old.  She would be placed with the 3yo group.  The 3 yo group has a much larger student-to-teacher ratio and the rooms contain toys with smaller parts.  The owner and teacher recalled how much Ellie loved to put stuff in her mouth.  How much she chews on the crayons and paint brushes.  They refused to listen to me when I told them that she has greatly improved with the sensory oral seeking behaviors in the last 5 months.  That's right, it has been 5 months since they have seen her.  They have not seen how far she has come.  How much she has changed.  How she STOPPED mouthing objects.  Yes, I understand their reasoning.  They are worried that she will choke in a classroom with less 1:1 care and with smaller items.  I understand that.  Yet, I am sad.  Part of me thinks that they just "don't want to deal with it" and the mouthing is their excuse.  Denied.

Ellie's teacher is trying to get Ellie approved for ESY (extended school year).  This is both a good thing and yet a not-so-great thing.  Yes, I think it is good that she can get services over the summer and yet, it is only 2 hours a day, 5-6 weeks out of the entire summer.  There isn't a strong routine and again she would miss out on spending time with typical peers.  It is a viable option if we are not able to find her a more traditional preschool setting for the summer.

Currently, I have found two preschools that provide classes over the summer that would like to have Ellie in their 3-4 yo class.   I have appointments to tour each facility next week so that I can see if one of them is a good fit for her.  They both have their good points and bad points.  One is significantly cheaper with a larger student:teacher ratio, while the other one is pricier, has less students per teacher, but has a long waiting list.  

I am hoping to have something lined up for her this spring.  Ellie needs some type of program to keep her active, engaged with other children, and to help reduce her risk for regression.  

Tonsillectomy and Adenoidectomy Recovery Strategies for Children

*I apologize in advance for some missing photos - I used Photobucket for free as a means to store my photos and they are now holding a few hundred pics of mine for hostage unless I pay for an expensive plan and I also managed to lose half my photos from my computer*

A few months ago I wrote the world's longest Facebook message to a dear blogging friend of mine whose adorable rockstar little boy (Super Joe!) was getting ready to undergo a Tonsillectomy and Adenoidectomy.  Seeing as Ellie recently went through her upper airway carving surgery back in April and my prior background as working as an ENT nurse practitioner, she thought I might have some good tips.  Well, I don't know if they are good are not, but here they are. . .graciously reposted from her blog post on Cowgirl Up! Seriously, check out her blog.

As with anything I write here, this does NOT substitute medical advice given to you by your child's health care provider.  If you have any questions, please contact your child's doctor.

"this surgery will be a breeze!"

Tonsillectomy and Adenoidectomy Recovery Strategies for Children with Down Syndrome

1. The pain varies from individual to individual. It depends on how "attached" the tonsils are to the throat. Some kids have huge wonking tonsils but they just hang by a thread. Other kids have smaller ones (or large ones) but they are firmly adhered to the throat by a whole lot of tissue. You will not know for sure how attached they are until the surgeon actually removes them. As in, you cannot tell just by looking into the throat. . .

This is why some kiddos are bouncing off the walls two days later and why others (like my kiddo) moaned and groaned and laid around.

2. Hospitals have different rules around the US. Bear deserted (had low oxygen levels) a lot during sleepy time. 79-88%. She got to have some oxygen on over night. Surprisingly, they let her go home. It was up to the doctor and the thought was Bear was oxygenating low pre-surgery (due to obstruction from her honking tonsils and crusty adenoid) so let the poor kid recover at home. At CHOP, kids have to be satting at 95% without oxygen even when asleep. This can lead to living in the hospital for a few days. Honestly, if we had been at CHOP, we would still be there. . . okay I am exaggerating, but we would have been there a few days at least going bonkers. My advice is to charge the iPad, bring the charger, bring spare clothes because you just do not know how long you will be camping out. 

She is watching Signing Time on the iPad.  It was the only way we could keep the IV in and the electrodes on.

3. The more hydrated the child is, the easier the recovery.

When the surgeon removes the tonsils and the adenoid, scabs will form. Keeping those scabs moist decreases pain. Hydration also prevents trips to the ER due to dehydration. Fluids include semi-solids too--think ice cream and apple sauce. I had the Bear chugging apple sauce because she wouldn't drink anything else. STRAWS--okay some docs say no to straws after T and A while others say no restrictions. (just as some say they can go to therapies when feeling better while others say no for 2 weeks).

4. The 5-10 Day Mark:

As with any scab, it will fall off--this occurs 5-10 days post op. When the scabs fall off, it hurts and there is a risk for bleeding. This why children often need an increase in pain meds. That being said, some kids are running around like wild banshees and you would never know that the scabs fell off.

With Ellie, on day 6 she slept. A LOT. I think she was only up for 6 hours total. She also wouldn't drink. That was the only day she would not drink. That was the day she lost most of her scabs. She lost the remainder of the scabs after week 3 and I didn't even notice.

5. MUCUS or SNOT or DROOL or all of the above

It will be thick. Really thick. And copious. Surgery is surgery and as you already know, cutting into tissues is trauma and trauma leads to swelling and fluids. Expect to see some snot for several weeks post-op. Expect to hear some snoring as well--remember the swelling.

6. Don't forget the iPad and spare clothes. A few sets.

Yes, I have mentioned this already, but it is important! You know what is fun? Post op emesis (vomiting). What is even more fun is dried blood post-op emesis. Right after you change into the bedtime clothes. Bring several shirts. Between the ice cream, the snot, the drooling, and the vomiting, you will want something semi-clean and non-smelly to sleep in. I learned this the hard way. The iPad is so that you can google everything that looks funky. Or to play Signing Time over and over and over again. 

7. This may be the most important one for pain and recovery: CHEW CHEW CHEW.

I know this sounds strange, but you want to keep the jaw, cheeks, and neck muscles loose and relaxed. Especially the neck. Tensing up will increase the pain. Relaxation helps with healing. Gummies, fruit snacks, whatever to move those muscles. I avoided all red items--red juices, red pedialyte, red gummies, red jello.

Ellie Bellie Bear's TandA posts from April:

Beauty Sleep: Tonsils, Adenoids, and Ear Tubes-Obstructive Sleep Apnea and Chronic Sinusitis

A Somewhat Rough Recovery-tonsil and adenoid removal

A Few Bumps in the Road-Pnemonia 

Ellie's Confession

This Mama Bear is sad, but I recognize that I been spoiled in that Ellie has napped this many years. 

Now, when 4pm rolls around, who wants to take over watching overtired, cranky Bear?  Any takers?

Even if I provide free coffee?

What about access to unlimited episodes for Sofia the First?

An Ellie Doll for Ellie: Extra Special Dolls

A few months ago, I wrote about a very small, Kickstarter business called Dolls for Downs.  A few years ago, after perusing a catalog of American Girl dolls, Hannah woefully stated that none of the dolls looked like her. This was the start of one woman's dream.  A dream to create a doll for her daughter Hannah who has Down syndrome.  A doll that resembles her.  This dream became bigger and expanded to create dolls for boys and girls of various hair colors, eye colors, and ethnicity while displaying some of the physiological characteristics common among people with Down syndrome such as the almond-shaped eyes, a sandal gap toe, simian hand crease, and even a heart surgery scar upon request.  Her left hand signs "I love you" in American Sign Language.

This is the Ellie doll.  You can order one with or without a heart scar.

Years of work were poured into this enterprise.  To make this dream a reality.  Not just for her daughter Hannah, but for others like my little Ellie.  Orders came in quickly, but as with any new business, there were bumps on the road.  There were delays in production.  Problem with the painting.  Yet Connie persevered and my little girl now has her very own Ellie doll (yes, this particular doll is named Ellie) and she is beautiful.

I am receiving nothing for writing this post.  I am inspired by Connie at Dolls for Downs and I want to spread the word about these "Extra Special Dolls".  Yes, there is a learning curve as Connie navigates starting a new business, but she is putting nothing but love and hard work into this.  To help make other children happy.

These dolls are for both boys and girls.  They are not just playmates, but also therapy dolls.  Dolls to help our children develop fine motor skills.  There are full length zippers, buttons, snaps, and a buckle.  the tie "converse" shoes are adorable.

OT fine motor development: zipper, buckle, laces, snaps.  Buttons on her jacket.

Ellie upon seeing her doll exclaimed "Ba-bee" [Barbie] and immediately began brushing her hair.  At 4 years-old, Ellie doesn't see herself as different, but she immediately saw this doll as her "playmate", her little buddy".

These dolls are 18 inches and the American Girl Doll dresses also fit these dolls.  The shoes however, will not fit your Extra Special Dolls.  Glasses and AFOs as well as Cardio Surgical scars are also available.

To learn more please visit:

The Dolls for Downs Facebook Page

The Extra Special Dolls Website

Our State of Affairs, the Holidays, and her Royal Ellie-ness

In true Anxious Anna form, I started to feel the time crunch about the 2nd  1st week of December. I tend to live in a perpetual state of stress, but like so many others, the Holidays do me in. I then did the unthinkable.   I wrote an email to my family explaining the State of Affairs in the Theurer Household.  It looked like this:

Hi everyone!

First off, we are super excited that the family will be together this Holiday season!  Our tree is up and only the bottom half of the lights are working.  I am hounding Andrew to remedy this catastrophe as soon as possible.  I have our snowman mugs out and ready for coffee and tea.  And hot chocolate!  Today I will be wrapping the gifts.  Do not be alarmed by the shoddy wrapping job.  I am using real tape this year and not packing tape.  You all should be relieved that pocket knives will not be required to open gifts this year :)  

Now onto the important matter. . . the house will not be clean.  I have 5 excuses:

I have 2 cats, a long-haired border collie, a rambunctious preschooler named Ellie, and a husband.  

The husband is the problem.  He doesn't put anything away.  He also brings in stuff from the garage.  Things that I don't even know the name of.  The dog herds the vacuum.  This means that as I vacuum, more hair is being shed.  It is a no-win situation.  (yes, I have tons of allergy medications on hand). The cats are relatively clean unless they are leaving me presents in the form of dead woodland creatures, but those tend to stay outside.  The preschooler. . . well, her playroom is also the guest bedroom.  Mom and Dad, not to worry, there will at least be clean sheets and the Little People shall be corralled into IKEA bins.  As for the guest bath. . . well, it seems to be the bathroom that everyone uses.  Including the dog.  And the cats.  You see, when ever Ellie and I enter the bathroom, the fur babies seem to think they need to follow us in there.  I suppose they are supervising Ellie's potty training efforts.  I am cleaning today.  The house will probably remain clean for about 3 hours.  I am apologizing in advance for the hurricane that has gone through the bathroom.  The important thing is that there will be toilet paper and clean towels.  And hot water.

M and A, you get the best deal of all. . . your own SOUND PROOF space.  In fact, I may be joining you during your stay to escape the madness.  Just kidding!  The chairs in the room recline so if you want to sleep on those, Matt, that would be fine or we can lay out my sleeping bag.  Think of it as camping! Please ignore the dining room/office/storage facility that you see when you first walk into the "in-law" suite.  It is a multipurpose room and it is best to just ignore it.  

......... [a bunch of private stuff not for blogging eyes]...........

We are going to X prior to everyone's visit.  This is why I am cleaning now.  We do not drive back until Christmas Day.  This is a 4 hour drive.  It isn't horrendous, but I will not be cleaning on Christmas Day.  So, this is why I am cleaning now! This also leads me to. . . 

. . . our lack of groceries!  If we buy them before our X trip, they will go bad.  The stores are closed on Christmas Day.  This means I will be out scavenging for food on the 26th.  I know that it will be your first full day in town, M and A.  It also means that we will be feasting on donuts that morning for breakfast.  Yum!  

I think that I covered everything.  Hopefully, you all will enjoy your visit.  I know that we are very happy to have everyone under one roof :)

Love you all,

Anna

--

I confessed my shortcomings and the thing is, I actually followed what I wrote.  I didn't clean.  Sure I laid out clean sheets and towels. Yes, the bathrooms got a quick swipe, but that was it.  I didn't even try to be superwoman. I let it all go. Instead, I focused on the important things like this:

My Snuggle-licious Husband

Check out Sophie Dog photobombing on the left.  See those fangs?  The Princess Puppy brought that frisbee through the dog door.  Apparently opening gifts = fetch time

Family Traditions

Left: Ellie with Grandma Dunja.  Yes, she is wielding a heavy meat mallet to make schnitzel
Right: Ellie with Awa Grandma helping herself to the flour for our annual sugar cookie baking.

I enjoy building up Ellie's immunity against salmonella

Prime Rib

Isn't it beautiful?  It was quite delicious.

Presents. . . just kidding!  It isn't about the presents, but I did enjoy watching Ellie's little face light up.

Did I mention Family?

My brother Matt who is Ellie's most favorite person.  She said "Un-Cah" [uncle].  Amber is my future SIL!  She is fabulous, but I forgot to ask permission to share her photo with the world.  She is as friendly as she is gorgeous.  Matt is very lucky :)

Ellie, Papa C, and my beautiful niece H

The Christmas cards are still sitting on my desk.  I actually ordered them on-time and then ran into a stamp problem.  As in I didn't buy enough stamps.  Seeing as the post office in December elicits panic attacks from me, I never rectified the problem. I apologize to you all who didn't get an actual card from us this year!  The laundry is threatening to take over the master bedroom and little pieces of wrapping paper are still littering the already dusty, fur-covered floor.  Yet, I am going to sit down with a cup of coffee, a little bit of Christmas chocolate, and snuggle with my loved ones . . . while staring at a half-lit Christmas tree.  

Three Generations of love.

My 4 legged children--Sophie, Tama, and Amelie

We are wishing you all a very happy, safe, productive, healthy 2014!