Patterns

Four days after completing our last round of steriods and antiobiotics.....we're back on! Thank goodness both come grape flavored and I can semi-hide them in his formula. I just hope we all get some sleep and Stanton's nasty chest cough is cleared up before Tuesday. We fly to Cincinnati on Tuesday for a few days of testing at the Children's Hospital. Stanton has only been sick about 4 times since we were last in Cincinnati (November):


1. Thanksgiving - ate 3/4 of a scrambled egg then became congested and went downhill quickly that day. This episode required breathing treatments and steroid shots.
2. January 6 – ate for the behavior psychologist. Vomiting began about 4 hours later
3. January 21 – ate at Piccadilly. Had about 2 spoonfuls of corn, half my portion of carrot soufflé and 4 bites of jello. Became very congested that night and vomiting began the following day. This turned into aspiration pneumonia.
4. February 8 – ate well at speech therapy. Vomiting began three hours later. Wheezing began the following day. Back on steroids.
Does anyone else see a pattern here? Each serious illness begins with EATING. Stanton has the desire to try and taste and eat…then he severely pays for this choice. I’m looking forward to sharing this information with the team in Cincinnati. Maybe a light bulb will turn on in one of their minds…

We will meet with an allergist who works on the aero-digestive disorders team and Stanton will undergo full allergy testing. We'll meet with a geneticist who also works on the team and she will review all the testing we've done thus far. I'm hoping she gives us some good insight about our most recent metabolic results. Stanton is then scheduled to undergo a nuclear medicine test for delayed gastric emptying. We'll wrap everything up by meeting with the gastroenterologist and feeding team again.

I'm looking forward to the trip, although it will be tough on Stanton. I just hope it brings us one step closer (okay, maybe like five steps closer) to an answer!

Happy Valentine's Day!



There are so many things to update!  I'm sorry it's been a couple of weeks since my last post. We've been swimming in paperwork trying to follow up with the genetic recommendations.  Stanton's latest genetic lab work showed abnormalities in his plasma, carnatine, enzyme, organic acids and fatty acid levels.  The report suggested we see someone who specializes in metabolic disorders.  The referral to the bio-metabolic genetic clinic at Tulane University was finally sent over yesterday.  After calling and calling and getting no where, John faxed all 41 pages of the genetic report to our pediatrician.  That seemed to get the office's attention!  Tulane is to call us for the appointment.....so we're just waiting.
 
Stanton finished his round of antibiotics this past Sunday after aspirated a couple of weeks ago.  And now is sick again!  However, this latest episode didn't end up in his lungs....thank goodness.  He just looks like he has really bad sinus/allergy gunk.  His eyes are bloodshot, puffy and watery; his nose is constantly running clear and he's sneezing and coughing his head off.  He's pretty miserable.  I took him to the doctor this morning just to be sure all was okay - and she said to just give him Zyrtec. 

We leave next week for Cincinnati Children's Hospital for a week full of tests.  I hope Stanton is in better health before we board the plane!  I'm also hopeful for some real treatment options.  We've been giving Stanton the medication for delayed gastric emptying and I just can't say I've seen a real difference.  Thank you all so much for your encouragement and prayers as we continue down this winding road!
~Ginger

Evaluations and Tests and Results, Oh My!

The last two weeks have been very full! Stanton and I toured the Children’s Center. This is a school for children with developmental delays in Hattiesburg. It sits on the campus of the University of Southern Mississippi. Our behavior psychologist works here a couple days a week and she connected us to the center. It’s beautiful and filled with amazing therapists and families. Stanton apparently felt right at home as he independently charged off down the hallway peeking in windows and doors. He announced that he wanted to go to school! In order for Stanton to attend this special school, he must be released from our local school district. This is where it could get sticky.

Last Friday I took Stanton to his public school eligibility evaluation. This is a standard process for kids who are receiving early intervention services as early intervention stops at age three and the public school picks up services at age three. Stanton qualifies for special education as he showed delays in motor skills, self-help skills and articulation. However, he tested very high in cognitive skills and vocabulary! Very proud of this accomplishment. Once the official evaluation is all typed up, we will be called to meet for an IEP (Individual Education Plan). The IEP sets goals and expectations for the school year. I think this is where the Children’s Center enters the picture as a placement option….but I’m really not clear about this yet.

Stanton also had a swallow study. We’ve been practicing for this for a good two months! Our sweet speech therapist has even taken Stanton over to radiology and let him look around and get comfortable with all the computers and equipment. He did GREAT! He sat in a chair all by himself and licked all the foods offered with Barium mixed on them. It really was just perfect. And – his swallow is normal. He has a slight hesitation with solids, but the therapist feels this is more a developmental delay than a swallowing issue.

Last Saturday night, Stanton had a pretty bad reflux episode and aspirated. So, this week we’ve been dealing with that fall out. His whole little body just shuts down. So, he’s back on mega doses of antibiotics and steroids. Thank goodness for grape flavored medication and dissolvable steroids!

Today our geneticists personally called. When I realized it was the doctor himself, I became immediately nervous. I’m learning that if it’s nothing serious, a nurse calls to relay the information…but if the doctor calls – it means something is up. Dr. Martinez explained that Stanton’s genetic lab work drawn in December returned abnormal again; both his urine samples and his blood work. The abnormalities appear in metabolic areas including fatty acids, organic acids and carnitine levels. He said that he would like for us to see a metabolic geneticists as they specialize in metabolic genetic disorders. He feels that Stanton fits the profile, but metabolic disorders are outside of his area of expertise. Because it’s Friday, the referral and process will begin next week.

One side of my brain is thrilled and excited to have a possible answer – hope for treatment and a real diagnosis. The other side of my brain knows that this could change everything and a metabolic disorder is not something one outgrows. My mother’s heart is deeply torn; full of questions; grieving the unknown; contemplating what future a possible metabolic disorder diagnosis holds for her son. Jeremiah 29:11 promises God’s plan for a future and for now, I must cling to that promise.



Ophthalmology Report

Stanton had his ophthalmology appointment today and was diagnosed with DVD, “Dissociated Vertical Divergence.” It’s an ocular motor disorder where one eye drifts up when the other eye fixes on a target. In Stanton’s case, his right eye drifts occasionally during the day, usually when looking at books or watching TV. When he’s tired, it’s much more obvious. To me, it looks as if his right eye just turns off or glazes over. I can tell he’s not using it.

What I’m learning about DVD is that the eye itself has normal vision, the eyes just don’t work together as a team. This condition becomes noticeable in children between 2 – 3 years old. Children who undergo eye muscle surgery early in life, particularly for esotropia, may develop DVD later. This is EXACTLY our situation. Stanton had eye muscle surgery for esotropia when he was 10 months old. However, I don’t remember anyone ever mentioning DVD as a possibility then. From what I understand, when Stanton’s right eye drifts or “turns off,” his visual system blocks the vision in that eye, so he becomes “one-eyed,” only using his left eye during those moments. Our ophthalmologist said that eye patching and glasses aren’t treatment options, as they work to strengthen vision. DVD isn’t an eye vision issue. Stanton’s vision tests normal, it’s just his eye muscles that aren’t working properly. Surgery is the only real treatment. This would be a second eye muscle surgery on an entirely separate group of eye muscles than his esotropia repair surgery. The ophthalmologist suggested we wait 6 months before making a decision. He said if the DVD begins to happen more often, or if we notice Stanton’s eye getting “stuck” frequently, we should schedule the surgery. However, if the DVD stays as it is, he doesn’t recommend surgery.

So, we’ll just have to wait and see for now. I do know that DVD is affecting his vision since his system is blocking the eye….and that does worry me. When I close one eye to see what it might feel like, my perception of what’s around me is obviously different. When I try to walk with one eye closed, my balance seems off and I feel hesitant and clumsy. When walking somewhere unfamiliar or in a crowd, Stanton prefers to be held rather than hold hands….and now I can understand why. I am reminded of 2nd Corinthians 5:7, “For we live by faith, not by sight”

Options

Don’t you just love it when well meaning people say “Kids will eat when they’re hungry”? Well, for children with severe feeding aversions and underlying medical issues, that simply isn’t true. I’m learning that pushing food on Stanton doesn’t work. Bribing him doesn’t work. Distracting him works for the moment, but leads to all out vomiting wars later in the day. Giving Stanton a food that is completely outside of his tolerance zone absolutely doesn’t work.

Think about it…do you eat food you hate? Have you ever stepped back inside a restaurant that made you sick? What would you do if a waitress sat down with you and counted your bites? Do you swallow food when someone instructs you to "swallow"? Do you want to try a new food the same day you get over the stomach bug? So, why some people think this will work and really “cure” Stanton is beyond my understanding. How can you do these things to a child and expect them to eat?

Thankfully I now have a team of therapists who understand this and are wonderful with Stanton! It’s taken a LONG time…but I can say with joy….I love our therapists! Stanton really has made such progress in so many areas. He is really turning into a fun little boy.

Tomorrow we are going to see the Children’s Center. This is a school for 0-5 year olds with developmental delays in Hattiesburg, MS (about an hour north of us). They are on the campus of the University of Southern Mississippi. Each classroom is lead by a speech therapist. Our behavior psychologist consults with this school and has pulled some strings to get us a tour. Next Friday, January 21, Stanton will be evaluated by our local public school district. He’s been receiving services through early intervention, but those services end with his 3rd birthday. So, we’re spending the next few weeks looking at school choices for Stanton. It’s nice to know we have a couple of resources and a possible choice.

On Friday, Stanton goes back to see the ophthalmologist. He had eye surgery when he was just 10 months old. His right eye is just not working….I notice Stanton rubbing it and poking at it a lot. He says it’s “fuzzy.” Sometimes this right eye just glazes over and I can tell he’s not using it. I’m not sure what the doctor will say or do – but I’ll post when I know something.

Ginger

In or Out?

Stanton has the opportunity to work with Dr. Bellipanni, an amazing pediatric behavior psychologist in Hattiesburg, MS. Now that we’ve found her, we’ve spent the last two weeks trying to get our insurance to approve her as a provider. Last week our insurance said she could be an “out of network” provider, but when Dr. Bellipanni tried to submit a claim, our insurance company said the claim had to be filed electronically through their system and the only way to have access to the system was to be an in-network provider. Yeah…..hmmmmm……doesn’t make a bit of sense does it! Well, John, being the Personnel Director of our county, asked his insurance risk manager to help out. Stanton had a scheduled appointment with Dr. Bellipanni today at 11:30. She let us know last night that she still didn’t have anything worked out. John went into his office today and, I’ll just say, made it happen! Within a matter of 30 minutes, he got Dr. Bellipanni approved as an in-network provider, with permission to fax in claims. The insurance company also agreed to waive any costs to us associated with rates being considered over and beyond their usual and customary rate. What a huge relief for our family! We are in the thick of finally creating a knowledgeable team around Stanton and I’m not about to let red-tape, politics, finances or insurance get in the way! John says I’m just in “Mama Bear” mode. I’m just glad to have our insurance “IN” the game and Dr. Bellipanni approved as an “IN” network provider!

Stanton ate a variety of things today. We first had speech therapy where we are working on finding white things for him to eat. Cincinnati Children’s wants us to have a swallow study before going back in February. The barium Stanton needs to ingest for this test is white – so our speech therapist, Amy, is working on preparing him to lick and eat white things that we hope to hide the barium in. Today Stanton seemed to enjoy eating the cream out of two Oreo cookies! We then had our behavior psychology appointment in Hattiesburg. Dr. Bellipanni asked me to bring five foods, each in their own container and his portable DVD player with some favorite movies he hasn’t watched all week. I took Stanton’s favorite snack – sweet potato puffs. I also took some toast and almond butter as he ate an entire piece of this for me on Monday at our first ever breakfast experience!
I packed a Chick-fil-a nugget and something he’s never even touched or licked for me = applesauce. And I had some extra Oreo cookies left over from speech.

Initially Stanton did great. He started with a small triangle of toast with almond butter. He only needed one reminder to eat while watching tv. He also did great with the puffs. He refused the Oreos, but when given a choice, took a big bite of the chicken nugget. It took him quite a while to chew and swallow it...but he did! The meltdown came when Dr. Bellipanni opened the applesauce. He turned into a noodle and slid out of his chair. She gave him a break, letting him play with cars. After a while he sat at a different table with blocks. Once he was playing, she put the open container of applesauce on the table. Stanton began to cry and said “move it, move it” over and over. Dr. Bellipanni calmly reassured him he didn’t have to eat it and explained she would move the applesauce after counting to ten. Amazingly, Stanton agreed and helped count. He was rewarded with a movie. This process continued throughout the remainder of our session, each time, moving the applesauce closer, eventually touching the container to Stanton’s check as they counted to 10.

For today, here’s what went IN: ¼ piece of toast with almond butter, 2 creams from Oreos, one bite of a chicken nugget and 6 puffs.


It all came OUT around 5:45.


Disappointment


     Stanton all upset


          Showers for everyone


               Paper towels in a huge mound


                    Laundry


Thankful it’s trash night

For everything there is a season, and a time for every matter under heaven:

a time to be born, and a time to die;

a time to plant, and a time to pluck up what is planted;

a time to kill, and a time to heal;

a time to break down, and a time to build up;

a time to weep, and a time to laugh;

a time to mourn, and a time to dance;

a time to throw away stones, and a time to gather stones together;

a time to embrace, and a time to refrain from embracing;

a time to seek, and a time to lose;

a time to keep, and a time to throw away;

a time to tear, and a time to sew;

a time to keep silence, and a time to speak;

a time to love, and a time to hate;

a time for war, and a time for peace.

—Ecclesiastes 3:1-8



We pray for Stanton's healing in 2011