Cheese Please

We tried a slice of real cheese yesterday....

...Stanton ate it with 1/4 of a scrambled egg and appeared to enjoy it!  However, we've been dealing with the aftermath ever since.  All of his diapers have been blow outs.  Last night he got on the floor in fetal position and cried for about 20 minutes, then finally had a bad diaper.  The dairy really upset his little system.  Today I'm also noticing some strange behaviors including lack of attention, inability to remain still, and some self stemming behaviors spinning toys (something I've NEVER seen him do).  Stanton's speech therapist noticed this in therapy this morning too and asked what we'd done differently.  All we've done is try the cheese. 

So, for now, we will continue to stay dairy free!

Ginger

Stanton LOVED flying and made friends with all the flight attendants! He was most intrigued with the “what to do in an emergency” pamphlet. The flight attendants really got a kick out of watching him study it for the entire flight. They gave us a copy to keep when we landed in Cincinnati.

Our first appointment was with the Allergist on Wednesday. We spent the first hour talking about Stanton and his symptoms. (He eats, then gets sick 3 – 4 hours later.) They were very thorough and supportive. A child life specialist came in and showed Stanton what the skin testing would look like and had him give a few pricks to a doll. She brought in lots of fun toys to keep him occupied. The testing went amazingly well. Stanton cooperated and didn’t cry until the last three pricks.

All of the testing returned negative for allergies! Keep in mind that a milk protein intolerance is not something that shows up in allergy testing….and this is something the team feels that Stanton has. But – the allergist said we can feel safe offering Stanton a variety of foods.

We had to be at the hospital early Thursday morning for Stanton’s delayed gastric emptying scan. He couldn’t eat or drink anything before the test so we just let him sleep late and took him to the hospital in his pjs. Stanton drank about 2 ounces of his formula mixed with a nuclear ion. Then he had to stay still on his back for an hour. Cincinnati Children’s is super child centered! To keep Stanton still on the table, they put a towel over his stomach and a sandbag on each side of him. He could have gotten up if he wanted, but the towel served as a reminder to stay still.

A child life specialist came right in with movies, light up toys, flashlights and glow in the dark toys. Each time Stanton became restless, she pulled something new out. He actually stayed on his back for the entire hour without complaining! The machine took pictures of his stomach every 30 seconds. Stanton passed the scan by emptying exactly 60% of his stomach’s contents....the minimum but just enough! The GI said that this proves the erythromycin is working.

After the scan we headed upstairs and met with the feeding team. Each member of the team comes in one at a time – then everyone meets together and comes up with a plan of action. The gastroenterologist comes in last with the recommendations and basically wraps up everyone’s opinions. We saw a speech therapist, an occupational therapist, a behavior therapist, a dietician, a geneticist, a nurse, and the gastroenterologist. The therapists seemed pleased with Stanton’s current therapy schedule and the things we are working on. They said he’s really made quite a lot of progress since we were there in November. The therapists watched him take bites, refuse foods and drink from a variety of containers (cup, sippy cup, straw, bottle). The only concern raised was the issue of Stanton protecting his airway when drinking/eating. Every time he finishes his bottle he starts really coughing and sounds congested for about 5 minutes. He also does this if he eats a good portion of solid food. They were disappointed that the swallow study we had done locally only showed his swallow (which is what I thought it was supposed to show). They explained that when they do swallow studies they also wait about 10 minutes after the child drinks/eats to watch the airway’s response.

The dietician was satisfied to see that Stanton’s weight has remained steady since November. I asked if we should decrease the amount of formula Stanton is drinking to encourage him to eat more solid foods and she said NO quite emphatically. She recommended that we continue giving 32 oz. of Elecare a day (his medical formula) as that’s full of vitamins and nutrition. He isn’t eating a variety of fruits or vegetables yet so the formula is what his body is thriving on. She encouraged us to keep our routine of offering small snacks at the table – but to add more variety to what we offer. For example, since one of Stanton’s accepted foods is peanut butter, try offering peanut butter on a banana or an apple slice.

The geneticist came in next. She said that all of the abnormalities that returned on Stanton’s last genetic testing are just indicators that he is on the formula Elecare. She looked at Stanton and played with him and commented that he does have hypotonia (low muscle tone) which is the culprit behind his eye issues, tongue issues, gross motor delays and stomach emptying issues. She said she didn’t feel there was a genetic issue and that we should stop pursuing anymore genetic testing. That was great to hear!

Finally Dr. Pentiuk, the gastroenterologist, came in. He said we were doing everything right and that this feeding monster is a slow and steady process. He felt like we are making some real progress. He recommended we increase Stanton’s erythromycin dose, which treats delayed gastric emptying, and see if solids stay down better over the next 3 months. If not, there is a surgery that we can come back for where he would expand the bottom of Stanton’s stomach and botex the stomach muscles. He also recommended that if we come back for the surgery, he’d like to redo the swallow study and also do a FEES, a fiber optic airway exam. Both of these tests would look at his airway while eating.

So, for now, we are back home and waiting. We will continue pushing in therapy, offering foods and just waiting for the day Stanton decides to eat and keep it down!

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