Eat Happy!

Eat Happy!

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Ian's Story

As I look back to tell Ian’s story, I discover that a novel wouldn’t be enough to cover the events of his life.... and he’s only two. But, I feel his story is one that is unique and controversial in so many ways. It needs to be shared for parents, children, and families who are discovering their child might not fit into traditional medical practices as they exist today. Ian’s story is one of growth, dead ends, trials, times of peace, and never ending patience. If any of you have questions or are curious about the events of Ian’s life, please feel free to contact me through my email: flosskat@gmail.com

At 20 weeks pregnant, Ian was not measuring gestationally as he should. Over the weeks, the doctors monitored him closely. At 28 weeks things headed downhill quickly. Upon reaching 29 weeks, I was diagnosed with severe levels of HELLP syndrome. This syndrome entails death of red blood cells by intoxication, elevated liver enzymes, and deathly low platelet counts. HELLP syndrome is a severe form of Eclampsia. Many of us are familiar with Preeclampsia. Eclampsia develops after preeclampsia, and HELLP syndrome develops as eclampsia becomes severe and life threatening. Many pregnant mothers are able to be “saved” early during preeclampsia to prevent further complications. HELLP is unique because it skips through so many stages and progressing very rapidly, with hours.

SEPTEMBER 2010

Ian was delivered via emergency cesarian at 29 weeks, 1 day. I had not quite yet reached the 7 month mark in my pregnancy. I received general anesthesia due to risk of bleeding to death on the table from placing an epidural. I was alone, as husband are not allowed in ORs during general anesthesia procedures. Thankfully, everything went well and I survived the delivery and the surgery. My body bounced back successfully, although a large number of mothers do not.

Upon waking, I was alone with Tom in recovery. Ian was in the NICU. While having great Apgar assessment scores at birth, Ian stop breathing shortly after and was rushed to the NICU for ventilation. It was +36 hours before I would be able to see Ian. As Tom and our families visited with Ian, I remained in labor and delivery connected to many machines monitoring my levels and one in particular dripping magnesium into my body to prevent seizures.

When I finally visited Ian, he was hooked to so many machines and monitors. He had gauze everywhere and was covered with leads. I was not able to hold him, but could reach through and touch him. We could not rub or stroke his head or hands. Preemies have very paper thin skin which is easily very overstimulated. In my personal opinion, Ian did not look like a “baby” in the traditional sense of the word. Everyone has their own medical lingo opinion, but to me, Ian looked like a fetus. At 2 pounds 1 ounce, he had no fat...... no cheeks, no belly, no butt cheeks of any kind. There was also no hair, no eyelashes, and no protection.

The NICU trip brought ups and downs, but Ian thrived and did very well. Surprisingly, at 35 weeks of gestational age, after only 6 weeks in the NICU, Ian came home. He weighed 3 pounds and 14 ounces. He had no monitors and no oxygen. We were home as a family.

OCTOBER 2010

A week after Ian arrived home, the ride began. Ian suffered from severe GERD which was unable to be managed with maximum medical therapy. After Zantac, Prevacid, and numerous lifestyle and environmental changes, Ian could not wait any longer. He was spitting up 30-40 times a day. After an Upper GI Series and some reflux testing, we decided to try Erythromycin, which at low levels is a motility medication. Ian responded to the motility medication well and we almost ceased spitting up for 6 months. During this peaceful time, Ian began solids slightly early to help “weigh the food down” in his belly. This worked for a while, but as time went on, the “richness,” or osmolarity of the food started churning things up and causing issues. (Think eating a large piece of flourless chocolate waffle dessert instead of a piece of Angel food cake the same size).

Around Halloween, Ian needed an inguinal hernia repair. After pushing the hernia back in three times over a week, and numerous times before, Children’s National Medical Center in Washington, DC decided to do the surgery. At four pounds, Ian had his first surgery and the hernia was never a problem again. We were lucky enough to have the head surgeon and there were no complications.

JUNE 2011

At 9 months of age, the vomiting began. Shortly after, we traveled to Johns Hopkins in Baltimore, MD for a consultation with GI. After confirming severe GERD from a ph impedance probe study, and ruling out allergies from an endoscopy, slight medication dosages were changed. This did nothing for Ian.

AUGUST 2011

Ian began feeding therapy services at INOVA hospital’s Pediatric Rehabilitation Center late that summer. The therapist diagnosed him with Oral Sensory/ Feeding Aversion and Dysphagia. She worked with Ian on skills which included placing food into the mouth, rubbing the cheeks, chewing, and even some swallowing. Ian had never never had an official swallow study done at this time. We visited her weekly until the upcoming hospital trip and surgery.

Around the same time, Ian was diagnosed with Sensory Integration dysfunction. Ian’s body was not interpreting feedback from the senses correctly. His body was finding this “dangerous” that weren’t. His body was acting defensive. Essentially, Ian was over-responding to stimuli in his environment. Fortunately, Ian’s issues were limited to tactile and taste. Visual and audible stimuli were not a problem. Later on, we would find out that the tactile would extend to movements and pain thresholds.

The rehabilitation clinic found patch testing results positive for food allergies. After eliminating these foods, there was no change. We gradually reintroduced them into Ian’s diet and saw no negative effects. The incidence of food allergies had been eliminated. Future endoscopies also eliminated this possibility.

SEPTEMBER 2011

Ian progressed from vomiting to projectile vomiting within weeks. By his first birthday in September 2011, Ian had fallen off of the growth chart..... which he had barely been on in the first place. He was diagnosed with Failure to Thrive. After vomiting everything but 3 ounces of food over an entire weekend, Ian displayed symptoms of severe dehydration and hypoglycemia. He was rushed to the hospital in Fairfax, Virginia a few days after his birthday.

Ian was admitted right away and they quickly began testing. Since Ian had decided to hunger strike (wouldn’t you if you spent over a year vomiting everything you ate everyday for a whole year?), a tube was placed through his nose to supply nutrition. The endoscopy showed no signs of anything, other than erosions form reflux. Tom and I knew deep down that a fundoplication and gastrostomy (G) tube surgery were coming down the pike fast. Only trouble was, GI doctors hate doing these and like to keep patients in their care, instead of a surgeon’s guidance.

After a few days of tests and trials (endoscopy, radiographs, swallow study, etc.), and a surgical consult, the fundoplication reflux wrap surgery and a G tube were completed. The fundoplication helps keep food and fluids in the belly and stops reflux. Ian’s G tube would be used to feed him since oral feeding had ceased at his will. The surgeon warned us that the wrap would cease the reflux only and underlying issues, if present, would still remain.

OCTOBER 2011

Everything seemed great for another week after we arrived home. Ian would eat some by mouth, and we were slowly pouring gravity feedings through the tube and into his belly. Ian’s body quickly started rejected these meals. We tried slowing down the feedings, and even pushed them slowly with a syringe, instead of pouring. this did not help. Ian’s body rejected the meals by retching, or dry heaving. Since his body could not tolerate the meal, he was trying to vomit. Only trouble is, after a fundoplication, until time passes, it is practically impossible to vomit...... that’s the point. The retching episodes, as we came to call them, became more and more frequent. Watching a child try to vomit unproductively for minutes at a time, multiple times a day is horrific. Drenched in sweat, tears, and completely red in the face, we knew something was wrong.

NOVEMBER 2011

In an effort to give Ian more natural foods to help cease the retching, we began Ian on a blenderized diet. We invested in a Vitamix blender and away we went. While we were able to give Ian lots of healthy things, and better food for him, it did not help his retching. We consulted with many families and clinicians. A few of Ian’s doctors are large fans of blenderized diets. It seemed that Ian had other underlying problems that the blenderized diet was not addressing.

After seeing so many GI doctors and pediatricians who were not able to help us with this “rare and severe” cased child, we decided new doctors were most certainly in order. We scheduled a GI appointment with The Children’s Hospital of Philadelphia (CHOP) for November 2011. The GI doctors at CHOP had wonderful Dietitians working with them who together, were able to tweak his food and routine to help accommodate Ian’s issues. This again, did not help Ian.

Around Thanksgiving of that year, Ian vomited, big time, right through the wrap. We knew this was not a good thing. We called CHOP’s GI department, who quickly referred us to surgery. Tom and I knew we did not want to return Ian to Fairfax’s GI and surgical doctors. We took a shot in the dark and called the surgery department at CHOP. They saw Ian right away and were able to get us an appointment with the GERD clinic. Surprisingly, an amazing surgeon runs a clinic at CHOP specifically for children like Ian.

DECEMBER 2011

They helped get Ian through the holidays purely by reviewing his chart and making phone calls. After Thanksgiving, we visited the clinic. This appointment was as eye opening as it gets. Forget the feeling of opening a window, this was like moving to a new world. They diagnosed him with Post-Prandial Hypoglycemia, a low blood sugar condition that occurs in very few cases after gastric surgeries. This is also called late dumping syndrome and effects the way the stomach empties, and the way insulin and glucose uptake respond. Severe hypoglycemia causes vomiting and nausea...... which was leading to some of the retching.

Also, Ian was diagnosed with vagus nerve hypersensitivity. The vagus nerve is a cranial nerve that runs almost the entire length of the body. It innervates multiple organs and is responsible for many “fight or flight” and “rest and relax” activities. Within Ian’s esophageal area, he was responding to very low stimuli, causing exaggerated reactions. Ian would cough, choke, gag, retch, or vomit at the slightest irritation. One of the troubles with this condition is that things like mucous bring on irritation, but irritation creates mucous. This very cyclical problem was controlled with Diphenhydramine... Benadryl OTC. This helps to reduce the gag reflex and suppresses the vomiting center in the brain.

Ian responded well to the Benadryl and the recommendations made by CHOP. They changed his food to decrease osmolarity, create longer fat and sugar chains, and give him time to do what he needed in his belly. The longer chains help keep the food in the digestive track longer (taking longer to break down). This decreases the dumping syndrome. Ironically, this also helps control gastric emptying overall, since Ian had some degree of delayed gastric emptying (Gastroparesis), despite the dumping syndrome. A gastric emptying scan the previous month confirmed this diagnosis.

We came home on 7 hour feedings, three times a day, with an hour in between each. Over time, we would extend the “off” intervals, giving Ian more free time when he could be unattached from his backpack and feeding pump. Overnight, he would remain on eight hour feedings. The recommendations form CHOP helped significantly. It wasn’t a perfect world, but perfect enough for us. Ian seemed happy and was doing well.

JANUARY 2012

As the new year arrived, Ian contracted a norovirus which set him up in the hospital three times over a 6 week period. The virus would continue to cause him trouble for months. Also in January, Ian had a severe reaction to his prescription Nasonex for sinusitis (from GERD). He had a horrific nosebleed which lead to a large amount of blood in his stomach. Since he had trouble vomiting, the blood pooled in the belly. It stemmed from a scratch in the nose, but was exacerbated by the dryness and effects from the Nasonex. After an evaluation from the paramedics, and the aspiration of half an ounce or so of blood through his G tube and into the syringe, we made a swift ambulance trip to the hospital. They were able to empty Ian’s stomach and check for G tube placement, ulcers, and tissue disruption... all of which were normal. Surprisingly, the radiographer noticed a “shadow” on Ian’s films. He mentioned it might be a hiatal hernia.

As it turns out, this was an excellent call on the radiologist’s knowledge. Hiatal hernias are by no means diagnosed by radiographs. After a trip to CHOP and another Upper Gi series, the hernia was confirmed. However, this meant Ian’s fundoplication was herniated, most likely from all the retching, prior to treatment from CHOP. Ian had been “working on” the hernia for months. The hernia was monitored and it was decided to wait as long as possible to repair since Ian was at such a young age.

APRIL 2012

The spring brought on more diarrhea and vomiting. Turns out, the norovirus had been hanging on and recking havoc. Eventually, it ran it’s course and seemed to disappear for what seems like no reason at all. Spending Easter in the hospital, confined to your room, is no fun at all. During this visit, Endocrinology also evaluated Ian. We wanted to rule out any chances of Hyperinsulinism. After visiting previously with the Metabolic Diseases and Genetics department at CHOP, we wanted a clean slate from Endo too. All tests run showed no evidence of insulin tumors or malfunctions. Thankfully, Ian has not been diagnosed with any Insulin or Metabolic disorders.

Many people will ask about Ian’s Post-Prandial Hypoglycemia issues as it relates to insulin and Diabetes. Ian does not have Diabetes. He has plenty of insulin, and it does what it is supposed to do. Diabetics cannot say this. Ian’s body simply does what it is supposed to do..... way too quickly. Although it contains some of the same sugars and hormones, it is not the same nor is it a risk factor for the other.

At the end of the month, Ian had tubes placed in his ears. While he was passing his hearing tests, Ian was having recurrent problems with infections and fluid in his ears. Ian’s fluid had accumulated over 9 months or more. It had become glue ear. Glue ear is when the chronic fluid begins to thicken and occlude the passages even more severely. The ENT also completed a laryngoscopy during the surgery. The laryngoscopy views the airway passages up until the branching of the bronchi in the lungs. Ian’s results showed erosion and irritation from reflux, confirming the existence of refluxing past the hiatal hernia.

MAY-JUNE 2012

The next month went off without a hitch and things seemed to be on the upturn. When June set in, the trouble returned. Ian was having lots of trouble with retching and discomfort. It was decided at CHOP that the time had come to repair the hernia. The surgery was scheduled for July. After the surgery, we were told that not only had Ian’s fundoplication herniated, the wrap itself had slipped down about 50% and had twisted its way around the esophagus. It’s no wonder Ian never wanted to eat or swallow.

JULY 2012

When the hernia was repaired, a Toupet wrap was done instead of the initial Nissen. While a Nissen is a 360 degree wrap of the stomach around the base of the esophagus, the Toupet is only 270 degree. This allows for reflux to be eliminated, but still give some stretch for vomiting and burping as needed. The Toupet was successfully completed and we returned home with a new feeding plan.

Another visit in July gave us lots of hope. The Children’s Hospital of Richmond has a wonderful day patient feeding therapy program. The program is 6-8 weeks long. Ian will be seeing the therapists 6-8 hours a day, 5 days a week, for 6-8 weeks. It is a behaviorally oriented feeding program. There are clinicians, doctors, feeding therapists, speech pathologists, psychologists, and other personnel who help teach these children positive feeding behaviors and techniques. There is a 6-9 month waiting list and Ian is scheduled for sometime after the turn of 2013.

Historically, Ian has always been on Peptamen Jr. since the Post-Prandial Hypoglycemia was diagnosed. After the surgical hernia repair, Ian’s body didn’t seem to tolerate the formula anymore. We had two weeks or so of retching cessation. Then it all began again. This was disappointing, since we were hoping the hernia repair would help greatly reduce the retching.

SEPTEMBER 2012

As Ian’s second birthday drew near, another trip to CHOP was in order. Over the phone changes initiated form CHOP were not helping Ian’s multiple daily retching episodes. It was decided that allergies, ENT complications from tonsils and adenoids, food intolerance, and probiotics were all causing Ian trouble. Shortly afterwards, Ian started a new formula, Compleat Pediatric. This is essentially a commercial blenderized diet in a can. Ian responded very well to the new food. We tweaked his scheduled meals a bit to allow more time during post-sleep meals. This helped reduce his retching as well.

We also spoke with Children’s Hospital of Richmond concerning Ian’s possibility of Visceral Hyperalgesia (an elevated sense of stomach and organ pain when eating and digesting). After trying Neurontin, it was discovered that Ian was not suffering from this condition. The medication did very little for him and did not seem to relieve any retching.

OCTOBER 2012

Shortly after this, Ian contracted some type of virus, croup or pneumonia are the anticipated culprits.  Ian was having coughing fits and such from the virus.  It most likely developed after the recent cold he had, since his immune system was even more compromised than usual.  As this was happening, Ian's Reactive Airway Disease (RAD), which has been in the works on paper for some time, progressed into a severe asthma attack.  At the office, a nebulizer treatment brought his pulse oxygen levels from 88 to 94... but Ian was still wheezing.  He was given an oral steroid prescription to help him through the worst of it with the swelling, sputum, and spasms.  The albuterol, flovent, flonse, and singulair simply were not doing enough.  The albuterol will now be a nebulizer when he is sick to give him more relief. When not sick, Ian's asthma is moderate and should be manageable with medications.  If colds and viruses arrive, more treatments such as these may be necessary.

Shortly afterward, Ian made a trip to the ER for a 45 minute asthmatic episode.  He was diagnosed with Bronchiolitis from an unknown virus.  This made the breathing treatments a regular thing for quite a while.  Things didn't seem to settle down before the next surgery rolled in.

The middle of the month was Ian's tonsil and adenoidectomy.  The surgery went well, but Ian's recovery was horrific.  He was at greater risk of hemorrhaging because of the retching and ended up spending a week inpatient.  Ian's previous sleep study showed severe obstructive sleep apnea and hypopnea, shallow breathing.  The surgery helped him breath in more air, more productively.  He certainly seems to be sleeping better and seems more comfortable.  He still sleeps in his ComfyLift bed and loves it!  We are glad that is behind us.  Surgery #5 is complete and we are praying it is the last.

NOVEMBER 2012

November would bring more colds and viruses.  It also meant being fitted for his SMO orthotics for hypotonia.  He received them a few days ago and they are adorable!  They come just above his ankle and help give him stability and support.  As a sensory seeking child, he also likes the pressure they provide against his feet and ankles.  The course of treatment will most likely be a year or two since it was caught very early.  The bones will shift over time into the proper placement.

The end of November was a busy trip to CHOP.  We met with the Diagnostician, Surgeon (GERD), and Endocrinologist.  The Diagnostician gave us an excellent overall picture of what was going on.  He mentioned what treatments/doctors were best for us to continually meet with, and which were best to keep on reserves, without needing regular follow-up appointments.  I must say, we were impressed.  And...... thankfully, he was much nicer than Dr. House!!

The surgeon gave us an updated feeding routine for Ian to pump up the calories in order to prepare for his feeding program trip to Richmond for eight weeks.  This begins in the new year.  We are moving right along now that we have been able to add a motility medication for Ian.  A previous recent visit to the Pulmonologist of all people...... lead to the restarting of Erythromycin.  Ian had previously had great results with the medication helping move food along.  The medication serves as a Prokinetic.  The medication has on and off periods so that tolerance does not occur.

After all the information was reviewed, the Endocrinologist agreed to begin Ian on growth hormones a little earlier than planned.  He will start in January 2013 and we are hoping that along with physical appearance growth, that they will help systemic growth to benefit is lungs, GI tract, amongst other systems.

DECEMBER 2012

This month brought another hospital admission.  After fighting off Bronchiolitis and viruses, he relapsed with RSV.  RSV can be a fatal virus in children with chronic lung diseases.  Ian was in the hospital for only five days, but needed a large amount of oxygen to keep his blood saturation within healthy limits.  We were fortunate Ian did not suffer worse consequences of the virus.

JANUARY 2013

Ian did begin speech therapy this month, with the county school system.  The speech-language pathologist is wonderful and she has been working great with Ian.  he is trying hard to say new words and sounds everyday.  Right now, we are enrolled in the Day Feeding Therapy Program at The Children's Hospital of Richmond.  it is part of the Virginia Commonwealth University system.  Ian's school speech therapy is on hold, but we work on skills everyday and he is doing extremely well.

Ian began growth hormone treatments this month.  He has nightly injections with a 32 gauge needle that is 5-6 mm long.  it is very tiny and Ian is super-duper great about it.  He even rolls up his sleeve when we tell him it is time for his "super juice."  After each nightly injection he picks out a sticker and a star sticker to place anywhere on his SUER JOB IAN sticker board.  He loves stickers!  The Endocrinologist working with him is excellent and we are looking forward to some overall growth, including maturation of his organs, especially his lungs.  He is being treated with growth hormones under the SGA/IUGR diagnosis.  he has been diagnosed as Growth Hormone "Insufficiency" as opposed to Growth Hormone "Deficiency."

The endocrinologist also has decided Ian qualifies for "stress-dosing" of steroids during illnesses.  Since Ian has mild Adrenal Insufficiency due to synthetic steroid use for pulmonary reasons, he needs an extra boost.  The cortisol helps Ian fight off infections quicker and stronger.  We used it for the first time a couple weeks ago and it made a significant difference.  He is using oral supplementation, that goes through his G-tube.  He also has an emergency injectable for serious cases.

We also visited with a very well known Small for Gestational Age- Russell Silver Syndrome doctor at Mt. Sinai in Manhattan.  She is an endocrine-genenticist.  She ruled out RSS and had some drastic opinions about Ian's care.  At this point in time, we decided not to travel the NYC for the care.  In the future, Ian's conditions may change.

While Ian was sick with RSV in December, we had some metabolic-genetic testing done.  Everything came back normal and we are watching him over time since he seems to be one of those kids with an aura of "growing into" a genetic diagnosis.  Apparently, some children don't exhibit their conditions until the grow older and they become more prevalent based on growth and environmental issues.  Tom and I don't feel this is an issue.  But it can sit on the back burner until a need arises.

On January 28th, Ian began an eight week, weekday, six hour a day feeding therapy "bootcamp."  He has three sessions/treatment meals with his therapist everyday.  They work on feeding skills, oral-motor, behavioral, and anxiety issues.  Ian has completed three weeks and is doing exceptionally well.  We are so proud of him and are even having some days where he only needs his overnight continuous feeding, and nothing via G-tube during the day.... something we thought was months or even years away!  I would highly recommend this program at Children's Hospital of Richmond, part of the Virginia Commonwealth University system.

FEBRUARY-MARCH 2013

Ian continued the day patient feeding therapy program at Children's Hospital of Richmond.  He completed the program the end of the March.  When the program was over, we moved back home to Northern Virginia.  Ian continues to see them once a week on an outpatient basis.  he is able to see the same therapist.

APRIL 2013

Ian became to decline in April.  He was vomiting with almost every meal and had about 45 retching/vomiting episodes during the month.  His normal during the program was 20 a month.  Something was clearly going wrong.  Ian had a very small cold when he returned home, but nothing significant.  Tom and I had always suspected Ian had motility issues, even though they were never confirmed in medical data.  We were also concerned about another hernia.  He was presenting the same symptoms as before.

With things progresses worse and worse each day, we took Ian to the doctor.  We did an emergency upper GI and there was some 'herniation.'  Although it really wasn't a true hernia, just a loosening fundoplication.

In addition, Ian had a followup sleep study done, 6 months after his tonsil and adenoidectomy.  His obstructive sleep apnea score decreased by 50%, but still leaves him in the moderate range.  The ENT would like us to re-eval with another study in one year.  With Ian's results and his age, he does not feel more surgical action is needed.  Phew!  He did however still have significant periodic limb movements. This was noted on the pre-surgical study as well.

Ian had some blood work done since iron levels are usually the cause of this condition.  Sure enough, while Ian's levels were within normal limits, they were very low..... and in fact, too low for the sleep medicine doctor to feel comfortable.  With Ian's sweating being so bad (and losing minerals at times) along with low iron levels and limb movements, she started Ian on iron supplements.  We now had to manage to keep his bowels happy, after all the time we spent doing that, pre-iron.  Since the iron binds up his intestines, we made a few small tweaks and it has been working fine.

MAY 2013

We ended up at The Children's Hospital of Philadelphia's emergency room because of all the vomiting.  Ian was admitted and motility testing was done.

It was confirmed that Ian had severe gastroparesis (delayed gastric emptying).  His stomach takes eight hours to empty without medical and dietary intervention.  Ian's erythromycin wasn't helping anymore, so they began him on a routine of Reglan.  Unfortunately, even thought the medicine was working beautifully, he began having tardive dyskinesia effects after 48 hours and the medications needed to be removed.  We followed up with Ian's GI doctor the following week and were able to put a plan in place to cover his GERD, motility, visceral hyperalgesia, respiratory, vagus nerve issues into check.  It took 8-9 medications, but it was working.

We also visited the endocrinologist at CHOP.  He raised Ian's growth hormones because he was growing SO WELL on them and needed an 'up-ed' dose for his weight.  Clinical genetics came to see us while we were there to do an evaluation.  Everything looks great in that department and we will followup with them in one year.

JUNE-AUGUST 2013

These have been the BEST days of Ian's life!  I cannot write that in large enough font!!  He has been happy, growing tremendously, and eating well with his therapy.  He has not had a tube meal in three months (May 18th).  He is taking all of his calories by mouth, with the exception of a few tubie supplements.  He also gets a lot of fluid via tube.  His medications are working, we have a great team, he is growing, and progressing.  There isn't much more to say about it other than we are delighted that for his third birthday (tomorrow), he is finally in the best place of his life to this day!

SEPTEMBER-OCTOBER 2013

We started potty training Ian the beginning of September, right after his third birthday.  We did the three-day program and it worked for pee-pees very well!  I was impressed.  Bowel control has been another story!  With a child as stubborn as Ian, this has been a huge challenge.  It has been enough of a challenge that we have had him hand-over-hand cleaning himself after he messes his pants.  He is totally grossed out by it, but continues.  We are making some progress now that it is October.

We visited the sleep medicine doctor in October.  Ian's ferritin iron levels have come up by ten.  It is still only 45 and she would like it to be over 100.  She did say it would take quite a while to get there.  We will repeat the blood work in the spring.

We also started giving Ian his meds by mouth.  It has been a work in progress, but he is doing very well.  We have also started giving him all of his water flushes-fluids by mouth.  he likes using a two ounce syringe.  Thankfully, the novelty has not worn off and he enjoys doing this.

NOVEMBER-DECEMBER 2013

We follow-up with the pulmonologist in November.  Ian had another bout of bronchiolitis and we did another around of two week nebulizer treatments.  Since Ian began school again in September, he has been in a petrie dish of toddler germs!

Thanks to working on meds and fluids by mouth..... Ian hasn't had any G-tube usage other than venting since December.  It is a challenge at time, but he does it.  We have been working on some flavors he likes for his meds.

We had follow up visits with the Endocrinologist and Gastroenterologist in December.  Ian's progress is moving along better than planned.  He has grown over 5 inches in the last year, and over 2.5 in the last 6 months.  We have been able to cut back on his growth hormone dosage.  In six months, we might even be able to take a 6-12 month trial without them.  Ian has caught up to his expected growth, almost to genetic potential.  His bone age radiograph showed an age of three years.  being three years and three months, he is right in the middle of the bell curve!  He continues to be on stress-dosing steroids during illnesses.

His GI appointment went just as well.  All his meds remain the same, with a few dosage tweaks.  We are repeating his gastric emptying scan in the spring.  The hope is he will eat more of the egg and toast meal so that we can get a more accurate result this time around.  If all goes well, we can begin weaning off some of his medications.  However, we did recently increase his two antihistamines because he began having am/breakfast mucus issues again.

In the future (a couple years) we can consider taking out the tube.  This concerns us because even without meds, fluid, and food going through the G-tube.... we vent him a lot.  With the fundoplication, he has a hard time decompressing on his own (burping and passing through his bowels).  Removing the G-tube eliminates the ability to do that.

We had a quick check-in with the Diagnostician.  He said all was well and to follow up with him in the spring, along with GI, after the gastric emptying scan.

Ian continues to do incredibly well.  We couldn't be more proud of him.  His feeding therapy continues and she is amazed by his progress.  We started a new feeding plan the end of November.  Ian is now getting chewing foods (foods like you and I eat... ie: grilled cheese, pizza, peanut butter crackers, etc.) with every meals.  breakfast is a little touch and go, but overall he is doing very well!  Feeding therapy also includes visits with our behavioral psychologist and dietician.  Both of those are also going well.

Potty training has been a great progress during these months.  He has the occasional wet accident in bed, mostly during naptime.  I would say it happens two or three times a month.  Messy accidents have only occurred about once a month, and are also during naptime.  We have been taking him to the potty once or twice a night to pee.  I don't think he could make it more than six hours at this point.  He does not wear a pull-up.  We felt as though they would be a crutch for Ian.... moreso than taking him to the potty.  We don't want him to EVER think it is ok to pee in his pants anymore.  He is a "give-him-an-inch...he'll-take-a-mile" kid.

This was a big November-December update for him doing so well.  He has been doing exceptionally well, there has just been a lot going on, and a lot of changes!

JANUARY-MARCH 2014 (early March)

Ian began having lots of trouble again these few months.  He began vomiting multiple times a week and had a lot of feeding intolerance.  We had a gastric emptying scan and upper GI series completed at CHOP.  The upper GI series showed the same small gastric hernia.  This has not changed and does not seem to be causing the problems.  The gastric emptying scan was completed as a four-hour-scan.  Ian only emptied around 50% of his stomach in two hours.  This is not abnormal  however, he was asked to take his prokinetic medication... which increases gastric emptying... for the scan.  This is because the GI doctor wanted to evaluate how well it was working.

The second two hours of the scan only showed an emptying of another 7%.  This is abnormal.  The reason is because the prokinetic medication, erythromycin, had worn off.  The conclusion then was that Ian needed a prokinetic or other medication that would have a longer acting-time on the emptying pattern.  We were very interested in a Boston Children's Hospital clinical trial of domperidone.  However, Ian's case was not applicable due to his age.

MARCH 2014 (late March)

The decision was to back off of feeding control.  The motility doctor's goal was to "decrease vomiting by back off and giving Ian more feeding control (as to learn his limits and call it quits when he is full) instead of decreasing the vomiting by adding more medications.  Since we are not pushing the feeding as hard, we can begin to wean off some medications.  We have already dropped the Bethanechol and are working on a few others.

APRIL 2014

Since backing off on feeding protocol, his feeding therapy has continued to progress.  He is still at an excellent weight.  With his shorter stature, we will need to watch his BMI.  But, for now, he is in a great place.  He works hard on his own to consume his 1000-1200 calories each day.  We still need to do a lot of "offering" and "presenting" food to him, but he seems to be learning his limits.  We have eliminated his Bethanchol.  He is down to vomiting once a week, on average.  Hopefully, we can continue to make more progress with this new paradigm.






This section details all of Ian's medical team members.  Each one contributes to Ian's care as it pertains to the specialty they provide.  Some overlap, and some leave gap-areas that are often missed.  A few are able to oversee care as a whole (Pediatricians, Geneticists, Diagnosticians), in order to gain a global perspective.  We are thankful to have each of them as resources for Ian's health and development.

This section also outlines where Ian currently stands with each specialty.  Keeping up with each area can be difficult at times.... but thanks to the overlaps and the ability to converse with one another, the process is much easier.



**ALLERGIST**

In the summer of 2011, Ian was suspected of having several food allergies. Lots of “scratch testing” and blood work was done, but all results were negative. Later on, another allergist conducted “patch testing.” This is a newer and much more European type of diagnostic work. Ian was in fact sensitive to eight of the 20 food provided. Thankfully, he is not exhibiting any of these effects and is currently has no food restrictions. Hopefully, as he continues to eat more by mouth and less medical grade food by G tube, this progress will continue.

He is currently taking Alvesco, DuoNeb, Benadryl, Periactin (Benadryl and Periactin are both antihistamines) Xylitol saline spray, and the occasional sinus wash to help with mild allergies and asthma (chronic lung disease, Reactive Airway Disease)

The medications are helping tremendously!  Ian's copious mucus is partially because of his extremely sensitive vagal response.  As Ian coughs, gags, has post nasal drip, or similar issues, his gag reflex is triggered immediately.  This irritates the vagus nerve and causes mucus to be created as a natural defense.  Well, as you can imagine, that contributes even more to the originally problem of mucus.  It is a cyclical process that is very hard to stop.  The antihistamines helps keep that to a minimum.

He has recently completed environmental testing and has shown no response.

We are not currently on an active follow-up schedule with this provider.


**AUDIOLOGIST**

Ian has visited two audiologists.  In addition to the one we see regularly, Ian needed an evaluation for the eligibility for school speech services.  Ian's hearing has been checked repeatedly.  He passed his newborn screening in both ears, but there was suspicion as tie went on.

Since Ian's speech was delayed, hearing was considered.  After the ear tubes were placed, Ian's hearing was checked and was unremarkable.  While we do think the tubes helped Ian's hearing, I do not think it was a huge eye opener.  Ian has completed several booth screenings, screenings with computer bone-to-bone measurements, and ear plug wavelengths.  He always passes and his hearing is viewed as being perfect.

We follow up with the audiologist once a year when we have regular visits with the ENT.  She is awesome and is very understanding of a toddler's resistance and needs during testing.

We are not currently on an active follow-up schedule with this provider.


**BEHAVIORAL THERAPIST (FEEDING PROGRAM)**

Ian attended the day patient feeding therapy program in January 2013.  This program is located at Virginia Commonwealth University: Medical College of Virginia.  This highly sought after program has a six-nine month waiting list.  The program's behavioral therapists is on of Ian's key clinicians.

As children develop aversions and behaviors toward food, they can begin to take over the way the mind processes feedback.  At this point in time, Ian will occasionally gag, retch, cough over simply looking at food.  This is clearly a behavioral, conditioned response...... think pavlov's dog and salivating when only the bell is heard.  When a connection between two things (vomiting/retching/gagging and food) is so strong, the mere presence of one can induce the other.

The therapist works very closely, on a daily basis, with the feeding therapy children.  Ian is learning to extinguish certain behaviors associated with eating and food...... while replacing them with healthy behaviors.

As an outpatient now, Ian continues to visit the therapist weekly during his feeding therapy sessions.  She has been an excellent source of support and knowledge in Ian's therapy.

We worked on potty training with her in September-October-November.  We have a good reward system in place, with instant and delayed gratification.  Ian is incredibly responsive to praise.  When he goes potty now he even smiles and says "You're so proud of me!"  I'm a little biased, but it is adorable!!

She also helped us these months with Ian's new school transition.  When he started preschool again this fall, I began assisting.  It has been a HUGE adjustment for Ian to understand that I am there with "other" kids and not him.  I am not assisting in his classroom.  As of the middle of October, things have been much smoother in that department..... no more tears.

Ian continues to progress with his feeding therapy.  After months of intense treatment and protocol, we have given Ian more control to learn his own GI limits.  Things have been going very well so far.  His chewing skills are improving and we are working on fruits and veggies right now.  He is getting better with swallowing them all the time.


**CLINICAL GENETICIST**

Clinical geneticist are doctors are able to test for chromosomal, genetic defects.  They often are the clinicians who are able to recognize rare and unusual conditions that may be missed by other unknowing doctors.  As a medical enigma at times, it certainly doesn't hurt to have one on our team.  While they may not have a strong presence in his day-to-day care right now.... we do have some future testing to do.

As mentioned in a BLOG entry, Ian had the possibility of Russell-Silver Syndrome.  About 10-15% of cases are seen in chromosomes, and appear in genetic tests.  In January 2013, Ian will had this testing completed in NY.  His tests results were negative, confirming he is a Small for Gestational Age (SGA) and Intrauterine Growth Restriction baby (IUGR).  Both IUGR/SGA kids display similar phenotypes as RSS.  However RSS children have other descriptors that most SGA/IUGR children do not.

In May 2013, Ian visited with the geneticist at CHOP.  She would like to see him again in one year.  As of right now, she has no genetic concerns.

There are no new updates with this clinician.


**DIAGNOSTICIAN**

A diagnostician is a "Dr. House."  These doctors are focused on viewing all of the medical, environmental, and psychological data as they pertain to a particular patient.  These departments are very difficult to find, especially pediatric ones.  CHOP has a program that we recently became aware existed.

Ian had an appointment November 2012 to visit a well know diagnostician, Dr. Magnusson.  He was appointed to CHOP's program in 1989 and specializes in the care of the chronically ill child.  He has worked under the direction of Dr. Pasquariello, director of the Diagnostics department there since 1969.  We are hopeful that they will be able to take the reigns as our head clinician (very similar to our pediatrician).

Ian is out of the scope of practice in many areas for many pediatricians.  He has been able to put all the pieces together for us and find any missing links that might be slipping by unnoticed.  We have often hoped for Dr. House to come and visit Ian.  We had no idea these programs actually existed.  While they may not be able to offer any new information, our goal is to gain an overall perspective of Ian's medical conditions.

We continue to see him on a three month follow-up basis..... to make sure we cover all the bases.  He is an excellent and key component to Ian's care.

There are no new updates with this clinician.


**DIETITIAN**

Historically, working hand in hand during the same visits with the pediatric surgeon at CHOP was our fabulous dietitian. She also has extensive knowledge in gastroparesis, post-prandial hypoglycemia, dextrose, long chain fatty acids for buffering, glycogen storage, insulin surges, and all of the other GI-diet connections Ian experiences. She is amazing and has completely debunked a lot of issues that the GI docs simply shook their heads about. We owe Ian’s weight gain and food tolerance to her.  In the past, she has been changing around Ian's "recipe" to help with tolerance.  It is always a work in progress.

Now that Ian has completed the feeding therapy program at Children's Hospital of Richmond, we are working very closely with a new Dietitian.  Ian has certainly thrown her a curve ball.  Between the dumping, hypoglycemia, and motility issues, she has worked out several plans for Ian with multiple transitions.

Now that Ian's gastroparesis has been diagnosed, she has been able to help us maintain a diet that keeps Ian healthy, meets all his needs, and is able to be simple enough for his body to understand.  She has been able to keep it easy enough so that he can eat smaller meals for his body to tolerate.

Ian started a new feeding program in November.  He is now getting chewing foods (things like grilled cheese, peanut butter cracker, and rice) with every meal.  This has made for a big decrease in purees.  His bowels and gastric emptying have adjusted nicely, with the addition of more fluids.  We are trying to use high calorie, high protein foods so that his volume can stay low.

We are now trying to decrease Ian's fat and fiber content.  These are foods that take longer to leave the stomach and they aggravate his gastroparesis.  His blood sugar remains stable.


**ENDOCRINOLOGIST**

Thankfully, Ian sees the #1 pediatric Endocrinology program in the country. Ian started seeing them in 2012.  In the past, the pediatric surgeon at CHOP has been able to manage the reactive hypoglycemia and the ketotic hypoglycemia with the dietitian there, and the Endocrinologist has been a supplemental physician for Ian, up until now. Major endocrine disorders were ruled out and Ian has been able to space out his follow ups with Endocrinology.

Ian began growth hormones in January 2013.  We met with the Endocrinologist at CHOP November, 2012 and discussed growth options.  In the two years since Ian has been born, he has shown no catch up growth.  Premature babies are no longer viewed at their "corrected age" once they turn two.  The medical world now sees Ian as two years old.  Ian had been on any growth charts for hight or weight, and has even fallen off his own growth curve.

In May 2013, his growth hormone was increased to reflect his new growth.  He has grown over three and a half inches since beginning the hormones seven months ago.

As of December 2013, Ian has grown over five inches in the last year!  He is almost at his genetic potential and his bone age radiograph shows three years.  At three years and three months, he is right in the middle of the bell curve.  We have been able to come down on his growth hormone dose.  If all goes well with his feeding and nutrition, we might be able to take a 6-12 month trial break in the spring.

He continues stress-dosing steroids for illnesses.


**FEEDING THERAPIST**

Ian’s feeding therapist is an occupational therapist. He began seeing her at Children's Hospital of Richmond in January 2013 during his eight week day patient program.  We visit her weekly now for outpatient therapy. Feeding therapy techniques vary greatly and the program has been a good mesh with Ian and our family. She works mostly on positive reinforcement and rewards.  The Richmond program is a behavioral based program.  Ian has made trememndous progress in feeding therapy.

In November, we began giving Ian chewing foods with every meal (grilled cheese, pizza, rice, etc.)  We have been able to wean down on the purees and replace several calories with new chewing/table foods.  He now visits her twice a month since preschool is back in session.  She continues to be impressed by his progress.

We have now passed some of the feeding control down to Ian.  He is learning his limits of eating.  This way, he can know what he can eat, when, and how much of it he can eat.  this should help decrease his vomiting.


**GASTROENTEROLOGIST**

We have seen over a dozen pediatric GI doctors and have finally found one that seems to be agreeable to the path we have chose for Ian. Since graduating from the GERD clinic at CHOP, Ian's has been able to settle in with a GI doctor.  He is the first one EVER that has been a good fit for Ian.  It took a lot of phone calls and trials, but have finally found a GI home.

He has been able to teach us things that we didn't know.  I can't say that for any other GI doctor.  He has taken management of most of Ian's medications and approves of his seeing the Richmond clinic for treatment and therapy.

I cannot express how happy we are..... FINALLY..... with a Gi doctor.  It only took three years!!

In December 2013, we followed up with him again.  He would like us to repeat the gastric emptying scan in the spring.  Hopefully, he will eat more of the egg-toast meal so we can get a more accurate reading.  If all goes well, in the spring, we can talk about weaning off some of his GI meds.

We did an upper GI series and gastric emptying scan in February 2014.  Ian's hernia remains the same and is not being blamed as the cause of his January-March 2014 increased vomiting pattern.  The scan, however, did confirm severe gastric emptying delays.  The plan is to decrease vomiting by backing down on feeding control and allowing Ian to learn his limits, instead of decreasing vomiting by adding medications to keep going the way we are.


**HOME SUPPLY COMPANY**

The home supply company are the ones who distribute Ian's medical supplies each month.  This typically includes: food, gauze, feeding tube and accessories, gauze, feeding bags, pumps, syringes, and anything else that may accompany his feeding supplies.  Each month, they bill the insurance and Ian's Virginia medicaid.  We are VERY grateful for them!

Ian's supplies cost over $100,000 a year.  I cannot imagine what life would be like trying to finance.  Having to evaluate every month what needs are most importantly met is something many families deal with.  With the blessing of our home supply company through our insurance, we are able to meet Ian's needs with little struggle.  The company is nearby to our home.  They have been wonderful with emergency, weekend, and prompt deliveries.  I'm not sure what we do without them...... You simply just cannot ask a Pharmacist for a feeding bag or G tube supplies.

There are no new updates with this clinician.


**IMMUNOLOGIST**

An Immunologist is someone who evaluates and treats pathology of the immune system.  Ian's part in this field is hypersensitivities.  With chronic lung disease and moderate asthma, Ian's body has exaggerated responses to many triggers.  We met with the Immunologist in December 2012.  They happen to also be Ian's allergy office.  There has been no significant findings in this area and we have been cleared at this point in time for immune diseases.

We are not currently on an active follow-up schedule with this provider.


**METABOLIC GENETICIST**

The Metabolic doctors at CHOP had historically been helping us with some of the genetic side of Ian’s issues. Fortunately, once his fatty acid testing was completed, we had been able to be on “Genetic-Hiatus” for this department. This testing was performed because Ian was born at 29 weeks due to severe maternal HELLP syndrome. This can be triggered by genetic factors in the mother that can produce negative effects metabolically in the child. All of Ian’s test and we have been cleared by them.  We did have more testing done for metabolism and mitochondrial diseases while he was hospitalized for RSV in December 2012.  Everything has returned normal and we have been cleared once again.

We are not currently on an active follow-up schedule with this provider.


**OCCUPATIONAL THERAPIST**

Ian has worked with a few OTs in the past working with him on sensory processing issues. Previously, Ian would not touch soft, smushy, jelly, furry-type objects. He would only hold hard, smooth blocks and other similar toys. Through a series of several months’ appointments, Ian is now able to integrate these objects as non-threatening. While they may not be his favorite, the shaking and crying in the presence of these has been eradicated. Ian is also worked with his therapist on proprioception, spatial awareness, and stimuli input from the environment.

Ian is a child who generally has low registration of senses in nature.  This means he requires a higher volume and/or intensity of sensory input to meet his sensory needs.  Children of this nature are typically low tone and require more input (intensity and duration) to meet their sensory needs.  These children also usually crave "heavy work" and proprioceptive activites to learn where there body is in space.... such as constantly being in motion.  Low registration tendencies also coincide with high pain tolerance.  Sensation avoiding may or may not tie into various senses.  Sensory processing disorder can be the craving of sensory input (Ian) OR...... it can be avoiding sensory input (Ian's oral behavior).  Ian does have sensory avoidance when it pertains to oral sensory processing.

A contributing factor to this and PT is Ian's hypotonia.  With overall low tone, Ian's muscles are always craving strong sensory feedback.  Hypotonia can be managed successfully with controlling sensory awareness.

We are not currently on an active follow-up schedule with this provider.


**OPHTHAMOLOGIST**

Being born at 29 weeks, a baby’s eye are highly underdeveloped. The eyes are one of the last fetal systems to develop.... usually right before birth, once hormones for labor start occurring. While in the NICU, Ian had a handful of visits and tests done from ophthamologists. He was at very high risk of Retinopathy of Prematurity.

Thankfully, despite his early arrival, Ian’s eyes are as perfect as they can be. After his first birthday, we had a visit to confirm his progress and received a good report. We will follow up at age three to make sure he has completed ocular development.

Ian followed up in November.  his vision is actually measuring at five years old, awesome!!!  We will need to continue to see her every year as long as Ian is taking steroids (Alvesco inhaler pro-drug and stress-dosing illness steroids).  These can rarely cause increase pressure in the eyes.

There are no new updates with this clinician.


**ORTHOTIST**

An orthotist is a healthcare provider who specializes in orthotics.  They evaluate and formulate treatment plans, as well as monitor treatment.  Ian's orthotist focuses on his hypotonia as it pertains to his lower extremities.

Ian's hypotonia has lead to excessive foot pronation.  Since the muscles in Ian's feet are of very low tone, his arch collapses.  This causes the entire inside of the foot to fall flat onto the ground.  With the caving in of the foot, the legs and knees begin to following the same trend.  When viewing Ian from behind, you can clearly see his feet lean in.  Also, we recently noticed that when he stands, his thighs and knees are together, while his shins and feet are not.  This is from the inward collapsing of the knees.

Ian's orthotist referral came from his PT and OT.  As an orthotist, she was able to fit Ian for an orthosis called SMOs: Supra-Malleolar Orthosis.  These are orthotics that work with the foot and ankle to move bone into the correct place.  These will help correct Ian's arch by lifting the inside of the foot.  In doing so, he will be able to stand in proper alignment and will have much better support and stability.

This process takes years.  Ian's case was caught very early and should hopefully only take a few years.  If discovered in grade school years, the condition is much worse and takes much longer to treat. Without treating this excessive pronation, Ian's feet and knees will continue to collapse and deprive him of support.  This effects gait, running, stance, strength, and stability.

Since Ian has grown so much recently, he is now on his third pair of orthotics in nine months.

There are no new updates with this clinician.


**OTOLARYNGOLOGIST (EAR, NOSE, & THROAT)**

With Ian’s GERD issues, came "back-up" in the eustachian tubes. Ian developed a condition called Glue Ear because of the timeline fluid accumulated in the tubes. For over nine months, Ian was getting ear infections and not releasing the large amounts of fluid in his ears. In April 2012, a bilateral myringotomy was performed to ease this pressure and fluid. Also, a laryngoscopy was completed to evaluate the larynx and vocal cords. Inflammation shows current reflux, despite the Nissen. The herniated Nissen was allowing some acid and regurgitation to move freely.  Ian's Nissen has now been repaired and the reflux is no longer contributing to ear problems.

Ian recently had his tonsils and adenoids removed.  In October 2012, his sleep study showed severe obstructive sleep apnea with notable hypopnea (shallow breathing).  Ian's sleep stages were being severely disturbed by this condition. This also contributed to the fact that Ian never really "turns off."  It was described to me as being unable to sleep because you are so very tired.

After the surgery, Ian developed post-surgical complications from the retching.  At the risk of hemorrhaging, he was readmitted for a five day period.  Thankfully, he didn't need any more surgery for repairs.  Pathology did show that he had a chronic staph infection in his tonsils.  It is estimated to have been there for over six months.

After Ian's recovery, he seemed to be sleeping much better.  He had a followup sleep study done in April 2013.  His sleep apnea episodes went down by 50%.  He still has diagnostic sleep apnea, but not of concern at this point.  The ENT would like us to repeat the sleep study in one year to reevaluate.

It was noted that his periodic limb movements increased.  We decided to have a sleep medicine doctor help us out with this.

We are not currently on an active follow-up schedule with this provider.


**PEDIATRICIAN**

Our pediatrician is amazing.  She has been able to help guide us to many specialists. She has been working with Ian since his discharge from the NICU at three pounds 13 ounces, six weeks old, at 35 weeks gestational age. She was the one diagnosed “Failure to Thrive," which helped us receive state medical assistance and a shoe-in to any specialist we needed for Ian.

She has been with us through all the hard times and the bad ones, which have been numerous. Right now, she is our cheerleader, helping us celebrate each momentous occasion.  Having her to help us troubleshoot has been wonderful.  The office could not be more helpful with paperwork, referrals, and appointments.  We are very lucky.

There are no new updates with this clinician.


**PEDIATRIC SURGEON/ GERD CLINIC**

The pediatric surgeon at the Children’s Hospital of Philadelphia (CHOP), has been a true saving grace!  After having so many complications from the Nissen Fundoplication and G Tube placement, he was the one who actually LISTENED and took our number one priorities as his own. He has very extensive knowledge treating this type of child and amazes us every visit with his ideas and theories. I would highly recommend this clinic and doctor for ANYONE struggling with GERD, especially, post GERD surgical dilemmas. He is also the one who repaired Ian herniated Nissen due to Post-prandial Hypoglycemia.

This clinic will be featuring Ian on their up-and-coming website with CHOP soon.  The clinic treats children who have been unable to get results from other GERD therapies.  As a last resort, Ian fell into the department with ease.

After Ian's completion of the Richmond day patient feeding therapy program, we were successfully 'graduated' from the clinic.  This was a HUGE step for Ian.

We are not currently on an active follow-up schedule with this provider.


**PHARMACIST**

While not a contracted appointment clinician on the team, Ian's pharmacist is a crucial piece.  We have been working with her since Ian was born.  She does an excellent job of educating us on all of Ian's medications.  She is a great resource when we have questions about how drugs work and how they may or may not work well in conjunction with other medications.  Being on a first name basis with Ian's pharmacy team, we are very comfortable speaking with them about our concerns.  We all know one another well enough to work together as a team.

I am frequently visiting the pharmacy for some reason.  I do not like keeping Ian's medications on any auto-refills.  They all fill at different times... some are daily and some as needed... and they all expire at different times from different doctors.  As a control-freak, I like keeping records of refills, expirations on prescriptions, and daily information for all of Ian's prescriptions.  It is great to feel safe and secure with Ian's medication needs.

There are no new updates with this clinician.


**PHYSICAL THERAPIST**

Ian saw a physical therapist in the fall of 2012.  She helped him with shoulder girdle strength and abdominal muscles.  Since Ian did not crawl, he missed some important muscle building activities.  The gastric surgeries have also impeded his tummy muscles.

Another important thing she is helped Ian with is sensory awareness as it pertains to spatial awareness..... learning where his muscles/body is in space.  She also helped Ian with proprioception and learning how to decrease the need for strong external stimuli feedback.  By building these muscles, Ian's body is able to establish a level of sensory feedback all on his own, and not have to seek out stronger input.

A contributing factor to this and OT is Ian's hypotonia.  With overall low tone, Ian's muscles are always craving strong sensory feedback.  Hypotonia can be in part managed with improved controlling sensory awareness.

She is also the one who was able to get us started with the orthotist for his SMO orthotics.

We are not currently on an active follow-up schedule with this provider.


**PULMONOLOGIST**

We began seeing the pulmonolgist when the GI specialists weren’t helping any longer with Ian’s severe GERD. When you step back and look through the research, GERD truly is a pulmonary disease. As reflux, GI doctors can handle the load.... GERD involves other body systems, typically the airway.

Although Ian has never proven to aspirate clinically, he has severe deep penetration into the airway when swallowing. This means that he is at high risk for aspiration. Before traveling to CHOP, our pulmonolgist was able to get a grip on what was happening. He was the one who introduced the idea of GERD aggravating the vagus nerve and creating secretions that were causing “congestion.” He also placed Ian on some steroid inhalers that eased some inflammation in the esophagus, while it was protecting his airway.

Ian had a round of bad Bronchiolitis in fall of 2012, no fun.  With his vagus nerve issues, it was even worse.  It took him a long time to recover from this (about eight weeks).  Pulmonology is an excellent resource for children suffering from GERD.  He was also hospitalized with RSV in December 2012 and needed a large amount of oxygen for days in order to keep his saturation levels within healthy limits.

I would highly recommend any child with GERD consult with a pulmonologist. Ian was recently diagnosed with asthma- reactive airway disease.  These often go hand-in-hand.  Fortunately, Ian's pulmonologist is a second 'Diagnostitican' for our family.  He knows so much more than most pulmonologists and has a vast amount of knowledge to share.

Ian has recently had more trouble with asthma coughing this spring (March 2014).  We have started using a few nebulizer and inhaler treatments, as well as a nasal spray to help keep allergy and asthma symptoms to a minimum.

There are no new updates with this clinician.


**SLEEP MEDICINE**

When Ian's periodic limb movement disorder was diagnosed, our pediatrician wasn't able to do much.  Most of the time, this is a matter of serum iron levels.  After some testing was done, it was decided that Ian was indeed short on iron.  We decided to work with the sleep medicine doctor who runs the sleep study lab Ian visits.  She started him on iron supplemental therapy.  It will take a while for his iron levels to rise, but she is optimistic.

In October, we visited her again.  Ian's iron has come up by ten.  It is still quite a ways from being over 100.  She will repeat the blood work in the spring.  As long as it is trending in the right direction, we will not need to repeat it for a couple years.

There are no new updates with this clinician.


**SPEECH PATHOLOGIST**

Ian began working with a speech pathologist through the county schools in January 2013.  Oral motor concern has been ruled out.  However, Ian does have some minor speech delays.  Historically, Ian's receptive speech was very well developed.  He had no trouble interpreting and understanding what others are telling him.  His expressive speech is where the problem was.

Ian's delays are/were most likely attributable to his original lack of oral muscle use (eating and swallowing).  While the oral motor is no longer a concern, Ian is not used to using those muscle in a way that produces successful speech.

Since being in preschool, Ian's speech and verbal skills have come a long way.  Thanks to preschool and his speech therapy, he is doing very well and is saying new words, thoughts, and sentences everyday!

We just wrote a new IEP for Ian's speech therapy.  It will begin in 2014.  he continues to make progress and she is very pleased.  He still has some articulation errors for those not used to hearing him communicate.  She has a few letters on his IEP, but overall, he is doing exceptionally well.

Ian has been moved to "on-consult" as of April 2014.  He no longer has a delay, but is still working on a few sounds.  The therapist feels that we can continue practice at home, and contact her with concerns.  We agree with her.

There are no new updates with this clinician.






3 comments:

  1. What a journey your family has been on!! Thank you for sharing!

    ReplyDelete
  2. If you don't mind I have some questions about the feeding therapy program. From your story it sounds really promising. It would be really far for us to travel and take off work so I have some questions. If you have time and don't mind talking with me my email is dawn.vandevord@gmail.com.

    ReplyDelete
  3. I know your case is more difficult than average, however, please read, ask, and consider running barefoot on various surfaces as a form of foot/ankle therapy.

    Of what I have read in the blog, boosting the immune system could also make a great difference. One unorthodox method is cold showers and cold exposure. If your docs do not protest, please read what others have accomplished in that area (obviously, most experience refers to kids without health issues).

    As your schedule seems always busy, please also try to minimize interference with Ian's sleep cycle. Many parents "schedule" or skip the daily nap, which should always come at the right/natural time. With therapy sessions and doctor visits it can be awfully difficult, however, I believe this has a miraculous effect on immunity and general growth.

    ReplyDelete