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Parent Support --> F.E.A.S.T. - Feeding Education And Support Team
Parents often ask to speak with families who have been through the program. Several parents of our graduates have agreed to make their email addresses available. Some families experienced out patient treatment, some day treatment and several are from out of state and will try to help you with your concerns. Several families have chosen to share their personal stories and how the Center for Pediatric Feeding and Swallowing has impacted their child's life.
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ZM (from North Carolina)
DOB: 11/98
Program Dates: Sept./Oct. 2002
Our son, ZM, was born (full-term) without complications and reached all the major developmental milestones at the appropriate ages - except for eating. ZM never transitioned from smooth baby foods to textured foods with the exception of three “kid-friendly” foods (goldfish, cheerios and French fries) that he began to eat between the age of 12 – 14 months. Our son had a history of chronic ear infections and respiratory illnesses so we originally contributed the delay of accepting chewable foods to this – thinking that he associated eating to pain. He was growing normally so it was not an immediate concern, but by the age of two he was eating only six foods (three baby foods and the three chewable foods cited earlier). Over the next two years the number of acceptable foods dropped from six to two. The question of “why” he was not accepting new foods and “why” he stopped eating preferred foods remained a mystery. For two years ZM went through intensive feeding therapy, many evaluations (medical and psychological), numerous medical tests, and several medications were tried – all in an attempt to find an answer – all to no avail.
Our son entered the day treatment program at St. Joseph’s Feeding and Swallowing Program in September 2002 for a 4-week admission. The diagnoses of (silent) gastroesophageal reflux and weak GI motility were confirmed and the appropriate medication/ dosage prescribed. A treatment plan was established and on the 3rd day of the feeding program ZM was readily accepting new foods. Within a week he was eating 16 new foods and at the time of discharge he was eating 30+ foods (although some remained in a pureed form).
Upon returning to North Carolina we continued the daily protocol that was established at St. Joseph’s. We arranged follow-up care with a neurodevelopmental pediatrician and a behavioral analyst to monitor ZM’s progress and we modified the original protocol to parallel with our son’s progress as needed. Since being home he has achieved the additional goals of eating all chewable foods (no more purees), self-feeding most foods, and he has continued to expand his food selections. Now, five months later, we are simply “fine-tuning” his eating skills.
The St. Joseph experience was very positive for our family. Although each day presented different challenges – it was worth the stress to see the end results. We have witnessed so many moments of joy since our return from New Jersey. Some of those moments have been watching ZM eat his first turkey at Thanksgiving, seeing him eat birthday cake for the first time (he prefers the icing), and seeing him enjoy the typical foods a 4-year old eats (chicken nuggets, hotdogs, spaghetti, popcorn, ice-cream cone, etc). None of these moments would have occurred without the assistance provided by St. Joseph’s.
Words cannot express our appreciation to the staff at St. Joseph’s. The team is committed to seeing each child in the program succeed and their dedication to each child/family is portrayed daily. Thank you for exceeding our expectations!! We are eternally grateful!!
A. R.
A.R. was born at 41 weeks of gestation after an uncomplicated pregnancy. During labor A.R. was injured, and he was born with an apgar of 2 and 4. His first diagnosis was respiratory distress, but by his third day of life A.R. began to develop seizures. An MRI & CAT Scan confirm a fracture to his brain and the development of a hematoma. He suffers from hypotonia, cortical visual loss, seizures and is developmentally delayed. Right after his 1st birthday, A.R. began to develop respiratory problems. Swallowing tests confirmed aspiration, but thanks to the St. Joseph's Swallowing Team we were able to keep him bottle and spoon-feed, minimizing the possibility of aspiration.
By late 1999 A.R. had visited the Hospital 13 times. Just 3 weeks before the arrival of the new millennium, RSV attached A.R. for the 4th time, keeping him at St. Joseph's PICU for 7 weeks. This time RSV took a toll on his body, and after two failed attempts to extubate, the decision was made to install a Trach on our little angel. By now, A.R. was unable to swallow without the risk of aspiration. By late April 2000 and after a third Swallowing test, it was determined that Alexander was in need of a g-tube and a fundoplication. On the same day JR (A.R.'s big brother) started 1st grade, surgery took place. Our hope was to keep him healthy for him to allow him to participate in the new Feeding and Swallowing Program at St. Joseph's. As his lungs improved, his bowel problems increased. We strongly believe that the last 2 seizures he developed this past year were the result of constipation of 9 & 6 days respectively. Despite the treatment prescribed by A.R.'s GI (Senokot, Suppositories, Mineral Oil, Magnesium Citrate and Enemas) he held bowels for days. On our first visit to the feeding team, A.R. looked so distressed. After a two-hour evaluation, his diet was changed and within a week his bowels began to improve. His lung capacity has improved so much that we made it through the winter 2000 without lung complications or RSV. He started to gain control of his swallowing and just 3 weeks ago began to eat small quantities of yogurt.
It has been a long road, and we know that there is a longer one ahead of us, but the Feeding Team @ St. Joseph's is making it possible for A.R. to re-habilitate his body. He will be home schooled for now and we know that PT/OT & Speech therapies are a must, if we want to keep him healthy. The Doctors have given A.R. the tools to a productive and happy life; the St. Joseph's Feeding Team is guiding our Family towards the future, allowing us independence from the hospital, and helping us to conquer our unique life style!
H. G.
Born April 1998 (4 weeks premature)
When H. G. was six weeks old he began vomiting, back-arching and having diarrhea. At ten weeks he was diagnosed with Stridor, which is the collapsing of the esophagus. He had very poor weight gain. At four months he was diagnosed with severe reflux and asthma. When we tried to feed him baby food, he threw up immediately. H. G. was accepting less and less food and losing a large amount of weight. We tried various medications and began feeding therapy. At 14 months he had a Nissen fundoplication and a g-tube inserted. H. G. started at St. Joseph's when he was 2 1/2 , and he learned to chew and swallow food. His remaining problem is getting consistent bowel movements.
T. A. H.
05-03-1999
Raleigh. NC
T. H. was born full term after a "normal" pregnancy. Immediately after birth there were complications. Doctors believed at the time that T.H. was having seizures and within five minutes of her birth she was given ant-seizure medication. She was taken to the newborn ICU, and we were not able to see her until several hours later. T. H. did not have a sucking or swallowing reflex and doctors were very pessimistic about her outcome. If she survived, they felt she would suffer severe brain trauma. T.H. was fed by an NG (nasal-gastric) tube for the first ten days of her life. By then, the doctors decided that it was in T.H.'s best interest to have a g-tube inserted and a nissen (tying of the stomach) in order for T. H. to thrive and be able to go home. The surgery was performed and she did come home. For the first 1yr and 10 months of her life, she was 100% tube fed. Although all of T.H.'s MRI's, CT scans, genetic testing, etc. had come back normal, T.H. was unable to trigger a swallow.
T.H. has been followed by a speech pathologist since she was 10 days old and we had made progress in getting her to accept a dry spoon but our therapist knew that we needed to get her up to St. Joseph's Feeding Center to have a full evaluation done on her. T.H. had extensive feeding and occupational therapy done at the clinic. While there, after a CT scan was performed the staff discovered that T.H.'s jaws were fused shut (mandibular hypoplasia) and this was a major reason for her not being able to open her mouth to get a spoon in it. Though therapy she was able to develop a strong enough swallow and by the time we left the clinic T.H. was being fed 100% by mouth. It has now been a little over two months and T.H. has not used her tube once. T.H. is fed four times a day. It won't be long before her tube is taken out.
In the end, a diagnosis was never given for T.H.. The closest we've come is that her doctors believe that she may have suffered a stroke in utero and her facial and swallowing muscles were severely affected. In our case, she has made remarkable progress and is considered by everyone who knows her a "miracle baby". St. Joseph's Feeding Center did what no one else could do for our daughter!
S. N.
Born August 1998
S. N. arrived in the world screaming and did not stop for 6 months. At
2 months of age, we discovered the problem was reflux. Despite medications
such as propulsid and having her sleep in a Tucker Sling, she was still
not gaining enough weight and continued screaming and vomiting. At 8 months,
an N-g tube was inserted to supplement her nursing and when we gave her
the extra food, she stopped eating my mouth altogether.
We started getting professional feeding therapy assistance and had a G-tube
inserted. At 1 year, we discovered she had a delayed gastric emptying,
which means that food stays in her stomach much longer than it should
and she remains feeling full for a very long time. We continued working
with a few different feeding therapists over the course of a year and
a half and we were able to get her to accept a spoon and eat about one
tablespoon of food, per day. At this point, we started at St. Joseph's.
After completing day treatment, S. N. is now totally oral-fed, eating
4 meals per day. We continue to visit St. Joseph's to improve her eating
skills. A few weeks ago her G-tube was removed!!!!!!!!!!!!!!!!!!
R. H.
R.H. was born at 24 weeks gestation, weighing just 1 pound, 9 ounces. His first home was the Neonatal Intensive Care Unit at St. Barnabas Medical Center in Livingston, NJ, where he lived for over 4 months. During that time, he spent 8 weeks on a ventilator to help him to breathe. His prematurity resulted in breathing problems (he came home with supplemental oxygen), as well as developmental delays in gross motor, and oral motor/speech skills. His breathing is now fine and he is receiving physical and speech therapy.
R.H. began to see Dr. Eicher at the St. Joseph's Center for Feeding and Swallowing for feeding issues when he was 1½ years old. He would eat pureed foods, but was unable/unwilling to eat foods with texture that required chewing. He made some progress, but still could not chew with his molars or move food from side to side with his tongue. At age 2 years 4 months, he weighed just 20 pounds. In November, he began a 6 week outpatient program. Since the program, he has improved. His weight is slowly increasing - at 2 years 8 months he is almost 24 pounds. It is still hard for him to chew with his back teeth, but we practice everyday.
R.H. is a very lively kid who stays active - he loves his Music Together class, swimming class at the Y, pre-school 2 days a week and his Physical Therapist, Speech Therapist and Teacher. But most of all, he loves his baby brother, Harry, who is almost 8 months old.
S. H.
S.H. is a 4 ½ year old former preemie (32 weeks) initially diagnosed with Failure to Thrive. He came home after 7 weeks in the NICU, but continued on oxygen (until 9 months) and had a very slow weight gain. At 9 months of age he received his first NG tube. With the NG-tube came decreased oral intake and increased vomiting. After 3 months, a G-tube was placed surgically, along with a fundoplication to alleviate esophagial reflux.
Since then S.H. has continued to be orally aversive, and has worked with several feeding therapists, behavioral analysts and speech therapists. He gets occasional retching in the mornings, and when he's feeling particularly full. Various meds have been tried but we're still searching for the right mix to make him comfortable.
S.H. entered day treatment July 2001, and was there for a period of 5 ½ weeks. Going in he was eating about 20-25% of his calories by mouth. Currently he's eating about 50% by mouth. We still struggle with feedings, as S.H. is very resistant. We continue to come to the feeding center every 2-3 weeks. We've been mostly working with Merrill Berkowitz lately, as S.H.'s issues seem to be very behavioral. Currently we're working on self-feeding, to give S.H. a feeling of more control.
K. Y.
When Alex and I decided it was time to have kids, we were excited. We knew a number of others who had started a family and even though it posed as a lifestyle change it seemed that having kids really wasn't "all that hard." Little did we know what kind of change was in store for us when our beautiful daughter, K.Y., was born 10 weeks early on July 9, 2000 weighing in at 2 lbs. 12 oz.
Near the 25th week of my pregnancy, the doctors noticed that K.Y. wasn't
receiving enough nutrients through the placenta. After a few weeks of
bedrest at home and a week in the hospital, they decided to take her by
c-section. The 3 months in the hospital were quite boring. We were fortunate
to have such a healthy preemie. K.Y.'s only issue was that she wouldn't
eat enough by mouth to be let out of the NICU. So, after her due date
passed, Alex and I began to get restless. What do you do with a
Kid who doesn't eat? After much consideration, it was decided to do a
Nissen and place a g-tube. They also found out that she had a mild case
of pyloric stenosis and did a pyloromotomy. K.Y. came home eating full
feeds by mouth two days after surgery.
Within a month of coming home, K.Y. was almost 100% tube fed and screaming through every feeding. This screaming sent us to a GI who did a scope and found a huge gastric ulcer around her g-tube site. He changed the button to a microvasive, put K.Y. on some carafate, and we were on our way. A new pattern would soon evolve. K.Y. had 3 more diagnosed ulcers and 3 more brands of g-tubes placed before we came St. Joseph's in June 2001.
We arrived at St. Joseph's with 11 month old K.Y. who was then 100% tube fed. I was determined that this program would work. After our first four weeks in NJ (we're from CO), K.Y. made little progress. She would open her mouth for the spoon, allow food in and spit it out. The protocol was working to a point, but K.Y.'s gut was still hurting her. One miraculous day, after checking her pH daily, adjusting her meds, and changing her formula and feeding schedule - she swallowed a bite!!! From that day on we were on a roll!!! The protocol we had been practicing for weeks finally had the chance to work. I can remember the day K.Y.'s therapist walked into the room with syringes full of pureed food - she was finally eating enough that we could measure it!!
When we left the program 6 weeks later K.Y. had made progress in leaps and bounds. She had now turned one. She was eating 3-5 ounces of purees each meal. And she was constantly trying foods from our plates.
It's now been almost a year since we left St. Jo's. In January, with some reluctance from the GI, we had K.Y.'s tube pulled - and we haven't seen signs of an ulcer since. K.Y. is eating 90% of her meals without the protocol - and she has graduated to table food!!! We still aren't sure how to get her to drink indepdently, but that too, will come. Times of sickness stink - they send us into a backwards tailspin, but I can always rely on the protocol to get some food into her. And - she ALWAYS bounces back!!!
Without the experience we had at St. Jo's, we don't think that we would
be in the place where we are today. Thanks!!!