ARFID JOURNEY ONE YEAR LATER - Oct 2021

Can you believe it has been one year?  Praise Jesus!  We are one-year post-therapy.  What an amazing journey it has been.  We have been released from the Intensive Feeding Program with an encouragement to stay the course.  They were very happy that Mason has not dropped any foods that he acquired post-therapy and even added one or two more.

We determined that the cause of his sickness at the end of his therapy was an allergy to peanut butter (the last food we added in Michigan). 

Mason is maintaining his nutrition through normal table foods as we had hoped.  He no longer needs Legos for motivation, but we still use screen time to keep him eating.  I believe it is a battle we all face.  I would much rather eat junk food than healthy food.  In fact, he eats better than the other two boys on most days.  

Thank you again and to God be the glory,

ARFID JOURNEY HEADED HOME (Dec 2020)

We are supposed to finish our intensive feeding program today and start our journey home. However, Mason is very sick and we’re not sure why. The whole week he has had stomach pain and we thought it was from the lactose in his milk. Last night he was throwing up and had diarrhea for hours. We are beginning to think it is something more serious and praying it’s a simple virus. He is supposed to have a graduation ceremony at 11:30. Our hope is that we get through the ceremony and start driving home. We plan to drive halfway today and the rest tomorrow. Prayers appreciated for Mason to feel better, traveling safety as we have had very little sleep, and a clear resolution to what is causing his symptoms.

Mason was very sick and had thrown up most of the night. After his feeding school graduation, we were advised to have him checked out in the ER.  After IV fluids, nausea meds, and pain meds we were on our way home. His blood work showed elevated inflammation that may be caused by a virus or a food allergy. We were hoping it was a virus, but it looks more like a food allergy as he was throwing up again this morning. Please pray we can get into his gastroenterologist before the end of the year as we have met our deductible.    Also please pray it is peanut butter he is allergic to and not milk. So many of his supplements are based on dairy products.

The transition to feeding protocol at home went fairly smoothly. Please pray for consistency for us in the weeks and months to come. Mason will only be as successful if we are consistent.

ARFID JOURNEY WEEK 8 (Dec 2020)

 Thank's to everyone for your prayers, cards, gifts, and support.  We could not have endured these weeks without you!  Our journey has been up and down, but God has used you to encourage us just in time.  

We hope to finish feeding school on Friday with a mini graduation ceremony and drive home on Saturday. David arrived yesterday and Mary was VERY happy (see attached picture).  We went on an adventure to the Frederick Meijer Sculpture Park and Gardens and explored their sculptures, train exhibit, and international Christmas Tree display.  It was very cold here yesterday, 33 degrees, which made exploring a bit chilly.  

Mason had some type of stomach distress early this morning and we have not been able to start David's training at feeding school.  He was up at 1:30 and 2:30 getting sick on his stomach.  David arrived just in time as he handles vomit in our house.  Prayers for a speedy recovery for Mason so we can finish strong and head home.

Praise:  Mason is now eating 10 new foods consistently and zero tube feeds. 

Requests: Mason feels better.  Traveling safety. Continued protection from COVID.

ARFID JOURNEY WEEK 7 (Nov 2020)

We have begun our countdown for returning home. David comes on Sunday the sixth for his training. Mason will have his graduation ceremony on the 11th and we will be driving home on the 12th. We are so excited that the end is in sight.

Mason has not had to tube feed last week. That is a victory. He is taking all meals by mouth and even his nutritional supplement. He even wants to snack on something besides french fries and asked for apple slices at McDonald’s. All of these are small steps in the right direction.

Last week was very hard on me. I am by nature a peacemaker and do not like confrontation. It would be much easier for me to give in to Mason but they are working with me to train me on how to defuse his negotiations and anger. It is very difficult to sit through a meal while your child is shouting that he hates you or while you see him struggle with something that should be so simple. I have put boundaries in place so this doesn’t happen again, but this is my reality. Mason’s anxiety is high. Simple foods stress him out. What he will eat today, throws him for a loop tomorrow. He’s always looking for an angle to negotiate not eating something. 

This reminds me of my own sinful nature and God‘s love for me, in spite of myself. I do not always believe God has my best interest at heart. I do not believe that the struggle that I am currently entering is for my own good. I yell and scream at God in anger because I cannot control the situation. But God loves me and Mason. He is willing to endure because he knows the outcome and I must do the same. I know that this is in Mason’s best interest. I love him and I know the outcome is for his own good. It is not easy. It is not going to be easy but the best things in life are often the hardest to persevere. 

So please continue to pray. Pray for strength. Pray for mercy. Pray for traveling safety for David as he comes to Michigan next weekend. Pray for protection from Covid and finally pray for our journey home.

ARFID JOURNEY WEEK 6 (Nov 2020)

 We knew thanksgiving would be different this year, because of Covid.  Our family (25+) usually gather at our home with tons of food, family, and fun. Our extended family will have their own celebrations and we will eat together over Facetime.  David is planning to smoke a turkey, Mason will begin eating his meals in our room, and I will eat a meal courtesy of a local family.  God is good and provides no matter our location.

Lots of changes this week in the clinic.  I will be training with the therapists to learn the techniques they use in the clinic with Mason.  It is our first step in coming home.  We will do our first practice meals together on Thursday.  After training for two weeks, David will come and be trained as well.  In the midst, Grammy will be training over Facetime so that we have 3 people who can work with Mason at every meal to be successful.  This is a huge step and needs lots of prayers.  Consistency is key both here and at home and is something with which our family struggles.  Mason will only be as successful as we are consistent once we return to the real world.

Finally, this week our adventure was the John Ball Zoo.  Here are a couple of pictures.  Our favorite exhibit was the lions. 

ARFID JOURNEY WEEK 5 (Nov 2020)

Thank you for praying for us during this time.  We feel your prayers and Mason is progressing nicely. Please pray that we do not get COVID while we are here.  The state of Michigan is shutting back down, but we do not go out much anyway. We had a good weekend and visited the Grand Rapids Public Museum and saw a LEGO Sculpture exhibit and the Grand River.  

Mason adds two new foods each week.  Last week he added pancakes (which he likes) and chicken nuggets (which he hates).  They hope to add a PB&J sandwich this week, so he can have options to eat at school.  Next week I will begin my training so that we can continue the program when we get home.  Mason's prayer request would be that time would pass faster.  He misses his dog and his family and wants to be home.

I am doing better.  The shingles virus is gone and my rash is gradually healing.  I would appreciate prayer that I use this time wisely and come back refreshed and renewed.

ARFID JOURNEY WEEK 4 (Nov 2020)

 Thank you for your emails, texts, gift cards, and letters.  They mean so much to us while we are away. This past weekend we visited Holland and Lake Michigan.  It was beautiful weather and we were able to see guys parasailing.  

Mason had a great week in feeding therapy.  He added carrots, a nutritional supplement, and pears to his diet.  Today's first meal was a struggle because he thought they were going to add meat, but they are doing pancakes instead.  Please pray for wisdom for his team of therapists, that they will know how to best help Mason overcome his fear of food.  This morning, his anxiety is very real and was at the highest we have seen since week 1.

I think I hit a mental wall over the weekend.  I have shingles and it is painful and itchy, most likely brought on by stress.  Everything is hard here.  Eating a simple meal or watching TV requires multiple steps.  Thankfully, I have friends and a good husband cheered me up.  In my quiet time this morning, God reminded me I am not alone. Hosea 14:7 (She) who dwells under His shadow will return; (she) shall revive...and grow. If you don't have a copy of the devotional "Streams in the Desert" I highly recommend that you find a copy.  It was recommended to me years ago when we struggled with infertility and it soothes many troubled souls.

ARFID JOURNEY WEEK 2 (Oct 2020)

We have completed our first full week in MI and things are going well.  Mason has a team of eight people helping him reach his goal.  Friday he ate a few bites of applesauce and a granola bar.  Today he ate 3 small bites of an apple.  He earned his first reward (Lego) from the tokens he receives for each successful feeding session.  

We were able to explore a little this weekend and painted pottery, went on a Skele-tour, and got Mason a haircut.  David, Grammy,
and the boys are doing well at home and we talk/Facetime every day.  

ARFID JOURNEY WEEK 1 (Oct 2020)

We arrived in MI safely after two days of driving.  The leaves are changing which provided a scenic drive.  Mason begins his intensive feeding school journey today at noon.  He has only had one moment of "flipping out" which is a blessing.   

The Lord laid on my heart last week the parable of the mustard seed (Matt 13: 31-32).  Our prayer for Mason would be that his faith would grow like a mustard seed during his journey.  Both in God and in his ability to overcome his feeding challenges.  He received a bracelet with a cross and a mustard seed to remind him of God's promises.

A prayer for me is to rest in Him. Matt 11:28  “Come to me, all you who are weary and burdened, and I will give you rest.  

Praises and more praises

Happy Saturday!

We have a lot to be thankful for concerning Mason and Grammy. After 4 months the wound on Grammy's leg has completely healed.  She is very glad to not have me change the dressing on her leg every other day and to take showers without plastic bags.

In addition, she has been cleared to start walking on her broken leg.  It was a long journey, but we truly feel the broken leg was a blessing, as ironic as that sounds.  Her orthopedic doctor said that her wound on her right leg was so severe that she was close to losing her leg.  We cannot say how grateful we are for his excellent attention to both legs. 

Our continue prayer request for Grammy is to regain her strength.  With each injury, she never fully returns to her previous strength or stamina.

It has been almost a month since Mason received a feeding tube.  God has really been with us throughout this change in our lives.  Mason went into the surgery very apprehensive.  His anxiety was very high and he didn't want to discuss anything about it.  He would not allow me to take pictures at the hospital because he did not want to remember anything from his stay.

The surgery itself was quick and he had no complications.  Within hours of the surgery Mason was receiving Pedialyte through the feeding tube and by evening he started with Pediasure.  We cannot express how relieved we feel for him to receive adequate nutrition.  It is a like a burden has been lifted that we didn't realize we were carrying.

By the second feeding, Mason began showing ownership of his feeding tube and the feedings.  We really worried that he would be resistant and stubborn, but this has not happened.  He has done a great job.  He helps us in numerous ways, including reminding us to feed him (new normal), holding the feeding tubes, etc.  It has truly been an answer to prayer.

We were hoping for the "Popeye effect"...you know, Mason eats his can of Pediasure and he miraculously returns to a happy boy with no academic or behavioral issues.  Unfortunately, it doesn't work like that.  We are taking this journey in baby steps.    We do see a happier Mason, which is great, but he still struggles with anger issues and academic struggles. 

We meet with his school this coming Friday to set up his IEP (Individualized Education Plan)...Please pray for wisdom and cooperation from his school.  We also need to find a therapist who specializes in Aspergers, but they are not covered by our insurance. Mason must develop anger management and coping skills before he can begin the feeding therapy at the Children's Hospital in Birmingham AL. 

Thanks again for all your prayers.  We cannot express how loved and supported we feel by everyone,

Mary

Fall Update and Praise - We have answers!

We have answers!

I think our blog is appropriately titled “The Kerstiens Crazy Corner.” It has been a roller coaster around here. In my last post I, Mary, mentioned that my mom was receiving a pacemaker. The procedure was successful and mom was feeling great...then she received a deep bruise on her right leg in September. The bruise turned into cellulitis, which left a nasty wound on her leg. She is wearing a wound vac. In October, she fell and broke her left leg. She is currently in a wheelchair and covets your prayers for a complete and full recovery.

In the midst of all of this, we finally had our evaluation at the Children’s Hospital of Alabama in Birmingham. Just like our visit to Kennedy Krieger (KKI) we had a team of professionals assessing Mason for his feeding issues. To read more about the specifics of the feeding disorder click here→ ARFID They evaluated his medical history, nutritional history, psychological history, oral motor skills, and his mealtime habits.



Their conclusion is that Mason is suffering from chronic severe malnutrition that has stunted his growth. He is anemic and has an iron and phosphorus deficiency. He has no active coping strategies for anxiety or behavioral control over impulsivity. He is probably on the Aspergers spectrum which contributes to the rigid way he handles food.

Wow, that is a lot to swallow (pun intended). Essentially, Mason eats enough calories, but french fries have no nutritional value. When I hear severe malnutrition...I think 3rd world countries...unfortunately, it happens in normal families with extraordinary issues. The malnutrition contributes to the depression, impulsivity and anger management issues.

Now what...the team recommended that Mason receive a G-tube to provide complete nutritional support. He can still eat fries, but he will receive all his nutrients from tube feeding. In addition, he needs active coping strategies. He cannot work to overcome feeding issues until he has overcome some of the psychological ones.

Mason was present for the evaluation and the recommendations provided by the team. He knows that he could drink 5 Pediasure a day and avoid the GTube. He cried a lot on Wednesday but seemed to accept what was going to happen. He knows he cannot drink the Pediasure. He gagged and dry heaved after smelling it (FTR: it doesn’t smell that great).

So we have answers! All his DNA and endocrine tests have come back normal. He has an eating disorder. It is not your typical disorder like bulimia or anorexia, but it is a mental disorder that has caused physical harm to his body. It is in his best interest to have the feeding tube placed before he goes through adolescence. This will take the pressure to eat off of him and us and allow his body to heal. With proper nutrition and therapy, we hope to begin feeding therapy at Alabama Children’s Hospital next year.

Praises:

1. We have answers...though some of them are hard...we have answers@ 
2. Mason’s depression is better. We think it was caused by medication for impulsivity 
3. Barb, our speech therapist, who has guided us through this process and continues to provide recommendations 
4. Alabama Children’s Hospital 

Specific Prayer Requests:

1. A pediatric gastroenterologist who will put in the G-Tube (even though Mason looks healthy) 
2. Therapists that will help him with coping behaviors 
3. Wisdom for David and I as we will now learn how to manage G-Tube feedings up to 5 times per day.

Another door is closed...

We took Mason to Baltimore to Kennedy Krieger Institute.  He was evaluated by a team of people (Occupational Therapist, Dietitian, Behavioral Psychologist, Nurse, and Speech Therapist).  In our therapy session on Wednesday evening, we prepared Mason for the meeting.  He took it about as expected.  Mainly feeling betrayed because we had told him he wouldn’t have to do anymore feeding therapy.  

He slept most of the way to Baltimore, which was a little unusual.  Due to rain and traffic we were late, which added a level of frustration to everyone.  Mason was not cooperating and a little belligerent.  They took his vitals and his blood pressure was way too low.  This is a side effect of the non-stimulant ADHD medication he it taking.  When asked the standard suicide questions “do you wish you were dead?”, Mason answered Yes.  This immediately set of alarm bells for everyone, but David and I had heard this before.  Some of it is depression and some of it is said to get attention.  He answered no to all the remaining questions and was not believed to be a risk at this time.

The team sat down and discussed our journey to this point and evaluated  Mason’s ability to eat a variety of favorable and unfavorable foods.  They recommended that Mason be admitted for an inpatient intensive feeding therapy for 6-8 weeks.  He would have a recovery plan customized to his needs and a team dedicated to meeting his goals. 

This all sounds wonderful, until we questioned them further, specifically the Behavioral Psychologist.  They have no interest in getting to the root cause of the feeding issues.  Their goal is to make the child eat.  If that means sitting with the child, who is in a high chair (even at 10), and holding a spoon in their face for hours until they eat, then that is how they are going to reach the goal. If he eats the food he gets to go play.  If he doesn’t eat the food, he goes to his room or loses other privileges. 

This approach may have worked when he was much  younger, but we cannot see this happening to Mason at 10 years old.  The sensory issues are there and not going to go away.  We can put him into this program and he will do whatever necessary to meet their goals so he can go home.

Mason’s therapist wanted KKI to see him at rock bottom.  He did not disappoint.  Though they offered services for the depression as well as the intensive feeding therapy, at this time we do not feel this is the program for him.  There were too many cons to discuss in a blog post, and we  both have a peace about our decision.  We need to stop and reevaluate before pursuing any more programs.   We have several different options...pursue further PANS testing, have him evaluated by a neurological psychologist, and/or an endocrinologist.  All of which are expensive or not covered by insurance.   Thank you for all your prayers that helped us get this far. Please continue to pray for a clear cut direction going forward.

Mason - April and May Update

Sorry it has taken me almost two months between posts.  When you don't have anything nice to say, it is better to say nothing at all. We are a hot mess.  There!  I said it.  We smile and go through the motions of life, but inside our house we all walk on egg shells.  Anxiety and depression are sucking the life out of our family.  Last week Logan and I sat in the parking lot of school and cried.  We want to fix it and there isn’t a magic pill or button.  Watching you child struggle is hard.  Watching them lash out, feel angry and irritable all the time is heart breaking.  Mason hates school, feels like he has no friends, has frequent headaches, and feels stupid. He wants to behave but has no impulse control, so he is constantly in trouble.  It is a viscous cycle that is hard to break. Mowing grass is one of his only pleasures.

Mason's happy place

We have tried several different types of medication, but the psychiatrist and I agree that they were not working and even causing Mason to become more agitated.  We have weaned him off everything and will try to manage the ADHD symptoms. Suggestions of essential oils (can't stand the smell) and diet changes...come on...really, are no help at this point. We have also tested for PANDAs.  I wished school was over for him.  Each day is more and more stressful and how much are they really learning at this point? 

Mason is scheduled for an assessment next week at Kennedy Krieger.  They will determine if their program is right for him and his specific course of treatment.  He is in such a low place, I worry that now is not the time to try this.

He is currently working with a therapist and as a family, we have reached out to our church for additional counseling.  We have put the wheels in motion, but they turn slowly. People ask how they can help and prayer is the only answer. We covet your prayers as we tell Mason of the treatment plan he will be entering.  We covet your prayers for rest for our family and how our summer will unfold. I covet your prayers for my health as the stress is taking a toll on me.  I will post again after we visit Baltimore to let you know how things went at KKI.

Mary

Mason - March Update

Dear Friends and Family,

Just a quick update to let you know the latest on Mason.  We have talked with all the of the recommended treatment programs and have setup an appointment for an evaluation with Kennedy-Krieger Institute (KKI) in Baltimore for May.  It was the only facility where Mason could attend a day-program and go home with us each evening.

Once the evaluation is complete, we will be put on a waiting list for treatment.  There is a team of specialists that will develop a treatment plan tailored to Mason's specific needs.  In addition, they will train us how to incorporate the treatment plan into our home life.  This is one of the most difficult parts of any plan.  Mason will comply at therapy because he wants to please the therapists.  In addition, he knows that if he eats X then he can leave and won't encounter the food again for a week or so.  In the past, the desired behavior has not carried over to home.  So, if he ate carrots in therapy, he feels safe at home and doesn't eat them.  Finally, we will be closely followed by KKI to make sure that Mason continues to progress in a positive direction,  

We spoke directly with the Feeding Disorder - Program Director, Peter Girolami.  He was very reassuring and explained that a large number of children at their facility came in eating French Fries.  They are a food that appeals to almost everyone.  Through our discussion, he seemed to really understand what Mason is experiencing.  We will know more after our appointment in May.

Please pray for us as we start on a new adventure with Mason.  Again, he does not know this is coming and his anxiety will only increase. Please pray that he looks to God to ease his anxieties.

The Kerstiens

Mason at Discover Place

Mason - February Update

Dear Friends and Family,

We want to thank you all for your prayers.  We have found that the wheels turn slowly when  researching programs to meet Mason's specific diagnosis.  Yesterday we met with a feeding psychologist in Charlotte.  She confirmed the diagnosis of ARFID for Mason.   In addition, she gave us four programs to research.

The psychologist also advised that we not tell Mason until our plans are final.  Mason does not want to do any of this and has high anxiety when the subject is discussed. At school, he received an award for Perseverance, especially in writing as he struggles with dysgraphia.  This characteristic will serve him well in the weeks and months to come.

The first program was at Duke in Raleigh.  When we contacted them, they stated that their waiting list is years long and there are hundreds of names ahead of Mason's.  

We moved on to Kennedy Krieger in Baltimore.  Mary spoke with them yesterday.  Though they have an extensive feeding program, they only see a few children Mason's specific diagnosis.  We are not sure if that is a pro or a con.  The program is eight weeks long and David or Mary will stay with Mason the entire time.  Our next step will be driving to Baltimore for the weekend and have Mason evaluated further. Until this step is complete we will not know how much our insurance will cover, if any.

We liked that we can drive to the first the two locations, but want to find the best program for Mason.  Please keep us in your prayers as we continue researching the other two locations in Wisconsin and Colorado.

The Kerstiens Family