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.