July 21, 2017

"Picky Eating" Update - Week 23

You have now been in OT for tactile defensiveness (sounds intense, right?!) regarding food for 23 weeks! We have been very consistent and go every Thursday for one hour. Each week the therapist, Miss Alex lets you play in the amazing gym for 10-15 minutes, which loosens your body up. Sometimes she has super fun obstacle courses that even I want to get in on. She has this special way of getting you excited about everything she has planned for you. You quickly become engaged and excited. After the physical play releases any anxiety that your 3 year-old body may be holding onto, you and Miss Alex head over to get down to business with the foods.  After 30-45 minutes of food therapy, you and Miss Alex come and share what you did for the session, which includes a summary of mood, willingness to engage, anxiety triggers, attempts at eating, etc. After each session I make a summary and while I must admit, progress seems very slow, the log I have created has really helped show all the progress made thus far.  So while you may not be full on gorging on lasagna and salad, you have come so far in 23 weeks.
The gym at the center is full of super fun equipment 

Feb 2017:Getting to know Miss Alex in the Gym
April 2017: Obstacle course time

This was my very first entry, summarizing your overall status currently:
"February 9, 2017 -  Jahan does not want new food in his space. He accepts approximately nine foods. If any foods other than his accepted foods are presented at the table he gets anxious and often shuts down, and does not eat at that meal and often that carries over to missing the next one to two meals. This results in hours of crying, depleted energy and impacts every family member at every meal. Jahan relies heavily on pouch baby food. Approx. two at each meal. Jahan will not fall asleep by himself in his bed. Will not use a blanket. He will not touch wet foods. He gets anxious if new people are around when he is eating and then has a meltdown that can last hours. He often skips meals, about 1 per day. He relies heavily on milk for caloric intake. He will not eat any fruit or vegetables. Jahan is constipated most days and goes three to four days between bowel movements.  He has many rules around food, including using only certain utensils, his seat, sitting in laps, eating outside, downstairs, etc., eating with certain plates, bowls, etc. He does enjoy helping prep food.  Jahan was always around 50% for height and weight, he has now fallen completely off both curves. This behavior began around 18 months old and before that you appeared completely comfortable with food."
Feb 2017:Playing with food - it took you two sessions to engage
Feb 2017: Playing with other "sensory" bins and toys helped get in the mood to play with foods

Wow - looking back at this, I realize how much you needed intervention. Of course I wish we would have started earlier, but honestly everyone would tell me this "picky eating" was normal toddler behavior and eventually you would eat. Most people do eventually eat, but not for kids with sensory disorders. They don't eat unless one of their accepted foods is presented without any anxiety surrounding it.  Therapy is giving us the tools to help you and you the tools to help yourself. It's teaching you how to cope with situations that may be uncomfortable and cause anxiety.

Fast forward 23 weeks:
May 2017: Playing with wet foods, but with a spoon
July 2017: Engaging with food and having fun doing it
"July 13, 2017 - Jahan is comfortable with food being in his space that is new including foods that he may not eat. He is learning about all types of foods. Helping cook when possible, picking fruits and veggies out at the farm and can now state most of the foods by name and there are a lot of them. Jahan is excited to help prep food and has tried mushrooms, corn, grapes, dried strawberry, dried banana, dried apple, pepperoni, chia seeds, prunes and mashed potatoes. Jahan is comfortable touching lots of wet foods now.  He has added grapes, corn and chia seeds in his diet regularly.  He engages with many foods now, despite not yet eating them.  His comfort around foods that formerly caused significant anxiety has drastically decreased.  His anxiety with new people being around while eats is gone. He no longer skips meals. His constipation is gone with the exception of a few days where it did come back. He has also started using a blanket to sleep. He is falling asleep in his own bed now on his own.  His rules around certain cups, bowls and utensils are gone. He does request the cup be full and the plate have a lot of food although he doesn't drink or eat it all. When he is anxious he puts a lot of rules in place. When this happens, there is no real intent of eating until the anxiety is put to rest by resetting his system with heavy work concepts.  He hardly eats baby food pouches.  He loves his yogurt, chocolate or vanilla. He now allows chocolate chips and chia seeds in his yogurt.  He is fully potty trained and has transitioned into preschool without issue or anxiety of any sort. Jahan has gained four pounds and is now 36.5" and is back on both curves."
June 2017: Happily despining wet green swiss chard

The progress made is incredible. Our family hardly feels anxiety around meal time like it used to. More often than not, meal time is a fun enjoyable experience.   I know this process and confronting these feeling head on is challenging, but you are far exceeding my expectations - we are so proud of you Jahan!

July 20, 2017

Why is Asthma So Feared By Food Allergic People

Five! You have had five reactions recently that have made me scratch my head, lose sleep and ultimately come to no conclusion as to how on earth these could have occurred. There was no food eaten within one to two hours of the reactions. The foods that were eaten I fed to you again after the reaction to ensure a new allergy did not develop or there was no cross-contamination. No reactions.

I continue to scratch my head and lose sleep. I have tried identifying patterns during these reactions. A few things come to mind. Majority occurred after exercise or when a big shift in temperature occurred.  But you exercise all day everyday and there are temperature shifts all the time. Hmm, well that is all I have come up with. Wait, there seems to be another pattern, the reactions have also occurred in spaces that are carpeted, four of which were not in our house. I have always correlated these reactions to trace amounts of allergens on hands that somehow ended up in your nose or mouth. Maybe it's something else. Maybe it's not.  After doing some digging - maybe it's asthma. Something in the environment you are allergic to and then it is set off by exercise or shifts in temperature.

And now, another reaction, this time, sudden and constant coughing and then wheezing. No vomiting this time. I give two puffs of the inhaler meds that Hopkins prescribed after discussing the recent reactions. The wheezing quickly subsides and the coughing slows. After 15 minutes the coughing dissipates. Could this be that these reactions that mimic food allergic reactions are actually asthma attacks?

ASTHMA - so scary as a parent of a child with many severe food allergies. Why though? Virtually ALL of the deaths that occur from food allergic reactions are in people that also have asthma.  And now we may be in the food allergic and asthmatic bucket.  Having asthma and controlling it either with functional medicine or conventional medicine is manageable and seemingly not that scary so long as you recognize symptoms and treat it.  When you layer on food allergies, it suddenly becomes something else.

So why are the people that have fatal food allergic reactions asthmatics? I can say every one of these five reactions mimics the beginning of food allergic reactions. Sneezing, coughing, wheezing, vomiting - that's how it all starts. So at that point in the reaction, if I guess it's airway distress due to asthma and give the inhaler, and I guessed wrong and we lose time, valuable precious time, that could be the difference between life and death. This is often the case for the fatal cases. The food allergic reaction was treated with asthma meds instead of epinephrine.

As your parent, I must learn everything I can about this in order to be able to quickly and effortlessly react in an instant. I must guess right every time. I must educate myself so I can educate others, most importantly you.  Jahan, as challenging as this journey is that we are on TOGETHER, I wouldn't change any of it.  While I do not enjoy seeing you in distress, I am thankful for the opportunities that all of this has brought to me. You are helping me learn so much, you have helped our family become so incredibly healthy, you have helped both daddy and I become much more understanding towards families with special needs. For all of this, we are thankful.