Waiting, Starstruck and More Waiting

A full two months have passed since your first appointment at Southern California Food Allergy Institute - that appointment was incredible on so many levels. First off, meeting the team that we had waited two years to meet was finally here, I was starstruck when I first saw Dr. Randhawa walking around, I had to remind myself to breath, I mean this is the brain behind healing you!  

The clinic was not at all like I was expecting. 

Walking into the Clinic for the 1st time.

You were so happy, knowing that this day was finally here. We were the only patient in the waiting room. 

It was very understated and we were one of two patients the entire day. We talked with the team for four hours! They shared information with daddy and I that we had never heard of before, which was shocking because this would be the 21st doctor that you would see, what could this doctor possibly tell us that we haven't heard or learned through our own research? Well it was a lot. The team noticed we arrived with a binder filled with different tabs that detailed out your labs, reaction history, supplements, pictures, graph and trends, etc. They said, "a binder comes with a story." That's an understatement. Since the first day of life we have been fighting to attain optimum health for you. From jaundice and projectile vomiting to bleeding eczema and constipation and then excess mucous/constant congestion and random and severe allergic reactions to sensory processing disorder and GI issues. The list goes on and on and all of these do not come with a "look." From the outside, you look like a "normal" toddler. You are social, adventurous, funny, intelligent, witty, coordinated, persistent, a leader and very focused and driven.  Daddy I and are so excited to work with a team of doctors that can heal your insides so you can live like a normal toddler and focus on learning and playing without fear and sickness.  

You were very accepting of Dr. Randhawa -
a vast difference from your lack of openness with other doctors.
  

After your appointment, you were exhausted.

After talking with the doctors for hours, daddy and I felt mostly overwhelmed but a sense of hope, that you are in the hands of a team that will work to heal your body.  After having our minds blown by the team, next you had to endure many tests including allergy skin testing and loads of blood draws.  That same night, as we flew back to Maryland, we reveled in a feeling of hope so great, you could cry! That feeling was short-lived though, as you would have two more reactions just days after your consult appointment, and to seemingly safe foods. Daddy and I, again feel hopeless and thought, "what do we feed you?"; "how do we parent a child, we don't know how to care for?"; "will this get better?"; "will you have a reaction to this food today?" We immediately consulted Dr. Randhawa and he guided us into removing additional foods from your already very restricted diet.  Then we waited. 

Another random reaction came with itchhing and hives.
We managed it with emergency meds
and the reaction did not progress. 

Dr. Randhawa determines this reaction is to soy,
a food you have been eating for years.

It seems like we are always waiting with you, from being born at 42 weeks to waiting for lab results, doctors, referrals, etc., we have mastered the art of patience that one must have parenting and caring for you. After we received some of the lab results back, we were told you needed to have an endoscopy to rule in/out some GI disease. Next we searched and searched and finally found a GI that would do the procedure without putting you on meds for 8 weeks preceding the scope. Now we waited for your appointment. A few days before your appointment, you came down with pneumonia! 

At your ped, and your oxygen saturation was 93,
so you had to do your first ever breathing treatment.
A few more followed that day until your oxygen reached 96. 

Your first time ever needing antibiotics, which would require us to reschedule your scope procedure. MORE WAITING! I could scream or cry or both. The pneumonia was very scary, but you took to the antibiotics well and without any reaction. And now we waited for the rescheduled scope appointment...

"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!

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. 

Sensory Issues - The Low Down Dirty Truth

After a solid year of what I will refer to as extreme picky eating habits, you completely fell off of the growth charts for height and weight. You had always been around the 50th percentile and when you basically stopped growing due to restricting your food intake, I knew I had to take action. In January 2017, we had you evaluated by professionals to see what in the world was going on.  They watched you eat, well you didn't really eat, but they had enough information to conclude that you had some sensory issues surrounding food.  Finally, I had a diagnosis and we began to work up a plan to help you manage your issues and hopefully start eating, start eating  a variety of foods and most importantly have less anxiety around food.  Occupational therapy or OT weekly sessions began in February 2017.

Each week, I meet with your OT, Alex. I extract everything I can from her in order to help you at home. Over the past five months, I have learned so much from Alex about these sensory issues - first off, the technical term is called SPD - Sensory Processing Disorder. This neurological disorder causes the affected person to perceive the sensory information differently than a "normal" person thus resulting in abnormal responses by the affected person.  Experts estimate that approximately 15-20% of kids have this disorder.  "Gifted" children are often affected by SPD. The majority of kids with environmental and/or food allergies have SPD. It cannot be addressed with medicine. It does not go away, rather the affected person must learn to cope. Therapy, especially early on in life is ideal.  Boys and girls are impacted equally although 99% of the people going to the center we go to are BOYS! Boys apparently exhibit behaviors more externally, where as girls are more likely to internalize. Girls often go undiagnosed.

SPD is incredibly challenging to understand.  This is partially because there are so many senses and there are so many different ways they can be sensed. A child with SPD can be hypersensitive, undersensitive or seek senses or any combination of these  There are a lot of different outcomes, so a one size fits all just doesn't work. There are not just five senses like we are taught as children. There are eight sensory systems and then endless types of senses.  For example, every bite of food someone takes, requires 32 sensory processes to occur! If any of those senses are out of sync, there can be issues. If there are issues surrounding food, this could result in a child (or even adult) not eating "wet" food, fruits, vegetables, soft foods, hard foods, purees, colored foods, pasta, or any combination.  Kids with sensory issues that go untreated especially around foods often grow into teens and adults with issues that can result in low self-confidence, physiological issues, anxiety and the list goes on and on.   The key to get kids with sensory issues surrounding foods to eat more varieties of foods is to basically revert back to them being a baby. Let them play with it, touch it, talk about it, get comfortable with it. If the child won't touch the foods or play with them, they certainly won't eat them. It is a process.

This chart is helpful to identify behavior patterns that correlate to children with SPD

Kids with SPD that have food issues WILL NOT eventually eat, no matter how hungry they get. They must be given foods they are comfortable with.  Kids with SPD often have big issues with transitions and need significant advanced prep about change. Kids with SPD are not giving us a hard time, they are having a hard time.

Kids with SPD can appear to be completely "normal" and then BOOM! Something changes and there is a meltdown that lasts for hours, yes hours! It's unpredictable and often cannot be recreated. It makes identifying patterns in behaviors and inputs extra challenging - how on earth do you parent that?! LOTS OF LOVE is the only and best answer.  Oh and did I mention therapy!

If parents think their child(ren) may have minor, moderate or severe sensory issues, I encourage them to visit this amazing website and check out The Out-of-Sync Child.

Carageenan - What is that "Safe" Ingredient in Our Food that is "from Seaweed?"

As we have and continue to significantly improve your gut inflammation, I am slowly beginning to turn every stone, every ingredient, what are all of these strangely-named items listed in the ingredients that we eat? I know they are "safe" from an allergen perspective, but what the hell are they, really? I will start with Carageenan, long name, but easily pronounceable.

Often an ingredient in non-dairy alternatives and deli meats and labeled with "made from seaweed" - but why and what is the purpose? After doing some digging, Carageenan does come from a very specific red seaweed and is added to give the taste of "fat", thicken and stabilize - I don't want to get into the depths of the science pool here, but it's unique chemical structure triggers an immune response when ingested, which in turn causes inflammation, bloating, cramping, IBS, colitis,

eczema, leaky gut and seriously the goes on and on, over 100 inflammatory diseases are linked to Carageenan. Over time, inflammation has a damaging effect, in it's most severe form, it rears it's ugly head as cancer.

After a little more digging, this "safe and natural" substance has been used for sometime to induce gut inflammation in lab animals in order to test anti-inflammatory meds. And now food manufactures are adding this to milks, creams, yogurts, soups, cheese, meat, sauces, etc. etc. I see you Whole Foods and you too Trader Joes, you two are some of the worst culprits of this utterly GROSS practice.

The good news is there are alternatives to these foods that include this immune triggerer. A quick scan of the ingredients (start backwards, you're more focused in the beginning of a reading a food label) is very telling. The bad news, this one can be hidden in "natural flavors."  So we will simply do our best and utilize a great food buying guide if we buy processed foods.

Cheeri-OH NO!

Cheerios, that's a staple breakfast cereal you enjoy about twice a week, you love them! And I have always loved them because 1) they are safe for you to eat and 2) they are gluten free.  

The opened and unopened boxes have now been trashed and I WILL NEVER BUY AGAIN!

You may ask, what changed? Why such drastic measures mommy?  Well, listen up.

For about the last year, our team has been working hard to get your gut health and gut inflammation on track in order to curb the autoimmune impacts and prevent any further issues. The effort everyday that is required is pervasive. We have made several changes to the way our whole family lives. The biggest change is that we have become a gluten free house, which I do have to admit, I pride myself in, because I have become a rather savvy gluten-free baker.  Why gluten free though? It seems like this is just a wild trend sweeping the nation the past few years, but this is all for good reason, given that the increase of gluten-intolerance and the use of Round-up (herbicide) are highly correlated.

Well, very simply put, I was under the impression that wheat, malted barley and rye (all contain gluten) were doused in that nasty Round-up herbicide, which has been known to cause systemic issues over time to the body, despite Monsanto (the maker of Round-up) denying this fact.  Going gluten free significantly reduces the levels of this nasty chemical that over time WILL have negative impacts on everyone that consumes it. The science behind this is now more clear than ever.

So what's at stake here? In a new scathing report issued in February 2017, studies show the impacts of low levels of Round-up/glyphosate causing the following:

• Endocrine disruption including disturbances to reproductive development
• Lower IQs
• Obesity
• Autism
• Cancer
• Antibiotic resistance
• Alters the balance of the gut microbiome, which can lead to Celiac, IBS and other autoimmune diseases

The report also lists the biggest offenders, the foods with the highest levels of the toxic chemical, which includes gluten free foods, such as Cheerios, Lucy's and Annies.  Cheerios though by far exceeds all of the other foods in levels of glyphosate.  So all this time, I though gluten free foods would protect us, they too are now laced.  

So what can we do? We are making great progress with your immune health and now this blow. 

The solution is actually simple - go organic. Organic foods are prohibited from being contaminated with herbicides like Round-up and pesticides alike, which will protect us from this incredibly harmful chemical. 

Picky Toddlers: What is "Normal" and What is Not?

For about the last 20 months you have been an incredibly picky eater. As a fresh one-year old, you were eating pomegranate and beets to mango and all beans.  You loved carrots and potatoes as well as those damn squeeze pouches, which you have coined as "sauce." I will talk more about those sauce pouches later, but for now, back to the real foods.  You have never been a messy eater, not even with your 1st birthday cupcake. You like your napkin close by and clean hands and face.  Now at two-and-a-half - you do not eat any vegetables or fruit, that's right none. You don't eat beans, foods with color, new foods are absolutely out of the question. Foods that once were a staple are now trashed after each meal. You currently eat about ten foods. Yes, only ten. You also become very overwhelmed and anxious with a fight/flight response when too much food or new food is presented. Other scenarios cause unprompted outbursts, landing all the food on the floor and you refusing to eat at least for that meal and often beyond.

So this is all "normal" right - I would often ask friends and family. All of them said yes, totally normal for a two-year old.  Similarly to how you would projectile vomit several feet your first year of life - friends and family also said that was normal, in case you are wondering, it is not.

Then in October 2016 we paid the doctor a visit - just a regular visit and learned that you fell off your weight curve and have not grown in height in a long-time. It was time to take action.  I did my research and found one center that I thought could help. A play-based feeding therapy clinic. I made your appointment - it was a 3-month wait.  Finally, the appointment came, two doctors assessed you while you played, ate and interacted.  The appointment ended and I waited for your assessment.

The report came, confirming my suspicions - your behavior and development with/to/around food was abnormal. I learned that there are 32 stages developmentally to eating. Not so good news is you are at stage two/three/four for all foods except the ten you tolerate. The good news is the doctors think they can help habilitate you with time and a focused effort.

We went for your first appointment in February 2017, you met Alex, you had fun and painted with applesauce. And so our journey begins, with the end in mind.

Playing with Alex at Feeding Therapy

Building rapport with Alex 

The point of this post is, when you think something is not "Normal" with your children, seek help and don't listen to other people just because they have had kids before. They haven't had your kid. Go with your gut.