Entry Seventeen- “The Outliers”- Eat

Until it happened to me, I didn’t fully appreciate the stress experienced by parents of children who struggle with eating.

I was able to breastfeed Olivia without any issue. Oscar of course was different. Since the day he was born Oscar had to be supplemented with formula. I would first breastfeed and then top him up with formula after to make sure that he had had enough to eat (he had low blood sugar and was mildly jaundice at birth). I tried EVERYTHING to solely breastfeed Oscar. I saw a lactation consultant and used a “SNS” (Supplemental Nursing System), herbal supplements (fenugreek and blessed thistle), prescription medication (Domperidone), and of course pumping all along. I should mention that this was all pre-diagnosis. When things were still “normal”.

I remember I went to see the lactation consultant on a Friday and she said “you know what, you have tried everything, I think that it is okay for you to stop trying to breastfeed. If you are looking for permission to stop, I am giving you that permission. It is okay.” It had been such a struggle and I think I was looking for “permission”. I left feeling relieved. That Sunday was when everything changed and Oscar had his first seizure.

During our first inpatient hospital stay was when an Occupational Therapist noticed that Oscar was struggling with the bottle. She recommended the Dr. Brown’s bottles with the Level 1 nipple. Apparently you don’t need to burp the baby with this bottle which means that the baby doesn’t have to change positions mid-bottle and then re-orient themselves. It makes it “easier” for them to drink. He used the Level 1 nipple for over a year. Oscar then transitioned to a Level 2 and then jumped to a Level 4 nipple which is what he is currently using.

Initially, our Occupational Therapist suggested that we wait until he is sitting independently before introducing purees. He wasn’t sitting, but at 9months the Occupational Therapist felt like he had enough stability and with some extra support we introduced purees. He definitely wasn’t “eating” pureed foods, but we started exposing him to different flavours at that time. Because my son has difficulty with motor planning, she recommended that we feed him 4-5x/day. Not only was this time consuming (worth it!) but it was also very stressful because it was 4-5x/day that I would watch my son struggle to eat. Around 1 year we introduced “soft solid foods” like bananas and avocados.

Writing it down it seems like a slow, seamless transition, but we struggled!!!! I would sit and watch him purse his lips so tight to avoid anything going in his mouth. I would literally pry his mouth open to put food in. I would watch him hold food in his mouth for MINUTES, not swallowing, not spitting it out, not pulling it out with his hands, just holding it. The food would either eventually drool out, he would swallow it or I would take it out because I was worried that he would choke. I would have to repeatedly remind myself “Don’t force feed”. When your child has a low weight and you watch them not eat it is so difficult to abide by this principle. But to say it was difficult watching my son not eat, not swallow is an understatement.

Today, he eats reasonably well at some meals and not so well at other meals. He has transitioned to a primarily solid food diet, but he is funny with certain textures.

I want to share some things that I have learned along the way that I believe have helped Oscar and I am hoping that they may also be helpful for you.

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Meals You Can Count On

Do you have a meal that you can count on your child eating? I have found several meals that I can count on Oscar eating. For example: Fish, macaroni and cheese, yogurt, lightly toasted bread with butter, apple sauce, cheese, crackers and there may be a few others. I make sure that Oscar has one of these “meals I can count on” every day. Purely for calories, not necessarily for nutrition. That way, I know that he will eat a decent quantity of food at at least one meal. I also want to challenge his taste buds and to vary the textures that he is exposed to. So, I like to try to do one “challenging meal” or “challenging food” item per day. Of course my preference would be that he eats an appropriate amount of food at every meal, but he doesn’t. So this is the system that I have tried that seems to be working for Oscar (at least right now).

I will also use one of these “meals I can count on” when he is tired or when we are in a different environment. For example if we go to a restaurant I will take one of these meals because I know that my son will eat. This not only allows me to have an enjoyable dinner out but more importantly allows Oscar to have a positive eating experience in a different environment. I may also use one of these meals or food items at lunch time which tends to be his most difficult meal of the day.

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Distracted vs. Focused Eating

This totally depends on your child! I remember one time I had to take my son to a doctor’s appointment during mealtime. At that time he was really struggling with eating. I had a puree with me and I was trying to feed him when another family walked in and I thought “Oh, great, it’s over, he for sure won’t eat now.” So I smiled politely and turned my son away from this other family, apologizing for my rudeness but explained that my son would be otherwise too distracted to eat. When I turned him away, he happened to be facing the television and all of a sudden he started eating one bite after another. He had NEVER eaten this quickly before.

I mentioned the above to our Occupational Therapist and she said that normally she would never recommend eating in front of the television but gave me the okay to try it. I did try it again at home and he was too distracted by the television to eat! For my son, sometimes distracted eating works and sometimes it doesn’t. Now, I usually start with focused eating (no distractions other than typical mealtime conversation) if he is struggling I will sing different songs to him. My son is also obsessed with the Frozen 2 soundtrack (thanks to his 5 year old sister) so we do listen to that soundtrack during mealtime. Like I mentioned lunch seems to be difficult for Oscar because he is getting ready to nap so it tends to be a more musical meal.

Nutrition

I am not a nutritionist!!!! But I do believe in proper nutrition. I think that providing my kids with the proper food (fuel) is very important for optimizing their development. “Eat the rainbow” is what people say. I do find it challenging to accomplish this at every meal, but over the course of the day I ensure that my kids eat something orange, green, blue and hopefully red. This is one of the reasons why I like to make soups or my “smoothie oatmeal” (check out my instagram for the recipe @arealmomstory) it is a way that I can get many different colors into one dish. I have been known to put pureed spinach in blueberry banana pancakes (try it- you really can’t taste it). Even making a comfort food like macaroni and cheese I will add cooked chopped spinach or shredded zucchini and carrot.

I believe that by having a proper diet you can optimize a child’s ability to develop by giving them all of the proper nutrients their bodies need to succeed. I need to do everything no matter how small it may seem to give my son the best chance to be successful. Check out my instagram @arealmomstory as I will continue to post recipes that my family loves.

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Supplements

Since I am a believer in nutrition, I knew that when my son was being solely formula fed there had to be something that I could add to fortify his formula for brain and muscle development. I consulted with a naturopath. I am only informing you of things that were suggested for my son after consulting with first a naturopath and then sending all of the suggestions to Oscar’s neurologist to ensure that it wouldn’t interfere with his medications. Before trying anything that I have written here consult with your child’s pediatrician or specialist!!!!

The truth is, I don’t know if these things are helping Oscar. The only way to truly find out would be if I had had 2 of the exact same child and had given supplements to one and not to the other and then to wait and see if one child had faired better. This of course is impossible. So, I look at Oscar and see that he is doing much better than was expected and I think that it could be partially related to these supplements.

Anyways, here are the supplements that we give Oscar every day:

• SON Formula- (for muscle development) a raw amino acid, he gets 4 crushed tablets/day diluted in his milk. We prepare his bottles every night to allow the tablets time to dissolve in his milk before giving it to him the next day.

• Children’s DHA- (for brain development) now that he is bigger he gets 2mL/day (we also put this in his milk at night).

• Vitamin D- He still gets 400iu of Vitamin D daily

I am not an expert or pretending to be one. I just want to share some things that seem to be working for Oscar right now. I hope that you have found this to be helpful! I just want to remind you to please consult with your child’s pediatrician or specialist before trying anything new with your child.