Yes, I have a low tone baby and no, she does not eat!

I haven’t blogged for a while.. or perhaps it has been months. Squeakers is now almost 15 months old and I am not going to lie, it has been a struggle. So many ups and downs and anxiety filled days and nights. Things were going well after I had started the Domperidone for milk supply and little Squeakers was gaining weight. Then I had started solids at around 7 months. She initially liked the homemade purees and then I noticed around 9 or 10 months that she wasn’t really interested in eating solids. She didn’t want me to feed her with a spoon. It seemed as if she was pushing the purees out with her tongue and fighting me so I researched and talked to some other moms and changed to baby-led weaning. I ordered a baby-led weaning cookbook and bookmarked websites on my computer and thought that I had found the answer! She was eating whole foods and chunks of food by herself; blueberries, mandarin slices, broccoli, cucumber, pieces of chicken, blackberries, yogurt.. we were on a roll.

Then, it hit. Around 11 months, everything stopped. She started refusing everything that I offered her. She took food and threw it off her tray onto the floor. I bought suction cup bowls and utensils that promoted self feeding; no luck. I bought a silicone mat with divided sections and a new booster seat for eating; no luck. I tried different types of food, different textures, different sizes, different flavours.. and no luck. She stopped eating altogether.

It was and has been quite a stressful time, having a low weight baby and one who does not eat any type of food and only breastfeeds. She has always refused to take a bottle so I have not been able to supplement her. She will take sips of goat milk from a sippy cup or small glass, but not enough to keep her going. In the past 14 months, I have been able to be away from her for about 4, maybe 5 hours. I am slowly breaking down.

After struggling with her weight gain and in turn, increasing my weight gain out of stress, I was finally overjoyed when she weighed 16 pounds. What an accomplishment! Then in the past 2 months, she has not been eating and has dropped to 15 pounds leaving me feeling defeated and wiped out.

I have continued to try different types of food, textures, colours, presentation, different bowls, cups, spoons, forks, seats, locations, all of which have not improved her eating. All along, I have kept wondering what is wrong with her; why does she not eat anything? I had to convince my family doctor to refer her to a paediatrician. Oh and did I mention that she wasn’t meeting any of her motor milestones? So to add to the stress, she has not started kneeling, pulling to sit, standing, crawling or walking. From my background and training in occupational therapy, I had a feeling this was not good news.

Over the past few months, Squeakers has been seen by a paediatrician, 3 dietitians, 2 occupational therapists, 2 physiotherapists, an osteopath, a craniosacral therapist, a naturopath and a neurologist. Everyone with the same conclusion, she has low muscle tone or hypotonia. This, I knew to begin with, based on my own assessment of her and my own knowledge and training in occupational therapy. However, it was reassuring to hear from the neurologist that because she is low tone and because she scoots around on her bum so efficiently, she will likely not walk until about 2 years old. It was also interesting to discover during the OT feeding assessment that she likely has decreased sensory input to her mouth because of the low muscle tone. Thus, she needs more sensory input than the average baby to feel like there is food in her mouth and to illicit a chewing response. So, food that is crunchy, chewy, textured, salty, spicy are all more likely to be tolerable to her.

All along, people have asked about her and I have had comments such as “is she crippled?”, “will she ever walk?”, “how old is she, she is so little?”, “you baby her, that is why she is not walking”; I could go on and on. While these comments are not only ignorant, they are quite hurtful. Clearly I am aware as her mom and having a background in health care, that she is not meeting her milestones. Obviously if there is anyone who is worried about her, it is me.

So, to explain, low muscle tone does not necessarily equal low strength. Her hands and legs are actually quite strong as seen when she picks up a heavy water bottle or kicks with such force into my stomach. Low muscle tone simply means that her joints are loose and lax. Picture as if her joints are made of spaghetti, so she is extremely flexible. This laxness or flexibility makes it hard to sit up and sit straight. It makes it difficult to sit upright to eat. Picture trying to exert the effort to crawl or stand when your joints feel like spaghetti. It’s not easy! (You can Google “low muscle tone” or “hypotonia” or read about it at: http://www.skillsforaction.com/low-muscle-tone).

I have worked as an OT in paediatrics and I have treated children with hypotonia and low muscle tone in the past. However, since it is my own child, I have found it hard to be objective without my anxiety taking over. And my anxiety has reared it’s ugly head again making me feel weak, less of a mom, useless, and not in control. It also does not help that I have had to deal with a constant barrage of negative comments, as if I chose this to happen to my child. It has been a challenging few months filled with contradicting messages: keep breastfeeding, stop breastfeeding, only offer solids, let her go to sleep hungry and she will be hungrier in the daytime, decrease the Domperidone, stay on the Domperidone, feed her every 2 hours, feed her every 3 to 4 hours. What is a mom to do?

The only thing that has kept some of my sanity has been to follow my gut. When in times of despair and confusion, follow my gut. (Also, some guidance from my Angel cards, my life coach, and performing self reiki has been invaluable!). My gut told me that her iron was likely low and that she needed a blood test. I begged and pleaded and got a blood test done. Sure enough her ferritin level was 10 when normal ranges were 100-300. She has started iron drops and I am hoping that her levels will improve. When babies have low iron, it can make them lethargic and lose their appetite. I am waiting to see if her appetite improves.

I have tried to focus on the breastfeeding and getting others to feed her the solids. With all of my stress, my milk supply began plummeting again despite being on a high dose of Domperidone. I have been unable to wean her off of the night feeds because she is not eating enough during the day. I have yet to have even 6 hours of sleep. I have put my health needs on hold despite knowing that I am in adrenal exhaustion with high cortisol and SIBO and that my body needs to rest. I am hoping that I will soon be able to rest and heal my physical body. I am working with a health coach to address my anxiety, emotions, and the mind-body connection behind all of this. Most of all I am trying to stay strong and positive. And yes, there are days where I seem more stressed out and more negative or defeated, but I am human after all and entitled to those days. I have never been one to fake that I am okay or to not discuss my struggles openly.

The only thing I can do at this moment in time is to stay calm and keep on keeping on. Like those annoying British sayings that I see on t-shirts and mugs. After all, most of this is beyond my control. There is nothing that I can do to make Squeakers eat. At one point, I did try to squeeze her cheeks and shovel food in; however, that ended in her spitting everything out and screaming.

I cannot change the fact that she has low muscle tone or decreased sensory input to her mouth.

I cannot change the fact that she is low weight and is not meeting her motor milestones.

All I can control is my attitude and my emotions and try my hardest not to be the stressball that I have been over the past few months. I have tried to look for the lesson or message in all of this. The only thing that I can come up with is that I cannot control everything around me. Although the Type A in me wants everything to be neat and orderly and follow the same schedule and routine every day, Squeakers beats to her own drum. She does not follow any sense of routine or predictability. I have to accept this. I have to accept that she is her own person and that there is NOTHING WRONG with her, despite what the milestone charts say. This is who she is in all of her stubborn and strong willed glory. I cannot change this. I cannot control this. All I can do is offer her my unconditional love and support knowing that:

In this moment, she is whole and complete and loved.

In this moment, I am whole and complete and loved.

And so it is.

 

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About newmom78

I am a mother to 2 beautiful girls with a degree in Occupational Therapy. After suffering a miscarriage of my second child at 5.5 months pregnant, I have decided to change and simplify my life. This blog is about the chronicles of my daily life with my daughters as well as the laughter and frustration that goes along with trying to be "super mom" and play numerous roles; wife, mother, daughter, employee, friend, and student.
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2 Responses to Yes, I have a low tone baby and no, she does not eat!

  1. Sheena D Kurian says:

    Wow girl…thanks for sharing and being so transparent. We suffer the exact opposite with Zachary….although we don’t have nearly half of the struggles that you shared….we deal with him having sensory issues…being super stiff….HYPERTONIA…is what they call it. We did all the testing they requested as well and they didn’t find anything neurologically but you can definitely see it when he walks/runs, etc…its been hard on me because of course as a mom you need to know all the whys and how to fix it….and sometimes…there are just no answers,…and so we keep pluggin on! You got this! Don’t give up!

  2. Kristin says:

    Sonia. What you wrote is beautiful and heartfelt. You are doing everything you can for your daughter and she is so lucky to have such a wonderful OT mommy. Speaking from experience, I believe women like us were chosen to be the mommies of kiddos who need extra support because God knew we’d be the perfect choice to take care of them. Your mantra about your daughter being loved hit home with me. Love is the single most important thing we can show our kiddos and your beautiful daughter is surrounded by it. How blessed you both are. ❤️

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