As a nurse, I come across seriously ill people, many of whom rely on the help of a G-tube to get the nutrition they need. Eating for these people is impossible, so through a short procedure called a gastrostomy, a surgeon places a little tube, inserted through the abdomen and held in place with a little balloon filled with water, just inside the stomach. Thinking about a gastrostomy for my little 4-year-old son seemed crazy. I worried about many things - what if Caspian’s autism means he can't stand the tube in his belly? What if he can't sleep at night? As most SynGAP parents know, sleep is a delicate issue. What if he starts eating normally again or will he have to have this all his life? I was overwhelmed with the many running through my head.
Nevertheless, I write this blog post after a week-long stay in the hospital during which our little Caspian received a G-tube in his abdomen, wanting to share our arduous journey with you.
Caspian has had feeding difficulties since he was 6 months old. At 6 months Caspian’s eating troubles began, even though I did not have any problems breastfeeding him. Transitioning to solid foods became a challenge that we never expected. Hoping it was just part of the learning curve, by 12 months we realized something was not right. Concerned, we asked our doctors for their recommendations and any help that they could give us. Not being able to nourish my child in the way that he needed made me feel like I was failing as a parent.
Once we were finally accepted into the assisted medical system we received wonderful help from a speech therapist. By 18 months, Caspian started nibbling on select foods—yogurt, baby food, broccoli, mostly pureed foods — a welcome victory. Our momentum continued and by 2.5 years old, Caspian started eating well. I was able to safely stop breastfeeding. It was also around this time our son was diagnosed with autism which contributed to the clarity of why he was experiencing challenges with food.
Caspian ate well for a few good months! However, after that wonderful period, we noticed Caspian started to be more specific and picky with food. He would find a favorite food, like sausage, toast or a blended nut/date/cacao treat, and only eat those for a week or a month. We accepted this as he maintained his weight and had plenty of energy.
Caspian’s epilepsy diagnosis at age 3 posed a turning point in his eating habits. It took months to find the right epilepsy medication, and while experimenting with meds, Caspian’s appetite disappeared. For many days he would only eat a sausage, or on bad days he would not eat at all. As a result, his health slowly declined, motor skills regressed and Caspian struggled to reach his milestones. His energy got so low that we had to pause ABA training as he only had enough strength to watch his favorite shows. This is when I started to worry that Caspian might need a G-tube, and decided to exhaust every possibility first.
The next big setback for Caspian was a month before his G-tube operation. In an attempt to control his seizures we put him on the medication Lamotrigine. Once we started this medication, Caspian completely stopped eating. He also experienced side effects like increased nausea and exhaustion. During this time he was admitted to the hospital for dehydration and stayed overnight receiving fluids. This was our first overnight hospital stay. It was also when I started to view a G-tube more as a welcome option than a dreaded outcome. We took him off Lamotrigine, but Caspian did not recover fully; he continued to eat and drink poorly.
We had a meeting with epilepsy specialists in Göteborg to try and figure out our next steps. We spoke about trying the ketogenic diet for seizure control. We noticed that when Caspian stopped eating his body naturally went into ketosis and his seizures were reduced. We decided Caspian was too weak to tolerate any changes to his medical regime, so we postponed the Keto decision. We also discussed his selective eating and how much we struggle with food. These factors led the specialists to suggest a G-tube. After I had tried everything else to help my son, we decided that it was in his best interest. Our doctor sent off the referral, and in two months Caspian was to have his operation.
Caspian continued to struggle. He didn't want to eat, was lethargic, and did not go to school. We were lost and anxious for him to have the surgery . Our level of concern rose and we called our doctor for emergency advice. They instructed us to go to the emergency room.
Caspian was admitted to the hospital and given an IV to rehydrate him. Our team of doctors decided that we should give him a temporary nasal gastric tube until his G-tube operation. Despite receiving a medication to relax him, our usually quiet little Caspian screamed and choked in pain, as he fought the NG-tube. Unable to give him the necessary nutrients, our doctors expressed the need for an emergency gastrostomy.
We feared this would be the case. Our thoughts and feelings were all over the place. On the one hand, Caspian wasn’t dramatically underweight and would on occasion want to eat. However, the struggle with food had been going on for three years at that point and this operation felt like a finish line. I will never forget how exhausted and weak Caspian was as I held him in my arms. How could we humor any other option when this was our reality? I talked and cried about my fears to one of the wonderful nurses the night before the operation. She completely understood and said, “Chloe you have been struggling with food for over three years, Caspian needs this tube to give you peace of mind and so he doesn't get so weak every time he stops eating. He can have the tube for a short time or a long time, you really are doing what's best for your son.”
Our son is non-verbal—he can not speak for himself—so it is always a guessing game. I must be his voice; must see and feel when he doesn't feel good. Doctors can not ask him “where does it hurt?” It is always, “Mum, where does your son hurt?” and while I am in tune with my son's signs, sometimes I worry that I am guessing and perhaps I am not making the right decisions for him. It is so hard, even right now when everything is good again I still wonder if what I am doing is enough or too much? After fasting overnight, Caspian went in for his operation.
The operation took an hour, a few hours later our little man was awake and responsive. The day after his operation he was allowed to start feeding slowly through the tube. We started with some electrolytes first and then every few hours gave him 50 to 60 ml of formula. Thankfully he managed to keep this down and we slowly increased to 200 ml per meal, or about 200 calories.
We were in the hospital for another four days, during which Caspian had most of his meals through the tube. The doctors and care team were able to closely monitor his feedings and ensure a successful recovery. We were very fortunate to have received wonderful care!
By the end of the week we were able to go home and Caspian regained energy fast! We hadn't seen him so energetic since before his epilepsy diagnosis. To our surprise, five days after his operation he spontaneously started eating... Lots! This initially gave me mixed emotions as I wondered if we had made the right decision. I now realize this was indeed the right decision as we now have a backup plan if Caspian ever decides to stop eating again. We can ensure that he will get the necessary nutrients and prevent him from becoming lethargic or dehydrated. Caspian is now able to start a ketogenic diet since we can bypass any problems by feeding him directly with the tube.
Fortunately, Caspian hasn't had much pain. Like many SynGAPians he does not express pain neurotypically, so we have been watching for any indications of discomfort. Just to be sure, he was given regular doses of Paracetamol (acetaminophen) for the first five days post-op.
He is now running around like an active four-year-old, regaining strength after many months of not having the energy to do more than simply rest. The G-tube doesn't seem to bother him at all, and feeding him with the tube has been much easier than I imagined. Thankfully, we have not had to feed him via the G-tube for a few days now as he is eating via mouth regularly.
I am sure we still have plenty to experience and that will be something for future posts. For now, we are enjoying our energetic happy Caspian whom we have not seen for quite some time. I can say I am happy we have the G-tube for emergencies, as it gives us a peace of mind, knowing Caspian will always be able to receive the nutrition he needs.
Video by Chloe of her family doing Cycle4Caspian 2020, a 420km ride around the Swedish lake Vättern to raise funds towards Syngap1, Epilepsy research!