As a parent with a lactose intolerant baby at one time in life, I started my search for dairy free alternatives a long time ago. When we were first diagnosed with Kian’s condition, I was upset at the thought of him missing out on milkshakes, ice-cream and all the other ‘good’ stuff I knew he would enjoy, but when I looked more in depth at the facts, I realized that it’s not just 1 of my children that could potentially live a healthier life if they don’t consume dairy.
Higher dairy intake has been linked with high cholesterol levels, diabetes and several cancers as the primary milk protein (casein) has been proven to be susceptible to cancer initiating carcinogens.
There’s no doubt that the calcium levels in the lactation fluid are high but a recent study published by Dr. David Ludwig and Dr. Walter Willett from Harvard, showed a lack of evidence on the government’s recommendations that we should all be drinking 3 glasses a day and found no data to support the claim that the consumption of dairy leads to better bones, weight loss, or improved health.
Do you have any dairy alternatives? We’d love to hear from you! Use the comments section below or send me a message through our contact page (top right) or the ‘Submit your Story’ page.
Whenever we are lead into a false sense of security by the children and dare to revel in their accomplishments, the universe seems to have a sneaky way of teaching us a lesson and reminding us it’s the little one’s that are in charge around here. For example “hey the kids are sleeping great!” – cue screaming fits at 1:00 am, or “have you noticed there’s much less food on the floor at meals times?” – cue flying bowls and porridge dodging at 7:00 am, and “the kids haven’t had a cold for ages!” – cue snotty noses for the next 6 weeks…you get my drift.
So it’s with these strange cosmic forces in mind that I have hesitated in writing this post for a while because I was scared that if I publicized what I am about to tell you, the universe would conspire to punish me for bragging! But, here we go – Kian has been off his reflux medication for a month! Yes! A month! And I don’t care if you’re listening Universe, I’m saying it loud and proud to all of our friends who read this blog as some parents with children suffering from reflux may just need some motivation to the finish line!
It’s been over a year since Omeperazole ‘the wonder drug’ changed our lives and I don’t regret for a second starting Kian on the medication. It improved his health within 2 weeks and our baby got to live a life as pain-free and healthily as his sisters. Of course, I was never fond of administering it to him every day but I knew it was for the greater good and that this day would come that I could tell you he has finally grown out of the gastric disease and no longer needs to rely on Omeperazole to get him through the day.
I am so very grateful to the doctor’s, dieticians and medical staff at our local surgery and hospital who have diagnosed, advised and supported me through both Kian and Kaira’s treatment and to my family and friends who have wiped my tears, kept me strong and told me to never give up my hopes of his recovery.
I have blogged several times about our experiences with reflux and I like to think I’ve helped people through here and Instagram too. I will always endeavour to advise people on the subject as it is so close to my heart. Thank you for sharing our journey with us.
More of our blog posts regarding reflux can be found using the search term ‘reflux’ in the icon with the magnifying glass or here:
Love from Leyla
Weaning is such a complex issue for parents with children who suffer with a gastric disease and I have written posts about our experiences with reflux previously here and here. With my first born beauty, I was so excited to get her started on solid food when she was around 5 months old and I’d sit and plan what vegetable I was going to blend next with the same excitement I used to reserve for online shopping and spa days.
With Kian it was different. Because I knew he was struggling with his digestion, for both lactose intolerance problems and silent reflux, I was terrified of what I could and should feed him. At this point, the twins were around 5 months old and I hadn’t yet had an appointment with a dietician, but with lots of research online, in books, through friends and from trial and error, I learned what they could and couldn’t eat.
If you already have a diagnosis for your child’s reflux and are about to enter the wonderful world of weaning, then you will notice certain reactions to certain foods and soon learn to avoid them. Most babies readily accept any first foods and I find that beginning with dairy free baby rice mixed with a baby’s own milk a great place to start. From there, I mixed in puréed pear or parsnip as I found these foods to be the only ones tolerable by my reflux babies at first as the acid in many others were too harsh for their digestion. From mixing them with baby rice, I then went on to giving the fruit and vegetables on their own, after they had begun to like the new flavours.
Another of the problems with weaning reflux babies can sometimes be an aversion to anything solid going into their mouths as a result of months of battling with their bottles. Kaira really struggled with the feeling of a spoon in her mouth and gagged a little for the first few weeks but with very gentle perseverance, eventually she got used to it. Giving her a spoon to suck on in between mouthfuls helped her gain a sense of control in the situation and provided a useful distraction.
Here’s what we learned:
- Start with- pear, swede, potato, honeydew (yellow) melon, parsnip
- Progress to – banana, broccoli, sweet potato, spinach, blueberry
- Avoid – apple, raspberry, pineapple, strawberry, tomato, citrus fruit.
If you start with the above and give it at least 3 days before introducing a new food from each list, you’ll know what is causing any reactions (diarreah, crying, constipation etc) so you will know to eliminate that particular item from their diet (keeping a food diary could help with this too). I have to say that if you are beginning to wean a baby with suspected or diagnosed reflux, things will get easier. Kian didn’t manage to tolerate any of the food in the ‘Avoid’ category until he was around 10 months old, to give you an idea of how long it can take.
I still regret not noticing Kian’s symptoms when he ate some of the above sooner. I was giving him food with apple in and he would scream for hours, before I realised what was causing his pain. I hope I can help other parents avoid going through the misery I did while weaning reflux babies with this advice.
If you have bad experiences with bottle feeding caused by the disease, then I promise getting your baby/ies onto solids is a great step in the right direction! Please leave any questions or comments below or contact me direct from my ‘about’ page. I will write more about weaning including recipes and equipment in further blog posts.
* update – as a lovely friend of mine on Instagram reminded me after reading this post, some babies can react badly to cereal in their diet as it can cause constipation, which flairs reflux. If your child is constipated, it’s best to restrict cereal and stick to puréed fruit and vegetables alone until they’re older.
Love from Leyla
Reflux is something I am asked most about through my blog and Instagram, so I have wanted to write a post about the signs to look for in a baby for parents who are worried their children may need a diagnosis for a while although finding time is as easy as finding treasure for me! But today daddy is home, the twins are napping and Ariana is watching Frozen for the 75th time with him (lucky daddy) so I’m good to go…
Initially, I just want to chat about reflux and it’s definition. The full name for the condition is gastro-oesophgeal reflux disease or GORD in the UK whereas in America it is referred to as GERD as they spell oesophagus without the O. The literal meaning is ‘backward flow’ and so describes the literal inability of the body to prevent the stomach contents travelling up into the oesophagus.
I’ve learned a lot about the disease from one of my best friends who’s children have suffered with it too (love you Laura!) and from reading online and talking to doctors and pediatricians and it’s hard to remember a time that I didn’t understand terms such as ‘GORD’ and ‘sphincter valve’ but I would like to elaborate here because I know when I started on this journey, I felt completely lost so I’d like to fill in blanks for anyone who is struggling like I was a year ago.
From what I understand, the sphincter acts as a valve at the bottom of the oesophagus that opens to allow food into the stomach. When this doesn’t function properly (as in people who suffer with reflux) the contents including stomach acid flow back into the oesophagus and sometimes up into the throat, which comes out in vomit and when this happens over a long period of time, it can cause damage to the teeth, nasal passages and lungs and as it happened with my baby, this long term exposure can cause severe complications resulting in hospital admission and long-standing aversions to food.
There are so many signs that a baby is suffering with reflux, although I had NO idea when the symptoms started to present themselves with Kian and Kaira. I’ve talked about how they were diagnosed in a previous blog post, but in brief Kaira was projectile vomiting and Kian was fighting his bottle so we eventually worked out that we were dealing with 2 types of the disease – reflux and silent reflux. Each equally disturbing and heart breaking to watch my babies suffer with. Without going into detail about our personal experience here (I’ll save that for another time), here is a list of the symptoms that I noticed with my babies starting with Kian:
- Inconsolable crying – I think Kian cried all day, every day for about 4 months, which must have been due to the acid burning his body
- Disrupted sleep – eventually I learned to prop the head of his bed up on books underneath the legs but for a long time I couldn’t understand why he cried so much in his sleep, but this must have been due to the acid travelling up his oesophagus while he was flat on his back
- Wet hiccups – Kian hiccuped a lot and they always sounded wet, which is hard to describe but he would cry in between, again due to the acid
- Very hard to wind – I had no idea that this was a sign of reflux at the time but have since heard that babies learn very quickly that anything that comes up hurts so they tend to tense their body and try to stop themselves burping
- Arching his back – when he cried he would do this a lot, I can only guess that this was because he was trying to pull himself away from his heartburn (I get upset even now at the thought of this)
- Fighting his bottle – at one point, I thought he was angry because he was hungry but now I know that Kian screamed every time he saw his bottle because he knew how much pain it caused him to ingest his milk. It was very, very hard to get him to take his feeds before his symptoms were medicated but I’ll talk about our tips on feeding a baby that fights his bottle in another blog post
- Continually pulling away from the bottle (or nipple) – as above
- Poor weight gain – both the twins suffered with this
- Noisy sleeper – Kian would grunt and snuffle all night and I later learned that this was because of the acid
- Clenched fists – a reaction to the pain, both twins suffered with this.
- Bouts of choking – Kaira would be sick quite often when she was sleeping so I was always terrified she could choke on her own vomit. I kept the bed raised during this period
- Will only let mummy do feeds – I was the only one who Kaira trusted enough to give her bottles. She would scream if anyone else tried, which I think was a trust issue. We never knew when she would vomit so she was scared to be in anyone else’s arms
- Vomiting – either during or after a feed, I would keep Kaira as still as possible but now and again I would hear a ‘clunk’ sound that signified to me that she was about to project her feed, which would go very far so the house was covered in towels to catch it in case it happened every time I fed her. She would get very distressed and the vomit would come out of her nose too, causing her to panic and stop breathing completely for a few seconds until it cleared again. All I could do was hold her upright and calm her with my voice and cuddle her until she stopped crying when the episode passed (whilst trying to stop myself crying too, most of the time)
- Poor weight gain – both the twins suffered with this
- Clenched fists – a reaction to the pain, both twins suffered with this.
Looking back at that list, I can’t believe that I didn’t know sooner that my children had a disease but when you aren’t sleeping and have no experience in a disorder such as this, you just have no idea what is going on. People would say to me ‘oh mine posits all the time’ and I’d think ‘yeah maybe this is normal’ and carry on but deep down I knew something wasn’t right.
In my experience, it was silent reflux that was the hardest to both diagnose and treat as the symptoms were not as obvious at first as there was no vomiting that I could see, the damage was going on inside Kian’s little body and of course he couldn’t tell me what was going on. I knew he was in pain and my instincts were telling me he needed help but no- one was taking me seriously. I would cry in the doctors surgery waiting room and feel completely helpless, but I never gave up, I remember us having 4 appointments in 1 particular week. I am just very grateful that our health visitor came to see us one day and noticed his aversion to his bottle and referred him to my GP who finally started taking us seriously and referred us onto a pediatrician.
What I want to say is this – if you’re reading this because you suspect your child or children may have some of the symptoms above, go to see your doctor. Don’t hesitate. There’s a common misconception that a lot of babies suffer with what doctors like to call ‘colic’ but from what I’ve learned, I think this is a way for doctors to get (what they would consider to be) overly worried parents out of their office with a vague diagnosis for their child’s irritability but new research now suggests that it is reflux that they are suffering with. How sick children and their distraught parents are dismissed with this misdiagnosis without basic investigations is beyond my realm of comprehension.
I was told ‘don’t worry they’ll grow out of it’ time and time again, which is easy to say for people who have no idea what watching babies scream in pain all day long feels like. I can’t tell you the lengths I would go to, to help my children and getting the twins diagnosed with reflux was the biggest mountain I have climbed in my entire life. I feel like all 3 of their health is in my hands and I don’t trust any medical professional over my own instincts when it comes to their well-being.
Go to your doctor, go to your doctor a million times and don’t leave without a diagnosis and the right medication. Or go to the accident and emergency department at your local hospital and refuse to leave until you’ve seen a pediatrician. We were placed on a 4 month waiting list to see a specialist after getting diagnosed by our GP (FOUR MONTHS with 2 sick newborn babies who weren’t feeding? – Thanks for that NHS!) and there was no way I was waiting that long. I would have screamed as loud as my babies if I had needed to in those busy waiting rooms. Believe me – your children (and ultimately you as their parent) don’t have to suffer.
More information can be found on the NHS website but I just want thank you for joining us in our experience with this horrible disease. I know some families are on much harder journeys than ours and I hope these words are of some help to any parent going through what we did, but if you would rather speak to me direct, please send me a message through my about page or leave a comment below.
I will write about the medication that helped us in another blog post.
Love from Leyla
Omeperazole needs no introduction to anyone who has children suffering with reflux and have been diagnosed the medication but when I first learned that Kian had the disease and tried to find out more about it online, all I did was read scary side effects, which weren’t the most helpful to a mum like me who had only 2 choices – to let my child suffer in pain or to take my chances with the drug that doctors kept telling me had not been licensed for use in children.
For me there was no other option, like most parents I would move mountains to make my kids happy and I knew that if I didn’t get Kian’s silent reflux medicated, we were looking at some serious short and long term affects from the acid constantly burning his oesophagus so we started him on Losec Mups (Omeperazole) almost a year ago and haven’t looked back since.
It is a proton pump inhibitor or a PPI and the advice given to me by the paediatrician that prescribed it was that all children react differently to it, with some it takes immediate effect and others see an improvement after 7-10 days. I have mentioned in a previous post that Kian’s silent reflux was left undiagnosed for a long period of time, which resulted in a trip to the casualty at our local hospital before he finally received a diagnosis and it was the prescription of Omeperazole that was the turning point in our little boys life.
He was already taking Ranitidine and Domperidone at the time of diagnosis and so we continued to adminsiter the same medication during a brief cross over period until we could tell that the Omeperazole had taken effect. With us it was 14 days before we saw Kian stop fighting his bottles and start drinking his milk properly without being in obvious pain and I very nearly rejected giving him the new medicine completely a few times because I thought it wasn’t working but I’m so glad we persevered with it.
I have been asked several times to do a blog post about how we prepare and administer the drug so I wanted to detail it here. From what I gather from speaking to other parents with children suffering from GORD, Omeperazole is prescribed in 10mg tablets, the amount given is in accordance with the baby’s weight and severity of symptoms. As we are reducing Kian’s dosage at the moment, I use a knife to cut through the tablets into the correct size (so I half them for a 5mg dosage and half the 5mg again to give him 2.5mg). Before he turned 6 months old, I would use cooled, previously boiled water but after 6 months, I used cold, filtered tap water from the fridge, I find that the tablets dissolve better in cold water.
- With clean hands, add water to a small cup (we use a lid from Domperidone bottles)
- Place the correct dosage of tablet inside a syringe with a wide hole (we use Calpol or Nurofen syringes)
- Replace plunger part of syringe and use it to draw water up inside itself
- Allow tablet to disperse, this usually takes around 10 minutes
- Shake syringe regularly, making sure to cover the hole with your thumb
- Place baby on their back and gently slide the syringe into their mouth, aiming to the inside of their cheek
- Depress the plunger slowly, allowing the baby to drink at their own pace
- Draw up more water and repeat process until all of the small balls are completely swallowed.
I found the hardest part about giving this drug is that it needs to be taken on an empty stomach with an acidic content. The instructions given by our doctor were it had to be given 30 minutes before food, which isn’t easy particularly if their first dose is to be first thing in a morning (those 30 minutes seem like a very long time when there’s 1 or 2 babies screaming in hunger waiting for their breakfast!) My advice is to give the medication after their first feed of the day, so we fed Kian his first milk of the morning and then waited until he was just about to go to bed for his morning nap (at least 1 hour later so his stomach had emptied) and gave him his just before he went back to bed, which meant that his medicine could take affect as he slept and we could feed him his second bottle as soon as he woke back up again.
It’s important to know that this medication is something that once it’s started, there needs to be a significant withdrawal period under medical supervision as the acid pump inside the baby is slowly turned back on again. In my experience, reflux surges when Kian is teething and has a cold and at other times too, so I would never attempt to reduce his dosage until I knew he was in good health. I would also hate to miss a dosage too. This medicine has been a life saver for us and not just for Kian but for the rest of the family too. Watching him in pain for the first few months of his life were the hardest time of my life so I understand anyone who is starting on this reflux journey will need as much support from their paediatricians or GP’s as possible.
I am not an expert and I never want to sound like I am trying to come across like one! I have no medical experience other than taking care of my own children but I will write more about living with reflux, feeding a baby with reflux, helping them to sleep and the other medications that helped our son in another blog post. I just want to reassure any parents going through what we have, that you’re not alone and things will get easier when your child is given the correct medication.
Omeperazole has been described as a ‘wonder drug’ and I can definitely vouch that Kian was like a new baby when we got his symptoms under control and 12 months later, we are starting to reduce his dosage and hopefully will be able to take him off it completely this year.
I feel extremely grateful to live in a country where we have access to medication such as Omeperazole to help our children and my heart goes out to parents who live in other parts of the world and don’t. Please feel free to send me a message from my about page or comment below if you would like any further advice. More detailed information can also be found on the NHS website.
Love from Leyla
I always knew that having twins would be a challenge but nothing prepared me for having two poorly twins suffering with a gastric disease. I wish I could look back on Kian and Kaira’s first few months of life with more happy memories than the ones I have but it was such a worrying time and that was mainly because of GORD.
I had no idea what was happening to my babies when their symptoms began. I would just hold them and cry and I’m filling up now just at the thought of the helplessness and desperation I felt as a parent watching my children suffer, not knowing how to help or where to turn so I’m hoping this blog post might help other parents going through the same experience and if you are, then you definitely are not alone, please leave your comments below and I’ll help in any way I can.
It was Kaira’s symptoms that were more prominent in the early days after their birth. When she started projectile vomiting all of her feeds, we knew there was something seriously wrong and my initial worry was Pyloric Stenosis, which thankfully wasn’t the case. I spent hours trawling Google, researching the types of medication that could help Kaira and although it wasn’t a good situation for one of my best friend’s to be in at the time, I was given amazing advice from a fellow twin mum called Laura with children with the same problems so by the time I saw our doctor, I knew exactly what would help our little girl.
Initially she was prescribed Gaviscon. As anyone with babies who have or have had reflux will know, this was a complete waste of time, serving only to make her constipated until she screamed for hours on end and continued to vomit all of her feeds, which were every few hours at the time. Unfortunately the meds I knew she needed have not been trialled on babies and so are not licensed for their usage, however Kaira was not keeping any of her meals down and I would have tried anything to help her, so after begging (and at one point crying hysterically at the receptionist of our surgery), one doctor took pity on me and sent me away with Domperidone. This was a huge turning point for us as Kaira finally began to keep her feeds down and continued to grow.
For Kian it was completely different. He had always been a windy baby and we have spent hours over the past year pacing the house trying to get wind out of him before he could be settled to sleep (I’ve later learned this is a symptom of silent reflux). But after a couple of months, he started to fight his feeds and although hungry, he would arch his back and go red in the face screaming at the sight of his bottle. Obviously with another baby to feed at the same time, this was soul destroying for me and I honestly had no idea what was wrong until our health visitor picked up on the fact that it could be silent reflux.
Unlike Kaira’s symptoms, Kian wasn’t outwardly vomiting but silently regurgitating the contents of his stomach (acid and all) up and down, burning his oesophagus constantly causing his pain that we just didn’t know about. He would look into my eyes at times with nothing but fear in his little face, my poor newborn baby wondering why he was in pain and maybe why his mummy wasn’t helping him. It really breaks my heart to know that if I had been more aware of the symptoms (which I will document on another post) I could have helped him before things got so bad we actually ended up in A&E at our local hospital.
The day we had to take Kian into hospital is one I’ll never forget. It was a Monday and that weekend we had already been to our local Walk In Centre to see an emergency doctor as he had refused all of his milk feeds overnight and I was worried sick. Completely dismissed and sent away feeling like a hypochondriac, we continued to try to feed him over the weekend but all our poor boy did was scream and sleep so on the Monday morning I tried again to get help from another doctor, only this time we were sent away with antibiotics.
It was that same Monday night that things went from bad to worse, it had now been 3 days since he had drank any milk so we asked my mum to look after the girls and took Kian to hospital, which turned out to be the best thing we had done as within a couple of hours, we had seen a pediatrician and his silent reflux was confirmed and medicated along with a possible lactose intolerance.
This was all around the Christmas of the year they were born and I’ll never forget the date we were given for an appointment to see a pediatrician – the 25th March. If it wasn’t for the kindness and compassion of some of the doctors at our surgery, I really fear our babies would have been hospitalised and fed through tubes so I am so thankful for them and for the support we had from our family and friends. I think they saved our lives, and if not our lives, our sanity for sure! I will post more detailed information on the milk and medication that changed our lives in another post.
Love from Leyla