Tears, Pain and Suffering: Reflux One Year On

People (neighbours, Internet forums, newspaper articles, dieticians and paediatricians) told me that J would grow out of his reflux when he was weaned about 8-9 months old.  Great I thought!  Naively, I believed them.

 

Once his reflux was under control I figured that would be it.  Wean him at 6 months (some talk about weaning early because of the reflux) and then stop the drugs a couple of months later.  I think that the false hope, the created expectations and the, “Why is this not happening for me?!” is a dangerous game to play with a sleep deprived mummy.  Again the trivialisation of reflux by the medical profession, the media and society has led to frustration, feelings of isolation and failure and a determination to protect my baby against the world of preconceived judgements.

 

This is a follow on post to our personal story: Tears, Pain and Suffering – A Newborn with Reflux. If you would like to read that first please click on the link.

 

I’m not going to focus on the middle months, but to briefly tell you that they were a rollercoaster rreflux one year on J on a brick trolleyide of reflux flare-ups, medication adjustments, lack of sleep, teething, colds, medical appointments and very little weaning.  J just wasn’t interested in food.  We would have a couple of days where he may eat (throw food around the room and smear it all over his face) a little puree off of a spoon and then he was ill or teething and that would stop.  Then in August the spoon became an evil object attempting to enter his mouth.  Most likely as a result of him understanding that the syringe was full of disgusting medicine, but not being able to distinguish between the two.  We had the odd success with some finger food (Organix carrot sticks) on the odd day but for the most he was just not interested.

 

I am going to start our story up again in October.  We returned from a lovely family holiday in Spain in the middle of the month to J still not eating.  Now 10 months, we were well past the 8-9 month over his reflux stage and hubby and I were feeling lost, frustrated and helpless.  Not with J I hasten to add, but with the situation and of not knowing anyone else in the same situation.  I would worry like mad that he was never going to eat and I was going to be going back to work and J was going to go to nursery and what would they think?  Would they not take him because of it?  I was under the impression that we would have to stop the Neocate at 12 months and I worried like mad what we were going to give him.  We couldn’t start the milk ladder as he didn’t eat.  To be fair now that I look back at it, I wasted a lot of time and energy worrying about something I had no control over, but in my defence I was tired and all the other babies that we knew were moving onto 3 meals a day and cutting down their milk intake.  I just felt scared that no one was there to help and I didn’t know what to do.

 

Things went downhill not long after we came back from our holiday.  J actually started to try and eat (finger food only).  Hubby and I were over the moon!  Finally, an interest.  The excitement didn’t last long.  Seconds in fact before the sickness started.  This became a pattern that quickly intensified the worry to almost breaking point as far as I was concerned.  Every time J ate he was sick.  There was a baby weigh in clinic a couple of days later and I took J hoping to see my very supportive and encouraging health visitor.

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I know many people don’t see eye to eye with health visitors or find them supportive or helpful, but we are one of the lucky ones.  Our health visitor has been nothing but supportive and encouraging of our trials.  She hasn’t tried to push us to do anything we weren’t happy with and instead has been on our side and taking J’s case to meetings with the GP and calling the dieticians on our behalf, so she was the one I turned to for help.

 

Unfortunately, she was on holiday (this was now October half term).  The HV at the clinic listened to my worries and was concerned that J was not able to swallow the food.  Contact the hospital she told me.  I tried that – they were all on holiday.

 

A couple of days later, I took J to the under 1s group at the Children’s Centre.  I told our nursery nurse what was happening and she tried to reassure me.  Then J ate a breadstick in front of her.  Inevitably, he was sick. She was shocked. “That is not normal! There’s so much sick!”  She told me I needed to make an emergency appointment with the Paediatrician and was very concerned.  I went home upset.  My husband and I decided that I should hand my notice in at work.  I needed to be around and looking after our little boy.

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I managed to get a paediatric appointment for 10 days later and I was so relieved.  Surely they would help?  However, I left the appointment more frustrated and helpless than ever.  The paediatrician was condescending.  He labelled me as a worrying first time mother who was making a fuss over nothing.  “He’ll grow out of it.”  “The next one will be easier.”  I was angry and there was nothing I could do.  He told me to stop the Omeprazole if I was worried that had given J a spoon phobia and see what happened.  Well Mr Paediatrician this ironically was the best thing you said because it drove me to the edge and then I tumbled right off it.

 

We did indeed stop the medicine.  A week later, J was screaming in pain and only comforted when I held him upright, just like when he was a baby.  Once again I could smell the acidic stench on his breath and one night in December I had enough.  I had to be at work the next day and I was up for hours holding J.  The tears just started falling and they wouldn’t stop.  I was hysterical, my whole body was shaking silently as I clung to my sleeping baby.  I felt helpless, I felt alone and I felt like a failure.  Once again I couldn’t protect him from this evil condition.  I couldn’t protect him from the pain and the suffering that he felt.

 

I feel it is very important at this point to add that I wasn’t alone.  I have a wonderful husband and mother who were doing every thing they could to support J and I.  If I didn’t have them then this breaking point would have been much earlier.  However, at that moment in time, sat in the dark and feeling helpless I was alone in my feelings of failure and helplessness.  Eventually, I made it to my husbands side and woke him up and he comforted and reassured me and promised to call our GP, the one who initially diagnosed J, first thing. thumb_P1040113_1024

 

During that call the GP wanted to see J immediately, but hubby persuaded him to wait until the next day when I could take him.  I told the GP what had been going on over the past few months and he listened attentively.  He told me that the sickness after eating was caused by the reflux (why had this never occurred to me?  Or more importantly the Paediatrician?) and that he should go back on the Omeprazole immediately.  When I told him about having to at times almost pin J to the floor to administer the drug and that I wasn’t prepared to do that anymore he was horrified. Our GP changed the drug to the tablet form to be dissolved and then added to J’s milk.  He since told me he has stopped prescribing the liquid now.  He also gave us Gaviscon sachets to add to J’s milk.

 

It took a couple of weeks of adjusting and tweaking the meds but the GP listened to what I thought J needed and adjusted doseages accordingly.  Finally, the week of Christmas, we got the dosage right.  J slept for 7 hours straight for the first time ever on Christmas Eve night.

 

On 30th December, J started eating.  Only finger food and only baby snacks. What would we do without Organix?  Hubby and I were over the moon!  It only lasted 10 days before J got ill and then the eating stopped for 5 weeks.  We then had a similar length of eating before illness got in the way again.

 

 

The last 3 months this has been our ongoing battle, so last Monday, under the guidance of our wonderful GP, we made the decision to pull J out of nursery on medical grounds.  We are hoping that he can have a lengthy period of healthiness which will build his confidence with food.  At 15 months we are still only on a limited number of baby snacks but fingers crossed we can now start moving forward.

 

It upsets me how many tiny, innocent babies have to suffer from this condition.  I wish that more research could be done to help them and that drugs that taste nice could be made to treat the condition.  I think it is great that all antenatal classes now have to cover reflux as education will help parents to recognize the signs quicker.  If you have a friend, or family member who has a baby with reflux please understand that they may be suffering in silence and help them in any way you can.  I have a lovely support network of family, friends, health professionals and I don’t know what I would have done without them.

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Cuddle Fairy
Diary of an imperfect mum

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21 comments

  1. You have been an absolute trooper and so has J. We, your friends, have been horrified to see what a devastating impact reflux has had on all of you. Hopefully pulling him out of nursery and giving him the chance to recuperate at home will be just the ticket xx

    1. Thank you! I hope so too. Friends are invaluable in times like these and I have found out who I can really rely on. xxx

  2. Wow, your amazing! I hadn’t realised that reflux was that awful. We were very lucky to not have any issues with this, but now of course, if I come across anyone who is experiencing this I will know…. well… just how much is involved. Thank you for sharing your experience. Everyone’s circumstances are different, but I imagine that him being at home is the best thing for him. #TwinklyTuesday

  3. I can understand how tough this is for you. After months of being ignored when I said something was wrong with my baby daughter it took her choking on her own reflux and turning blue on 3 occasions and many trips to A&E before I was taken seriously and investigations began and she was put on Omeprazole for silent reflux and a floppy trachea congenital throat defect which was complicating the problem. She had just turned 6mths old at this point and I was so sleep deprived, at my wits end and scared that I was at point where I thought there was no-where to turn. We were put straight onto the tablets which I crushed into her milk at night. Things did settle down after a few months and by 1yr old she was eating properly but favoured ‘solid’ finger foods over purees and wet food – which makes sense as that stays down better. However she stayed on the medication and it was only a few weeks ago when she turned 2yrs old that I weaned her off it fully. However, if she gets any kind of cough she is so, so sick constantly proving she still has the weakness there in her throat and I suspect that won’t change until she is much older as she develops and gets stronger.

    I know you have heard this a hundred times before but it WILL get better – you are doing all the right things and the Omeprazole is clearly helping because of the regression your son had when you took him off it (I did a similar thing at around 1yr to see what happened and a lot of the symptoms came back) Hang in there and take it one day at a time. As long as your little boy is happy and growing don’t obsess over what he is eating, my elder daughter barely eats anything and she is strong as an ox and taller than any other girl in her school.

    From a Mum who has been there and understands sending you lots of strength. #TwinklyTuesday

    1. Thank you so much for your supportive response 🙂 Your poor daughter! I’m so glad that they finally listened but it is ridiculous that she (and you) had to suffer so terribly before any thing was done. It makes me so mad that there is so little support and awareness out there. Will they operate on her throat ro improve her trachea? I am glad to hear she is now eating. It is a relief to hear a positive outcome and gives us comfort and hope. Thank you again, I really appreciate your words xx

  4. Thank goodness you’ve such a great support network, and a wonderful GP. I know that feeling of helplessness as my son had reflux too, but fortunately with him, weaning was the answer (and before that sleeping on his tummy or in the sling). It took quite a while after he started eating food before we had less sick (and we still have some now at 16m) but he’s so much better. Wishing you all the very best; it is a horrible condition and I hope J gets better soon.

  5. Thank you! I’m sorry that your son has suffered too, but am glad that he has been helped by weaning. It has been a long journey but I am hoping that a positive end isn’t too far away.

  6. Oh man, you guys have had a rough time! The GP’s condescending remark makes me so angry! No one should question a mother’s instinct or concerns for her child regardless if it’s her first or tenth! Also, being told they will grow out of something is completely useless for the situation at hand. I’m glad you have pushed & continued to seek help for your son. I hope the meds keeps him able to eat & that he does eventually grow out of it. Until then keep up the amazing work you are doing!! Thanks so much for joining us at #bloggerclubuk x

    1. Thank you for your support! You are quite – if the medical professionals who are so cynical focussed on the people instead of the science maybe they would help people. That’s what my GP did and he helped us loads. Thanks for reading x

  7. This makes me really upset that you had to go through all of that for such a long time without medical professionals actually seeing what was really going on! I’m so sorry you’ve been on such a rollercoaster ride, especially with J being your first born! I can’t imagine the frustration and stress You and your husband must have been going through! I’m glad things are on the road to recovery, let’s keep our fingers crossed! Fantastic that you are raising awareness! I shall share this for you now! Xxx #BloggerClubUk

    1. Thanks Sassy for sharing and for being so supportive 🙂 Hopefully someone will read this and feel less alone and see light at the end of the tunnel for their own situation. x

  8. Somehow I missed this last week. I am so sorry that you’ve had to go through all this – that paediatrician sounds awful! I really hope that he continues to improve and that illnesses stop setting you back. You are coping so wonderfully and are such a brilliant mum.

  9. Unfortunately some paediatricians don’t listen to parents. We have also experienced this and it is so frustrating as we are the experts. We are the ones there every single day. This must have been so a stressful experience for you and I hope now that you have found the right medication and that your little man can grow in confidence with his food and start to eat more. TY for linking up with #FamilyFun

    1. Thank you. I’m sorry thst you too have experienced this. I’m sure that your frustrations have been much greater than mine as I imagine you have to deal with a wider range of professionals and I’m sure they don’t always agree with each other let alone you! 🙁

  10. Hugs Mama!! Reflux is awful! Two of my babies had it. One had projectile vomiting with it and lasted until about 15 months, but he is still a very picky eater. My daughter also has it, but it has always been silent reflux. She continues to struggle with it and she is 2.5 years old but also has cerebral palsy. I am glad you have a good support group to get you through!! Hang in there!!!

    1. Oh I’m so sorry to hear that you have had to experience this awful condition twice and in both forms. Your poor children. I hope you have lots of support, especially if they are still suffering and I hope that they are making progress, even if it is just little steps.

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