I have thought long and hard about writing this post, but the truth is I am out of ideas and I need your help.
Those of you who have followed the blog since I started writing will know that right back when he was four months old the Lion was diagnosed with Silent Reflux. He was prescribed medication which appeared to improve his milk intake and reduced the hypertonia he had been struggling with.
For two months it felt as though we were finally getting there.
And then we introduced solids and progress went backwards. He struggled to gain weight for the first year and was eventually given a PH study and Endoscopy to try to identify reasons why he appeared to be in so much pain and perhaps even more importantly why he was so reluctant to eat.
At around this time he was also diagnosed with Anaemia, though apparently not the type that is affected by a nutritional deficiency.
The tests came back showing that there was no Reflux, and no other visible reason for his difficulties.
He was given a diagnosis of ARFID (Avoidant and Restrictive Food Intake Disorder) and put on to the waiting list for a feeding tube.
Then suddenly at around 18 months his intake improved. He started to gain weight and to head in the right direction on the growth centiles that we’d spent much of his earlier moths fearing. Blood tests also improved to the point where he was no longer classed as being anaemic.
Following this, we have managed to keep his relationship with food positive. He has a limited diet, and if it isn’t dry or of a particular texture he won’t consider it, but coupled with his Oat Milk (which he loves) we have got by. Some days and weeks have been more of a challenge than others, but we no longer look over our shoulder and worry about whether he will need a tube.
Sickness has been an ongoing worry, for as long as I can remember, though it’s difficult to pinpoint exactly when it started.
At nine months he was hospitalised after what was thought to be a bug that left him vomiting for around seven days. We simply couldn’t keep him hydrated. Stomach bugs since this have often lasted similar lengths of time, and certainly not the 24 – 48 hour period you come to expect. Some have lasted up to two weeks. It is rare that these episodes are accompanied by diarrhea, though on occasion they have.
Alongside this starting – at best guess – at around 18 months of age, he has sporadically committed at other times which don’t seem consistent with a traditional stomach bug. Sometimes once a week, usually in the evening. At other times ten times during a week, but all spread out through the week – and at times when he doesn’t seem ill in any other way. It is rare we go longer than two weeks without vomit. And it is definitely on the increase since December.
His paediatrician is unclear why it happens, he did blood tests in the summer to assess if he was Celiac and that was ruled out. Though the tests did once again show that he is mildly anaemic – which in consultation with his paediatrician we are monitoring rather than acting on right now. Constipation has been a long term issue, which is finally under control – and none of us are keen to return there, not least because of the knock on effect on his eating. And historically we know that for him using Iron supplements will most definitely do that.
So what do we know:
- History of anaemia
- Clear PH study and Endoscopy aged 12 months
- Restricted diet, but relatively balanced – he is particularly keen on vegetables and chicken. Less so on cake, sauces and anything that needs too much chewing.
- Increasing amounts of vomit – ranging usually from once per week to ten times per week – definitely exacerbated when he has a runny nose, but also occurs when he doesn’t.
- Vomit can occur any time of day but tends to be worse late afternoon and in the evening.
- Stomach bugs can last up to two weeks and rarely involve diarrhea.
- Vomiting is become more rather then less frequent as he gets older,
- He is on the Autism pathway and Anxiety has been suggested as a potential reason. This may well exacerbate the issue, but none of us really believe it is at the route. There is no obvious trigger or pattern that would explain the bast differences between good and bad weeks.
Our primary worry is (apart from the obvious fact that we don’t want our Lion to suffer) is that as he gets older he increasingly associates sickness with what he has eaten or drunk previously. After a very bad December where he was sick almost every day, we pretty much lost carbs from his diet – which up until then had been his favoured foods. We are currently on day five of a bug and he is now rejecting Oat Milk, which is his biggest staple. He says quite simply ‘It makes me sick’.
We are at the point where we can no longer wait for answers, we need instead to seek them out.
Losing foods and even more importantly the only thing he drinks in quantity from his diet is a very real worry.
So I am now asking you, my readers to help. If you know of a child who has been through similar, what was the root cause? If you know of a doctor working privately who may be able to help, please tell us.