Sunday, 16 February 2014

Why I set up the Recipe Resource. (The long version!!)

Inspired by Vicki's Guest Post for me, about her reasons for starting her Blog I realised I had never really given mine. So here they are - the long version...

The first few years of life are a time when most children gain weight and grow much more rapidly than they will later on, and the first year especially so. Having already had two babies with moderate reflux I expected our twins to suffer too, I felt I had “been there” and bought the proverbial T Shirt, even having two with reflux need not be too challenging, surely? How wrong can you be?!

Within hours of their birth I was changing cot sheets continuously. Once my milk came in they seemed unable to keep much down, and although their birth weights for twins had been good (A was 5lbs 12oz and K 6lbs 6oz) they started losing weight immediately. K lost over 10% of her birth weight and narrowly escaped readmission to hospital.

They uncurled - as newborns do, and grew longer, but by week three looked emaciated as they failed to fill out. They screamed constantly day and night, or so it seemed, in pain all the time from the stomach acid which came back constantly. A was stiff and rigid, unable to relax at all and exhibited fitting like symptoms which we later learned were “Sandifer’s Syndrome”, a complication of considerable, poorly managed reflux. 

The volume of milk which came back continually was phenomenal, poor K had to be changed many times a day, (as did I) so too did our bedding, their bedding and the carpets too were regularly covered in regurgitated milk. At 3 ½ weeks of age I took them to the GP to request Gaviscon for their reflux, and he took one look at them and sent us to our District Hospital’s Children’s Day Unit for assessment. 

They were jaundiced due to poor food intake. Blood tests were performed and as a result of their FTT their liver function was abnormal, thyroid function questionable, and with the constant vomiting they risked dehydration and electrolyte imbalance. 

(“Failure to Thrive” is when babies and children don't meet expected standards of growth. Although most of these children follow growth patterns that are variations of normal, others are considered to be "failure to thrive or have “faltering growth”.) 




The twins at 3 weeks old


We were fortunate that since there were two of them, I was breastfeeding and I had a good Health Visitor, I was allowed to take them home and return on a twice-weekly basis for monitoring.

We had severe reflux, Sandifer’s Syndrome, motility problems, reactions to food, swallowing difficulties and dangerous choking episodes, eczema, breathing problems and blue episodes, some IgE responses, developmental delays, Faltering Growth (FTT), night sweats, mouth ulcers, rashes, joint pains, hypermobility, poor temperature regulation, unhappy, screaming babies who never slept and a never ending round of feeding and clearing up.
We tried formula top-ups but A would not take any and K refluxed it all back even faster than my breastmilk. We tried thickened formula and then Nutramigen as a dairy intolerance was suspected. Reflux medication was introduced and by week 12 they were slightly more settled. I cut all dairy products from my diet and together with 2oz of Neocate (an elemental, hypoallergenic formula) twice a day they seemed much happier and Archie was much less sick.  I then cut out soya from my diet and this helped K a little. 
However their weights were still not great, and their FTT impacted on their development. The early months after birth are a crucial period of physical and mental development, after birth, a child's brain grows as much in the first year as it will grow during the rest of the child's life. Poor nutrition during this period can have permanent negative effects on a child's mental development. The twins smiled later than my elder two and seemed preoccupied with feeding all the time – even more than the average newborn! K’s physical development in particular was slow for a year or more, although she did catch up. Neither could cope with getting hungry,  I think it was incredibly stressful for them feeding then refluxing everything back. 

A’s weight started to climb slightly faster than K’s after the three months mark and he seemed to do much better, but she was still FTT and by 6 months of age weighed only 10lbs! After the introduction of solids at 6 months it became apparent that they were both intolerant to wheat as well as dairy and soya, and A had an egg allergy. Once their diet was better managed, they were eating solid food and on reflux medication, everything started to turn around. They still continued to suffer with their reflux, particularly in terms of pain, but their weight improved dramatically.

For a long time K’s height was been affected and she was tiny. The twins were incredibly clingy when little, apparently this is another expected side effect of FTT, babies who had FTT are more likely to be “insecurely attached to their mothers”. Now almost 8 their independence is definitely impacted by their gut disease

Sadly it didn’t end there. The “intolerances” turned out to be gut allergies, local non IgE reactions which cause gut inflammation and poor motility. We’ve been through tests, surgery, feeding tubes, and are still not out of the woods. We have a diagnosis of sorts - Eosinophilic Disease but the Hypermobility and other issues are also suggestive of Ehler’s Danlos Disease apparently, a connective tissue disorder which often goes with EGID. 


More than anything I wanted others to have some support, something to cling on to. Catering for children on exclusion diets is HUGELY stressful, even once you get your head around the practicalities. I regularly lose the plot STILL and have to return to basics. It’s tough, constantly, and if anything on this Blog helps just one person then I have achieved my aim. It’s been a long journey for us and we re probably barely half way, but if I can help anyone else via my Blog then I’ve achieved my aim.



34 comments:

  1. What a wonderful reason to start your blog. It is great you have taken the time to help others in the same situation as you.

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  2. You're amazing. I cannot imagine having to cope with all that. Deciding to set up a blog, to help others is an incredibly worthwhile thing to do, I am sure it will be a huge support and resource for others.

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  3. Exactly what Suzanne said - a thoughtless thing to do for others who might find themselves in the position you did x

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  4. Great post, and great reason for starting a blog. It's often said that you blog for yourself, but sometimes what YOU actually want is to help someone else :)

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  5. Wow, it seems like you have been through a lot, it must have been very hard particularly with twins, but great that others in your situation can share what you have learned.

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  6. Great post and what a great reason for starting a blog - Your story will help others cope x x

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  7. I discovered this site and the Free From Fairy at about the same time, I think and it's great to have read both of your back stories today. Sorry you've been through such a challenging time and thanks for sharing such a fantastic resource.

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  8. We've been lucky that our little one didn't have reflux, however I know some of my friends had/have to cope with it. I think this could be a brilliant, informative source of information and support. I've learnt new things just from your post and I will be letting others know about this blog. Thank you.

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  9. What a great post. I'm sorry you are all going through this. It must be really difficult x

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  10. Having new babies is stressful as is. I cannot even begin to imagine how much more it would have been for you. Great to see them well and all smiles now. x

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  11. You've been through so much, and I'm amazed you've come through the other side with enough strength to tell the tale and help others. This is a really important post.

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  12. What an incredible story, it must have been (and continues to be) tough. It's a great reason to start a blog and I'm sure you've helped many many people as a result.

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  13. I'm sure you've helped loads of people and it's a great, positive reason to start a blog. My oldest had reflux - although thankfully not severely - and it was so difficult in the beginning and it's easy to feel isolated if yours seems to be the only baby with it. Thank you for sharing!

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  14. Wow what an experience that must have been for you all - I can only imagine how helpful you have been to all those who are going through the same thing as you and feeling alone. x

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  15. Oh my, that is certainly the biggest mill you and your children have to go through. I hope that others in the same/similar situations can find help and advice from your blog x

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  16. I am sure your blog helped a lot of people.
    After all you did gather a great selection of recipes so everyone can find what they are looking for.

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  17. Great post! It was so interesting reading it because there were quite a few things you mentioned...like the mini fits...that my daughter had and we never knew what caused them. The Drs didn't care! And then our son had terrible terrible reflux. We just didn't go anywhere because it was too embarrasing! Luckily as soon as he was weaned his went away and he has had no further problems (touch wood) with food allergies or anything. Your mention of nutramigen sent shivers down my spine. I still remember having to feed that dreadful stinky stuff to my two...my littlest because he just woudn't feed from me properly...and my eldest because I wanted to stop bfing at 9 months and she couldn't have 'normal' formula being allergic to dairy! Keep up the great work and I look forward to 'working' with you in the coming months...

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  18. Thank you Vicki :) Me too.
    My 8 year old son still has to drink Neocate Active - only marginally better than Nutramigen. With this crazy "Neknomination"crazy doing the rounds with teenagers my eldest (16) said "They are all insane. I would challenge them to drink half a pint of elemental formula like my brother has to every day. Bet they couldn't."

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  19. What an amazing story, you have been through so much. Things like this are the reason blogs are so great x

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  20. Oh my, what a nightmare. I have been so lucky that mine have all been eaters!

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  21. I am SO happy to have found your blog!!! We have a little boy (now 4.5yrs), born with severe reflux and as you say sandifer's syndrome. To this day we have reflux and see our consultant but touch wood we are on a high dose of Omeprazole (which changed our lives) and so far that has controlled it with dosage changes. He future...we aren't sure, we still have it for sure and our consultant mentioned an op but not until he's about 7/8yrs. When it's not controlled and there have been issues with dosage or any time we get an upper respiratory infection (even a common cold) symptoms flare up. I really believe it's hard for anyone to understand how difficult this severe reflux can be and the toll it can take it on you unless you have been through it. During the hard times I genuinely thought I can't work I'm just so tired. Sorry for the lengthy comment but I don't know of anyone else on twitter...are you on that? I'm @teacakeandmyboy and blog there too. Xx

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    1. Yes I'm on Twitter @Twinsplustwo . My youngest so has hitherto fundoplication surgery but should never have. Reflux is always a symptom not a separate disease and the underlying cause is all important. It could be immaturity, connective tissue disease, food allergy... The latter two with us. The GI tract is basically a pipe and inflammation at one end can impact anywhere else along its length. So in my youngest son's case he had severe bowel inflammation causing reflux and no one ever looked below his stomach at that stage. A fundoplication is rarely the answer and never a "fix". It does have its uses though, but if done for the wrong reasons can cause awful distension, retching and misery. Gut allergies (non IgE lots of info if you search on here and on the allergies page above) are a massive cause of reflux. Off to find you on Twitter now!

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  22. Ps ours is predominantly silent reflux, so painful for him and oh the ear infections that came with it...every other month! Our consultant doesn't not believe in eliminating food groups but instead to treat the reflux if that makes sense x

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  23. Not really- see my long reply above. Why give strong meds to treat symptoms than seek underlying cause? Sometimes you need both, but the vast majority of people I have met over the years think that is the way forward, and you'd be surprised by how many I know who have kids with reflux solely because of bowel inflammation due to local gut allergies. (Non IgE) PPI meds are not withy risk. My tiny 8yr old daughter is on 40mg of omeprazole a day, it reduces mineral absorption, can cause heart arrhythmia and increase infection risk

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  24. I also would never contemplate surgery withy trying elimination diets. Going dairy free made a massive difference and soya really sets my daughter off. Take in a copy of the NICE guidelines February 2011 to explain any n IgE fod allergies!

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  25. Blogger via iPad keeps crashing so sorry for typos.... You're not at Sheffield by chance are you?! I recognise that approach lol!

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  26. We nearly tried neocate when my boy was a baby but at the time that consultant said no intolerances or allergies because my boy was fine with formula and omep controlled things. We changed consultant (old one retired and hoped we would grow out of it two years ago) and this one never mention good intolerances?! Our next appt is may, how do we know if my boy is intolerant? Is it a case of eliminating or is there tests they can do? He used to have constipation and was on meds for that but now he goes daily and very easily so off meds (very formed though if that makes sense, not smooth like the poo chart said was 'normal'). Sorry for the tmi! In terms of the corrective tissue disease is there a test for that? All consultant has said is when older more invasive tests like ph levels and camera. Old consultant was much better, do miss him. No not Sheffield, midlands and can you get gp's to understand...absolutely impossible. With th sandifers they used to look at me like I was mad until HV saw it for their own eyes. How long has your daughter been on omep? I do worry long term but keeps him so well and growth is perfect. So sorry to bombard you but literally don't know of anyone else. You have been so helpful x

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  27. Have just looked at the picture of your little girl's tummy...my boy's is distended just like that!! No pain with it though and has always been like that (have never tried mews diet though...thinking is that connected and should I try this x

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  28. There are differences between local gut allergies and intolerance. Chrohns and Coeliac Disease are both delayed hypersensitivities (same thing) but few doubt their existence. It's been accepted knowledge for years that someone which causes inflammation can cause problems with absorption, the controversy is as to whether it is an allergy or an intolerance. But since before 21011 (when the NICE guidelines were published on the subject to confirm on IgE ALLERGIES) it has been demonstrated that the immune system is involved. In fact, eosinophilic disease, which my kids have, is thought to be autoimmune. We also have a lot of other AI diseases.... EDS is associated with hypermobility and other signs, becoming more obvious as they get older. Because connective tissue is all through your body it can impact everywhere. My kids all have orthotics and one has splints day and night to support his feet, another wrist braces etc.
    The abdominal distension is a pretty classic sign of poor gut motility, it IS also associated sometimes with high dose omeprazole in the early stages but more often than not that's a sore tim trying to tell you...

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  29. Hi there thanks so much for thinking of us, I'm currently trying basic alternatives to milk, pasta, cereal, chocolate and biscuits and seeing how we go. GP said no harm to try but need to keep it up for a while to see. He's not keen on the bread I have found or pasta though. Chemist said they doubt it is as you have to be exposed to the food to gain an intolerance, we have had the reflux since birth really. Only thing he was exposed to was formula milk though and I think it was worse when I stopped breast feeding! I do think I should push our consultant for allergy testing when we see him in May. Don't want to put my boy through that unnecessarily, but think I should to make sure. Going to do some research from your blog to get a list of qu's for our consultant but interestingly when my boy had chicken pix and we used Piriton too he slept great! Really deeply so not sure if that's related?! Just fed up as our consultant does seem to know that much but maybe he's hoping we will grow out of it?xx

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    1. Piriton is a known sedative ;) Unfortunatwly you can't test for gut allergies, all testing would do is rule out IgE responses. Also, my kids refluxed from birth- before if you couldn't the constant hiccuping!

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  30. Wow. I am .. I feel like.. thank you for sharing this. So much ahd happened and seeing at your kids now. Youve been through a lot and I can wonder if I can overcome such challenge. Hats off to you and I am glad that I was given a chance to read this blog entry #pocolo

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  31. oh my goodness Kate it sounds like the most horrific time! i am so sorry your littlies had to suffer like this.

    thanks for linking up with #PoCoLo

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Many thanks for taking the time to comment!

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