Tag Archives: reflux

25 November 2014 – Consolidated list of Toby’s symptoms / observations to date…

Posted on November 25, 2014 by florencejoy

Hi again, Here is the consolidated list of symptoms/observations to date. I hope it is helpful to have a quick (& roughly chronological) reference and overview of Toby’s medical history – I certainly found it useful to write it all … Continue reading →

Posted in Toby | Tagged 24 hour pH study, anesthesia risks, ASD, axial hypotonia, baby, barium swallow, bilateral inguinal hernia, calcium levels, children's health, chronic constipation, colic, congenital heart defects, cow's milk protein allergy, developmental delay, feeding problems, gastroscopy, gross motor delay, growth problems, happy nature, head shape, heightened gag reflex, joint laxity, language delay, Metopic Synostosis, MRI, nasal regurgitation, NG tube, noisy excessive upper airway secretions, Oligohydramnios, parenting, periorbital puffiness, phayngeal hypotonia, Plagiocephaly, PPRM, premature baby, premature birth, prematurity, preterm birth, preterm premature rupture of membranes, projectile vomiting, prominent forehead, puffy eyes, reflux, refusing feeds, respiratory infections, sensory perception, sociable, soft dysmorphic features, systolic murmur, tongue-tie, umbilical hernia, unsafe swallow, video fluoroscopy, VSD | Leave a comment

24 October 2014 – Letter to geneticist – further questions…

Posted on October 28, 2014 by florencejoy

I have a few thoughts that I wanted to air and I find it easier to lay them out on paper, as it were – but I don’t mind if you would rather speak on the phone than respond by … Continue reading →

Posted in Toby | Tagged abdominal breathing, abdominal pain, amino acid based formula, blood chemistry testing, blood CK, breathing difficulties, cardiology, children's health, colic, colicky, cow's milk allergy, cow's milk protein hypersensitivity, enriched formula, feeding, forceful vomiting, fussy baby, geneticist, homocysteine, Hypercalcemia, hypoallergenic formula, Hypophosphatasia, inborn errors of metabolism, joint laxity, Metopic Synostosis, microarray-based CGH, mytopic suture, neurologist, NG tube, Nutramigen AA, paediatric gastroenterologist, parenting, Plagiocephaly, plasma amino acids, projectile vomit, recessing under rib cage, reflux, refusal to feed, silent reflux, SMA Gold Prem 2, thyroid function tests, tube feeding, uric acid, urine amino acids, urine chemistry testing, urine organic acids, wheezing, Williams Syndrome | Leave a comment

21 October 2014 – Letter to geneticist…

Posted on October 28, 2014 by florencejoy

My son, Toby, and I met you and your colleague in clinic last Friday 17 October. Your colleague shared that she suspected Toby might have Williams Syndrome and he had blood taken to be sent off for an array CGH. … Continue reading →

Posted in Toby | Tagged abdominal pain, children's health, chromosome check, chromosome study, colic, colicky, delayed motor skills, digestive problems, failure to gain weight appropriately in infancy, failure to thrive, forceful vomiting, gastrointestinal problems, geneticist, genticist, heart defects, heart murmur, low muscle tone, micro-array CGH, neurotic mother, Noonan Syndrome, parenting, Prader-Willi Syndrome, projectile vomit, reflux, sociable nature, trouble breastfeeding, VSD, Williams Syndrome | Leave a comment

5 July 2014 – Letter to NNU Consultant – Nagging thoughts/concerns…

Posted on October 28, 2014 by florencejoy

After our appointment with you it was decided to book Toby in for a blood test to do a chromosome study, in order to check the presence of a rare syndrome, called Prader-Willi. My understanding is that the suspicion of … Continue reading →

Posted in Toby | Tagged 3mcc deficiency, abdominal pain, centronuclear myopathy, children's health, chromosome study, colic, delayed motor skills, failure to gain weight appropriately in infancy, failure to thrive, forceful vomiting, gastrointestinal problems, geneticist, gross developmental delay, heart defects, heart murmur, low muscle tone, missed miscarriage, neurotic parent, Noonan Syndrome, parenting, Prader-Willi Syndrome, premature birth, prematurity, pulmonary complications, reflux, sociable nature, subchorionic bleed, trouble breastfeeding, VSD, Williams Syndrome | Leave a comment

22 May 2014 – Today’s consultation with gastroenterologist…

Posted on October 28, 2014 by florencejoy

Ahoy! We had a good meeting with the gastroenterologist this morning; by that I mean that we felt we were able to air all our thoughts and concerns, that we were heard and we felt more reassured by the feedback … Continue reading →

Posted in Toby | Tagged barium meal study, barium x-ray, bowel, children's health, cow's milk allergy, cow's milk protein hypersensitivity, delayed gastric emptying, dietician, entrance to bowel, feeding, feeding concerns, feeding cues, feeding difficulties, forceful vomiting, gastroscopy, hypoallergenic milk, inflammation, NG tube, paediatric gastroenterologist, parenting, prayer request, projectile vomit, pylorus, reflux, SALT, silent reflux, Speech and Language Therapy, starvation techniques, stomach emptying, swallow, swallow study, tube feeding, tube weaning, video fluoroscopy | Leave a comment

20 May 2014 – Barium meal study…

Posted on October 28, 2014 by florencejoy

Letter to GP: Barium meal study yesterday revealed that Toby’s stomach was emptying a little on the slow side. The doctor also said that the entrance to his bowel looked slightly inflamed/swollen. She also saw the 10ml of fluid that … Continue reading →

Posted in Toby | Tagged barium meal study, barium x-ray, children's health, delayed gastric emptying, entrance to bowel, GP, inflammation, parenting, pylorus, reflux, swelling | Leave a comment

16 May 2014 – Toby’s medical history to date – Actual age: 32+5 weeks / Corrected age: 25 weeks…

Posted on October 28, 2014 by florencejoy

Upon writing a letter to a friend of my parents-in-law, who works in the medical profession, seeking advice as to how to move forward, I had to bring my records of Toby’s medical journey up to date. Here they are, … Continue reading →

Posted in Toby | Tagged 24 hour pH probe test, 32+2 weeks gestation, abdominal pain, anti-reflux milk, aspirating milk, aspiration, barium x-ray, bilateral inguinal hernia, bolus feeding, breathing difficulties, breathlessness, bronchiolitis, cardiologist, children's health, choking, chromosome check, chronic congestion, colic, colicky, constipation, coughing, cow's milk allergy, cow's milk protein hypersensitivity, delayed gastric emptying, dietician, Domperidone, early weaning, Enfamil AR, expressing, feeding, feeding concerns, feeding diary, feeding pump, feeding therapy, forceful vomiting, gagging, high respiratory rate, hole in the heart, medical history, MRI scan, neonatal unit, neurological, NG tube, nil by mouth, NNU, Nutramigen AA, Nutramigen Lipil 1, Omeprazole, palivizumab, parenting, pneumonia, poor feeding, poor weight gain, premature, Prevention and Treatment of Tube Dependency in Infancy and Early Childhood, projectile vomit, pyloric stenosis, reflux, refusal to feed, RSV vaccine, SAGE, SALT, second opinion, silent aspiration, silent reflux, SMA Gold Prem 2, Speech and Language Therapy, starvation techniques, suck, syringe feeding, tongue thrusting, tongue-tie, tongue-tie release, tube dependency, tube feeding, tube weaning, umbilical hernia, unsafe swallow, video fluoroscopy, VSD, weaning, weight dropping off centiles, wheezing | Leave a comment

14 April 2014 – It’s about time we sent some good news!

Posted on October 26, 2014 by florencejoy

We had another appointment with the gastroenterologist on Thursday. His opinion is that he thinks that the various tests that have been done all suggest that there is nothing actually ‘wrong’ with Toby other than a cow’s milk protein allergy. … Continue reading →

Posted in Toby | Tagged 32 weeks, barium swallow, cardiology, children's health, colic, cow's milk allergy, cow's milk protein hypersensitivity, depression, dietician, digestive system, diuretics, Easter, feeding, feeding aversion, feeding concerns, feeding pump, God's faithfulness, gratitude, hypoallergenic formula, neonatal unit, neurological concerns, new life, NG tube, paediatric gastroenterologist, parenting, perspective, premature, projectile vomit, reflux, spring, stomach emptying, thankfulness, tongue thrusting, tube feeding, unsafe swallow, VSD, weaning | Leave a comment

7 April 2014 – Questions for our next meeting with gastroenterologist…

Posted on October 26, 2014 by florencejoy

We have written our thoughts/questions/concerns/symptoms ready for our next meeting with the gastroenterologist on Thursday. Got to make the most of every minute in there if the wait between each appointment is going to be six weeks!! ~ Thoughts / … Continue reading →

Posted in Toby | Tagged 2nd centile, abdominal breathing, children's health, choking, chronic congestion, constipation, coughing, cow's milk allergy, cow's milk protein hypersensitivity, developmental milestone, early weaning, endoscopy, feeding, feeding aversion, feeding difficulties, feeding pump, feeding therapy, flat head, gagging, high respiratory rate, hoarse voice, inguinal hernia, moro reflex, muscular breathing, neck strength, neurological, NG tube, Nutramigen AA, oesophogitis, parenting, Plagiocephaly, positive feeding experience, projectile vomiting, reflux, sitting, SMA, startling, stomach emptying, tongue thrusting, tube dependency, tube feeding, tube weaning, video fluoroscopy, VSD | Leave a comment

18 March 2014 – Toby – Letter to GP…

Posted on October 26, 2014 by florencejoy

Long time no see (which can only be a good thing, right?) Question: If you were to make a referral for Toby to have an ultra-sound to check for Pyloric Stenosis, how soon could that be done? The reason being … Continue reading →

Posted in Toby | Tagged 24 hour pH probe test, breathing difficulties, children's health, constipation, cough, frequent hiccups, GP, NG tube, paediatric gastroenterologist, parenting, projectile vomit, pyloric stenosis, reflux, tube feeding | Leave a comment

Toby – post meeting with gastroenterologist etc….

Posted on October 26, 2014 by florencejoy

Once again, I’m sorry for the tardiness of this update, especially if you’ve been waiting for news post our meeting with the gastroenterologist the Thursday before last (27 Feb). Our meeting with the gastroenterologist: Our meeting with the gastroenterologist had … Continue reading →

Posted in Toby | Tagged 24 hour pH probe test, breathing difficulties, children's health, Christianity, church, community, coughing, early weaning, faith, feeding aversion, feeding diary, feeding difficulties, frequent hiccups, love, neurological, NG tube, paediatric gastroenterologist, parenting, positive feeding experiences, prayer, projectile vomit, Psalm 56, reflux, stand in the gap, support, testing times, tube feeding | Leave a comment

10 March 2014 – Brief update for family post gastroenterologist appointment…

Posted on October 26, 2014 by florencejoy

Brief summary for family post our meeting with gastroenterologist… Nothing conclusive but a few suggestions as to how to move forward. 24 hour pH probe test to investigate reflux properly as well as recommendation to wean early and introduce Toby … Continue reading →

Posted in Toby | Tagged 24 hour pH probe test, children's health, early weaning, paediatric gastroenterologist, parenting, reflux | Leave a comment

20 February 2014 – The latest news from Toby et al…

Posted on October 26, 2014 by florencejoy

Hi dear friends, It’s been a while since we gave you the latest on Toby and I’m sorry if you have been waiting to hear news of his videofluoroscopy last Tuesday… Videofluroscopy: The video fluoroscopy actually rather frustrating. As my … Continue reading →

Posted in Toby | Tagged amino acid based formula, aneurismal tricuspid valve tissue, cardiology, children's health, cow's milk protein hypersensitivity, diuretics, Emmanuel, feeding, feeding aversion, feeding concerns, feeding cup, NG tube, Nutramigen AA, paediatric gastroenterologist, parenting, reflux, SALT, silent aspiration, thickened formula, tube feeding, video fluoroscopy, VSD | Leave a comment

14 February 2014 – Letter to gastroenterologist…

Posted on October 26, 2014 by florencejoy

Forgive me for using this email address to try to get a message to the gastroenterologist. We are actually due to be seeing him in his NHS clinic on 27/02/14 – after having heard from Toby’s Speech And Language Therapist … Continue reading →

Posted in Toby | Tagged 32+2 weeks gestation, aspiration, bilateral inguinal hernia, breathing difficulties, children's health, chronic congestion, cow's milk protein hypersensitivity, CPAP, Enfamil AR, feeding, feeding concerns, high respiratory rate, NG tube, nil by mouth, NNU, Nutramigen AA, Nutramigen Lipil 1, paediatric gastroenterologist, palivizumab, parenting, poor feeding, prematurity, reflux, RSV vaccine, SALT, tongue-tie, tongue-tie release, tube feeding, umbilical hernia, video fluoroscopy, VSD | Leave a comment

13 February 2014 – Listen to Toby’s chest? (And some thoughts ‘out loud’) – Letter to GP…

Posted on October 26, 2014 by florencejoy

Do you have a small slot today to listen to Toby’s chest? Or perhaps the nurse could do it? (We’re coming in for Toby’s vaccinations at 1.30pm) Is that something I can ask her to do? Toby’s breathing still isn’t … Continue reading →

Posted in Toby | Tagged abdominal pain, aspiration, breathing struggles, cardiologist, children's health, chronic congestion, cow's milk allergy, cow's milk protein hypersensitivity, discomfort, feeding, feeding aversion, feeding concerns, GP, grunty breathing, high respiratory rate, Nutramigen AA, paediatric gastroenterologist, palivizumab, parenting, recessing, reflux, RSV vaccine, SALT, video fluoroscopy, VSD, wheezy | Leave a comment

28 January 2014 – I feel so tired & alone…

Posted on October 26, 2014 by florencejoy

I feel so tired and alone. I don’t feel reassured by being here. I see a different nurse and doctor each shift, explain the same things each time and no-one has instilled any particular confidence in me or demonstrated their … Continue reading →

Posted in Toby | Tagged aloneness, baby, children's health, cow's milk allergy, cow's milk protein hypersensitivity, desperate, Disphagia, exposed, feeding, feeding aversion, feeding concerns, feeding diary, GORD, helpless, hospital, motherhood, NG tube, parenting, reflux, SALT, Speech and Language Therapy, suck, swallow, tube feeding | Leave a comment

27 January 2014 – Heading to A&E with Toby…

Posted on October 26, 2014 by florencejoy

The milk protein hypersensitivity is most likely a correct diagnosis, as Toby is not reacting to the milk after feeds (praise God!) However, the problem remains with feeding itself. He still will only take 10-20ml on his own, before he … Continue reading →

Posted in Toby | Tagged children's health, cow's milk protein hypersensitivity, feeding, feeding aversion, feeding concerns, GORD, motherhood, negative feeding assocations, neurotic mother, NG tube, paediatric gastroenterologist, parenting, prayer request, reflux, refusal to feed, survival feeding, syringe feeding, trust, trusting God, tube feeding | Leave a comment

23 January 2014 – An update for our GP…

Posted on October 26, 2014 by florencejoy

The nurse from the hospital NNU who visits in the community came round to weigh Toby yesterday. He had gained 40g over 8 days. He is gaining at least – albeit very slowly. She said that he’s ‘on the fence’ … Continue reading →

Posted in Toby | Tagged breathlessness, children's health, congested, cow's milk allergy, Dysphagia, Enfamil AR, feeding, GP, hypoallergenic milk, NG tube, NNU, Nutramigen Lipil 1, paediatric gastroenterologist, parenting, reflux, refusal to feed, syringe feeding, wheezing | Leave a comment

22 January 2014 – Cranial osteopathy for Toby? – Letter to GP…

Posted on October 26, 2014 by florencejoy

I’ve had an email from a family member suggesting we consider cranial osteopathy for Toby… Something I know nothing about and would not have known to explore had she not been in touch. I imagine that there is mixed opinion … Continue reading →

Posted in Toby | Tagged children's health, cranial osteopathy, feeding, feeding concerns, GP, parenting, reflux | Leave a comment

21 January 2014 – Remaining thankful…

Posted on October 26, 2014 by florencejoy

Yesterday was not a good day… After belieiving that the new milk that Toby was started on last week (Enfamil Anti Reflux) was making a difference, we had a really bad night on Sunday and bad day yesterday… Back to … Continue reading →