-
Ginny S
- Female
- Hampshire
- United Kingdom
- Blog Posts
- Discussions (136)
- Events
- Groups (1)
- Photos
- Photo Albums
- Videos
- Ginny S's Apps (1)
Gifts Received
Ginny S has not received any gifts yet
Ginny S's Page
Latest Activity
Ginny S replied to Laura Perks's discussion 'Ketotifen'
It's brilliant, go for it! Just replied in detail in an email to Laura Perks so perhaps she can forward all my information on to you. Some children are also allergic to Neocate. My daughter vomited that as well. Ketotifen was a real turning…
Ginny S replied to Anna Curtis's discussion 'will she ever stop crying?'
rice and potatoes are safe, also Quinoa is ok. Wheat, rye, barley, etc is not. Look it up on line. I think safest weaning foods are rice and then potato and sweet potato, carrots, pear, banana, etc. i used to get the Plum Baby Food Blueberry and…
Ginny S replied to Anna Curtis's discussion 'will she ever stop crying?'
Anna - do not do gluten. Coeliac disease is one thing, but you cannot test for it until you have been on it for 6 weeks, so your original test meaningless! I cannot believe your doctors tested for it if you are not yet giving your baby wheat. Gut…
Ginny S replied to Anna Curtis's discussion 'will she ever stop crying?'
Hi you too, yes, Elecare is the alternative one - is that the one from the States. I never got to try it.
Anna - I noticed you never eradicated wheat and gluten. These are the killers for my kids and for the kids of my friend, who now has the…
Ginny S replied to Kayliegh's discussion 'Anyone with older children still suffering?! Around 1yrs old!'
50 per cent of babies with reflux have some type of food allergy. Dr Shah will tell you this! You are using the least allergenic milk and if your baby taking it that is good! (My daughter vomited that but not Aptamil, although the Aptamil caused all…
Ginny S replied to Kayliegh's discussion 'Anyone with older children still suffering?! Around 1yrs old!'
Look at posts on food allergy, intolerance, Dr Shah, eosinophilic condition, etc. You child is not being difficult over sleep. Wailing through the night is a sign of food intolerance/allergy. I have done masses of posts on here about it. Dr Shah is…
Ginny S replied to Anna Curtis's discussion 'will she ever stop crying?'
You need to see a good paed or NHS can refer you to Dr Shah (he!)_ at Great Ormond Street, but they only take paediatric NHS referrals. I am at Chelsea and Westminster at the GOSH clinic there. My children are intolerant/allergic to dairy, wheat,…
Ginny S replied to Anna Curtis's discussion 'will she ever stop crying?'
Lots of us have been there, poor you. Do not force food if she does not want it as you can end up with vomiting food and aversive feeding. You need to look at the milk allergy route. 50 per cent of babies with reflux actually have allergies to food.…
Profile Information
- Hometown:
- Basingstoke
- County:
- Hampshire
Comment Wall (28 comments)
- At 9:29am on May 26, 2008,
Philippa said… - Hi
Harry has been on Losec 20mg, Domperidone ( high dose) and gaviscon in every feed since he was 5 weeks old ( is now 11 months), he was most definitely not a silent refluxer and screamed all day and whenever put down until around 6 months. It was a struggle to get him to feed also, usually a 3 ounce bottle was a result and this took a hour to get down him!!! He was in agony during and after feeds and constantly arched his back and wriggled around. I am not totally convinced the meds made that much difference, but I was so upset at seeing him in so much pain that we have perservered. He is on Neocate milk due to a possible milk allergy and does not seem to be linked to his reflux. As its so thin, it comes up alot easier!! We have been seen at Basingstoke Hospital since he was three weeks old, and been admitted overnight twice. They could not have been more helpful and his consultant and our GP have both been excellent. He is still a poor drinker and has to take a calcium supplement as his milk intake is so low. He is good at taking solids, but these still come back up and its starting to bother him alot more. We are due to see the consultant in two weeks and are hoping we might be able to start weaning him off the meds to see if it makes a difference. We are worried what they might do long term. His weight is fairly low and he only doubled his birth weight at 9 months. When are you due at the hospital?? whats guildford like??
- At 8:55pm on May 26, 2008,
Ginny S said…
- Dear Philippa,
That all sounds very familiar - poor you - it's very stressful isn't it? It's like being on a constant yo-yo - Stella's symptoms seem to change constantly and so it's really hard to keep a grip on it all. I have a two year old as well who has severe food allergies but he was a breeze compared to Stella. Reflux is the pits!
Stella has just doubled her birth weight, but is only on 9th percentile now (was on 50th, then down to the second, now up to 9th) although she goes up and down, losing weight some weeks. She is six and a half months now. She screamed without stopping for the first 4 months - she wasn't diagnosed until 3.5 months - after endless visits to the GP. They kept fobbing me off with the colic line - I think everyone thinks you are exaggerating when you say your baby screams for 12 hours straight! It was only when her weight plummeted that anyone took any notice. She was initially admitted for two days for observation and they said it was one of the worst cases they had ever seen. They were ok in Guildford. The admitting doctor was brilliant, but then she went off call and I had a random selection of doctors after that. I now go for two weekly or monthly appointments with a consultant at Guildford, but to be honest he keeps looking everything up in a book so I don't feel that he has an intimate knowledge of reflux. Stella was so ill on the Pepti Junior that I've now stopped it, and when I asked whether the prescription milks could make babies sick he didn't seem to think so or didn't know ... My GP has only seen two cases of reflux in 20 years ... so I feel very isolated and helpless with it all. I am going to try and see a private paed in London for a second opinion this week. Like you I really want to know more about the drugs and their effects. My consultant says that the meds are not strong in the scheme of things and it's fine for babies to be on them for a long time.
I am putting ranitidine into the mix today, as well as losec, as Stella is clearly still in pain when feeding. She is refusing feeds outright at the moment. It's a nightmare.
Anyway, if I find out any more info from the paed in London I will let you know. If I come to a deadend perhaps I should try your man in Basingstoke ....
Hope you had a good weekend,
Thanks for your reply, it's reassuring to know we're not the only ones going through this ....
Ginny
- At 1:03am on July 14, 2008,
marmum said…
- Hi Ginny,
I've been reading some of your posts and your Stella sounds very similar to my little boy Liam, with their silent reflux. I hope you're on a good spell and things are getting better. I've got a couple of questions for you which I hope you'll be able to help...
Did weaning help Stella at all? Also you mentioned a maternity nurse that specialises in reflux - is she a friend or did you actually use her? If she is any good (particularly with the feeding) are you able to let me know her number? I really need some help as I am completely neglecting my elder one.
Thanks and fingers crossed it will get better for us
X
- At 9:02pm on July 15, 2008,
Rebecca said… - Hi Ginny, sorry to see you're still having problems with Stella's eating. I just thought I would mention that we go to the NHS reflux clinic at Chelsea and West. where they have gastro expertise and they have been really good. I've had the opportunity to transfer Liam's reflux care to GOSH (where he is with the cleft palate team) and have turned it down as I'm very happy with the treatment he is getting. We see Doctor Fell, but I have also spoken to Doctor Rawat who was also good. They are happy to alter doses over the phone if need be. Just thought I would let you know as it is a trek to Great Ormond Street even from where we are in Twickenham.
Liam has is op. hopefully on Thursday on his mouth so we will se how much difference that makes to his eating/drinking. He is doing better with the solids at the moment (although not amazing!) so just keep hoping we can keep it up, it is so difficult when you have set backs. He is also eight months now.
All the best to you and Stella.
Rebecca
- At 10:14pm on July 15, 2008,
marmum said…
- Hi Ginny, the whole thing is sooooo frustrating isn't it? Your maternity nurse sounds like a real nightmare - I am still debating as to whether or not to get one but I'm starting to think that at the end of the day all I'll be paying her for is for my sleep as she won't be able to 'cure' the reflux which is all I really want.
Is Stella doing any better on her solids?
Liam is 15 weeks old, was born on the 25th and is now down to the 2nd. I think it's only a matter of time before he starts to lose weight as his drinking is really bad varying between 14 to 20oz in 24 hours. He was a text book baby when he was born, feeding 4 hourly and only once at night. OVer time it's got progressively worse and worse - his feeding went down in quantity and now he outright refuses to feed when awake. Over the last few weeks his sleep has got progressively worse too- the dummy used to soothe him, and though he would wake up for it, he was always pretty quick to settle. Now bedtime alone takes 1 and a half hours cause he's hungry but won't feed and he's very difficult to settle even with the dummy, and he also wakes up loads at night. The only thing I still have going is that he fortunately is not a screamer/crier. In fact he is a very happy smiley baby (apart from when refluxing) although with the increasing pain he is in his placidness is starting to waver too.
I am seeing Dr Fysh at the Portland - he is a consultant paeditrician. Our next appt is on thurs and I'm wondering whether to ask him for a referral to Dr Thomson. However Dr Fysh has been really good so far - it's just a shame what he's prescribed so far hasn't worked.
I was hanging up my hopes on weaning however lots of people have pointed out to me that I still need to get the reflux sorted and by no means will it be a cure. Still I'm hopeful that it will help us a bit. The thought of going through more and more weeks of this is just so depressing.
I think the thing I feel most sad about is how I was looking forward to spending this summer doing fun things with my elder one before he starts school for the first time in sept - instead he's cooped up taking 2nd place every time whilst I figure out what to do about Liam.
I'm just glad to have found this website knowing others can understand what I'm saying!
- At 7:41pm on July 18, 2008,
Rebecca said…
- Hi there, sorry to hear Stella has been unwell, glad you have your next appointment sorted out. It's so much hard work with the eating/drinking that I think it's difficult for other mums to understand when their babies don't have reflux. I do hope things get better - after Liam was dreadful following a bad cold, he was subsequently better than before, but it did take a while. Now the poor boy has had his op. yesterday and is in a lot of pain with his new mouth! He hates anything in it at the moment, despite the morphine and paracetemol so I think it will take some time to get him back to eating as he was before. He's still in hospital but his Dad is with him tonight as I slept on the chair last night - looking forward to bed!
Let us know how you get on, all the best, Rebecca
- At 1:06pm on July 20, 2008,
Emma said… - Hi
Thanks for your reply to one of my discussions.
I am reluctant to try neocate as I understand that it is meant to taste disgusting and Fraya seems to really love her SMA High Energy at the moment which is very creamy. She actually moans for milk now and sometimes cries for it! She has about 20-22 ounces of this a day which equates to about 30oz of normal calorie milk. Although she has one large vomit a day she will re-eat after this so I don't want to ruin her desire for milk by changing milk. Don't have a clue how to improve her solid eating though! I hope your appointment goes well. I look forward to hearing more from you!
- At 3:18pm on July 20, 2008,
Ginny S said…
- Hi Emma
Yeah, I agree with you about changing milks. Stella seems to like Aptamil Easy Digest at the moment so I am sticking with that. Like Fraya she takes about 22 oz per day plus tiny amounts of solids. I feed her at 11pm still as well to get the total up to 22 to 24 oz (she takes 3 or 4 oz then). I'm so frustrated as she spent three weeks moving well on to solids (but nothing too interesting, just potato and veggie mixtures followed by fruit puree), but then she got a temperature and a virus and completely went off her food, that was 12 days ago now, so we are back to baby rice and fruit with tiny amounts of potato disguised in the mush.
I will let you know about my complementary therapy route and if anything helps I will let you know names and numbers!! I have even called a clairvoyant (how desperate am I???) who says I will get her sorted in the next five weeks. I hope to god she is right ...
Ginny x
- At 8:19pm on July 26, 2008,
Emma said…
- Hi Ginny
Thanks for your reply to my discussion.
I forget - how old is Stella? Great that she was crawling at 5 months! I don't think Fraya will ever crawl - she hates being on her front and she loves standing so I am trying to concentrate on the walking!
Anyway, in answer to your question - I don't think Fraya will benefit from omprazole as she does not seem to suffer from any pain with acid in the day or even when she vomits. She sleeps fine and she is happy throughout the day. It is only feeding that is an issue although the milk feeding is pretty good now luckily. Solid feeding is still appauling though! She only had 2 meals today and had about 10 mouthfuls in total. However, I did try her on carrot sticks which she seemed to like and did not gag.
I look forward to hearing how your alternative treatments work out. Someone did suggest homeopathy to me today - what happens there?
Hope to hear from you soon!
- At 10:58pm on July 26, 2008,
Emma said…
- Hi Ginny
I am in Canterbury.
What do you mean - Sue is sending "distant healing"? How? What does she do?
Yes, Fraya is 7 months old. She was born mid December. What was Stella's birth weight? Fraya was 6lb 3oz.
I look forward to hearing more from you as you find out more from the treatments.
Cot Wedge Guide
Baby Reflux Library
Chat to the Founders of Little Refluxers!!
Wedges and Positioners
Photos
Top Content
| 1 |
Beth |
| 2 |
natasha |
| 3 |
amanda |
| 4 |
Jenny B |
| 5 |
Joanne carlyon |
| 6 |
Tasha Jones |
| 7 |
laura taylor |
| 8 |
emma penman |
| 9 |
Veronica Payne |
| 10 |
Stacie |
Badge
© 2012 Created by Admin.
Powered by 
.
