desperately in despair

Comment by Annabel Sharp on February 27, 2010 at 10:38am

Dear Angela,

I totally understand what you are going through, and for me at my worst times, knowing I was not alone, helped me cope a little better. My son (2nd) Robbie turned one 3 weeks ago. It took 9 months for him to be diagnosed with Gastric Oesofegitus Reflux Disease. After MANY late night trips too A&E since he was 15 weeks, due to him vommiting blood and having accute allergic reactions and loosing weight. No one siad the word Reflux to me until he has a second Endoscopy which showed up severe ulcerations which were causing the bleeding and caused by acid reflux. R was violently sick from day four, bringing up every single feed and I was simply advised to 'double feed' him lol that was a joke when I had an unhappy 2 1/2yr old to look after also and a partner who has taken on a new job as a pub landlord and had to work every hour under the sun. I tried to give R formula but it eventually turned out he has allergy to milk so I had to BF till 6months until I was allowed to try Soya formula. It was the toughest 6 months of my life and I also became depressed and suffered from terrible anxiety. Anyway, by the time R started crawling (very early at 7 months) he was holding down solid feeds and most milk feeds altho spitting up CONSTANTLY. This spitting up has gradually decreased over the last few months. He is now walking and probably sicks up once or twice a week, I can hardly believe I can say that as I never ever imagined it would ever get better. I used to read posts on this site almost teasing myself that R, like other babies may improve with age, and thankfully I am now one of the mums able to say that for R it has improved with age. I would say 11 months was a turning point, however that at the 9 month mark R was his worst ever. He had his worst episode of bloody vommit and was awake at night all the time. I found the night waking impossible to cope with and my other son suffered as they share the same room. I used to long for the evenings once I could put them to bed and yet also DREAD the evenings cos it was a waiting game for the dreaded scream. A scream like no other, extreme, instant pain. Its awful, and no one else can understand this unless you are actually going through it. I still suffer from terrible anxiety and find in impossible to relax. I have councelling through my HV and I am also waiting on an appointment with the psycology team at Glasgow Yorkhill Hospital (R's consultant is very good and he understands that with Reflux, the parents need support also and he always asks how I am and offered me some 'help' if I felt I needed it. Which I do. Even though I can see R is so so much better I still struggle with everything. He is still on 2 x 10mg Omeprozole twice a day so I know he still needs the meds. We still have sleepless nights but recently we have had a couple which he has slept through. I have his cot tilted up on a big pile of books which I swear by and I always make sure he is properly winded after every bottle of milk. Sometimes now when he wakes he just needs a huge big burp and then he settles again, on bad nights I give him some milk which seems to help but I am needing to do this less and less now. We have a review in 4 weeks time so im wondering if they mayreduce the med.....bit scared of that! I am sorry to hear what a hard time you are also having. It sounds like her med may need increased as the dosage is relative to their weight. Perhaps they will suggest Omeprozole this time. It is certainly what has worked for us. I presume you prob her cot up etc.... I apologise for this very long, rambling message but I just want you to know that I truely know what you are going through and how the lack of sleep is punishing. Maybe with stronger/increased meds you may see an improvement. Does your daughter have any food allergies as it seems sometimes that goes hand in hand with Reflux?
Very best wishes, annabel x

Comment by charlotte west on March 2, 2010 at 5:06pm

hi angela my little boy has a reflux and the doctors put him on raitidine and domperidone i only let him have the meds for a weekcos all he done was sream on the meds after every dose it was horrible he still screams every day but is alot better i give him calpol my little boy is 6 weeks old now he was in hospital for 3 weeks before they evan thought he had a reflux he was not eatin any think he had a feeding tube down him also he cant suck on a normal teat he has to have an orthadontic teat he suffers with terrible wind to i have to burp him at least 10 times while i am feeding him my little bot is on neocate also and gaviscon but he still sicks up some times i just hate seein him in pain all the time the doctors also think he has an allergie to lactalose so thats why he is on this milk i still have not heared from the doctor about the results i feel they dont listen at all my son only drinks 2 oz a day and nothing else sins he was born sometimes he does not evan drink that charlotte

Comment by ann taylor on March 7, 2010 at 10:19pm

please hold in there as you are a good mum, just look at the web site i know excactly how you feel, my little one is 19 months old and 16 and half pound, she does not eat and even now the health care people are starting to listen, it is all a big long hard battle, but as my mum says they only have yu to fight for them, please read all these comments, as you are not, alone, and the fact that you even on this site just states how caring you are, good luck

Comment by Elaine on March 31, 2010 at 8:00pm

Hi Angela

I know how you are feeling. My daughter is 5 months old almost and still suffering after many trips to Doctors and Hospital. I too cry all the time and have now been given anti depressants. It is so frustrating because she screams in pain, arching her back all the time and as soon as we go to the docs, she is as good as gold, we do not understand it, so it makes it impossible for them to believe us!

She is on Domperidone 4 times a day, Omeprazole once a day (2,5ml) Gaviscon and Ranatadine but nothing seems to be working, even though Omeprazole is supposed to be the best one out there. She was also put on Neocate milk because the consultant said he was sure it was colic and could be due to intolerance, but she has now been on the milk for 3 weeks without the slighest improvement, so surely it cannot be intolerance!

One Doctor I saw said "well babies cry" and another one tried to blame me because I was stressed and said that the stress is transferring to her, even though I told them that she is like that with everyone! Nobody understands unless they have had a baby with reflux!

When did you start weaning your baby? Did it improve anything?

Had a nice afternoon today though after a rough night as parents looked after her whilst hubby and I went to the pics at BAS VEGAS! LOL

Comment by charlotte west on April 2, 2010 at 10:07am

my little boy is 10 weeks old now he still has trouble sum times he sicks most of the time and has 1 bottle in the morning at 5 wich is a rilly bad bottle cos he arches his bk and cant drink it no matter how maney times u wind him, i stoped all the meds he was first given omeprazole wich i found did not work at all so i ask the doctor if there was any think else he gave me ranatadine wich made my baby worse he got rilly bad tummy aches with this he screamed the house down so i stopt that to and said to the doctors nothing u have given me has worked at all so i dont want nothing but the gaviscon wich my baby still has,i dont no if domperidone works i did not let my little boy stay on it as it takes mouths to work,they now they want to give my baby thickiner in his milk with the gaviscon still i dont no wot to try any more cos it all seems to me its not rite to keep giving babys all different things i am gonna start feeding my son a 3 mouths as i think this mite help him more as he only drinks 3 0z evey 3 hours he should be drinking more but he just dosent for some reson he cant suck on a normal teat it has to be a flat teat he is still on neocate but i have asked to change it as is very bland in taste so evey time i try to give him calpol or any other meds he sicks it up because he is not used to sweet taste u can add some thing to neocate to make it sweet i no the gaviscon does not help with my sons stoles because he finds it rilly hard to go and the doctors say it can bung u up so its harder for him to go toilet.

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