Defeated :-(

Hi

I hope someone can help me or at least just offer some advice. This might be a long post but I need to give the whole background.

My baby girl was born via a c-section as she was frank breech from 30 weeks. I went into labor naturally two days before her scheduled c-section so she was full term. I had no complications during pregnancy and she weighed a healthy 3.5 kg. She was put on Aptamil comfort formula from day 1 as I had breat cancer last year so I am not able to breast feed. From about a week old she struggled with cramps. She would wake up every 30 min to hour and would pull her legs up and cry. She also screamed while passing stool. Doctors kept telling me she had colic. Eventually I took her to a Ped GI and he switched her to Similac Total comfort (at 3 weeks old) which is hypoallergenic 98% lactose free and its a milk based whey protein formula. She immediately stopped the cramping and crying when pooing but then started crying every night like clock work from 22:00 to 24:00 after which she will sleep until 5 or 6 the next morning.

Apart from the evening crying, she was good. She liked going out and she liked her stroller. She is not a great sleeper during the day. She sleeps very light and for short periods of about 15 to 20 min. I tried swaddling etc but it didn’t help much. Her night sleep is great but when she wakes in the morning and gets her first bottle and go back to sleep, she sleeps about 30 min and then starts doing something strange. She will start moving her arms around an grabbing or rubbing her face while breathing like someone with a blocked nose (weezing) and then straighten and also pull her legs up and frantically look or somethig to suck as comfort. This last for about 10 seconds and immediately she goes back to sleep. This continues in cycles for about an hour and sometimes she will start crying. She has done this every morning.

2 weeks on the new formula she started crying while sleeping or when waking up from sleeping. She seemed irritated often. This got worse. She would start screaming while eating, arch her back and neck, claw at the bottle, pull on the teat and then frantically suck again. She started vomiting and have wet burps. Her weight gain was fine. She also always through up when putting her flat to change and would hiccup a lot. I took her back to the GI and he said she has reflux. He gave me nexium sachets 10 mg and she gets half a packet in the morning and half at night. He didn’t give me any other info.

I then researched online about when and how to give nexium and also ensured her pillow is elevated and she is fed and kept upright. Within 24 hours she was a different baby. She was amazing. She seemed more sleepy but she was great. Fast forward one week later (which is a week ago), she started making th same wheezing noises at night and sleeping very restless. While making these noises she will rub her face and then pass gas. Very often, loudly and very smelly. Progressively she started with similar symptoms as before but it now seemed that she is crying during feeding due to gas. Se cramps and pushes and then brings up her formula. She gets irritated and seems to be crampy and gassy like crazy. Constantly passing gas and then stops crying when she has. She kept on waking up from cramps. When I massage we tummy, it seems to help. Past Friday it was very bad. She cried, passed gas, vomited and wet burped and instead of one dirty diaper a day, she had two to three which all looked different. I took her back to the GI yesterday and he now wants to do an upper GI contrast but hey can only help her in two day from now.

I live as an expat in UAE and have been to three doctors. No one listens or tells me anything. I made videos of what she does to show the doctors. Personally I am thinking hat the gas is due to nexium. I found a few posts online where people complained of that. After seeing the doc yesterday I decided to not give her her evening nexium, and although she was still a bit restless last night while sleeping, she did not cry from cramping but is still gassy. Today she hasn’t cried at all even though she is still gassy. I did give her her morning dose.

I have no idea where to go from here. Do I do the scan? Could it be the meds? Is her morning behavior perhaps normal? I really feel so helpless. All she has had is pain and discomfort.

Plse can someone help