Help Please

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Permalink Reply by rachael on June 5, 2008 at 11:12

Hi Jacqui,
I'm glad you've managed to get help so early on, I'm sure it will make a big difference. My baby, Aidan, who is now 6 months old has ahd reflux since birth. He has also been prescribed omeprazole and domperidone and I also found that it made his symtoms worse. I spoke to the paed on the phone about this and he advised to feed Aidan less, which we did to no avail. I took him off the meds and he was a lot better- well, back to how he was before anyway. I've not seen the paed since as my follow appt got cancelled, so I don't know if there would have been alternative meds.
A lot of people have been really helped by these meds, so don't dismiss them unless you're really sure. One thing you need to make sure is that you're giving the domperidone at the right time. It needs to be at least 15-30 mins before a feed, which is not always easy. You usually have to give these meds about 2 weeks to work.
If possible, still try to raise the bed- my baby used to wake up in the morning like a frog with his legs all bent up at the bottom of his moses, but we found it really helped with the sickness.
I'm sure others will be able to give more advice- this forum is great. I would've been lost and clueless without it.
Rachael

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Permalink Reply by Julie on June 5, 2008 at 22:45

Hi Rachael,

I don't know whether this is relevant as a baby dose is obviously a lot smaller, but my mum has GORD and so does my 2 aunts, they all have Omeprazole or lansoprazole etc.. also Domperidone. My mum is OK on Domperidone but both my aunts suffered stomach cramps and it made them feel more sick than before they took it! Apparently a side effect!!! I wonder if thats why Aidan was worse on the meds? Makes you wonder doesnt it?
Julie x

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Permalink Reply by Jacqui on June 6, 2008 at 21:19

Hi Rachael

Thanks for the advice. I have received quite a few emails and am not sure how to reply to everyone in one reply and so will do it individually. I think it is going to be trial and error with the medication. We have an appt on tuesday with the Paed and so hopefully we will have some answers then. I have been told that the omeprazole and domepridone are the two best ones to be in on and so we shall see. thanks for the tip about giving the domperidone 15 minutes before a feed, this was never relayed to us.

Hopefully things will get better with time....

Hope all is ok with you and Aidan

Jacqui

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Permalink Reply by Jennifer on June 5, 2008 at 16:33

Hi Jaqui, I can honestly say I know what you are going through. It isn't going to get easier for a while yet I'm afraid. Callum is 5 months old and at his worst. Can I ask what a floppy larynx is and how it was diagnosed?
I really would recommend a wedge or harness. Callum has only just learned to sleep without being swaddled. The way around it is to use a small pram suit. We got one from vertbaudet online store. It's got velcro sides and swadles the whole body. We used it with a Tucker sling www.tuckersling.com or I suppose you could just use a normal swaddle blanket. I'm not sure about other makes of wedge but with ours you just put the baby in the sling part first then swaddle as usual. The blanket fits underneath the sling. Hard to explain I know!

If Grace does indeed have lactose intollerence, it is likely she may also be intollerent to other things such as soy and wheat which she will most likely outgrow. You could ask your docs for Neocate which is the most hypoallergenic formula available and is easier to digest than even breastmilk. The milk proteins are completely broken down and it often helps even if babs is not intollerent. It goes through the system quicker than usual therefore the stomach is empty quicker.

We also found Callum to be worse on meds than off. He is more sick and cries more. We stopped gaviscon a few days and noticed a marked improvement! Mad!

Grace is on the best meds for her condition if she has indeed been diagnosed correctly. They are the most powerful. The only thing is to ask for an increase if there's no improvement in 2 weeks. (if she's not already maxed out).

And don't worry about waffling - you should read some of my posts!

Jen x

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Permalink Reply by Jacqui on June 6, 2008 at 21:23

Hi Jen

Thanks for all the information, I cannot believe there is so much to it all but at least there are people like you who have the experience to help others.

A floppy larynx is where the muscle around her windpipe has not developed yet (but will do over time) and causes her breathing to be quite laboured. She sounds like she is snoring all the time and always makes funny noises in her sleep an when feeding. This is making it difficult for Grace to feed at times and so she has to suck harder. They said this then could be causing the milk to come back up. Who knows!!!!

I think it is going to be a couple of months of trial and error really. I was so hoping that by the time she was 3 months old, this would be all over but it doesnt look that way after reading the responses that have been sent to me.

Oh well, at least we are not alone

Take care
Jacqui

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Permalink Reply by Jacqui on June 10, 2008 at 9:59

Hi Jen

Sorry to be a pain. I have looked at the tuckersling and am a bit confused. I know you have explained it but maybe I am being a bit slow. The tuckersling velcroes the baby into a type of harness but how would I swaddle if the harness comes up between the legs? Sorry, just want to make sure I am getting the right thing. I also looked at the website for Vertbaudet but couldnt find anything.

Thanks
jacqui

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Permalink Reply by Jennifer on June 10, 2008 at 10:15

Hi Jacqui, Sorry it was confusing...it confuses me! The sling is only attached to the mattress at the top, under the baby's head. If you strap baby into the sling then gently lift them up and slide a blanket underneath baby you can then swaddle as usual. The only part of the sling that comes out of the swaddle is at the top - which is open anyway. If I still make no sense, I can email a picture to explain. I really would recommend the tucker though, if you can afford it, it is well worth buying.

Jen x

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Permalink Reply by Jacqui on July 18, 2008 at 18:59

Hi Jennifer

How are you? Im not sure if you remember but I asked you about the tuckersling and how to swaddle with it. I actually have another question...the swaddle we have at the moment is getting too small and you mentioned that you used a pram suit. When I look on line for a pram suit, all I am seeing is an all in one outfit but the arms are not swaddled. Where can I get one from and what do they look like? I have looked at Vertbaudet online and they are not on there.

Also, are you the same Jennifer that is pregnant? If so, congratulations. I have been put off having another child at the moment...at least until I can get to grips with Grace and her reflux. I do see how it makes you more determined to get things sorted with Callum now. There is not enought help out there really is there.

Anyway, take care
Jacqui
x

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Permalink Reply by Jennifer on July 18, 2008 at 19:23

Hi Jacqui,

I'm good thanks for asking :) How are you?

I have just had a look on Vertbaudet myself and cannot find it either. What a shame, it looks like they have stopped doing it. I also had a look on Ebay and it seems nobody is selling one either. We struggled to find a bigger one after the pram suit so we gave up and just stopped swaddling him. We thought it was going to be a nightmare but after a few whinges, he went asleep and we have not looked back!

How is Grace now?

I am the same Jennifer who is pregnant yeah :) Thank you :) God knows when we got the chance!

Jen xxx

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Permalink Reply by Jacqui on July 18, 2008 at 20:22

Hiya

Thanks for looking for me. Im fine thanks. Grace tends to have good and bad days and nights but generally we seem to be coping better now than before. It is just a nightmare when she wakes in the night as she knows no other way of going back to sleep other than being fed or held up after a feed!!!

Congratulations again.

Jacqui
x

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Permalink Reply by sharon on June 5, 2008 at 16:55

Hi Grace my daughter also got worse on meds but she is a lot older but they did try and take them off her whilst in the hospital to do a ph test and by god she was 100% worse so she does need them. After 24hrs they put her back on the meds and upped them but she is 15mths old she is on the highest dose they can give. Zoe is also on omeprazole and domperidone and gaviscon but she is on nutramigen milk and dairy free diet. I have also propped Zoes cot up and like Grace she also rolls down but can't win. Zoe moves up and down all the time anyway, i also think she is allergic to something else as well but i don't know if they are going to do tests yet i am waiting to go to hospital for a brain scan for her, i hope you sort things out with Grace. Good luck. Sharon x

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Permalink Reply by Jacqui on June 6, 2008 at 21:25

Hi Sharon

Thanks for your response to my note. We saw a dietician today who has also said about maybe going on a dairy free formula but we are going to wait and see how the Lactose free one works first.

You mention that Zoe has to have a brain scan, can I ask what this is for?

jacqui
x

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