Help Please

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Permalink Reply by sharon on June 6, 2008 at 21:42

Hi Jacqui Zoe has to have a brain scan has she as been having seizures during the night she as also stopped breathing a couple of times i don't know wether the two are connected. But i have read on the internet that allergies can cause seizures so i am going to put this to the pead next time i see him. It is awful how a lot of doctors dismiss us thinking we are neurotic when our babies are suffering why would we want to make something like that up.....Zoe was always thriving and hardly ever lost weight she did when she was in hospital even she put her nose up at that food, she lived on bananas bless her. Anyway will let you know how it goes. Hope Grace doesn't suffer too much for you. Sharon x

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Permalink Reply by Jennifer on July 18, 2008 at 21:09

We are having a brain scan done next week. I think Zoe is having the ultrasound one done if I remember correctly! Callum had one of those done a few months ago. It is to check the amount of fluid. If there is too much, it can cause vomiting.

Callum's one next week is an MRI scan. We don't know anything about it yet as we are having it as an inpatient. It is for the same reasons as the ultrasound I think. I'm a bit worried as I read on the internet as it is under a GA. I really don't want him to have another :(

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Permalink Reply by Julie on June 5, 2008 at 22:39

Hi Jaqui,

I would not say you are waffling, infact I understand perfectly just what you are saying! I am sure the people here will all sympathise completely. I only joined the site yesterday myself and I've had some very kind replies to my questions so get it all out and then we all can eh!!!! My son is only a little older than Grace (8 weeks last monday) so I am no expert at the moment. However my mum has GORD so she knows how the babies feel. We are experimenting with different things also. I too am breastfeeding but the weight loss and weight gain was a worry not so I started supplementing, at least now he is putting on weight. I have been awfully confused by the whole experience so far. We have been in and out of hospital since Luke was 9 days old, its been a nightmare. I think the way we are treated is awful. Comments from doctors range from he's hungry, have you tried winding him? Well he looks healthy enough etc..etc.. It was decided that his birth weight was wrong, very wrong and that he had not really lost more than 14% of his body weight!! (I hope I am making you feel better here! lol) I won't go on about the rest of it, I daresay its an all to familiar story. Luke seems better on gaviscon at the moment. I am feeding him Aptamil Easy Digest and feeding him myself twice a day. I asked about the Lactose intolerance and was told there is no test for it and to try Lactose free and see if it made a difference! Of course if they are Lactose Intolerant breast feeding is out! So what do we do eh????

My mum is going to buy a sleeping wedge as my aunt who works in St. Thomas's Special Care says they use them there and they are good. I think some of the wedges I have looked at would still work if Grace was swaddled, there is one that goes the length of their back so keeps them on their left side making digesting easier. It also raises them a little.

Luke is having treatment with a Cranial Osteopath so we will let you know how we do with that. He has had 2 sessions so far. Lastly we are learning the massage thing! You go up the right leg across the tummy and down the left leg/side! (My mum is a Reiki Master and does indian head massage and Tai Foot Massage. so I'm hoping she will be good at that!) Apparently if helps a lot.

Soya milk will be my next try if we don't get on with the easy digest. Soya milk is obviously lactose free, also no animal fats so you never know eh!! I understand how you feel though and the washing eh!!

Like you Jaqui we are still at the trial and error stage! I hope things improve for Grace really soon. Luke has had a good day today, hardly any pain but plenty of sick!!! I can cope with that if he's in no pain. It hurts your heart doesnt it! At least we now know we are not alone!

Julie x

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Permalink Reply by Jacqui on June 6, 2008 at 21:39

Hi Julie

Sounds like we are in the same boat. Just to give you more info. The doctor told us that they can see if there is a lactose intolerance from the stools but not a dairy intolerance. However we went to see the dietician today and are a little bit clearer about it all.

Basically.....a lactose intolerance is normally temporary and is often caused by a tummy bug and once the tummy bug has cleared up, the gut repairs itself and you are no longer lactose intolerant. This is the sugar found in the milk. Some babies have a permanent lactose intolerance (very rare) and this needs to be controlled by diet etc. Lactose Free formula is best but if you are breastfeeding or wanting to use another formula, you can use Colief, which is drops (£10 for a tiny bottle) that you add to the feed or a little expressed milk to break down the lactose and kill it off. Or if you want to continue breast feeding without the hassle of using colief, you would have to go on a lactose free diet!!!

They have told us that Grace may have a dairy intolerance and so we would need to try her on another type of formula called Nutramigen (by prescription) which does not contain dairy or lactose. Again, if I want to continue to breastfeed, I would need to have a dairy free diet. I have already made the decision to stop breastfeeding anyway as I have found the past 7 weeks absolutely exhausting where it seems to be non stop feeding and Grace just does not seem to get comfortable when doing so. I know bottle feeding will not improve this but at least other people can help me with it. Obviously if things do not improve with this formula, then we can assume that she does not have a diary intolerance.

As well as the above they also told me that some babies who have a lactose overload can show the same symptoms as reflux in terms of crying when feeding, uncomfortable, wind, bloating etc and so at least we can start to see if it is the lactose that is making the reflux worse.

I would double check about Soya because I have been told not to give this to babies under 6 months old. I would maybe talk to your GP about other options.

We have Grace booked in for Cranial massage next week. Has this helped you?

Can you let me know where I can get the wedge that you were talking about.

Like you say at least we are not alone.

Hope you have a good weekend with Luke
Take care

Jacqui
x


So our plan is....keep her on the Lactose Free formula and use Colief for another week to see if she improves. If she doesnt, then try her on the other formula for 2-3 weeks. If there is still no improvement, then we can safely say that she has reflux and there is nothing we can really do to improve it.

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Permalink Reply by Michelle on June 7, 2008 at 6:46

Just be aware that some babies don't respond to some milks, so if you don't get results from nutramigen (which still has milk protein in it but just broken down), then ask your GP for a trial on neocate (this is an amino acids formula which has absolutely no milk protein in). My daughter didn't respond to nutramigen but did to neocate.

Just wanted to let you know that there is still another option in terms of the milk!!

Hope the nutramigen works for her though.

Michelle

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Permalink Reply by Julie on June 7, 2008 at 19:01

Hi Jaqui,

Well I wish you luck with the plan!!! It's so complicated isnt it? I have to say that since Luke has been on bottle most of the time he has put on weight, which he wasnt doing before! Maybe we are lucky. The cranial massage seems to be working I think. Luke is still uncomfortable but we do get some good days/nights where before we didn't. He has had 3 sessions now and I think we need to give a little more time before committing to whether it worked or not! Next week they are working on his head and we were told today that he has lossened up mostly now, so we shall see! It's all about stretching and that some babies don't unfold as well as others when they are born causing tension in the ribs and irritating the nerves into the tummy! Well it sounds feasible doesn't it????????? Anything as long as it helps eh!!! After reading some of the posts on here I realise that Luke has it mild compared to some and I feel lucky about that. It's still hard to see him in pain and so rigid. My little nephew is 2 weeks younger and so much more relaxed and floppy than Luke who seems to be unbendable and clenches his fists most of the time! He has started grunting quite loud now too!!! I wish you luck with your plan and your Graces cranial massage! Luke is quite happy having the treatment I think it is quite relaxing.

Have a good weekend also!
Julie x

PS I will try to find out the best wedge from my aunt and let you know!

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Permalink Reply by Katie on July 18, 2008 at 19:26

Hi Jacqui

My son is 7 months next week, and has had reflux since he was a few weeks old. He was put on SMA LF at 10 weeks, and this helped a lot, as he could digest it more easily. He was on ranitidine and domperidone as well as gaviscon. These didn't seem to do much good. He is now on ranitidine only, but has a thickener added to his milk. It's called thick and easy and it makes the milk into a creamy consistancy. This really helps with the sickness, and doesn't cause constipation like gaviscon. He was taken off domperidone as our paed said it wasn't any good and research didn't really prove that it helped with reflux, so it was pointless taking it. My son is so much better now. It took a while, but you will get there and things will get better!! The LF does improve things, and ask about the thickener as this may help with the sickness.

Hope this advice is helpful

Katie
xxx

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