Anyone with similar experiences or help!

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Permalink Reply by sharon on August 17, 2008 at 5:37pm

Hi Libby i am sorry to hear about poor Lucas, it is hard, and to be honest what you have described it does sound like he has allergy to milk protein. Zoe my daughter was diagnosed at 11mths old, by a barium meal up until then i bf up until Zoe was 4 weeks old she was constantly on/off all the time and just as bad through the night i was absolutely shattered with 3 other children to tend to. I went onto sma gold and she absolutely screamed the house down doc and hv said colic tried all the remedies which didn't work whatsoever i ended up putting her onto cow and gate comfort by this point she was projectile vomiting i went to docs and hv continuesly but they just said she hasn't reflux as she is gaining weight, so i persevered until she was 16wks old then i weaned her which stopped the sickness and colic instantly but then she started with a cough after each meal, her throat constantly had a ruckle which you could feel through her chest it was that bad, she had regular chest infections, and then she started with asthmatic cough on a night it was chronic, she always had disturbed sleep since being born, eventually after repeated visits to doc and hv i saw a different doc that i hadn't seen before i was so fed up, i was worried that Zoe had cf she looked at her notes and said you have been regular with the same symptoms and she referred Zoe to a pead and finally she had a baruim meal and was diagnosed with reflux she is now on top dose of Omeprazole, domperidone and gaviscon and nutramigen milk and dairy free diet. She has been in hospital since for 6 days as i thought she had stopped breathing i am now thinking she had a seizure as she has had a few more since, she had bloods taken and now they think she has more allergies as her total ige levels were sky high. So she is going to have eeg, and a lot more allergy tests. So just to let you know you aren't alone it is a horrible disease and every day is different. You may have hard times ahead as when they are teething it is worse, but you will get support off here and other forums i go on a couple and it is nice to be able to be understood as peads haven't a clue really they just go by text even now at 17mths old Zoe is a big girl and she is 30lbs and in 2-3yr old clothes the consultant and peads still say they are amazed she is thriving so they aren't always text book. Hope he settles down for you. Sharon x

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Permalink Reply by Emma on August 17, 2008 at 6:56pm

Hello - welcome to the site! I have found it very helpful and I hope that you will too.

It sounds like you and Lukas have been through a tough time.

My daughter, Fraya, is also 8 months old. She vomits large amounts of milk most days (ie a whole feed comes back up straight after feeding). She has been through stages of hating the sight of her bottle and when this happens I have changed bottle and she seems to then take to the new bottle. Even on a good day she is never a huge drinker anyway. I have found Dr Brown bottles very good, especially for reducing the amount of wind, which was one factor that was preventing Fraya from wanting milk from her Tomme Tippee bottle. When she was suffering from a major bottle aversion in June she ended up losing weight and was admitted into hosptial for 6 days (where she also had a PH study carried out). Again, she changed bottles to the hospital bottles (NUK teat) and has since liked her milk (having about 20 ounces a day). She isn't on any medication as it didn't do anything for her. She also vomits her solids and now hates all solids. I can't help much on the issue of solids, apart from take it very slowly. 1-3 mouthfuls per meal is a bonus for me now!
A blood test can be done for a cow's milk allergy. Fraya has had this done and is not allergic.
Fraya has tried Cow & Gate Comfort milk but it did not improve her vomiting. She has never tried Nutramigen but she has tried Pepti milk and she hated the taste of this. She is now on SMA High Energy milk to make sure she puts weight on.

I look forward to hearing more from you.

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Permalink Reply by sharon on August 18, 2008 at 8:19am

Emma just to let you know that the blood test for milk allergy alone is not reliable so Fraya could still have allergy or intolerance to milk as it only tests allergy and not intolerance. Did they also do a food challenge with Fraya and a skin prick test to back up the blood test? This is why she may still be vomiting as Zoe as had blood test which came back negative but when she has dairy/milk it totally cancels out meds so her consultant as said he is going to do further blood and skin prick tests plus food challenge. So if Fraya hasn't had these then i would be persistant. Good luck. Sharon x

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Permalink Reply by Emma on August 19, 2008 at 1:15pm

Hi Sharon
Thanks for your reply. No, Fraya has not had these tests! My paed hasn't even suggested them! I can't belive she went through a PH study when she could have had a few simple tests firstly! He is crap! We are seeing a gastro pead on 9th Sept so I will ask that these tests be carried out!

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Permalink Reply by Rebecca on August 17, 2008 at 7:46pm

Hi there Libby, it sounds as though you have had a really difficult time. My son also came home initially on an NG tube (as he had a cleft palate) - and although not very premature was exceptionally small - 3lb 12. His reflux wasn't diagnosed until he'd had two incidents of stopping breathing - one in hospital and one at home.

I hope it feels nice to be at home even if you are still struggling - especially as you waited so long to get your little boy there. Liam also has a bottle aversion - and now he is nine months we have completely ditched the bottle. He has some slurps from the Doidy cup - and the rest of the milk we add to his food. Weaning has been a v slow process for us - I think it was also hard at first with Liam because he was very little to try and wean early as we did, and it's only in the last six weeks he has really stopped gagging and started eating any more than very little. But now he is really enjoying it! The milk does go all over the place with the Doidy cup - and sometimes he accidentally pushes the cup and has a big gulp, but he is enjoying it from there, whereas the bottle made his life a misery. He has some water from a beaker but could do with improving his aim at his mouth!

It must be very very difficult but I would really recommend going slowly with the weaning and persevering. I kept mealtimes short (5-10 mins), as it was so stressful having longer ones with no eating going on - just food held in Liam's mouth! In Liam's case he didn't have a milk allergy, it was all apparently mechanical - and he now appears to be growing out of the reflux - no sick in about seven weeks. In the end he wouldn't have a bottle even asleep - after he had his cleft repair and sore mouth.

If you want a chat let me know your email and I can let you have my phone number.

Rebecca

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Permalink Reply by marmum on August 17, 2008 at 9:48pm

Hi Libby,
I hope things get better for you soon. My little one was starting to develop an aversion to the bottle so I started to dreamfeed him. At first he wouldn't take it sleeping, but after a couple of days of persevering he started to take the bottle asleep (day and night). I think it really helped that he loves his dummy, as this was how I first started it, ie pull out the dummy whilst he was sleeping and sticking the bottle in. Soon after he'd take it in his sleep even if he'd already spat out the dummy and was really asleep. In my opinion the fact that Lukas is drinking awake (no matter how little) is a really good sign. Mine started doing this and I was just careful not to over push him and now he takes some of his feeds awake.
We never had any tests to confirm milk intolerance (we started on nutramigen and then moved on to neocate which apparently tastes even worse) but my paed and the GI are really convinced that he's intolerant. I've just today very sadly thrown away loads of breast milk that I'd frozen a couple of months ago hoping against hope that they were wrong. I finaly decided that I didn't want to risk my son getting worse so threw it.
One other thing you should look into is whether the meds are right. It took us ages to find the right balance but we're now on lanzaprole and domperidone having tried ranitidine and omeprazole before them.
I really feel for you for having to go through this after everything else and especially with an older one (I too have one!) so hope your situation gets better soon.

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Permalink Reply by Ginny S on August 21, 2008 at 10:16pm

Find out about Enfamil AR a thickened dairy milk with some rice, some mothers have sworn by it. I found domperidone useless and badly affected my baby. Omeprazole great. I thought a feeding tube made reflux worse as it keeps the stomach valve open allowing contents of stomach up oespaghys more? Just that they considered this for my baby and decided against it when she was admitted and very bad (at three months). Stella is now 9 months, I have seen an improvement in last two weeks, not before. Stella would not take any of the hospital milks, she throws up violently on the whole lot, some I tried for weeks. We have been better off with Aptamil Easy Digest. And in fact she wasn't eating until I tried making her puree really yummy with milk and butter and now she eats it ... Try veggie purrees first as fruits very acidic. Sweet potato always a winner with us and it mixes well with baby rice to start with.

if he's not drinking anything, surely it doesn't make sense to give him the domperidone (that's how i found out it didn't work for STella, she was ill and I stopped it for a week as she was only drinking 10 oz a day and hey presto she got remarkably better without it). Omeprazole full dosage is important for us.

Good luck

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