Reflux 7 wks old.

[pharogirl]

HI,
My baby girl was diagnosed with reflux at 4 wks of age. We are to see the Pead next week. I have tried gavalison and S26 reflux thickened formula with no luck. I recently changed her to lactose free formula which has had a huge improvement. She still has her bad days(usually 1 out of 3 vs near on everyday) which is excellent. She still has the burning type pain in her throat, gags and regugitates alot. some days she throws up out of her mouth or nose whilst other days it comes up but not out of her mouth which she swallows. Some days she still screams with pain and becomes irratable due to fussy feeding and not sleeping - but with my eldest and my husband being lactose interolant as children i thought i would give the lactose free formula a go and im glad i did. My questions are is she missing any nutrients being on soy formula rather then normal formula? What are the common medications or steps will a ped usually take for a reflux baby? My baby had a rough start with her birth, she was bagged and resussitated for 7 mins from birth due to a reaction to morphine i had during labour. Does this have anything to do with reflux, like could the birth have contributed to her having reflux? She also has some sort of skin condition which she has cortosone for which has helped but we are unsure of what it is at this stage, the GP says it looks like dermatitus.. is there anything else i can do for her other then change her formula or make it thicker? regards,

[RISA]

Hi,
My goodness, it sounds like you had some scary times with her birth!! I don't know if that would have had anything to do with her reflux, especially as it is so common- but I imagine anything is possible. I can't see that the intolerance would be related to it though.

With her changing to soy formula, there is a possibility it isn't a lactose intolerance, but maybe a cows milk protein intolerance. Are you positive the issue in your family is lactose? (only asking because cows milk protein intolerance is very common in reflux babies) It's great though that you trusted your instincts and tried the soy formula, as it sounds like it made a big difference to her.

I think it would be best to talk to a dietitian or child health nurse about whether soy formula lacks nutrients. I'm sorry, but I can't answer that.

Something else to keep in mind is that apparently the protein in cows milk is quite similar to soy protein, and so a lot of bubs are intolerant to both (maybe in different degrees). It may be hard to work out, but her ongoing reflux symptoms may be related to that (or maybe not).
Reflux can be sooo hard to figure out ,and it really is a matter of trial and error as every baby is different. It makes coping with reflux quite difficult!

Sometimes changing to a formula that the proteins are broken down, can make a diffrence- so something like neocate or elecare may help too. They are prescription formulas so you need to talk to your doctor if that is something you want to consider. It may account for her dermatitis as well.

Other things a doctor may do is prescribe medication so that the level of acid she produces is reduced (meaning less pain, though it doesnt actually stop the reflux).

Did you try the Gaviscon on its own, or did you use it with the thickened formula? Both have the effect of thickening the feed, so if you used them together, it may have been too thick for her. If so, they may be worth trying again, only separately.

Other things that you can try are
- keep her upright following a feed for at least 30 minutes
- avoid anything tight around her waist, including tight nappies and elastic waistbands
- avoid any pressure on her tummy, so try to avoid slumping
- try burping her more frequently
- offer a dummy if that is something you would like to consider. that can help neutralise the acid by making more saliva, and also by encouraging swallowing to wash away and acid in the oesophagus
- try feeding slightly smaller feeds, slightly more often. if that doesn't work, try the opposite.
- offer tummy time before a feed, rather than after
- change her nappy before a feed, rather than after
- try elevating the head of her bed.

I hope some of those ideas help. Please continue to trust your instincts, and do what feels right for your family (in conjunction with your doctor). If you have any concerns, please talk to your doctor.

Glenda

[pharogirl]

Hi,
thanks for your reply. Yes with my husband it was a alergy to aniamal protiens/fat - even now as a adult he cant eat alot of it without making him sick. i didnt relize there was a difference between lactose interolence and a alergy to certian protiens. I will discuss this with the Peadtrition next week on her visit.

Can you tell me how dermitis would be related to that?

The Peditrition has advised me to try the galvasin again with the soy formula to see if that has a effect. She has been on it since yesterday so is a bit early to tell if it is helping as yet. I have taken the dummy away from her, as she doesnt sleep well with it as she has a few sucking problems still from birth and she cant seem to hung onto it for more then a few minutes which means at night im up to give it back to her constantly.

The only thing i think has become worse since changing her to lactose free formula is that instead of her half vomiting and swallowing it, this seems to make her vomit completely (comes out of mouth) and alot more frequently. Maybe because its thinner then normal formula perhaps...?

I dont think the galvison will have a effect personaly as i had her on S26 reflux formula for over a week (which is alot thicker!) and that didnt help at all. I did not relise that protien alergy's and lactose were different and that protien allergies are common in reflux babies. I will have to look that up on the net and see what i can find.

Bub is 8 weeks almost 9 weeks old and still only drinking 120mls every 3 hrs.. The reccomended amount is 180mls, but if she is happy with this amount should i continue with this? I dont wont to try and make her drink more and upset her tummy anymore then it is..

regards,
Jacqui

[RISA]

Hi,
With your husband having a problem with food, it makes me even more suspicious that;s part of the problem- I am glad that you will be able to discuss it with the paed next week.
If there is an allergy or intolerance to a food(s), the body can react in different ways- sometimes through the gut, with vomiting, diarrhoea, reflux etc; sometimes through the skin, with dermatitis/eczema; sometimes through the lungs and so on. I don't know how it is linked, just that it often is. Your paed should be able to explain more about it though.

Have you talked to the paed about her sucking problem? Perhaps that's also part of what's happening? It may be worth talking to him about her having a speech pathology assessment (they deal with eating/swallowing issues as well as speech)- at least to check to see if all is okay, or to work out how to help if it isn't?

There is a lot of information online about allergies/intolerances and reflux babies. There's a great article, just on cows milk allergy, at http://www.allergy.org.au/aer/infobu...lergy_milk.htm
and another one at http://www.allergycapital.com.au/Pag...ed%20food.html
I'm sure you will find heaps more as well, when you look, but that's at least a place to start.

The amount of milk she is drinking or needs to drink, will depend on her growth and development- what is her weight like? Is she growing well? These are questions for the paed, who will be able to tell you exactly what she needs.

Sounds like it is going to be an interesting appointment with the paed next week. If I had a long list of questions, I often wrote them down, and also took notes along as well- there's nothing worse than getting out of an appointment and thinking "duh! I forgot to ask about...., or tell him about...."

It does sound like you are on the right track. It may take a while to figure out all the missing pieces, but its often trial and error until you do.

I hope that helps

Glenda

[pharogirl]

HI,
Most of the things we can do for reflux we are diong already such as elevating her cot matteress, sitting her up more, burping atleast 4 times each feed, trying diff formulas (lactose free seems to have improved her condition), gavlison etc.. I am supposed to see the ped tommorow but have changed the appiontment to next week as i am having trouble getting a urine sample that the ped requested. (not fun to get from a baby girl! lol) The Ped did say after he gets the results he will try her on some zantac, so hopefully that will also help along with the lactose free formula. Do you know as previously discussed with the difference beween cow protiens defiency's and lactose interolence if there is any test or anyway to determine which one it is? Ive read most tests are inaccurrate diagnosing cows protien defiency and i would like to get a 100% positive diagnoses from the ped without spending months diong it and having my baby suffer in the process. She is 9 weeks old today and i really want to get to the bottom of this asap..

in regards to the sucking problems, i will mention it next visit as i havnt previously because my first born was such a good drinker that i just assumed that bub2 will take soem time considering the birth she had and the fact she was on a feeding tube for 3 days after birth. I tried her on the galvison again this week along with the lactose free formula and in diong so used a teat with a bigger hole. Upon using that teat, she will take 120- 180mls, but now she back on the normal formula minus the thickener with her normal teats she is drinking between 100 - 120mls. She is a real lazy sucker, and being 9 weeks old now and such a big baby (born 4.2kg) i feel she should be drinking a bit more. So i will definatley mention it next visit to the ped. Her general development seems fine, smiling & reconizing her hands now and she now weighs 4.8kg, which i assume is good weight gain from birth.. ??

Also, should i feel bad about not wanting my baby to be babysat by family or anyone whilst her reflux/condition is not sorted out? my family and inlaws dont seem to understand that its not that i dont trust them, its just i dont feel compfortable having her sat untill she is a bit more settled and more in a routine. this causes a little friction in the family, as i dont want the baby woken when we have visitors as she doesnt sleep well and i dont want to go out to much and i dont want her baby sat.. Am i wrong to feel that way?
thanks for your tips and advice.. regards, jacqui

[RISA]

Hi,
I know it all seems confusing about the different intolerances and allergies etc- but I think sometimes it comes down to elimination and reintroduction to be positive. Lactose intolerance can be tested for (though I have no idea how accurate it is either)- there is some information I found when I did a search at Kids Health which may help- http://www.kidshealth.org/teen/food_...tolerance.html

I'm really glad you are going to discuss your bub's sucking issues with the paed too- perhaps it will just be a matter of finding the best bottle/teat combination for her. I hope he can help anyway, but I do think it's important you talk to the paed about it.

I'm so sorry to hear that your family is hassling you about babysitting etc- I'm sure you have enough to deal with, without the added pressure from them! The problem with reflux is that most people think its a really trivial condition, and don't realise that reflux babies can be very high needs babies. They don't understand the importance of routine and sleep, and they aren't the ones who have to deal with the fallout if they are disrupted!

I really believe, as in all aspects of reflux, that you should do what your instincts are telling you! You are her mum, and you know what's best for her (whether you have worked out all the answers yet or not). You are also naturally concerned about your bub, and it's not surprising that you feel uncomfortable leaving her just yet. That is how you feel, so how can that be wrong? I can remember stressing whenever I left my daughter, even for a little while- even if I had just fed her (she was breastfed) and even if it was with my husband- I knew I shouldn't stress, but that didn't stop me- I knew she was probably crying and miserable for him and felt bad for them both, and anxious to get back. I do understand how you must be feeling about it, and if you aren't ready to let them babysit, then I think that's fine.

On the other hand, making sure you look after yourself and you get a break once in a while, is really
important too. Once you feel comfortable that they will follow your routine and your strategies diligently, it may be a great opportunity for you to recharge too. Perhaps you could talk to them about all this? Explain that while they may see an overly anxious mum, you really don't feel they understand the extra care and attention she needs above most other babies. Perhaps show them some information on reflux- our website has some great information that might help. We have an article on the impact of reflux on families which may help them to understand where you're coming from??? The addy is http://www.reflux.org.au/impactonfamilies.php

I hope that helps. Keep reminding yourself that you are doing the best you can for your bub, and hopefully they can respect that. Don 't forget too- it can be hard for family and friends to understand our perspective because all they see is a happy, healthy baby- they don't see the constant work that goes into keeping them that way, so it is hard for them to grasp. It sounds like they want to help, so hopefully some time soon you will feel comfortable enough so they can babysit and you can get a break.

Glenda