Not sure if it could be reflux or intolerance or??

[lollydove]

HI,

Im just going to do a quick cut paste first of all of my bubba's symptoms:

-congested nasal passage (mucus-y since birth) but dr's said she's probably got a 'little cold' ... since birth and when it doesnt run?
- she wheezes quite a bit, ive only recently been told that its wheezing i didnt konw what it was but i tried to explain to my dr what she does and she just laughed and said i need to relax a little more
-she's always arched back and hated anyone holding her in their arms for cuddles or feeding or sleeping, she'll arch right back and whinge until you put her down. i thought this was a behaviour thing but now im quite sure its not
- ff since 4 months, she has always been such a 'fussy' eater and pulled off every few mins (just for the initial ten mins) and often had to be dream fed. once she went 14 hours without eating and i was STILL told by dr that she's a healthy weight so not to worry! i now think it must be because of reflux too. she'll also only eat 130-150mls at a time never the 250 she's supposed to
-she used to sleep all night from 6weeks old and it would be on and off i.e. 2 months she'd sleep through then it would be disrupted agian for unexplained reason, but in recent weeks the last two weeks she's been waking up anywhere from 4 to 10 times a night and day naps are now seeing her wake up after 30 mins and need resettling which is often impossible
- not sure if this is normal or not for a ff bub but her poos are (sorry tmi here) quite runny and watered down or pasty and are either mustard yellow or khaki green
-she was throwing up not all but many feeds so changed from karicare gold to kari AR

My poor girl has not had more than 3 hours sleep in a single block in over a week now. She still seems very happy and alert during the day but isnt waking up happy after a nap like she used to, becuase she is still tired.

My question is, does this sound like reflux or do you think it could be an intolerance problem? I noticed somehwere else you mentioned some symptoms could mean anything including a UTI. HOw exactly should a dr be diagnosing her and how can they tell? Because twice now ive been to two different drs and explained some of the symptoms as they happened (meaning when she first started throwing up i went to dr and asked if the wheezing/sucking back air and congested nose had anything to do with it) and both drs didnt do much, just took her temperature and looked in her ears, weighed her, felt tummy and that was pretty much it.

Is this all they should be doing to get a diagnosis?

Thanks so much in advance

[RISA]

Hi,
Thanks for contacting our organisation, and congrats on the birth of your new little bubba. Is that a pic of her you have displayed??? (she's
gorgeous) :)

I'm sorry that you arent getting any satisfaction from your doctors, and feel as though they aren't taking your concerns seriously. I strongly believe in listening to a mother's instincts and if she feels something is wrong, then I think that should be taken seriously.

All the things you are describing can fit with reflux, so I do think you are right to suspect it. It isn't something I can diagnose, and as you have seen me write before, it can present similarly to other problems. some doctors will check their urine to make sure there is no infection, but basically, reflux is often diagnosed just on the description from the mother. There are some tests that can be performed, but most children aren't given any tests (it isn't necessary for most). I'm not sure what the conditions are that would prompt a gp to test the urine, but if you are concerned it could be something like that, then ask.

Reflux is a very difficult condition- not only to diagnose, but also to treat. There are so many different ways it can present, and every child can look so different. One may vomit a lot; another may just be irritable; another may have feeding and/or sleeping problems. Others can have breathing issues, or ear infections etc etc, so it isn't always an easy thing to diagnose, especially if they aren't vomiting.

It must be so frustrating for you to be told not to worry because she is a good weight. Children can have severe reflux at times and yet still have good weight gains, so that can't be used as a measuring stick. Nor can the fact a bub sleeps at night, as some refluxers do (perhaps out of sheer exhaustion).

I think it is important for you to listen to your instincts; which are obviously telling you that something is wrong. While they are telling you that, I think it is important you continue to pursue the doctors until they do start listening to you- or until you feel satisfied at least.

One possibility- Do you think it's possible she could be constipated since you changed her to the AR formula? That is really common and I wonder whether some of her discomfort and problems have started since you started it. (and sometimes people who are constipated do really runny poos)- just a thought.

It is also possible that she has issues with food sensitivities, particularly cows milk protein as that seems to be the most common one. It can be very confusing as these issues can cause reflux. There are medical studies that put the figure at approx 40% of reflux bubs suffer from cows milk protein allergy, so it is often a significant issue. I wish the answers were easy but often its a matter of trial and error and following your instincts, until you find something that does work.

It may help if you keep a written record of what is going on with your daughter. Write down all her sleeps (and how long it's taken to settle her); what her feeds have been like; also what her behaviour is like and also her poos- and anything else that you consider pertinent. That could make an impact, and its a technique i have used myself to good effect. somehow doctors often seem to take what is written more seriously than what we say.

Another option is to take a friend in with you, someone who can back up what you are saying. That can change the drs perception too, that it isn't just a problem of an anxious mum, but something that others have noticed too. That can sometimes make them take notice!

And the last thing I can think of to get the drs to listen to you, is videoing her when she is wheezing or having problems feeding- (or feed her in front of the doctor)- sometimes seeing is believing.

If it is reflux, there are certain things that can make reflux worse, and perhaps that is what is happening at the moment? Things like teething, immunisations, being overtired, constipated, starting to crawl, a change in routine or even hot, humid weather can all cause reflux to flare.

I hope that info helps. Please keep trusting your instincts, and pursuing it with the doctors, and I hope you find the answers you need.


Glenda

[lollydove]

thank you so much for your response glenda. i really appreciate it so much. we had such an awful night last night- she was waking every half hour or every hour so between 7pm when she went to bed and 12am she woke 5 times then between 12 and 1 she woke twice and at 2 she couldnt get back to sleep until 4 and you could see she was so tired but she kept crying and rolling over :( its been much the same all day and im hanging out for my dr's appt which is in an hour. I really cant cope with this lack of sleep much longer and I know she cant either poor little thing i feel so bad for her. Its really hit me hard today, because for the last few weeks i havent had more than 4 hours sleep a night and no day naps but last night was the worst. i dont think its just the AR formula because she did have a few bad nights like this before she went on it. i was prevoiusly using karicare gold and adding karicare thickener but i havent been able to get the thickener as easily to changed to AR. She was very badly constipated the first few days on it- she was straining so badly and crying from teh pain, going all red and pushign so hard it was so heartbreaking. they were so rock hard and getting stuck halfway so i tried many things and eventually had to put water up there to help things along and she has since gone back to the 'normal' runny poos that she always had prior to this formula. maybe doing them a bit more often and filling the nappy much more though actually. i had no idea that constipation can also be in the form of runny poos?

another thing i forgot to mention is that she has always been a 'snorter' since birth, particularly when she's crying. im not sure if that means anything though.

thanks so much again for your helpful info, i will be going in to the dr's well informed this time :yes:

[RISA]

Hi,
I'm so glad I was able to help- just knowing you aren't alone through all this can make a big difference too. From what you said about her being so constipated and now doing more runny poos (volume and frequency), it may just be worth mentioning that to the doctor. Sorry if too much info, but if there is any bulk still there, often the sloppier, watery stuff can slide around it and out- it's called overflow.

Whether that's a factor or not, I hope you get the answers you need and she feels better soon. Please let your doctor know that you can't cope with the lack of sleep much longer. Sleep deprivation is used as a form of torture and it's really easy to see why!! If your doctor isnt listening, then resort to the desperate measure- just cry!!! I'm sure you're probably not too far from it anyway, and that tends to make them take notice.

Hang in there, it will get better!!! (and please let me know how you get on)

Glenda