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please, can anyone help![sad]

(59 Posts)
kail Thu 10-Mar-05 12:45:02

My daughter is now 17 weeks and only weighs 10lb 14 oz eventhough her birth weight was 9lb 4oz! I started off breast feeding for 6 weeks but there was no weight gain so i swithched to bottle feeding, things just got worse we found out at her 8 weeks check that she was very floppy for her age and her weight gain was extremely poor. (maybe due to her being sick alot?) She never really took more than 2ozs of feed at a time. She was admitted to hospital in January and after spending a week there with hardly no weight gain. She now has a nasal gastric tube in and is fed high protein milk with thick n easy in it and she is on anti sickness and anti acid drugs.(she can no longer feed from a bottle).She has has all sorts of test including MRI scans, ultrasounds of brain, digestive system plus many more test all results have been negative!!
I am in such a state and nobody can seem to offer me any help or support. Is there anyone out there was has been through anything like this? I just need to know that i am not the only one!!
Thanks Kail

ThomCat Thu 10-Mar-05 12:50:02

I'm sorry I can't help but wanted to bump your post up so someone who can help sees it easily.

fastasleep Thu 10-Mar-05 12:56:01

I really don't know very much at all but there was someone next to us in hospital with Theo who had a son who has a slight neurological problem - he doesn't get hungry! His brain never let him know that he was hungry, I don't know much at all about it...but the way you've struggled with feeding yours sounds very much like her story.... I hope someone else knows some more! I don't even know the name for it

Blu Thu 10-Mar-05 12:56:54

Kail, this sounds very distressing for you, and I hope that the doctors find an answer soon.

Maybe post this under 'Health' too?

Someone will be able to offer real help or similiar experience soon.

So sorry you are having this worry - congratulations on the birth of your little girl.

biglips Thu 10-Mar-05 12:59:25

im sorry that i cant help you but i hope someone else can - hope your Dd gets well soon ((((((hugs))))))

Peckarollover Thu 10-Mar-05 13:03:38

Hope your DD gets better soon - are there more tests that she will have?

sparklymieow Thu 10-Mar-05 13:09:26

Hi, i don't want to scare you, but has your DD's heart been checked? Its just that this sounds like a friend of mine' little boy who has DCM.
I hope you are ok and your DD gets better soon.

delllie Thu 10-Mar-05 18:38:05

Yes, we have been where you are know, my DD was 10lb at 17 weeks - up from a birth weight of 7lb 10oz and like your DD wouldn't drink anymore than 2oz of milk at a time. She still only weighed 13lb at 15 months, to cut an extrememly long story short, we found that she had severe acid reflux at 18 months, her old ped didn't think DD's reflux was bad because she wasn't 'sick' enough and she didn't cry enough!!! Thank god we sought a 2nd opinion!!! Within 8 months of her starting the appropriate reflux medicines she doubled in weight and we have no problem with her weight now although she does have some feeding difficulties still. DD is 3 now and has some development delays and has low muscle tone but every test she has had done has come back negative
I certainly can identify with how you are feeling at the moment, I still panic now when DD doesn't eat well.
How long has your DD been on the anti acid drugs, is it ranitidine and domperidone she is on??

Potty1 Thu 10-Mar-05 18:46:44

Kail - I've been there too with dd. She weighed in at 10lb born and by 14 weeks had only gained a pound. At that point we found out that she had a heart problem (this was despite lots of tests for other stuff that came back negative). As sparklymieow says has your dd had her heart checked out?

Dd had surgery and was tube fed for a year (she's 11 now but I remember it like yesterday). She had loads of stuff added to her formula (maxijul and calogen are a couple I remember) and she hardly ever took anything orally. She was pump fed at night for a while too. What happens if you try to feed orally? Does she have a go or refuse point blank?

Its a really stressful time for you and I understand completely that feeding and weight gain just seems to take over your life.

kail Fri 11-Mar-05 11:43:59

To Thomcat,

Thanks i am new to this so wasnt quite sure what to do!

Kail

kail Fri 11-Mar-05 11:47:18

Fastasleep,

I don't think that the docs think her problem is neurological as the MRI did not show any probs, but thanks for your response.

Kail

kail Fri 11-Mar-05 11:51:11

To Sparklymieow,

I have just been told today that my dd has Patent Ductus Antemosus, although doc says this normally is not a servere prob!It should have closed but as she has poor weight gain it has not yet. My dd will see a cardiologist soon, then maybe i will have a better understanding.

Thanks for your reply

Kail

kail Fri 11-Mar-05 11:52:21

To Blu,

Thanks i will.

Kail

kail Fri 11-Mar-05 11:53:39

Biglips,

Thanks for the hug, really needed that.

kail

kail Fri 11-Mar-05 11:56:31

To Peckarollover,

Yes, we are still waiting to see the Genetisist, to see if they can find anything, although we have to wait until May for this as the doc does not see it as urgent! It's driving me mad.

kail

kail Fri 11-Mar-05 12:10:43

Dellie,

Thank you so much for your reply i don't feel so lonely now i know that there are other families going through similar problems.

Yes, my dd has just started Ranitidine and Domperidone she has been on them nearly a week but she is still being sick at least once per day and is now suffering from diarrhoea! and my dd also does not cry very often!It seems that her body does not want the food, I have been told today that she has Patent Ductus Antemosus(heart murmur) they are saying it's not life threatining and only due to poor weight gain, never the less she still will need to see a heart specialist.
It just seems never ending the only thing now that we are waiting to confirm that is if she has a genetic problem and we have to wait until May for that.
I am glad that all is ok with your dd now

Kail

kail Fri 11-Mar-05 12:31:23

To Potty1

Thanks for your reply.
Yes, I was just told this morning that she has Patent Ductus Antemosis(heart murmur)although the ped has said that it is due to her poor weight gain,and when she gains weight it should rectify itself she will still need to see a specialist just to get a more indepth view! We are also waiting to see a genetisist to see if there are any problems there, ped thinks they will not find anything but they are just ruling it out.
My dd used to fed ok even if it was only a few ozs at a time but since her last stay in hospital for a week where they only tube fed her she now finds it really hard, she has no problem with sucking but gets distressed when trying to swallow.The ped has now suggested trying a soya besed milk just incase she is milk intolerant, i really hope it stops her being sick.
Was your dd not hitting her developmental checks due to her poor weight gain? My dd is fine mentally it seems she just has a probelm with head control, she is only now just starting to hold her head up.
I'm finding the tube feeding really hard, as she is always pulling it out, i constantly have to watch her a feel like i can't leave her for two minutes i even take her to the toliet with me!I have now learnt to pass the tubes as i was spending so much time in the hospital and it was hard on my other two kids as you will know it is so hard and my dd really cries when the tube is inserted.
Will this ever end!

Kail

piffle Fri 11-Mar-05 12:31:37

kail, yes with my daughter
My daughter has a genetic syndrome called Noonan Syndrome, she had low muscle tone, she only ever ate 5 mins at a time, I continued to breastfeed as I felt something else was wrong
she was found out to have heart murmur which caused the low feed and weight gain
This may not be the same as your dd, but it is worth enquiring about, for your peace of mind maybe, some underlying genetic issue.
My dd by the way is a happy healthy toddler now who eats like a horse but is still small.
Good luck and please keep posting, hope you're ok, I can certainly identify with your panic
Totally have been there too
Jane aka Piff

piffle Fri 11-Mar-05 12:39:31

just re reading my post I hope it didn't sound alarmist
It's just that a support group I belong to has a lot of babies who have had mild to severe feeding difficulties, fail to thrice and variety of heart complications, some mild some severe
amongst other symptoms too
pls ask away, the symptoms you ran out at first just pinged my brain into thinging it was sounding so much like what my dd has
It of course may not be the case, so apologies

biglips Fri 11-Mar-05 12:53:10

Kail - yeah no problem... ill give you another (((((hug)))))

Potty1 Fri 11-Mar-05 14:15:12

Kail - yes it will end....its a battle at the moment but it will. A PDA causes more blood than normal to go to the lungs, which in turn makes baby breathless and they find it hard to feed. Sucking is hard work and if you're out of breath its hard to swallow and breathe at the same time. Add a tube and well, you get the picture. How long do you have to wait to see the cardio and which hospital are you going to?

Dd was delayed in meeting her milestones, but this was mainly because her heart problem wasn't diagnosed until very late (almost too late ) and following her surgery she spent a long time in ICU, so lost all her muscle tone. Her heart didn't recover as well as expected and initially she was just too knackered to do anything but lie there. She sat up unaided at about 10 months, then learned to bottom shuffle and walked (in a fashion) at about 20 months. By the time she went to school she was above average developmentally. She is still pretty skinny but that is because her heart is an ongoing problem.

For me the tube was actually a benefit. It took the pressure off feeding and she did gain weight after surgery all be it slowly. Plus all her meds went down it too. When your little one pulls her tube, have you tried to give a small feed - just not having it there can make it easier to swallow, although she probably won't take much if she's out of breath. Its good that you are able to pass the tube yourself - I had a go but just couldn't hack it, its not pleasant is it?

kail Fri 11-Mar-05 21:37:43

To Piffle,

No you have not alarmed me, i am just happy that now i have people to talk to instead of sitting at home crying all the time, thinking i was the only one, i now know that i am not!
I have never heard of Nanoon syndrome, did you find out that your dd had this by a geneticist? What are your dd symptoms? I think that my dd has already had a muscle tone testing and this was fine, if you have any other suggestions please let me know. How did you find out about the support group?

thanks Kail

ionesmum Fri 11-Mar-05 21:53:14

kail, a big hug from me too, for you and your little one.

Piffle, my cousin has Noonan Syndrome, as does her daughter, and (we think) our grandmother had it too. My nan was over eighty when she died, and my cousin is happily married with two children. She has had health problems (she has needed her gall bladder removed), is very short and had mild learning difficulties, but now she's a TA.

kail Fri 11-Mar-05 21:54:27

To Potty1,

My dd does not seem to be out of breath although it could explain why she can't drink from a bottle. To be honest since she was in hospital afew weeks ago and they only tube feed i have only tried to bottle feed a couple of times she gets so upset, but yes i will try when the tube is out, maybe she wont find it as hard.
How old was your dd when you found out she had a heart prob?
We are seeing the cardio on 20th April at the Victoria hospital, blackpool. My ped told me that hopefully if she gains weight the PDA will correct itself but will know more after appt. All the ped keeps saying is lets wait and see what happens, this is not what you want to hear i want answers but he says he really does not know what the prob is.
This afternoon i got a call from the genetic counsellor she is coming round on monday, maybe she might be able to shed some light.

kail Fri 11-Mar-05 21:57:51

To ionesmum,

Is Noonan syndrome hereditory? I don't think anyone has had anything like what my dd has?
Cheers for the hug

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