Support for Parents of "High Need" Babies

[adzuki]

OMG Grey - you poor thing! I can't imagine not having a few minutes to go online every now and again. I guess I am lucky Miss M takes a couple of 30 minute naps a day! This is exactly the reason why we need support IMO - having a high needs baby can be really isolating!!!

OK - As soon as I get a moment I am going to start a group! Maybe she can entertain herself for a few more minutes while I do it???


A

 

[adzuki]

OK, I've put in a request to move this to groups!

See you all over there!
A

 

[juliespencer9]

good i hope this does become a group x

 

[baby D]

I'll be joining you ladies - Amelia had colic, has reflux and still can't sleep all night 9 months on..... i am beyond exhausted as i work full time now. She really is a lot of hard work - people keep telling me it willget easier - i so hope so. xx Having said that, she is beautiful, intelligent and so so alert - i love her with alll my heart xx

 

[ruth222]

My son is exactly the same! He's suffered from colic and reflux pretty much since he was born. He has never slept for more than 5 hours at a time and needs to be held and have attention constantly.
He screams and screams for hours at a time and it really takes it out of me. I've walked out in the past and said I was never coming back. I had PND for a few months which really didn't help and I found it difficult to bond with him. He was also in hospital for nearly a week when he was 13 weeks with salmonella which was a very very worrying time.

He's still pretty much the same really. If you stop giving him attention and talk to someone else, he screams until you start talking to him again!

He is a little better with the reflux though since I put him on aloe vera juice. He's also on SMA staydown, gaviscon and ranitidine!

We found the methods used in the happiest baby on the block DVD really helped when his colic was bad and he still has to be swaddled when he goes to sleep. We also found his bouncy chair was a lifesaver... he's spent so many nights in his vibrating bouncy chair as its the only way he would sleep! He does sleep in his cot now in his own room, with a raised mattress to help the reflux.

I really feel for everyone who has babies like this, it gets sooooooooooo hard at times.

Has anyone else found anything that has helped?

I must admit we've had ups and downs with Lo, wind problems, suspected colic, and bad reflux, and still has. He is on gaviscon, which hes been on only a month but its starting to stop working as well I think, keep being told he will grow out of it but I just hate it seeing him throwin up, hes on solids now and still does it. Whats this aloe vera juice, I've never heard of giving that? and is this ranitidine effective? and how long are they supposed to stay on this?

 

[celine]

Wow am I glad I found this thread! My baby is quite the active one, whenever im with my antenatal friends they put their babies on mats and they lie there for hours and even just nod off to sleep - not my child! Oh no he needs to be held and entertained almost all the time!
Don't even talk about the first 3 weeks of his life where he never slept and my life was hellish!!
Ok he is getting better but good to know there are some more of us out there

 

[juliespencer9]

Wow am I glad I found this thread! My baby is quite the active one, whenever im with my antenatal friends they put their babies on mats and they lie there for hours and even just nod off to sleep - not my child! Oh no he needs to be held and entertained almost all the time!
Don't even talk about the first 3 weeks of his life where he never slept and my life was hellish!!
Ok he is getting better but good to know there are some more of us out there

yeah same here, mine will never just nod of to sleep, needs holding all the time and rocking to sleep every nap!

 

[Angel2Fire]

Ruth222, sorry to hear you're having problems as well.

Ranitidine worked really well at first, but it doesn't seem to be doing much now. (It used to seem to take some of the pain of the reflux away.)
Aloe vera juice comes from the aloe vera plant... its more commonly used as a gel on burns etc, and you can get aloe vera soap and shampoo, but there is also an aloe vera juice that you can take orally.
It says on the bottles not to give to infants, but I used to work in a health shop and I spoke to the manager and she said her daughter gives it to her baby twins and she has spoken to the manufacters and they said it's okay to give in a smaller dose. We give Chaise 2.5ml twice a day and it seems to be helping a lot He used to wake constantly through the night in distress, but now he sleeps for about 6 hours and is also a lot happier during the day. If we forget to give it to him it is really noticeable.
(I worked the dose out on Chaise's weight. I'm pointing this out cus all medicines are worked out on weight, then averaged out to an age.. calpol for example. But Chaise is quite heavy. He's being weighed on Friday, but at 19 weeks he was the average weight for a 28 week old! So I give him medicines based on the 6 moths dose.) They told us this when Chaise was in hospital, and gave him the full calpol does even though he was only 13 weeks.

Oh, and the doctor stopped Chaise's ranitidine when he reached 4 months but he got bad again very quickly and he's had to start having it again. I'm not sure how long I'll give him the aloe vera. I wasn't sure exactly how much to give so I started with 2.5 which worked, so i tried cutting down to 2ml and it wasn't quite as effective. The doctor said the reflux should start to get better as Chaise gets more established on solids, so fingers crossed!

How is everyone doing today?

 

[Angel2Fire]

Oh, and I just thought. Maybe we could all say what helps for us as it might work someone else too

I find that different things work from week to week. Sometimes I think "Wow I think we've finally cracked it" then the week after there's another problem!

These are things that have worked for us:

*Vibrating bouncy chair (Really seems to help with bad wind and reflux.)
*Slumber bear (Plays white noise, this really used to soothe Chaise.)
*Infacol before feeds
*SMA staydown formula
*Gripe water
*Swaddling
*Dummy/pacifier/soother
*Frozen banana on a stick for sore gums when teething
*Going out in the puschair (or just rocking the pushchair indoors.)
*The tv! (Seriously! Sometimes all Chaise needs is a distraction.)
*Being put outside the back door in the puschair (another great distraction.)
*Dr Browns Bottles (Excellent for colicky babies.)
*Fisher price newborn to toddler bouncy chair (Reclines, sits up, vibrates and has a rocking or static setting. Also great for big babies!)
*Baby Massage.

Sorry for the huge list!

 

[adzuki]

Great idea A2F! I find that what works for my LO changes ALL the time - it will work one day, but not the next, but then it will work in 3 weeks - that kind of thing (which is the reason why I have an ergo, a snugli, and 3 slings! I rotate them!)

Before my list though - My LO is going to be on the ranitidine until 8 months at least. It really has helped her, but she still has some bad days. She is sleeping A LOT better with it, and with being on rice cereal before bed. Our pediatrician had us do this because she was spitting up and choking in her sleep - the rice helps her food stay down Oh, and she's on domperidone, to help stuff move through her faster so there's less to spit up 2 hours after a feed. She had a really bad spit up day when we went to the pediatricians, so he took it very seriously!!! her choking has stopped though, and the hiccupping is also a lot less!!!

baby D - apparently the alertness is a definitive characteristic of a high needs baby (well, so all the literature on it says) - which is funny because that's what everyone kept saying about miss M when she was born and in the weeks after - that she was always so alert! Too bad she can't block out stimulation!

Celine, I hear you SO loudly on that one - I envy my friends who can bring their babies everywhere and leave them sitting in bouncy chairs or on mats or something. Sigh. A sling has really helped me - when she's in it, she feels safe and it blocks out most stimulation for her, so she becomes calm and will even nap! She feels so secure in it that I always "wear" her when she is around crowds - she can't handle other people otherwise.

What has helped
ranitidine and domperidone and rice cereal combo
sling!!!! See above for how I use it. She finds the stroller too stimulating to nap, and she feels vulnerable in it.
Sleep Sheep for white noise
The Happiest Baby on the block book
a very rigid before bed routine that incorporates lavendar aromatherapy massage
napping with her, in the sling to keep her safe, on me
a soother

And for me:
wine
yoga
sleep
rewards at the end of every day


A

 

[juliespencer9]

im might try that aloe vera juice, where could i buy it from?

als can i ask everyone what your baby like through the night, how many times do they wake? mine wakes about 5 times roughly every 2 hrs all through the night

 

[juliespencer9]

Oh, and I just thought. Maybe we could all say what helps for us as it might work someone else too

I find that different things work from week to week. Sometimes I think "Wow I think we've finally cracked it" then the week after there's another problem!

These are things that have worked for us:

*Vibrating bouncy chair (Really seems to help with bad wind and reflux.)
*Slumber bear (Plays white noise, this really used to soothe Chaise.)
*Infacol before feeds
*SMA staydown formula
*Gripe water
*Swaddling
*Dummy/pacifier/soother
*Frozen banana on a stick for sore gums when teething
*Going out in the puschair (or just rocking the pushchair indoors.)
*The tv! (Seriously! Sometimes all Chaise needs is a distraction.)
*Being put outside the back door in the puschair (another great distraction.)
*Dr Browns Bottles (Excellent for colicky babies.)
*Fisher price newborn to toddler bouncy chair (Reclines, sits up, vibrates and has a rocking or static setting. Also great for big babies!)
*Baby Massage.

Sorry for the huge list!

i always put mine in front of the tv

 

[adzuki]

LOL - me too - Baby Einstein DVD's are a saviour around here!!! (bad mommy!)

I am very pleased to say that night sleeping is one of the areas in which Maia excels Daytime naps are another story, though she is getting better - she didn't nap for about the first 8 weeks of her life! At night though, she sleeps through - from about 8pm until about 6am! (this is why I can remain sane I think) I think the rice cereal helps with that!!!


A

 

[adzuki]

UGH! I am so annoyed. Miss M woke from her nap, so I fed her and burped her and headed to the store. Lately, she doesn't like other people, so she screamed and screamed. Little old ladies (and the cashier) came up and made comments like "Oh dear, someone is ready for some food" and "that's all right dear, it will all be better after a nap." OK, I know you are only trying to help when you give me veiled advice like this little old lady, but I HAVE ALREADY TRIED THESE OBVIOUS TACTICS. And don't give me that LOOK, this is the status quo in my world, and I may not like it, but I do think I am accepting it with as much compassion and grace as I can muster, so leave me alone!

I declare tomorrow "Hug a mother of a screaming child" day. Banish "the LOOK" and embrace the hug!!!!!

Sigh.

A

 

[juliespencer9]

sorry you have had a bad day! i know what you mean though!
My baby sounds just like yours, was feeding her ready for bed earlier,put her in cot and....fists clenched, shaking and screaming, lift her out and ....SILENCE, but her back in and ARGH! she goes mad so i had to rock her to sleep then lay with her on me then put her in cot! she will be awake again for milk in about half hr.

 

[adzuki]

Oh no, that sounds horrible, Julie!!!

Hugs!

A

 

[Scally]

Thank u sooooo much for this thread!!!!!!
I have been made to feel lately like such a bad mum. My LO is lovely, i adore her, but i have had my family visiting who when she cried asked whats wrong with her now?!
She cried all the way home from the airport (hates her car seat), she refuses to sleep most days so gets overtired and cries, she needs to be held alot, and has to be rocked to sleep, and only occasionally will she go down for a nap in the day. I am probably feeling oversensitive but my visitors have just tutted when she's cried and not helped at all. It doesnt help that my sister has a baby 3 months older who never cries!!!
My LO has colic, and had a very traumatic delivery which i think sometimes contributes to her needs.
The things i have found to help my LO are (and again some of these are hit and miss!!!)
- Infacol and colief for colic and i think lactose intolerance
- lying her on her front (the only way she will ocassionally nap through the day)
- Dr Brown bottles
- Carrier- will scream when she first goes in but will actually nap in it when we are out

Why do people make u feel so awful? I am sure i have not done anything really bad with my baby, i do not spoil her (as they say) i just respond to her needs.

 

[rach321]

Some people really just don't understand at all. A friend of mine once confided in me that she was scared to have another baby in case it turned out like mine! Her first baby was really easy so I always wind her up and say her second will be like mine! He's great now - still has his off days especially when he's overtired but he is one of the most sensitive, happy babies in our group now and always has huge smiles for everyone!
All babies are different and should be respected for who they are and not compared to those around them!

 

[juliespencer9]

Thank u sooooo much for this thread!!!!!!
I have been made to feel lately like such a bad mum. My LO is lovely, i adore her, but i have had my family visiting who when she cried asked whats wrong with her now?!
She cried all the way home from the airport (hates her car seat), she refuses to sleep most days so gets overtired and cries, she needs to be held alot, and has to be rocked to sleep, and only occasionally will she go down for a nap in the day. I am probably feeling oversensitive but my visitors have just tutted when she's cried and not helped at all. It doesnt help that my sister has a baby 3 months older who never cries!!!
My LO has colic, and had a very traumatic delivery which i think sometimes contributes to her needs.
The things i have found to help my LO are (and again some of these are hit and miss!!!)
- Infacol and colief for colic and i think lactose intolerance
- lying her on her front (the only way she will ocassionally nap through the day)
- Dr Brown bottles
- Carrier- will scream when she first goes in but will actually nap in it when we are out

Why do people make u feel so awful? I am sure i have not done anything really bad with my baby, i do not spoil her (as they say) i just respond to her needs.

have you heard of cranial ostherpathy or chiropractor for babies, they deal with babis who have been through a rough birth. look it up online it might be worth a try x

 

[celine]

My high needs baby missed his morning nap yesterday (ok he only naps on me and attempted a cot put-donw..NOT good) and he was just so cranky the entire day. It was aweful, he wouldnt feed or sleep and his eyes were really sunk into his head

A topic about sleep and lack of, my lo naps in the day..in my arms or if we are out in the carrier and occasionally in the pram. At night he does sleep in his cot (in our room) but the last 2 weeks he has been waking every hour from midnight refusing to go back to sleep in the cot, anyone else like this?

We have decided to try controlled crying (wont let him cry more than 5 mins max) for the nighttines cos im hoping once he understands HOW to fall asleep on his own it could help us for daytime naps?