mummies with babies with GERD (reflux)

[uddermummy]

i asked dr aw about the ppi, and she said that ppi are not cleared by fda for use in bbs less than a year old.

mainly because the pharceutical companies have not paid for large clinical trials to be carried out among young bbs. :elvis:

she did say that such off-labe usage is v common in singapore and other countries. She also said that fda is quite stringent and doesn't clear many other widely used drugs for certain purposes.

am now trying to cut down on dd's ome dosage again. Here we go again.

 

[epicurean]

i asked dr aw about the ppi, and she said that ppi are not cleared by fda for use in bbs less than a year old.

mainly because the pharceutical companies have not paid for large clinical trials to be carried out among young bbs. :elvis:

she did say that such off-labe usage is very common in singapore and other countries. She also said that fda is quite stringent and doesn't clear many other widely used drugs for certain purposes.

am now trying to cut down on dear daughter's ome dosage again. Here we go again.

Ok, her explanation seems quite logical. Huh, you're going on that roller-coaster ride of reducing her dose? Good luck, hope Eva's ready for decreased ome.

Btw, did Dr Aw say anything about scheduling for a scan like she mentioned previously? Our appointment is in Jan ... not sure if she also has that in mind for Seb.

I'm cautiously happy to report that Seb's on the mend No return of fever ... his nose isn't that runny or blocked. ancing_wub:

But he's still clearing out phlegm ... I gotta hand it to him, he could cough those thick, sticky, light yellow'ish phlegm. Thank goodness, no more episodes of breakthrough seizures ever since his doc told me to up his dose slightly to tide him over his recovery period. She suspects that the lack of quality sleep coz of his illness has compromised his seizure threshold.

 

[uddermummy]

hi epicurean, dr aw changed her mind about the observation lehhh...

Yeah, now trying to cut dd's dosage to once a day. :elvis: Will slowly reduce her dose in the morning, before doing it away with it entirely.

Good to hear that Seb is recovering. I hate blocked/ runny noses! Good that Seb is clearing the phelgm out.

Have you read this book , "Bright from the start"? The author, has a daughter with CP, so although the book is ostensibly for non-special needs kids, a lot of the ideas are applicable for CP angels.

Her book is quite encouraging and contains snippets about how she coped with her daughter's needs, and how she managed to overcome the doctors' scepticism to help her daughter learn many things the doctors said the latter wouldn't be able to do.

And all her stuff are research-backed (quite similar to the research i've read in another book).

I'm starting to get hooked on these books on how to develop babies' brains. The cool thing is that they usually say the same thing: there's no basis that rushing our kids and keeping up with the joneses by forcing them to do worksheets at such a young age will produce brighter kids. :001_302:

In fact, they advocate that we talk more and play more with, and basically just love them. I like these ideas, and I can do them! I was quite worried that by not using flashcards, i was somehow doing dd a great D.I.Sservice.

funny how the spell-checker changes d.i.s-service to thisservice!

 

[epicurean]

uddermummy,

It's a relief that Dr Aw changed her mind about the scan Eva's GERD could be mending on its own as she grows and her muscles strengthen.

Yeah, Seb is still going thru his phlegm-purging period ... giving him Fluimucil to help the process along. He's now well enough to be back on his usual routine of exercise, play therapy, physio etc. This week we're going to do a trial run with him on his new bath chair :tlaugh: He's outgrowing his beloved bathtub so need to move him to a bath chair. Dunno how he's going to take to it coz he so loves soaking in his tub.

Hubby and I are so relieved that he's recovering .... those 10 days of fever, seizures, excessive coughing & vom'ng were so stressful. A delightful sign of his recovery - hubby was kissing his cheeks non-stop until Seb let out a giggle each time he did that and until he would protest while still making giggling sounds. ancing_tongue: I was miffed that I didn't get to see that coz I was catching up on sleep!

Hey I'm reading that book too But only at the 1st chapter coz Seb fell sick then. Yeah, I like her ideas too! They're not so task-oriented ... instead her ideas go to the heart of the matter - loving, cuddling and affirming our kids. I was alternating reading that book and another one with real-life stories about parents of children with special needs "A Cup of Comfort".

You very funny flash cards have their uses but they're not the be all and end all Btw have you come across Melissa & Doug wooden toys? Those wooden boards with animal cut-outs that make specific animal sounds when the animal cut-outs are put into the correct shapes on the board? It's fun and cute ... Seb likes it when his physio played it with him so we got a few for him to play at home.

Anyway, the moral of the story is "enjoy our kids", rite??

 

[xiaochuan]

uddermummy,

It's a relief that Dr Aw changed her mind about the scan Eva's GERD could be mending on its own as she grows and her muscles strengthen.

Yeah, Seb is still going thru his phlegm-purging period ... giving him Fluimucil to help the process along. He's now well enough to be back on his usual routine of exercise, play therapy, physio etc. This week we're going to do a trial run with him on his new bath chair :tlaugh: He's outgrowing his beloved bathtub so need to move him to a bath chair. dont know how he's going to take to it coz he so loves soaking in his tub.

Hubby and I are so relieved that he's recovering .... those 10 days of fever, seizures, excessive coughing & vom'ng were so stressful. A delightful sign of his recovery - hubby was kissing his cheeks non-stop until Seb let out a giggle each time he did that and until he would protest while still making giggling sounds. ancing_tongue: I was miffed that I didn't get to see that coz I was catching up on sleep!

Hey I'm reading that book too But only at the 1st chapter coz Seb fell sick then. Yeah, I like her ideas too! They're not so task-oriented ... instead her ideas go to the heart of the matter - loving, cuddling and affirming our kids. I was alternating reading that book and another one with real-life stories about parents of children with special needs "A Cup of Comfort".

You very funny flash cards have their uses but they're not the be all and end all Btw have you come across Melissa & Doug wooden toys? Those wooden boards with animal cut-outs that make specific animal sounds when the animal cut-outs are put into the correct shapes on the board? It's fun and cute ... Seb likes it when his physio played it with him so we got a few for him to play at home.

Anyway, the moral of the story is "enjoy our kids", rite??

I really pray for the day to come when my gal response to cuddle, and all the singing n reading :wong19:

Uddermummy,
flashcards worked well for my boy. He is a big fan of it.

 

[epicurean]

I really pray for the day to come when my gal response to cuddle, and all the singing n reading :wong19:

xiaochuan,

Seb only started responding after 1 year of our combined efforts, hard work, daily routine and physio. Don't give up ... just keep at it.

 

[xiaochuan]

Thanks. I really hope so.
Prognosis is bleak, so anything she can do is a BONUS to us.
The biggest milestone she can give us now is her swallowing...

 

[uddermummy]

hi epicurean, hee, we are on the same wavelength!

yeah, i like stamm's ideas too, very doable. And it's really heartening to read about how she's managed to overcome the obstacles she faced with her elder daughter. And when you read further into the book, you will realise that the quote in my signature is actually kapoked from the book. Heeheehee!

there's this other book that i'm reading. Brain games, by the authors of Baby signs. This book is for non-special needs kiddos but the ideas are very simple, yet engaging. I think you can prob adapt some of the ideas for use with seb.

so cute, seb! next time ask your hubby to video seb when he starts giggling! :001_302:

yup, i've seen those puzzles in toys'r' us. Haven't introed to dd yet cos she's currently into throwing stuff and not playing with stuff. She'll throw her stuff and then look over the chair to see where the things have gone. She's doing it so many times that it's not funny now.

hi xiaochuan, flashcards do have their uses. ancing_wub:But i've always felt that it's more of a reinforcement tool than a teaching tool cos I prefer to do reading in context. I enjoy reading whimsical bb stories and rhymes with my ger, and so far, she seems to be pretty excited by what i'm reading to and with her.

this lazy mummy zzzzs when it come to flashcards! Hahaha!:tlaugh:

 

[epicurean]

uddermummy,

Now I'm inspired to dig out that book and continue reading :tlaugh:And you're not the only one to kapok quotes from books for signatures ... yours truly also kapok mine hahah.

Btw what are the names of the authors of "Brain Games"? I wanna read that book too

Yeah, we need to be speedy gonzales when it comes to capturing Seb's cute moments coz those moments are usually fairly short. I love nuzzling his neck for his baby smell and tickling him to make him laugh ancing_tonguelus I think the endorphins are good for him!

Hey it's great that Eva's throwing stuff and checking out their landing points :001_302: she's exploring! The way you describe it just makes me laugh. Maybe she's trying to perfect her aim?? She isn't throwing food around, is she?

 

[uddermummy]

hi epicurean, oops, i just realised that i gave you the wrong title. It's actually Baby Minds, by Linda Acredolo and Susan Goodwyn.

The research is the same as Stamm's, but i find that this book is more systematically organised, cos the chapters are organised according to the different aspects of bb development. Like emotional, memory etc. It's actually v easy to reference cos you can just turn to the different sections to get the strategies, and they also put all the strategies at the end of the book for you to refer to.

There's this idea from the book that my friend's bb loves to bits. Tie a ribbon to a mobile above bb's cot to one of bb's limbs. They get v fascinated when they realise that they can make the mobile move by moving their limbs!

Is it possible to try this with Seb?

Yeah, dd throws her food about too. :001_302: She's totally in her throwing phase. We tried to clip her toys to her stroller with the pacifier clip but she's figured out how to undo the clip. Can faint ah!

 

[uddermummy]

dd's been a bit lethargic the past 2 months, and i suspect that it's due to a lack of iron.

The strange thing is that I've actually tried to incorporate iron-fortified cereal into her meals a few times a week.

Wonder if it's because the ome actually affects the absorption of iron and other vitamins?

also, she hasn't grown in height, and her weight gain was only 200g for the past 2 months.

 

[epicurean]

Wah, she's a sharp one! Stay firm ... remember to outplay, outwit & outlast! :tlaugh:

Thanks for the book details I'll look hunt for it. The idea sounds good ... I'll try it out with Seb. He only moves his arms a little bit so I'll modify it by moving his arms & hands for him coz he won't be able to pull the ribbon by himself. See if he's interested ... if he is, his eyes are more focused, his breathing picks up and he has this semi-pleased expression on his face heheh.

Hmmm, at your recent appointment with Dr Aw, did you share your concerns with her about ome & iron absorption? Did you ever consider switching her to zantac if her GERD stabilises? That reduces acid production so there's still gastric juices in the tummy for digestion.

While always on zantac, Seb's weight gain has been gradual & ok (except for that excessive vom'ng and hyper tone period) ... he's now 10kg+ at 19 months. I thicken his milk with organic brown rice cereal plus 'thick & easy' and he's still on smaller, more frequent feeds. Somehow the 'value-added' milk has been helping with his weight gain tho' he voms from time to time.

Btw is Eva on solids yet? Everyone tells me that being on solids helps a lot with GERD but Seb has a long long way to go in terms of taking solids.

 

[uddermummy]

Hee, so cute! Would love to see Seb's semi-pleased look. Seb looks cheeky in his pic, and his cheeks look so pinchable! kekeke

i didn't manage to ask dr aw about the ome affecting the iron absorption cos she seemed to be in a hurry. I did mention to her that dd was quite lethargic the past two months, and she's prescribed some iron drops for her. After a few days of being on the drops, Eva does appear more energetic. In fact, she's just discovered how to sit up on her own, and has been doing this instead of napping and sleeping every time i put her on the bed. Faint!

I think Dr Aw seemed to be quite worried about the weight gain cos our next appt with her is in a month's time, instead of the previous 6 weeks or so.

I guess being on solids helps to reduce the amount of spit-ups but dd's painful burps seem to be back again now that her dose of ome is reduced. And her screams are like OMG! :elvis:

 

[epicurean]

Hahaah thanks dear! I'll find pics of his manja'ness with that expression and post them to show you.

Wah those iron drops are really good! Seems like a case of insufficient iron despite the iron-fortified cereal she's taking. If ome is interfering with iron absorption, the iron drops would also have limited effects, right?

I think Eva's going to give you a run for your money ... literally If she's using her energy to thwart you now, wait until she's mobile ... *ominous sound effects* heheh

I know her weight gain is a constant worry for you. What I can share from Seb's experience is that once you find the suitable med at the optimal dose, she'll play catch up with her weight gain ... really. She'll go thru growth spurts too.

Her painful burps & screams are back? Oh crap ... when GERD kicks in, it's so Dr Jekyll and Mr Hyde ...

 

[uddermummy]

hi epicurean, yup, am also worried that the ome will also affect the absorption of the iron drops. But i space out the ome and the iron drops, and give dd the drops in the evening at least 2 hours before her evening ome dose. Hope that this will help dd absorb more iron.

And i think the iron in the cereals may not be that easily absorbed, as compared to iron in meat. So maybe she just needed a higher dose of iron.

Haven't introed meat to dd yet but will try to add in to her meals this month.

hee! no wonder they say that you have to be really careful what you wish for! I was hoping that dd would be a feisty ger! Think I got more than what i bargained for.

thanks for the assurance about the weight gain. I usually try not to stress over her weight gain but when i see how small she looks beside her cousins of the same age, i kinda of feel heart pain.

Yeah, it's really a case of jekyll and hyde when the med is in effect and whenit wears off. It wasn't until eva was on ome that we discovered she was actually quite a cheerful baby. In her first two months, she was always screaming and crying, and just fussing the whole day.

 

[epicurean]

uddermummy,

That's a smart, strategic move to give the iron drops at the tail end of her previous ome dose. She must be taking it in well if she has found energy to sit up when you want her to nap and sleep!

I empathise with your heart pain when you see her smaller size compared to others of the same age ... for Seb, the growth of his head circumference is so miniscule that there's hardly any movement on the lines in his chart. I feed him as best as I can and hope his brain (with its remaining brain matter) gets sufficient nutrition to grow and develop.

Yeah, during the Dark Ages of Seb's refluxy days & nights, it was practically non-stop fussing, screaming, crying, stiffening *shudders* We also discovered Seb's amiable, playful disposition when his GERD is finally kept under control and the discomfort from his tight muscles is alleviated. When he's feeling good and nothing is bothering him, he wants people to play with him, talk to him ... nowadays he likes it a lot if we speak Teochew with him! He's particularly attentive and interested when my mum regales him with her adventures at the market hahah. Maybe I should get him a kid's membership at the Teochew Huay Kuan :tlaugh:

 

[uddermummy]

I'm sorry to hear about the slow growth of Seb's head circumference. But if you didn't tell me about it, I really wouldn't have noticed. He looks so handsome and alert in the pics you post in your avatar.

how are his ulcers? Did you manage to get the mouth guard idea going?

nowadays he likes it a lot if we speak Teochew with him! He's particularly attentive and interested when my mum regales him with her adventures at the market hahah. Maybe I should get him a kid's membership at the Teochew Huay Kuan :tlaugh:
ahahahaha! ahahaha!:tlaugh:

did you speak a lot of teochew when you were expecting him? Cos they say that bbs start to familiarise themselves with their mother tongue while in the womb, and will start to prefer the language they hear frequently right after birth.

Your mum is hilarious! It's so sweet that grandma and seb enjoy such a close relationship.

I was just telling my mum yesterday about your family and seb. I was telling her that your family is just so full of love, and so resilient, and is so able to cope with life's curveballs.

Your family is really inspiring!

 

[epicurean]

Seb thanks auntie uddermummy for her compliments :001_302: If he could, he would be preening right now! This pic was taken after a physio session that put him in a good mood. But during the session, he was made to work hard, so hard that at one point he was scowling at his physio ... she just laughed at him. That pic of his scowl is hilarious! I should dig it up to show you the contrast.

His ulcer is healing, thank goodness. His dentist told me that as the ulcer recovers, the skin will toughen up, so as long as it doesn't keep getting abraded & bleeds, it'll be ok. She ruled out getting a mouth guard coz of choking concerns plus it might obstruct the growth of other teeth next to it. His physio found us a learner bottle with a type of nipple that's great for his jaw development and trains his tongue to retract, giving the ulcer a break.

I usually speak teochew with my mum, including the time when I was pregnant. Rest of the time, it's english. You could be right coz I did spend a lot of time with mum during my pregnancy. Plus its rhythm & inflexion are diff from english so that could interest him hahaah.

Sweetie, thanks for saying such nice things for your affirmations For the first 6 months after Seb's birth, I was an emotional, hormonal wreck. You know about the drama while staying with my in laws ... the atmosphere was so corrosive. Moving back with my parents has provided a much better, warmer, conducive environment for Seb and my peace of mind. Praying has been a lifesaver ... it made things easier to bear and accept. And not forgetting you ... you've been a wonderful source of support and understanding ... my journey as a gerdling mum was pretty lonely until we started talking in this forum ancing_wub:

 

[uddermummy]

OMG! The sweet-natured seb is capable of scowling? That session must have been quite tough!

Yeah, seb might be attracted by the singsong rhythm of the teochew language.

I was and am still quite worried that dd's first words will be "No, doggie!" cos that was what i kept saying to my then puppy (now a huge dog) when i pregnant! Even now, i have to try not to say no to my dog too often.

The support, or lack of, from our families really can make or break us. But thank goodness (and God) we have our part of the families to fall back.

i should thank you for being such a pillar of support while i navigate through the dark waters of dd's gerd. :001_302: And for your kind offer to help when i was floundering. ancing_wub:

 

[epicurean]

uddermummy,

Hahaha yeah his physio believes in making each session productive for Seb ... she always tells him that resistance is futile! The lovely thing about her is that she's not the least intimidated by his angry tantrums or fussing (unlike the other greenhorn physio whom he terrorises) ... she just finds him amusing and entertaining :tlaugh:

I want to assure you about your dd not picking "no doggie" as her first words ... but I've seen my friends' babies & toddlers who pick up what they hear really quickly that we try to censor what we say. Anecdote 1 - when my friend scolds her toddler for being naughty, her dd turns to their dog and repeats the scolding! The dog just looks blurred at being the recipient of the reprimand hahah. Anecdote 2 - we were laughing about the Ris Low incident and started using 'boomz' in our conversation ... next thing we knew, the same toddler was also saying that to our abject horror. :embarrassed:

Yeah, family support anchored me during those dark days and later made it possible for me to return to work on flexi. Have you considered asking your mum to supervise the maid when you return to work?

Aiya. no need to thank me ... I was just cheering you on from the sidelines ... you pulled thru on your own with grit and wit.