Reflux

[Guest guest]

developed severe Reflux problems at about 5 years old. He always fought

eating most likely due to low tone in throat. He was and still is very gassy.

With a G-Tube we can vent(burp) him prior to feeding. 's sneezing and

coughing during feeds was his way of trying to 'clear' his airway. We were

lucky that his Reflux didn't cause more cases of pnemonia. But with the risk of

pnemonia and having throat cancer run in our family (along with seeing the

spaghetti noodle drop into his lungs during the Swallow Study) we went with the

G-Tube surgery at 6 years old. Have you tried Reglan or Zantac for reflux?

Sharon T.

[Guest guest]

Hi all, We are still struggling with Torin's sleeping. Rephrase, not

sleeping. He has been on Tegrotol although he has no seisures. Now on

Valergan Forte. He will go to sleep he is obviously tired. He lasts on a

good night 4hrs.(There not all good, so sometimes only 2 hrs). He then

wakes, if you are lucky you can settle him easily. He then wakes ever 2 hrs,

all night. He is on Losec for reflux.

He often comes out with the nost horrendious whooping noise, as he sleeps.

He then starts coughing and is very distressed. We feel that it is reflux

causing this, Any body got any ideas. He is going for a sleep study

eventually when they can fit him in. Beth took him to a sleep specialist,

who, to put it mildly, was not impressed with what had been done so far. She

is the one is sending him for the sleep study.

On the GREAT side our little man is making a wider range of sounds now and

is starting to use his voice, The speach therapist is very pleased, he has

been having feeding therapy as well and he is so much better at using his

mouth. He crawing very fast and can pull himself up to stand and is cruising

slowly along the furniture. He is so much happier now he is mobile.

I send Easter Greeting to you all, and hope the Easter Bunny visited you

all.

Grandma Carol Torin 21 mth PMG, Deaf, Hemiplagia, my little redhaired monkey

who loves throwing balls.

_____

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[Guest guest]

Hi Carol and Torin, I have had the same trouble with (the sleep issues

and the reflux) is on Rinetadine for his reflux and Melatonin for his

sleeping, we found that the reflux did have a hand in his not sleeping, as an

adult we know how difficult it is to sleep when we've got indigestion! So

goodness knows how our little ones are feeling and if Torin is like his

communication is very limited so he is unable to tell us what the problem is.

Has Torin had a EEG done asleep? 's seizure are sleep triggered so it's

no wonder he doesn't want to go to sleep!! but it also showed Abnormal Fast

Track Brain Activity which also explains the lack of sleeping. maybe it is worth

asking your paed to prescribe Melatonin in the mean time? I am told that it is

all natural so the side effects should very minimal.

I hope that this helps and you will get him settled so you can get a decent

nights sleep, there's nothing worse than sleep deprivation I know!! and when

you've had a good nights sleep you can face whatever the world throws at you

Hugs to all our angels

mum to 7 yrs PMG/Liss severe Epilepsy G/tube the light of my life.

From: carol imison

Sent: Monday, March 24, 2008 9:07 PM

To: polymicrogyria

Subject: Re:reflux

Hi all, We are still struggling with Torin's sleeping. Rephrase, not

sleeping. He has been on Tegrotol although he has no seisures. Now on

Valergan Forte. He will go to sleep he is obviously tired. He lasts on a

good night 4hrs.(There not all good, so sometimes only 2 hrs). He then

wakes, if you are lucky you can settle him easily. He then wakes ever 2 hrs,

all night. He is on Losec for reflux.

He often comes out with the nost horrendious whooping noise, as he sleeps.

He then starts coughing and is very distressed. We feel that it is reflux

causing this, Any body got any ideas. He is going for a sleep study

eventually when they can fit him in. Beth took him to a sleep specialist,

who, to put it mildly, was not impressed with what had been done so far. She

is the one is sending him for the sleep study.

On the GREAT side our little man is making a wider range of sounds now and

is starting to use his voice, The speach therapist is very pleased, he has

been having feeding therapy as well and he is so much better at using his

mouth. He crawing very fast and can pull himself up to stand and is cruising

slowly along the furniture. He is so much happier now he is mobile.

I send Easter Greeting to you all, and hope the Easter Bunny visited you

all.

Grandma Carol Torin 21 mth PMG, Deaf, Hemiplagia, my little redhaired monkey

who loves throwing balls.

_____

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rtner=spamblockerutility> Upgrade Your Email - Click here!

[Guest guest]

I think the sleep study is a great idea. Molly has struggled with sleep issues

nearly all of her life. Initially we were told it was seizures causing the

problems. We got those under control and the sleep issues continued. Then we

looked at reflux, we had her fundo repaired. That fixed the reflux but her

sleep never got better. We tried melatonin with limited success. We tried

benadryl...nothing. We ended up going to ativan when we were desperate and

chloral hydrate when we were REALLY desperate. We finally saw a sleep

specialist and got sent for a sleep study. We learned that Molly was suffering

from severe sleep apnea and have started using cpap. She's finally sleeping

through the night with no sleep meds!

I'd probably call the sleep lab and ask to be put on the cancellation list. We

got Molly in 2 months early by taking a last minute appt (they called Monday

morning and asked if we could come in that night). You could also ask that they

investigate the reflux with an upper gi or ph probe (they can often to the probe

with the sleep study).

Finally, I'd recommend checking out this message board:

http://www.parent-2-parent.com. Its a very active group with tons of reflux

experience.

Lorene, mom to Molly (3.5 with PMG, cp, cvi, hydro with shunt, g-tube)

To: polymicrogyria@...: climison@...: Tue, 25

Mar 2008 08:07:31 +1100Subject: Re:reflux

Hi all, We are still struggling with Torin's sleeping. Rephrase, notsleeping. He

has been on Tegrotol although he has no seisures. Now onValergan Forte. He will

go to sleep he is obviously tired. He lasts on agood night 4hrs.(There not all

good, so sometimes only 2 hrs). He thenwakes, if you are lucky you can settle

him easily. He then wakes ever 2 hrs,all night. He is on Losec for reflux. He

often comes out with the nost horrendious whooping noise, as he sleeps.He then

starts coughing and is very distressed. We feel that it is refluxcausing this,

Any body got any ideas. He is going for a sleep studyeventually when they can

fit him in. Beth took him to a sleep specialist,who, to put it mildly, was not

impressed with what had been done so far. Sheis the one is sending him for the

sleep study.On the GREAT side our little man is making a wider range of sounds

now andis starting to use his voice, The speach therapist is very pleased, he

hasbeen having feeding therapy as well and he is so much better at using

hismouth. He crawing very fast and can pull himself up to stand and is

cruisingslowly along the furniture. He is so much happier now he is mobile.I

send Easter Greeting to you all, and hope the Easter Bunny visited

youall.Grandma Carol Torin 21 mth PMG, Deaf, Hemiplagia, my little redhaired

monkeywho loves throwing balls._____

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r=spamblockerutility> Upgrade Your Email - Click here! [Non-text portions of

this message have been removed]

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[Guest guest]

We tried virtually everything there is for reflux, and 's just continued

to worsen over time. Having the Nissen Fundoplication surgery has made a

complete difference in his life. And he is still on the absolute maximum of

prevacid and pepcid.

What does your Gastroenterologist prescribe for reflux? Has he/she discussed a

fundo with you? It's surgery, but it makes a big difference in preventing the

reflux, which for many of our kids is quite problematic and dangerous over time.

Good luck!!

Hasselberger, Mom to age 10 bilateral diffuse PMG

Setting goals is the first step in turning the invisible into the visible -

Robbins

Reflux

Hi all,

Anyone have some tried and true herbal or home remedies for reflux? I

really don't want to add another medication.

Thanks,

Traci

Alec, two next week, and hitting a rough patch at the moment

[Guest guest]

[] Just wanted to also add that if your child has seizures be

cautious of Reglan... it brought on some pretty intense seizure

activity in and we had to complete rule that one out.

I've seen several other successful posts about Nissen surgery, and I

recall that when was about two years old the GI doctors were

discussing it as a probability in his future. An endocscopy really

helped to show just how bad the internal damage was getting... so be

wary..over time it can really cause problems.

is no longer able to eat by mouth, that stopped about the age of

7...but the reflux has worsened... nothing worked after awhile and he

was in pure agony. On top of that, when he lost his ability to protect

his airway and swallow normally, he started choking and aspirating...so

not only aspirating food, but aspirating vomit and stomach contents.

Vomitting and reflux are serious in our kids...perhaps if we had done

the Nissen earlier... would have been more comfortable...but the

important thing is that the surgery has been successful and the reflux

has all but stopped.

Just a thought... ask your GI about it... its not as invasive as it

used to be, they do it laproscopically...we were out of the hospital in

2 days.

A

>

> We tried virtually everything there is for reflux, and 's just

continued to worsen over time. Having the Nissen Fundoplication surgery

has made a complete difference in his life. And he is still on the

absolute maximum of prevacid and pepcid.

>

> What does your Gastroenterologist prescribe for reflux? Has he/she

discussed a fundo with you? It's surgery, but it makes a big difference

in preventing the reflux, which for many of our kids is quite

problematic and dangerous over time.

>

> Good luck!!

>

> Hasselberger, Mom to age 10 bilateral diffuse PMG

>

>

>

>

>

>

>

>

>

>

>

>

>

> Setting goals is the first step in turning the invisible into the

visible - Robbins

>

>

>

>

> Reflux

>

> Hi all,

> Anyone have some tried and true herbal or home remedies for reflux? I

> really don't want to add another medication.

> Thanks,

> Traci

> Alec, two next week, and hitting a rough patch at the moment

>

>

>

>

>

[Guest guest]

and Traci--

Re: Reglan -- Quinn lasted two days on it before switching back to

Prevacid. The Reglan did a phenomenal job with the reflux but

absolutely flipped Quinn out, as far as neuro symptoms go. The

Prevacid works pretty well, with periodic supplementing of Maalox.

All 's points about the seriousness of this and the need to get

on top of it quickly are very good, hugely important.

Traci--

If you haven't yet, try Maalox or Mylanta. The first pediatrician

who had us try Mylanta said these are basically impossible to OD,

very easy on the system. Beware of mint flavoring, as it can worsen

reflux by relaxing the lower sphincter. If you need something

stronger, Prevacid has been great. Quinn takes the 15mg ODT every

evening. Other things to try are elevating the head of his bed or

putting him on a foam wedge, cutting off any food or liquids a few

hours before bedtime, charting his diet to see if there's anything in

particular he's having more reflux with. Also, Gripe Water sometimes

works. However (if I remember correctly), one of the active

ingredients is ginger, which can exacerbate reflux.

HTH and good luck to you.

mom to 5

[Guest guest]

Yes..Traci.. we used Mylanta and Maloxx as well.. it gives relief at the worse

of times. But is on 30mg of prevacid twice a day, and now needs one tsp

of pepcid mid day to help... he is still less than 50 pounds at the age of

10..so he is at the maximum capacity for stomach medications. We also did a PH

probe study along with his endoscopy to see how badly the stomach is still

producing acid...and results told us that for some reason he is still very

acidic. is only on Neocate.. he was originally on Kindercal (like

pediasure_) and has improved since the switch as well.

We are also getting him (in the next couple of weeks) a bed with an elevation

feature for his head... Most kids with reflux i hear of are on prevacid and or

pepcid. Best of luck to you.

Setting goals is the first step in turning the invisible into the visible -

Robbins

Re: Reflux

and Traci--

Re: Reglan -- Quinn lasted two days on it before switching back to

Prevacid. The Reglan did a phenomenal job with the reflux but

absolutely flipped Quinn out, as far as neuro symptoms go. The

Prevacid works pretty well, with periodic supplementing of Maalox.

All 's points about the seriousness of this and the need to get

on top of it quickly are very good, hugely important.

Traci--

If you haven't yet, try Maalox or Mylanta. The first pediatrician

who had us try Mylanta said these are basically impossible to OD,

very easy on the system. Beware of mint flavoring, as it can worsen

reflux by relaxing the lower sphincter. If you need something

stronger, Prevacid has been great. Quinn takes the 15mg ODT every

evening. Other things to try are elevating the head of his bed or

putting him on a foam wedge, cutting off any food or liquids a few

hours before bedtime, charting his diet to see if there's anything in

particular he's having more reflux with. Also, Gripe Water sometimes

works. However (if I remember correctly), one of the active

ingredients is ginger, which can exacerbate reflux.

HTH and good luck to you.

mom to 5

[Guest guest]

Hi ,

First of all, I will concur with what everyone said about Reglan.

Stay away from that drug at all costs! It caused tremors and night

sleeping issues in that went unidentified as being a result of

the Reglan for 2 years! Finally, when I discovered those symptoms

could be a result of the med, we took him off and the symptoms

disappeared!

Anyways, the answer to your question is yes, there are homeopathic

remedies that will remediate reflux. had 3 ph probes, an

endoscopy, and two esophogeal biopsies.... was on 40mg. of Nexium

daily (an adult dosage- when he was only 2 years old!) when we

started seeing a naturopath. She was able to use cold lasers and a

whole host of supplements to get the reflux under control....we

weaned him off of the Nexium and he has been off all Reflux meds for

about a year now. (He is about to turn 6) and his reflux is under

control. It is noteworthy that his ped. GI was about to do a nissen

when we went to the naturopath......so, yes, it was very serious at

the point we sought alternate treatment.

Unfortunatly, I don't have my list of supplements handy, but I will

search for them. He took a ton.....and again, has been off of them

all for a year....we got his gut healthy and started healing him from

within, as well as focusing on making his core physically stonger (he

has hypotonia). A good naturopath should be able to indivdualize a

protocol for Alec. It would be worth a try before adding more

pharmaceuticals.

Good luck! We understand, have been there, done that!

Krista

[Guest guest]

has struggled with reflux since birth. He is 18 months now and

weighs about 23 lbs. He take 3.5 ml of Zantac 2x/daily. He was

still waking in the middle of the night crying and uncomfortable. I

decided to try the Gripe water, which has been working really well

for him. The brand I use is Wellements. It does contain ginger,

but I haven't seen any adverse effects yet. It also contains

Chamomile which seems to help him relax at night. You can purchase

it at the Vitamin Shoppe or order online.

http://www.wellements.com/gripewater.asp

Mom to Sophia (9), , BPP (18 months)

>

> and Traci--

>

> Re: Reglan -- Quinn lasted two days on it before switching back to

> Prevacid. The Reglan did a phenomenal job with the reflux but

> absolutely flipped Quinn out, as far as neuro symptoms go. The

> Prevacid works pretty well, with periodic supplementing of

Maalox.

> All 's points about the seriousness of this and the need to

get

> on top of it quickly are very good, hugely important.

>

> Traci--

>

> If you haven't yet, try Maalox or Mylanta. The first pediatrician

> who had us try Mylanta said these are basically impossible to OD,

> very easy on the system. Beware of mint flavoring, as it can

worsen

> reflux by relaxing the lower sphincter. If you need something

> stronger, Prevacid has been great. Quinn takes the 15mg ODT every

> evening. Other things to try are elevating the head of his bed or

> putting him on a foam wedge, cutting off any food or liquids a few

> hours before bedtime, charting his diet to see if there's anything

in

> particular he's having more reflux with. Also, Gripe Water

sometimes

> works. However (if I remember correctly), one of the active

> ingredients is ginger, which can exacerbate reflux.

>

> HTH and good luck to you.

>

>

> mom to 5

>

[Guest guest]

We did also, in the early years, use naturopaths to help rememdy the reflux....

and have been through literally everything you can come up with. The problem

with 's reflux is that it never really stopped, and although he wasnt

visually vomitting..he continued to reflux internally.. But the main decision

factor behind the need for the Nissen was NOT only the reflux, but the fact that

he now aspirates dangerously, and when his ability to swallow safely began to

get worse...no amount of supplements were safe orally... The nissen surgery

prevents the dangerous vomit and stomach acids from coming up and going into his

airway.

didnt always aspirate to the degree that he does now...but I can tell you

this..the Nissen surgery has made a tremendous difference, he is so much more

comfortable, and reflux symptoms are non existent. We still have the urgency of

aspiration risks... which for reasons we do not understand.. result in

continued intervention from respiratory professionals to keep his airway as

clear as we can

ON that note.. does anyone else out there have a " THE VEST " airway clearance

vest.. its so great... vibrates and shakes him with airpressure gently enough,

but firmly enough to move the mucus... its now part of his daily regimen and he

loves it...giggles and laughs.

Anyways, I am not an advocate of surgery...but in this case, the surgery helped

stopped the reflux and the bombardment of mega anti reflux drugs.

Supplements and alternative therapies did not work for ...over the long

term. They worked for me, though, healing fibromyalgia..but I guess its a case

by case basis.

Good luck.

Setting goals is the first step in turning the invisible into the visible -

Robbins

Re: Reflux

Hi ,

First of all, I will concur with what everyone said about Reglan.

Stay away from that drug at all costs! It caused tremors and night

sleeping issues in that went unidentified as being a result of

the Reglan for 2 years! Finally, when I discovered those symptoms

could be a result of the med, we took him off and the symptoms

disappeared!

Anyways, the answer to your question is yes, there are homeopathic

remedies that will remediate reflux. had 3 ph probes, an

endoscopy, and two esophogeal biopsies.... was on 40mg. of Nexium

daily (an adult dosage- when he was only 2 years old!) when we

started seeing a naturopath. She was able to use cold lasers and a

whole host of supplements to get the reflux under control....we

weaned him off of the Nexium and he has been off all Reflux meds for

about a year now. (He is about to turn 6) and his reflux is under

control. It is noteworthy that his ped. GI was about to do a nissen

when we went to the naturopath.. ....so, yes, it was very serious at

the point we sought alternate treatment.

Unfortunatly, I don't have my list of supplements handy, but I will

search for them. He took a ton.....and again, has been off of them

all for a year....we got his gut healthy and started healing him from

within, as well as focusing on making his core physically stonger (he

has hypotonia). A good naturopath should be able to indivdualize a

protocol for Alec. It would be worth a try before adding more

pharmaceuticals.

Good luck! We understand, have been there, done that!

Krista

[Guest guest]

brings up a good point re: aspiration.

We had a swallow study done 2x on and he was not aspirating. When

you are dealing with aspiration, it is a whole different ball game.

I think that if you rule that the reflux is not causing Alec to

aspirate, then maybe you will have the chance to look at natural

remedies prior to adding more meds or having the nissen. However, you

may not have any options if he is aspirating as was.

Good luck and keep us posted!

Krista

>