Posted By Posting
Jan 06, 2009
shan
New to this forum-intro
Hi everyone Just thought i should introduce myself. I have just discovered this site & have been having a read of everyone's stories & can't believe how similar some of your experiences are to my own. It's so nice to know i'm not alone & i wish i'd found this sooner! My son is now 14months old. We've had a long battle with severe GERD which wasn't diagnosed until he was 5months old despite me seeking help over that time from my doctor, baby health nurse, lactation consultants and a pediatrician. Consequently he developed a SEVERE aversion to feeding - breast & bottles & had poor weight gains. He also never slept & at the worst point was up 7x per night & would go 12-14hours refusing to feed. At 5 months I got a new doctor and new pediatrician who both immediately diagnosed GERD & he started Losec 2x per day & Ketotifin, an anti-histamine to increase his appetite. I am not sure if you have Losec in America? I think it may be similar to Zantac. We finally got over the bottle aversion at 10months old & as he was doing so well & now walking we tried stopping drugs. This was the worst decision ever!! The reflux began to cause him pain again & he became a very unhappy little boy. Despite starting the Losec again, this time 3 x per day we were never able to get the GERD under good control again. Gaviscon was prescribed, but i couldn't get it into him. At 11months he started projectile vomitting after every meal & would gag at the sight & smell of food. To get any food into him required 2 people & a ridiculous amount of distraction - just to have it thrown up at the end of the meal. He began to lose weight & would go 3-4 days without eating anything. Luckily he kept taking his bottles of formula though. At 12months i demanded something be done so he was sent for a Barium swallow/meal. The results were normal - espohagus, stomach etc all ok. It was a relief but also frustrating as the problem was still there! I did lots of research & referred myself to a Speech language therapist who offered a few suggestions for his severe feeding aversion. (e.g. playing with food so he will learn it is 'safe', tactile games, massage to de-sensitise his gag reflex). But at the end of the day she felt she couldn't help alter his behaviour drastically as the reflux wasn't under good control. At 13months i went back to the pediatrician & he prescribed Periactin - a miracle!! Within 24 hours he was eating, trying to feed himself for the 1st time ever, & ate more in a day for the 1st 3 days than he used to eat in a week!! The vomitting completely stopped as well!!! He had a massive weight gain & is a much happier little boy when his tummy is full! He's now 14months old & after 3 weeks on Periactin the effects are slowing down. However he is still eating better than ever & actually puts food in his own mouth now. & still no vomitting. He is on it for another week, then we are swapping to a different anti-histamine for a month, then he'll go back on it. I think this is a way of 'kick starting' his appetite again. Our house hold has been a much happier place for the last 3 weeks!! I just hope it lasts this time!! I don't know how long he'll have to take the Periactin for or if he'll ever get over his GERD..... Thanks for reading/listening!! & for a great website :) Shan
Jan 06, 2009
shan
oops
Oops sorry didn't mean for my intro to be sooooo long!! and my paragraphs seem to have disappeared so it's just one long rant - my apologies!! :)
Jan 06, 2009
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Not sure if they told you this or not but, Periactin needs to be cycled. It will lose it's effectiveness at about 3-4 weeks of use. Lots of kids go on it for 3 weeks and then cycle off for a week and then repeat the process. You should have better success with a cycle instead of being on it continuously.

Alas, over time, I think it does stop working even when it is cycled. but I'd keep using it for a while though in cycles.

To make paragraph breaks type this without the spaces. < p > It should work. Makes it easier to read IMHO...LOL

Is your SLP trained to work with feeding aversion kiddos?? I'd make sure they were. They are lots of toys you can buy also that will hep to desensitize the gag and make the muscles stronger. We bought alot fo toys from Ark Industries On Line. I'll find a link in a minute and add it in the next post.

Jedd really liked the Nuk Brush and the alligator Jiggler and the Z Vibe. We also have a vibrating John Deer corn cob he likes to chew on. Even at 26 months he will still chew on the corn cob..LOL

Off to find that link. :-)

Jan 06, 2009
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Here's the Link
http://www.arktherapeutic.com/Merchant2/merchant.mvc?Screen=CTGY&Store_Code=ATSI&Category_Code=EarlyIntervention

Here is the z-vibe toy:

http://arktherapeutic.com/Merchant2/merchant.mvc?Screen=CTGY&Store_Code=ATSI&Category_Code=Z-Vibes-Tips-Kits

If you just troll around there you will see TONS of stuff that will hep with oral muscle control.

Jan 06, 2009
shan
thanks
Thanks so much for your comments Jessica & the website. I am in New Zealand so don't know if i can place an order, but will try & see what happens or see if i can find something similar closer to home - although i've found useful info on reflux very hard to come by over here!

No i didn't know about cycling Periactin - my Pediatrician is not great at communicating! Thanks for that info.

My speech language therapist only has a little experience with reflux kids and not alot with feeding aversions. In fact no one seems to have even heard of it & i hadn't come across anyone else who had experienced this until i found this forum. My doctor hadn't ever heard of a child refusing to feed like my son.

Jedd looks adorable! Shan

Jan 06, 2009
bib3mama
I have 3 boys, youngest has gerd, 18 months of no sleep. Prevacid 2x/7.5 mg thinking of switching to prilosec.
Welcome, Shan. There are alot of great mamas here to listen and to help. I'm sorry it's been so rough. Is he your first? Sounds like he has a great advocate- you!
Jan 06, 2009
shan
Thanks for the welcome!

Yes he's my first and he is a lovely boy - i hate to sound like i am complaining about him! but it has been a very hard 14 months! I was told reflux would be all be over and done with by the time he was 1 but his seems to have got worse with age/solids.

Jan 06, 2009
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Jedd's 26 months and still deals with GERD. We don't' think he will ever come off meds. to be honest.

I don't think there are places to go for feeding therapy overseas as there are here in the US. Maybe your Dr could check out some sites or talk to some clinics here to get an idea of how to help more.

I know the first thing we did was to make sure Jedd's GERD was completely under control before going ahead with oral feeds. He was completely fed by a tube in his nose and then in his belly.

So, yeah, he had a pretty serious aversion going on...LOL We can laugh about it now since he is doing better.

We use the TV for distraction and it works pretty well. He has been trained in front of it since he was around a year old. He pretty much goes on auto pilot when he gets in his chair and gets fed. Not as much now since we are trying to push solid food on him.

Ya know, if the bottle is working for now, I'd let it be for a bit. Try foods but don't make it to much of an issue. As long as a weight gain keeps happening, then I'd wait it out for a few months. Obviously I would still be doing tools in the mean time to work on those muscles.

Jan 06, 2009
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Welcome! This is a great place for support and for information. Don't have much to add except we're all here to support eachother. HUGS!
Jan 06, 2009
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Welcome!

Looks like you have already done a lot and u r headed in the right direction. Congrats on calm household the last 3 weeks. I hope it continues. I am glad the periactin is helping your little one and hope it continues too.

I know I have found a home here and a family, and I hope u find the same. I don't know how I could have made it through these last few months without all the love and support I have found here.

It is tough when people tell you how much you are overreacting and how it is simply a normal stage that all kids go through.

Have a good evening.

Jan 07, 2009
shan
Thanks everyone!!!
Check with your
doctor first!