My name is Phyllis, I have a 3 yr old refluxer with delayed gastric emptying and speech delay. Orally defensive to the extreme! I also have a 23 month old boy, ALex and a 2 month old, Byron. Add our 2 big dogs - Buddy and SHeena and the kitty Littler and thats our circus!

It was wonderful to find this site and see the book that you wrote Roni! I had been looking and looking for a book just like it for some time. I had started one myself when I found yours! So thatnk you Roni - you have done a great service to the many, many parents of refluxers out there who are suffering thru this nightmare! I cant wait to read it.

I'm not sure if I will continue with what I've only just begun. But maybe there really cant be too many books on this subject with the ways docs dont understand and dont diagnose reflux - especially silent reflux. I'd include sections on OT and PT to help with SID issues, motor planning issues and strengthening muscles of the trunk and scapula. And dealing with oral defensiveness, feeding therapy techniques etc. WHat do you think?

Anyway, it was so nice to find you! And Shae is just a beautiful, beautiful little girl!!

Welcome Phyllis, it's nice to see you here! Sounds like you have a busy house!!

I think that if you feel you need to write a book then write it. The only reason I wrote mine is b/c I felt so strongly that there needed to be one on the market and no one else seemed to be doing it. It's the last thing I wanted to do or had time to do for that matter. I have to say that writing our story in such depth was the most therapeutic thing I have done! I had a totally different outlook when I finished it, for this reason I am glad I did it.

Just a couple things to think about...it's a heck of a lot more work than I ever imagined when I started. Just when you finish the book (which took over a year) and think you are done you need to find a publisher (which took about another year, and about as much work as writing it). Then you have to get into editing it and submitting it. Then it's finally published and you think you are done...nope....you're never done b/c then you have to start getting publicity for it, which costs money most of the time (that's why mine hasn't been pushed much yet...I don't have any :P ). People can't buy it if they don't know it exists and I just kinda thought once it was published it would be in bookstores and I was done. Nope...you have to convince bookstores and everyone else to buy it once you get their attention enough that they know it exists. The other thing is the money. I didn't start the book in the first place with the intention of making a fortune, to be honest I never really expected that it would get published but, I mean making a little extra to help with formula costs and donate to PAGER after all the work I put into it would be nice. What I didn't know is how little authors actually make on their books. The going rate for authors is 7-12% of sales, unknown authors are obviously at the lower end of that. Which means we are making barely $1 a book and the publisher gets the rest...unless you have the money to be able to self publish that is, which I did not. And no one wants to help you push the book b/c goodness forbid someone else make a dollar. I have emailed a minimum of 50 other reflux sites asking for a link to the book site and a mention of it on their site, only about 6 of them even responded to my email (this was two months ago) and only 2 actually put any info on their sites. One woman with a site who is claiming to want to help people dealing with reflux (I won't say who as much as I would like to :twisted: ) wouldn't even put a text link on her site unless I paid her a portion of MY pathetic little earnings! This process has been almost as frustrating to me as reflux itself. :cry:

Having said all that, I do think you are right, there can never be enough books on the subject and I do think that the number of books written on reflux is only to increase from now on, as people become more aware of it, as more kids are born with it, and as more research is done (or hopefully done).

If you do continue with your book try to think about appealing to as wide a market as you can. For example, if you are getting into a lot of the therapy aspects of it then I would play up that angle. That way you are not only appealing to reflux parents but parents of kids with all types of illnesses that require that type of special care. It will be much easier to get a publisher to look at it with a wider market. Also, get a therapist (or three) to help with it, for sure...this is the biggest, best piece of advice I can give. It's difficult to get medical professionals and the media to listen to you if you are only a mother, but if you have someone as co-author who has a degree it will make life a heck of a lot easier for you in the long run, I wish I had done this with ours.

Anyway, I hope that I have given you something to think about, without being too negative. I think it sounds like a book like yours would be a great asset and I can't wait to read it.

You sound exceptionaly together woman for being as busy as you are ..Which is very encouraging to me ..welcome and I'm looking forward to hearing more about your experience with reflux .

Daniele mother of Alanna (9 weeks old currently)who has PKU and Reflux