Where are things going…

[Anonymous]

Laura, I would like to apologize to you in advance for starting this thread as I recognize that it has potential to go off in bad directions, but I really have some things that I need to say.

Let me start by saying that my intent of this post is not to further propagate the “great marci-kids debate”, so hopefully we won’t get into that here.

What I do want to say is that this site has been a lifesaver for me, getting through some of the hardest times in my life. When I first started out on this journey it was very hard. The point that I started finding websites like this one was a huge turning point for me. Things were still impossible, but knowing that there were others out there that knew what I was going through, who didn’t judge, didn’t blame, and didn’t criticize me for our situation probably saved me from a serious breakdown. I visited lots of sites, but eventually settled on this one and made it my home. I chose this site partly because the wealth of knowledge that was presented to me here, but also because of the kindness, compassion and open mindedness of the people that were on this site. I was inspired by others who took the time to reach out to me. I was inspired by people who were so kind to stick around and find the time to help others even when they had bigger issues going on in their lives. People like Christine (kevieb) and Laura (hellbennt) are gifts to this site. Usually after their child outgrows these issues or moves on in other ways, parents gradually fade away, and rarely come back to help others work things through. Laura once took the time to reach out to me and give me the push I needed to fight the ongoing battle that we’ve had with Hailey’s situation and our health care system and limited supports available to her.

When I needed it most, this site educated me in many ways, and also taught me the need to take everything in, do my own research, review the facts, and make decisions that are right for my child. I’ve now learned so much about reflux that I sometimes feel as if I deserve an honorary degree in pediatric gastroenterology! But all children are different, and there are many ways to do things, and people need to be presented with all the research and allowed to make their own decision. I think that it is wrong to lead people to believe that the only right way to treat reflux is the marci-kids way. I am a big fan of marci-kids and especially of Joel, and appreciate anyone who takes the time to devote their time and energy to a topic that is so dear to my heart. But I think there is a fine line between providing the information, and pushing information. More recently, I feel that things have been moving toward the more aggressive side of things. That’s the last time I’ll mention marci-kids.

This forum is amazing, and I’d hate to see people deterred from coming here because of a lack of objectivity. I think that sometimes it is difficult to convey tone in writing, and thoughts and ideas can be misconstrued. But the purpose of this forum is to provide support and education, and not to be critical of others, rude, demeaning, insulting, or hurtful. Laura does a great job of moderating this forum by the goodness of her own heart. But in essence it is an unmoderated forum in that it’s owner doesn’t moderate, unlike others where there are stricter rules of conduct required of it’s members. In the real world we have to think before we speak, and I think that’s a good rule to adhere to here as well.

Unfortunately, the reality for us is that Hailey’s case has been so severe, and her complications have put us into a category where there aren’t many people around who can relate to what we’re going through anymore. But as I’ve said, I’ve been inspired by the people who stick around to help others, which is why I try to log on every day and respond to as many posts as I can. That, and because many people on this site have become like my family and my virtual support system. I think that is important to look at where things are going so that we can keep things on track, and make sure that this site remains a forum where people feel welcome to come and get the help that they need- not a place where there is constant bickering and arguing. I would hate to see us lose valuable members because of such trivial things.

[Anonymous]

I think that one of the wonderful things about a site like this is that there is such a wide variety of people with such different experiences and knowledge to share. Like you said, it often becomes like family, and families bicker. It would be a shame if people got upset and stopped posting.

I am so torn when it comes to the marci-kids info. I think that it is so helpful to have as a resource, but I do find it frustrating when people push it as the only option. It is “internet info”, but that doesn’t mean that it should be discounted. Our ped has acknowledged that it is basically impossible to keep up with all of the new research on every condition that impacts his patients. So, he is open to new ideas and willing to look into them. It’s understandable that a doctor may not have heard of the higher dosing info and would be skeptical, especially if the info is off the internet. However, it’s unreasonable for a doctor to not even consider that there are other options out there.

A friend of mine works with a local NICU preemie follow up center. She says that it’s absolutely insane how many doctors don’t even realize that there are options for reflux other than zantac and reglan. Some of the doctors work well with her center and explore a variety of options for their patients. Others insist that the “proven” way is the best way. Personally, I’d want the doctor that is cautious, but open to new ideas.

Right now, Alex’s H2 blocker and reglan are working to control her reflux. I would never have thought to try Pepcid as an alternative to zantac without this site. My ped had never prescribed it before, but he was open to trying it and I’m grateful. Prevacid was a wonder drug for Kaelyn and it made a huge difference in our life, but that doesn’t mean that it’s the only option. I like knowing that zegerid is also an option if we decide that Alex needs a PPI. Again, I wouldn’t know that it existed without this site.

As Lori said, this site has been a tremendous source of support for me over the last two years. Every time a post like the one that Lori is referencing comes up it makes me really uncomfortable. However, I think that whenever a group of women get together there is bound to be an argument. I think we just need to put it in the past and move on.

[Anonymous]

Thank you for posting this…I log on to this site everyday and read helpful posts and want to thank those of you that have been life savers for me. This site was my saving grace and also my daughter’s. It is wonderful to have a support group of people that understands where you are coming from. Before I found this site, I was a poster on another reflux site and just before I left, a huge “fight” broke out about this same topic. I left there mainly because the posters became angry and catty. It wasn’t helpful anymore because most posts turned ugly. This is a site that’s purpose is to help people whose children are suffering and that is the most important thing…helping our children! At the beginning of this post, I stated that I only read posts now…I used to post here everyday but it seemed like some posters were getting negative and snappy…its impossible to determine people’s tone when they are writing but I got the feeling everytime I posted it was followed up by one poster in paticular that jumped down my throat for posting help to others. (When someone hacked the site, it deleted the majority of my posts.)I hate to say all this but I just want to address the point that we are here to help and support one another and not get angry because someone does not agree with your ideas…I believe we want all ideas and thoughts to be out here on this site to help as many as possible. I hope this sites turns back like it was several months ago…a place of help and not “lets prove who is right and who is wrong”. Thanks for listening and I hope this doesn’t upset anyone…I meant this in a caring way! 🙂

addysmommy2006-9-29 10:50:19

[hellbennt]

Yay to all of you!

[Anonymous]

Agreed with Laura – I applaud you guys and thanks Lori for starting this

thread. TBH, I often avoid threads in certain areas (like medicine) for the very

reasons you’ve stated and generally stick with certain threads and certain

posters, which is sad. I too appreciate this forum and you all so much and I

want to keep it a warm, “happy” (you know what I mean) place.

[Anonymous]

Tracy,

Was the fight on the other site about marci-kids, too? I’m glad you’ve come back to post again and hope you continue.

To everyone else,

I really feel torn about this whole subject and I wonder if I should even post my advice anymore. I don’t ever mean to be pushy or snappy or negative in any way.

My daugter suffered horribly for 9 long months. She was on Zantac. Even after several dosage increases, she got no relief. My son also was miserable. He would not eat unless he was sleep feeding, and he was beginning to lose weight. All this while on Prevacid. His dose was just too low. He made a complete turn around as soon as he was on the marci-kids recommended dose. So, that’s what I tell people. Is that being pushy? One sided? Opinionated? Agressive? I hope not. All I know is I am thankful for the posters who pointed me towards marci-kids because ultimately that’s what helped my child.

I’m worried. Are we going to ban people who mention marci-kids like the other site did? Is that where we are going?

[Anonymous]

Christine, IMO you should NEVER stop posting. You are very wise and caring

and give great advice. And while you do often reference Marci Kids, it’s never

in a pushy way at all. I guess it’s just important that nobody push one

method as the only way or imply that doctors are wrong if they go a

different route. Big hugs to us all.

[Anonymous]

Christine, I know that I said I wouldn’t mention marci-kids again, but I feel the need to respond to your post. Hopefully this won’t spawn a debate.

The issue is not with mentioning or recommending marci-kids. They are a great group, and I also believe in their dosing, and I always post their link for people as well. There is nothing wrong with talking about marci-kids. But there is something wrong with being rude or giving off the impression that “it’s marci-kids way or the highway”. And I’m not directing this at you or at any one person, just to say that it’s been a tone around here lately, and along with a lot of the bickering surrounding this topic, people are being deterred from posting. Also, some of the rudeness that’s been going on is out of place.

I think that we just need to remember that parents who choose not to follow marci-kids are still making thought out decisions with regards to their child’s care, and they shouldn’t be belittled or insulted because there are lots of ways to treat reflux. It’s all about treating people with respect, just like we would if we were talking face to face. We all need to remember that we’re all here for the same reason.

I think that you’re a valuable member of this site, and I’d hate to see you stop posting. Like I said, that’s not the issue.

[Anonymous]

.addysmommy2006-9-29 14:6:35

[Anonymous]

I hope I didn’t open up a can of worms that’s going to turn ugly. Maybe we should just call this thread “done” like Laura did in the other one?

I didn’t mean any offense to anyone.

[Anonymous]

I agree on all accounts. This board has been a lifesaver to me. I only wish I had found it when Seth was first diagnosed. It seems when we needed it the most, I didn’t have time to even see what type of resources were available on line! I do remember how alone and frustrated I felt in the beginning though and do not want to see others go through that. I have briefly browsed on some other sites and none of them compare to this one. I sincerely hope this board will carry on with the integrity it has shown in the past and that it will prove as useful to others as it has been to me.

Having said that, I do wonder if I should move on sometimes even though Seth is not completely reflux free. It seems at times that most people with little ones Seth’s age are over this and have moved on or they have such more complex problems than us that I feel bad always posting about our trivial things. I stick around though because I do feel like most of you are my “forum family” and appreciate all the advice and friendships more than you will ever know (which hopefully will explain all my non reflux issue posts!). I also hope that I am of help to others as well even though I don’t have as much time as I would like to answer other posts- a big thank you to all of you veteran members who do devote so much time to the cause!

[hellbennt]

everyone, please stick around! I can’t do this alone

I’m good at posting links but you all put your heart into full-on responses so much more than me!!!!

[Author]

Posts