|Jan 06, 2009|
Picture: This is what happens when you raise a kid on health food and they get ahold of a Coke! Bad mom, that soda is NOT on the reflux diet.
UPDATE: Isaiah is now 12 and off meds! He is doing great, eating again and hopefully will be catching up in the growing department. I am still in the "hoping it sticks" phase, but we're so happy that he's better!
Really Steamed (rant, sorry!)First of all, sorry to be MIA for so long! I've been reading but haven't posted, for some reason I was having trouble logging on and I was just too lazy to try and figure out what was up. I've been keeping up daily, though. Anyway, grab a cup of coffee and sit back 'cause I'm about to let fly with a big rant! First of all I love my husband very much and we rarely disagree on things and we have a great marriage. I'm very thankful to be married to him. However right now I want to strangle him! He is so insensitive when it comes to this d*mn reflux issue! He had mild reflux as a teen and I think he's just projecting his issues onto Isaiah, assuming that Isaiah is over dramatic about how he feels and being "whimpy". It doesn't help that Sarah's GERD was silent, she just threw up all the time without feeling sick first. Isaiah is *miserable* when his reflux is flaring, he was sick for months before we figured it out and it took a miserable 2 months to get it under control, probably because it was so *out* of control when we started the meds! Now, our insurance company has upped our copay and it's costing us $10 a month for the meds. Folks, I realize this is dirt cheap...but hubby doesn't. So this morning he says he wants to wean Isaiah off the medication. He's still flaring up ON the meds, so I really, really don't think it's a good idea! I've tried to explain all the problems that uncontrolled GERD could cause him, he thinks I'm overreacting. I've tried telling him to CALL THE DOCTOR in hopes that maybe a professional can convince him he's being unreasonable. He won't do it. I AM SO MAD I can't see straight! I can guarantee you that if my husband felt icky all the time, he wouldn't ignore it. For years, I had serious GI issues and he thought I was being a hypochondriac. I was in pain all the time and tried to ignore it...and of course I know now that there was a problem that frankly does need medication or it just comes back. I don't want my kid to have to go through that like I did. I HATE his being on meds. I double, triple HATE my kid being on them. I HATE that they are expensive and that they have side effects. I'm very concerned that he's not absorbing minerals and that this will have long term effects. However, my line of thinking is that if he's miserable and throwing up, he's not eating and the food's not staying put and therefore he's *still* not getting the nutrients he needs! Plus, he's suffering. Sorry to go off, I just really hate it when dh and I disagree like this. I feel like my dh is being very insensitive and not compassionate in the least, and it makes me so mad! The kid is only 11, he doesn't need to be "manly" about his pain and not keeping reflux under control has dangerous long term effects. Dh is mad because every time he brings up his opinion on this I tell him he needs to do the research on it and *then* we can have a rational discussion as to the pros and cons. He says he is too busy to do the research. That might be true, but shouldn't he then defer to the people who HAVE done it and do know what GERD is all about? Plus, I am frustrated because the Prevacid, while it helps a lot (and the several times he's gone without it...we DO see a difference) is still not working 100%. Lately, he's been having foot cramps that are really painful, and I suspect it's a result of the meds. I need to get him into his doctor again, but I also want to find one that we like and trust a little more than the one we've got. I am just so frustrated! I wish it would all go away and we didn't have to worry about it any more. On the flip side, ignoring it obviously won't make that happen. AAARRGGGGHHHH! GERD is from the pit of hell, guys. I know you all know that, but some days I just feel so mad I want to punch something!
|Jan 06, 2009|
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
|Oh Erica, I'm so sorry you guys are fighting about this. I am 100% against bashing someone else's dh (or mine for that matter lol), so I am going to try to say what I think w/o saying anything about your dh;) First, I'm sure he doesn't *actually* think Isaiah is a wimp, he probably just doesn't fully grasp this disease. Also, with the intolerances, he likely has other factors coming into play with his stomach pain. I know how miserable I was going back on gluten and dairy, and I don't have a known intolerance, so I can only imagine what it is like for you guys. No one wants there child to be on meds. My baby has been on them all but 4 days of his life. I hate that, but I know the ramifications of not being on it. perhaps you can get you dh some info on the effects of leaving reflux untreated and the possibility of cells turning cancerous. That would likely scare him straight. lol. Have you thought about talking to your dr about switching meds, since he doesn't seem controlled w/ the prevacid. Nexium has been a life saver for Cooper, that and the elecare. I hope you can work it out. Perhaps the money isn't really the issue and it is more of a defense b/c he hates to see your son on the meds. Guys have an interesting way of showing concern. Big Hugs!|
|Jan 06, 2009|
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
|Wow! I am jealous that you pay $10 for the prevacid - we pay $50 with good insurance.|
Anyway, you are not alone on the dh front. Mine is also a wonderful guy but dhs can get these ideas that they know the right thing to do without doing any research. We have been there and back mostly with my son that has ADHD . After all these years I respectfully do what I know is right. I let him know that I can see where he is coming from but I feel very strongly about certain things since I am in the trenches. Sometimes it helps if they know that you are at least taking their opinion into consideration.
You aren't a hypochondriac. I have to tell myself everyday that Katie has GERD and repeat it and repeat it. I do this so I can accept the fact that she actually has a disease and it isn't going away and I will have to deal with it everyday. It seems to help because for so long I just wanted it to go away. I prayed for it to go away. Now I know it is something she will have to deal with most of her life.
We all hate the meds. We ALL hate the meds. But what I hate more is how miserable and sad she is off the meds. In fact I dread February cuz I know the doc is going to try to start reducing the dose. I just started taking Prilosec myself and boy do I feel better!
Hang in there. We are in a tough spot but you know what is right.
Hope you find a doctor that you like better.
|Jan 06, 2009|
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
|I know how you feel Erica. I'm like you...dh and I don't disagree much but when he has no good reason for disagreeing with me it drives me crazy. It's like they don't trust or respect that you might know more about something than they do.|
It has nothing to do with being manly either bc there's plenty of grown men on prevacid. My uncle is one of them and believe me, if there's a manly man out there, he's it :) Hopefully your dh will think about it and come around. Maybe he's just trying to flex his muscles a bit. My dh does that but he always comes to his senses when he sees just how strongly I feel about something.
|Jan 06, 2009|
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
|Erica I am sorry you are dealing with this. My dh and I have had the same conversation but at this point he just listens when I tell him what is going and what the treatment is. He has finally figured out that I am taking care of this part of the kids' lives and has decided that I know what I am talking about. One thing that I did to get to this point is to send him some articles that I have found about her diseases. I'm sorry to say that the other thing was a true experience and I hope that you don't have to go through to convince him. He was actually holding her when she had a gran mal seizure one night and stopped breathing and i had to administer CPR. After that and the docs talking to him about her problems he is convinced. Again I hope it doesn't take that to convince him.
maybe he needs to take him to the doc when you find one or gather some articles or research for him to read. that way he won't have to look anything up. I hope things get better.
|Jan 06, 2009|
Tracey, mom to Katie diagnosed with GERD at 3 week.
|I sent you a note on FB but wanted to chime in with this: My FIL "took it like a man" for many years. He then took his own life when the pain of esophageal cancer became too much. Your husband is probably stressed about something and this is the outlet. Hugs!|
|Jan 06, 2009|
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, firstname.lastname@example.org, 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.
|We ask for samples from Meggy's physicians when we can remember if we are running low on money, or if I think DH will make a fuss about something. Otherwise here are a few resources.|
We had our copays covered through this and it is free! save up to $25 instantly every time you fill your prescription of Prevacid
Based on Income and insurance
Another income and lack of insurance based.
I am sorry you are having to deal with all of this. I know it is tough enough dealing with the illness itself. Sometimes I think it is hard for our DH's to comprehend illness and it's affects. I get a lot of the same from mine. I know he means well and he is also trying to do right by her, but he doesn't do his research either and often criticizes my choices.
If I were in your situation, I would think I was doing right by my child too. Hang in there and I hope things get easier soon. I know stress can cause a lot of problems.
I am in a similar boat as you at the moment and I feel your frustration. Sometimes it feels hard enough to fight the system to get the care our kids deserve and need, and it doesn't help to have to come home and fight DH over it too.
Sending hugs your way.
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