Hi! Katy (Raising Angels) told me about this site...we met on another reflux website. There is so much to tell about my daughter, that it overwhelms me to introduce ourselves! :shock: Chelsea will be 4 in March. She has had 2 fundos with 2 hiatal hernia repairs. Her 1st one was at 22 months, and her 2nd was at 30 months. The 1st one herniated 3 months after it was done:mad: . She is now...let's see....45 months????? It has been 15 months since her last one and she is refluxing still.:mad: However, we still have a handle on all of it as of today. She takes 30 mgs of prevacid, 3 mls of pepcid, 2 mls of nortriptyline, nasonex, and xoponex, atrovent, and zofram as needed. She also takes benadryl cold and sinus and delsym cough medicine every night before bed. We have found we don't need the nebulizer as much when we do this. She sleeps sitting up in bed a lot with us. She had the fundos because she had chronic sinus problems, and the reflux narrowed the opening between her vocal cords causing chronic stridor. It also triggered reactive airway disease--she lived on nebulizer treatments until this last fundo. She also had laryngospasms (airway closes off when liquid threatens to enter in). She also had a ton of pain and wasn't eating much and wasn't growing well but none of that has changed. She still has a ton of pain, still has reflux, takes more meds than she did originally and still doesn't eat much---but it is more than before thanks to the nortriptyline and thankfully we have had a great year with all the sinus and respiratory stuff. That was the hugest improvement!:razz: However, it is slowly creeping back into our lives but we are working hard to remain in control. Her growth still isn't that wonderful, she is in the 5th percentile for height and 10th for weight....we are concerned about a Growth hormone issue for height as it hasn't changed in a long time. She weighs 29-30 pounds depending on the day, and again will be 4 in March. She looks great though because she is short. It all works for her! She had a severe speech delay but is now at age level in vocabulary. Another huge improvement after the fundo---because it took away the sinus/throat/breathing issues she started talking all by herself and improved a whole year all by herself!!!! Her pronunciation is perhaps a bit behind still. She has sensory issues too. She only went to therapy for a month a long time ago and I pulled her out. I do all of it with her myself at home, and I started homeschooling her. My son Gavin is almost 8 months and has had reflux since birth--been on prevacid at 15 mgs. Has always done well until recently the little bugger isn't wanting to eat. His weight has dropped form the 75th percentile to the 5th in a little less than 4 months. We were forced to stop breastfeeding as of today and do all formula at a desperate attempt to put some weight on him. He eats solids but isn't getting the fat because he doesn't want to drink. Go figure....:-? So we'll see what happens with him. I am happy to have the support. I really struggle with my daughter still having to live with this and I get worried (when I give in and let myself) about the future...will this just continue to get worse or will it get better...if it is worse what will we do....I am sure you know the thoughts. Looking forward to getting to know all of you and Merry Christmas! :snowman: :xmas1: :holly:

HI there Carla and welcome to the boards! So pleased that Katy pointed you in this direction and you have joined us!! :-)
(((HUGS))) Sounds like you have had some really rough years with Chelsea- poor poppet. I guess you have to take things one day at a time and not think too far ahead......
Things are a little quiet around here at the moment as some are away for Christmas.. but it's lovely to have you aboard and I look forward to getting to know you (although, I'm going on holiday for 2 weeks to Australia... so will "see" you when I get back).
Take care, have a great Christmas- Gavin's 1st!!! (and my sons too...)- it's going to be a blast!! :-)

welcome. This web site has been so helpful. It will be nice to get to know you and your kids.
karie

Welcome Carla! (And thanks, Katy, for telling her about the site.) I admit I am a bit overwhelmed by your story, but it sounds like you have a wonderful attitude by focusing on the progress your daughter has made. Of course, worrying about the future is understandable!

My son is 26 months old and, I think, relatively reflux free. But he was not diagnosed until he was 10 months old, and by then, he was a non-eater. That continues to be our #1 issue. It is tough, but the support here is wonderful.

Merry Christmas to you and your family! :holly:

Hi and Welcome!

Our son had his first fundo 10 months ago... He is 3! Welcome to the site!

Hello, and welcome, Carla.

Wow. Glad you found us. I look forward to getting to know you.

Hi Carla and welcome to the boards! I'm glad Katy told you about us! Evan will be 4 on March 25th. When is Chelsea's birthday? We're dealing with chronic sinusitis on top of the GERD, DGE, and sensory issues, so I understand much of what you're going through. My little guy is just starting to talk (a few words here and there). He has major delays in speech, feeding, and fine and gross motor skills.

I look forward to getting to know you!

Chelsea will be 4 March 30th. Her speech was the weirdest thing. She said her 1st two words at 9 and 10 months (Dad and dog), then didn't say anything else until 16 months when she said mom (finally!). Then nothing until 2 but stopped saying dog because our dog died. At 2, she was evaluated by our early intervention center, and they made a very big deal out of where she was at in all areas. I didn't feel it was an accurate evaluation because she was VERY sick and they did not take that into consideration. The group they put us in was not one that I felt met her needs, and I didn't like the way we were treated by the therpaists running the center--so I pulled her out. About 6 months later, at 2 and a half, I started taking her to a private therapist because thankfully, there was one covered by our insurance plan. She was great but Chelsea was sick so often (this was in between both fundos) that she was never there enough to make a difference. So I worked with her myself, not doing anything really that intensive--and after her 2nd fundo she just started talking. Now at 3 and a half she is at complete age level and blows us all away! I always felt all along that she could talk but chose not to because it hurt. I felt that when she got better she would catch up and she did. The therpaists at the center treated me like I did not know what I was talking about and made me feel like she had very serious developmental problems, when I felt that was not true. She does have sensory issues but we just deal with them. I don't know if they are not that bad or if I just am good at dealing with them. Who knows?! I look forward to getting to know you better, we seem to have a lot in common!

Hi Carla

Welcome to the site. Glad Katy told you about us (you mean there is another reflux site out there? LOL)

Shae-Lynne also had very delayed speech and saw a speech therapist which didn't seem to help that much. Roni taught her sign language and then just all of a sudden Shae-Lynne started talking on her own. Now she is like her grandmother and never shuts up! The sign language really helped her to express herself.

Her weight is also very low. She will be 6 in May and weighs about 32 lbs. She is very tiny but to me she seems like a real toughie. She is tube fed since about 3 months old and so that is her life.

The chronic sinus trouble and voice problems are what I am living now and it is no fun. Severe asthma attacks when I wake up. Thank God for the nebulizer that I have at home.

I am sure you will find much support here.

Best wishes
Jean

Carla,

When you get a chance, you might like to check out the Sensory Integration and the Older Kids forums.

Now you must be overwhelmed by the resopnses. I am greatful that your friend lead you hear. It sounds like you have a lot of knowledge and experience (unfortunatly). I too have an older GERDling. My DD will be five next month. Boy a year ago she weighed about he same at your DD. They are so tiny aren't they. She had a great year this year though. She is off her meds (every day one's any way) We are spot meding her. Seems like she has been "spot medicated" for over a month now. I still am not giving up hope that she is going to be reflux free.:shock:

My son was also born with reflux but grew out of it after a year. I breast fed him until 10 months but he started to loose wieght too.

Well, so this doesn't become a book and overwhelm you I'll stop now. :shock:

WElcome
Sue

Why HELLO :wave: & (((hugs))) for you too !!! It feels like it has been forever since I've seen you around. How's that little boy being for you ??? I bet he's huge now :) Oh, the sinus thing who did you get to finally help you with that ? Noah is on his 6th month straight of the never ending sinus infection with the yummy green ear drainage. All of his docs are running around like idiots trying to figure it out. Ugg!!! It must be Christmas time because Noah is hacking up his lungs and strage colors are leaking out of his body :) & of course Shanea (my youngest) has come down a day early with her annual Christmas stomach flu :pukerigh: I'm so glad you made it over here.