Posted By Posting
Oct 07, 2008
amber f
Everyone Update Post:)
It is that time again for the weekly update post. I'd love to hear from you all:)

It has been a full week of skipping Nolan's night time dose. We did have one episode of spit up but that was it. Maybe it was just a fluke? He has been sleeping the same as he was with it. (knock on wood) Anyway it is so nice not to have to plan our life around the evening dose. He still gets a half tab in the am. We survived the birthday party and life is slowing down a little now that the weather is getting colder and it is gettting so dark earlier at night. What's everyone else been up to?

Oct 07, 2008
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
Joslyn had not had a "grey face" episode in a few weeks now! Looks like prevacid (for 2 weeks) kicked her episodes and now that she is off that again and back on zantac there seems to be no change still. wahoo! She is still refluxing up and swallowing it back down... but she is not turning grey when she does. Her hiccups are bad again, prevacid got rid of them but zantac does not. She is saying "ema" or "ama" for mama. It is cute! She tried bananas yesterday and did not really like them. She still loves her rice cereal (brown rice) and breastmilk combo. She is eating it pretty thick now.. not watery anymore and she does wonderful with it. We go back next week to see how much she has gained (to see her GI Doc) How is everyone else?
Oct 07, 2008
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
Well Aidan wasn't hoarse this morning so I guess everyone must be right and that it is allergies or a cold or something. He slept all night again. YAY! So I am keeping him off the Prevacid at night until we see the GI in a few more weeks. I would like to try cutting out the morning dose too but I am taking it slow. I might give it one more week before I cut it out. Otherwise everyone is doing well here. HUGE knock on wood.
Oct 07, 2008
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Lorenzo is EATING!!!! I mean really eating -- actual meals and snacks and everything. It's kind of unbelievable to me to see him doing it, as he hadn't eaten more than a couple of tablespoons of solids per day (and usually not even that) previously. I'm actually having sort of a hard time remembering to prepare enough for his new appetite...I've gotten so used to him just eating one or two bites. I feel like there is a connection between the craniosacral therapy he receives and his new appetite, as it really took off after his last treatment when the practitioner said she was able to do some deeper work on areas he had previously been too protective of, but it is always so hard to tell what is responsible for improvements and downturns, it seems. I'm just grateful for this miraculous turn of events.

On a less positive note, last night he had a scary apnea episode in which he apparently had not been breathing and then suddenly choked and gasp and jumped up onto all fours panting, with his eyes all glazed and his heart racing. I just happened to be looking at him when it happened (about ten minutes after he fell asleep). He went back to sleep pretty quickly, but it absolutely freaks me out that this is happening, especially knowing that it often happens when I am totally unaware of it. No wonder the poor little guy hates sleeping.... We have (FINALLY) a GI appointment at Stanford on October 31st. My husband thinks we should make a costume for him that looks like a digestive

Oct 07, 2008
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!
Good idea! Fun to hear how everyone is doing. We are doing OK, Isaiah had quite a few days in a row where he didn't need any antacid help before bed. Last night he was back down popping the rolaids, but at least he'd been Ok for a few days before that. He is eating better, and seems to be growing! Finally, I'm so glad that he's making some upward progress LOL. I have had a stressful couple of weeks, and the next few months will probably not be much better. But at least we're not having *health* issues right now, so I'm happy about that!
Oct 07, 2008
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
Hi everyone. We're doing better. Halley is STILL teething her molars, but one has popped through and I think the other is getting ready to. She's had a runny nose for the last week, but it hasn't turned into a sinus infection like every other one did before her surgery, so I definitely am happy that we decided to take her adenoids out.

Our sleep training is going VERY well, which is a relief. To be honest, I'm surprised by how easy it's been, considering she's spent at least part of every night in our bed since she was born. As far as the reflux goes, we're at 4 months of relatively symptom free, so I think our ride is finally over.

Big hugs everyone!

Oct 07, 2008
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
Hi everyone!

Things are pretty good here. Sebastian has a pretty intense cold - lots and lots of snot - and is pretty cranky, mainly because he isn't sleeping well (the shock! the surprise!). But he seems a little better already today, which is day #3. We just scheduled his ear tube placement for Tuesdya, Oct 21. Crap - he is screaming now, up from his nap early. :( More later!!

Oct 07, 2008
ethan's mom
Meridith, mom to Ethan born 4/23/08. Ethan was diagnosed with reflux at about 1 month. He has been on Zantac (unsuccessful) and Prevacid. He is currently taking 7.5 mg of Prevacid 2x per day, with good results. We also suspect MPI, though this hasn't been confirmed by a doctor yet.
Ethan is mostly breastfed, though we are doing one bottle of soy formula each day. We also do some homeade "solids' including, so far pears, avocado, sweet potato, and peaches.
Well, it sounds like everyone is doing pretty well, good to hear.

We have been MIA. Ethan's papa (my dad) has been visiting this past week, and so we have stayed busy, messing up Ethan's nap and sleep schedule. :)

We went to get his first professional pictures yesterday, and he did really well. I'll have to post them in a little while.

We also tried soy formula over the weekend and it semed okay, actually he seemed to drink it better than the Nutramigen, and even better than he sometimes does with breastmilk. This makes me wonder if breatfeeding him is actually worth the hassle. I'm going to have to think about that.

We started back with solids again, and Ethan can do sweet potato, avocado, and now pureed pears. So far I can't see any reflux troubles from them.

Oct 07, 2008
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
Zack is doing generally well. He saw the GI last week and had his first feeding therapy session (we have another one today) I really hope it works...He gags on almost all solids, but it seems to be an aversion...he panics when something other than liquid goes in his mouth. He's never been on a growth chart, but he's definitely slowed with that, too, so we really need to get more calories into this kid. All in all, he sleeps great and is a happy baby who is starting cruise furniture and surprise us everyday.
Oct 07, 2008
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including,,, 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.
Cleared by nephrology and endocrinology
My dd makes me laugh and laugh and shocks me too. She is so funny. I cannot believe half of what she does. I had just finished trying to feed her lunch one day and she wouldn't eat. I am cleaning up and turn around and she is eating the foam out of the bean bag. Then that night I am cleaning up from dinner (which she refused) and she had a piece of dog food in her mouth.

We have taken all corn, soy, dairy from her diet, but I guess she still craves it. She is eating paper now (which has corn) We will be doing an art project and out of no where she rips the paper and stuffs it in her mouth. The last few days during daylight hours have been great mood wise comparatively. Meggy has played and had a great time. However she is not eating and has cut her drinking way down. She cringes at the sight of food or drink.

We saw the endocrinologist today. She said as far as she can tell Megan's endocrine system is great, but she still wants us to do sugar testing morning and evening for 6 months.

This is not sitting well with me. The only reason she wanted to do this is because I told her of Meggy being shaky and irritable every morning till she has her juice. But if the morning juice fixes the problem I don't know why we want to subject her to the trauma of being poked 2x every day.

The doc. didn't need to see her back for 6 months.

Do you ever feel like going MIA with docs? Are you ever conflicted about all the testing and doc. visits? Sometimes I just want to take her and run away to an abandoned island and just let her be a kid and have fun with out the constant interference. Then I remember that she is dealing with something. Probably allergies and if we get that fixed she will be good to go.

It is just overwhelming at times to watch your little one go through so much. Meggy takes doc. visits so hard. She panicks at the sight of the scales. The fear in her eyes makes u think of the phrase "Scared to death"

On the positive side, I don't think I have ever laughed as much my entire life as I have laughed since she was born. She is so funny and such a sweetheart.

Oct 07, 2008
Tracey, mom to Katie. Diagnosed with reflux at 3 weeks and put on Zantac. At 8 months old she was removed from Zantac as it was giving her migraines, currently on Prevacid. Switched to Elecare since she is not gaining weight; trialing solids after being off for a month. Geneticist said reason she isn't gaining weight is she is stubborn. Upcoming appts.: Neurologist for developmental delay and EGD scheduled for September. She is one funny baby!
I will update once we are out of the woods!! :) The jinx fairy might come and bite me on the bum!
Oct 07, 2008
Tracey, mom to Katie. Diagnosed with reflux at 3 weeks and put on Zantac. At 8 months old she was removed from Zantac as it was giving her migraines, currently on Prevacid. Switched to Elecare since she is not gaining weight; trialing solids after being off for a month. Geneticist said reason she isn't gaining weight is she is stubborn. Upcoming appts.: Neurologist for developmental delay and EGD scheduled for September. She is one funny baby!
I did go do a new little post about todays GI visit.
Oct 07, 2008
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
Amber, this is GREAT!! I just popped in to check on everyone and it's all here :) So, I thought I'd give a quick update too, even though I technically ta-ta'd.

Rory is an eating machine! Still having problems with "pieces" and textures, meat, etc., but making great strides. She eats well at daycare too. They had liver today, but gave Rory leftover chowder. We are keeping her on formula in a bottle until her followup on the 23rd, when we will discuss switching to milk, and cutting some bottles. I hate her pedi, but am going to decide how and when to start making changes based on her level of concern over her weight issues. She's NEVER concerned, so if she shows concern, we'll go from there. She'll be 19 months and we're praying she hits 20lbs!

I wanted to share my thoughts on this mysterious change of eating habits in her. Three things all at once I think made the difference. #1 I took her off prevacid #2 She starved for a week with the Coxsackie virus #3 Daycare and peer modelling. I am so happy we finally found "the answer", lol.

HOWEVER, despite all the good eating, I'm beginning to think that her lack of growth/gain has to do with allergies. She used to vomit eggs, so we took them away for a while. Ped was convinced it was reflux, not eggs. Well, I gave her scrambled eggs two weeks ago on a Saturday morning, and she vomited sooooo bad, like never before, within a half hour. This child hasn't puked in months. Then she lost all her colour and her lips turned blue. We were panicked, but within 15 mins she was okay. So NO EGGS....but she appears to tolerate eggs in foods....or does she??? She is still having loose stools all the time, unless she gets cheese overdose, then it is firm. I just wonder if she might have hidden allergy or something that might cause a lack of absorption? I'll be asking for an allergist referral (AGAIN) from the ped on the 23rd. Last time, she told me to talk to my GP, even though we see the ped specifically for GI issues and growth. UGH!

I'd like to say the reflux monster is behind us, but she still refluxes and is having fits of pain-related crying (I think). But I refuse to put her back on meds until I see more of a pattern. The tantrums could be related to all of the changes recently. Anyway, this got way too long. Glad to see all the updates. I continue to keep you and the little ones in my thoughts and prayers. HUGS

Oct 07, 2008
Sounds like over all everyone is doing pretty good! :) Hope it is the start of a new trend.

Today I am really happy and excited...I almost don't want to say anything...wait.

I just knocked on wood...Julian has slept well since Sunday night! No Barking, most excitingly his appetite is back!! Hopefully we have many more good nights and hefty meals!

He has his scope on Thursday, I am a bit nervous but anxious for answers.

Check with your
doctor first!