Posted By Posting
Oct 14, 2008
amber f
Everyone update post
Hello it is Tuesday morning and it is time for weekly updates...

Not much is going on here. We are going to my bros house this weekend to get our pics taken from his future SIL (his gfs sis). I have Friday off. The older 2 have dentist appts and Nolan has his 12 mon. check then we are going to leave.

There has been a lot of traffic on here. I'm finding it hard to keep up. Sending out a warm welcome to the new parents. If you all get a chance update here please.

Oct 14, 2008
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!
Not much going on with us. Mil is STILL in the hospital. My friend that has cancer in her throat has been given 6mos-3yrs to live. I received that email just a second ago! I can't believe that! Please pray that God will work a miracle for her. If she dies, she will leave some very heart-broken grandbabies!
Oct 14, 2008
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
It is hard to catch up. Coyle is doing really well with no medications. He's still drinking 18-20 ounces of formula and milk daily + juice and eating a fairly good amount of solids. He refuses most foods besides carb but the doctor aid that is normal even in non-reflux babies so i'm trying not to worry! I just got back from my first weekend away from the baby... shoot, i've only left his side for 4 hours before! it was great.
Oct 14, 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 had a recheck at the cardiologist yesterday. So far, so good -- it doesn't look like the apnea has led to any heart enlargement or excessive strain. He is wearing a 24 hour halter monitor right now, to confirm that his heart rhythms are good, and it may also give us some insight into whether or not his reflux is causing him any pain, as we would expect his heart rate to rise with each episode if it is. (He rarely displays any signs of pain under any circumstances -- even when he falls and obviously injures himself, so it can be very difficult to tell when something is going on.) I am once again amazed at how accepting he is of its presence.

We have an appointment with an occupational therapist a week from Friday and his (FINALLY!) first GI appointment on the 31st.

Yesterday, after not eating all morning and then going to the cardiologist, where he is always traumatized by the procedures, he took a....drum roll please....3 hour nap! Granted, he woke up several times, but I was able to nurse him back to sleep each time. That is the longest day time sleep period he has ever had. And I even slept with him for a little while!

Oct 14, 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 a scary moment yesterday. She had a gasping episode..... it lasted a long time. Her face color did not change but her face was concerning. She seemed scared. I was a mess! she gasped about 10 times in a row. (maybe more I am not sure.) She had just finished a supplement bm bottle (1 ounce) which took forever! The I went to change her diaper and she began gasping. Happened shortly after I layed her down to change her. (SILENT REFLUX MONSTER!!!)After that she was fine... non since. She LOVES bananas now! She is a monkey obsessed banana eater! hehe. We bought a food grinder so we can make her food at home. Going to get food tomorrow so we can give her some other food to eat. She is working on her separation anxiety with me. I can go potty some times now and she wont get mad at me. I myself am trying ot catch up with everyone!!! **Jacky**
Oct 14, 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.
Ethan is doing pretty well. We have our first GI appointment on Thursday morning, so hubby and I are hopeful about that.

Next week Ethan and I are off to California to visit my family and to go to a doctors appt with my mom, who is being tested for a cancer of her pituitary gland. I'm trying to figure out how in the world I am going to manage Ethan, luggage, diaper bag, etc., all by myself. I'm just glad that we don't have to take the carseat, my parents both have one, though they are pink, from my niece, but who cares.

I'm glad to hear that everyone is doing pretty well. Hopefully that was Joslyn's last episode, ever!

Oct 14, 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! Aside from his leg growth, Sebastian is doing well! He still has his cold, but the doc who saw him yesterday said it has NOT turned into a sinus or ear infection, so hooray! He is happy and crashing around like Godzilla as usual. Yesterday, he went up to the doctor and wrestled away his clipboard. He also knocked down a rice pasta display at the natural grocery store and thought it was hilarious. Lastly, he thinks it is fun to pull out large clumps of Louise's tail fur and to use her ears like they are motorcycle handlebars. Poor dog. We are working on the "Love the doggie. No, don't do that to her ears. LOVE the doggie! Gentle, gentle" bit, but he doesn't think it is as fun as abusing her!
Oct 14, 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 has good days and bad days...his reflux SUCKS. Teething SUCKS. He still can tolerate almost no solids. We have been to feeding therapy twice (today makes three) and have tried a few far no luck. He lives on Elecare and is as cute as pie. Finally got Early Intervention to call me back today to set up an assesment...they say I'll hear from them within 45 days...FUN! He's not gaining weight well at all...he's not growing in length either. We're having lab work done tomorrow to rule out anyhting big. Wish us luck. One the fun side, he is standing up and starting to cruise furniture a little...he is funny and as cute as pie!
Oct 14, 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.
I can't believe I said "cute as pie" twice.
Oct 14, 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.
Meggy has her new pedi. We had seen her a long time ago (9 months) and she didn't seem aggressive enough in helping Meggy, but when given the choice of not aggressive enough or has to be in the hospital with a feeding tube, I choose her.

She seemed nice enough and said maybe if Meggy still isn't tolerating her ultracare, we can stop it and try elimination diet of the few foods left in her diet.

She didn't want to see Meggy for a whole month, wow, what a refreshing change.

Meggy's left ear has been bothering her, but the new doc. says it is just teething and there is no infection. This is most excellent news.

She wasn't concerned about Meggy's size because she says DH is small and maybe it is just Meggy's build. As for the pain, she said she doesn't know.

She said it is very rare for a baby to have a pain syndrome like Meggy's and she doesn't know what to do about it other than increase the Levsin dosage.

Oct 14, 2008
Brent 2 years old,
Birthweight 12 lbs 3.3 oz!
Very severe GERD,LPR,FTT
Severe esophagitis/scarring
Paraesophageal Hiatal Hernia,
Esophageal Dysmotility,
Food impaction,Aspiration
Eosinophilic Esophagitis,Severe retching
Severe allergic colitis/malabsorption
Susp eosinophilic colitis,chronic diarrhea,
Laryngomalacia,Gas/Bloat Syndrome,
Visceral Hyperalgesia,GI Dysmotility,
Chronic infection(ear/sinus/lung)
Adenoid/tonsillar hypertrophy
Gait abnormality/bowlegs,widened growth plates
Susp Vagus Nerve Damage
Surgeries, Nissen fundo,hernia repair/
reconstruction,esophageal dilation,gtube,
ear tubes,adenoidectomy
Bronchs w/ BAL's,lung biopsy
Upcoming scope/colonoscopy
Manometry testing in Oct.
Meds: Nexium,Zantac,Baclofen, Neurontin,
NPO tubefed continuous elecare 24 hours/day
Well, my older 3 kids started back to school yesterday(they are on year round school schedule, go 9 weeks, then get out for 3 weeks) It is so quiet here lol. Brent is sleeping, he has been feeling bad again today. I am about to PULL OUT MY HAIR waiting for Brent's motility specialist to call me with the date of his upper and lower scopes and manometry/xray/ Loads of other tests testing date. He will be going through the ringer on this day/days, my poor sweet baby:(. Anyhow, they scheduled it for Oct 14 but when they called to tell me they forgot to schedule the scopes with the other testing, which he has to have immediately because of his eosinophilic disease and need to check the fundo/hernia repair again too.So I called last week and she said it is taking so long because there are so many different specialists and doctors in different locations involved, blah blah blah, said she'd call Mon or Tues(today) so I am just waiting around very impatiently. She said it looks like it wil be the 23rd or 24th next week, but not sure yet.. I have 3 other kids I need to make arrangements for! If his eosinophil level isnt better(and it isnt, I can already tell you that) we will probably start prednisone again in addition to the other steroid he is already on. Tomorrow he sees his other GI, so I am sure that will be another interesting visit as always, we have a lot to discuss. Lauren has been doing ok, asthma been acting up some but her meds help.I also have to take Lauren to the GI tomorrow too, because she is getting very distended and still having stomach pain, though the Bentyl is helping some with the intestinal spasms. Her motility is so slow but we are at the maximum med doses. She is already taking a ton of meds, I am praying we dont have to add more.I love their GI though, she is so wonderful.... Then Thursday Trey has to go to the dentist again, I am sooo dreading that. His teeth are all damaged from acid reflux, the enamel has been eroded away making them prone to cavities, every time we turn around, he has another one that has to be fixed. Needless to say, he doesnt like to go. And his eczema is acting up, just great! Christian is doing wonderful:) He is very excited about his 8th birthday coming up on the 28th, is already wanting to go present shopping lol. And he lost another tooth this week too, he is so cute!
Oct 14, 2008
Renee, mother to Nicholas, born 4/18/08 with silent reflux, moderate laryngomalacia, Sandifer's Syndrome& suspected MSPI. On Neocate, Simply Thick and Prevacid. Also mother to Nathan, born 12/06/06, who had mild reflux the first few months.
Goodness, everyone has so much going on. Hope Joslyn doesn't have any more of those episodes. Nathan had his first successful day at daycare Monday (minus any napping). Mommy survived the day too! Nicholas has a bumpy like rash all over that at first we thought was formula related. We switched him to the neocate and it got better for a couple weeks but has now returned. Beginning to wonder if it may be prickly heat and maybe he doesn't need the neocate. He sees his pulmonologist on Monday. We may run it by him. We are getting ready to start solids, but I want to wait to see if we need to switch formulas again. He still doesn't sleep through the night and we are all very tired. But overall, all relatively happy!!!
Oct 14, 2008
BRANDON-Zantac and Bethanacol; Neocate formula, 2 sets of ear tubes, Adnoids removed, Vasomotor Rhinits, Asthma. Currently on: Xyzal, Omnaris, Flovent and Xopenex,
AUBREY-Zegerid 2x a day, Soy Milk, Tubes put in and adnoids removed (11-7), Hypotonia, ECI therapy for low muscle tone throughout trunk and hips, oral motor issues and sensory integration issues, delayed speech, Teething, probiotics
PICTURE: Aubrey in her cute cat outfit. If you look you can see how her right foot turns in. She walks that way as well. It is not as exaggerated in the morning's but gets worse in the evenings. This was after her nap.
I have not been on in a while. I think Aubrey's diahrrea is finally gone. Talked w/ the GI and they said to go back to the Neocate but that same day her stools were normal (whew). I got off my anti's that were causing diahrrea every hour around the clock and have started a new one. I am finally feeling a little more human!

Aubrey's therapy is going well and I love Love LOVE the therapist. He is even wanting to come out tomorrow to see how her bahavioral therapist works with her and some of the things we do there. He got to see Aubrey have her "moment" and it was a mild one! Her speech is coming along. Just in the short time we have worked w/ the flashcards she is now saying sock! It isn't on a flashcard but I will take what I can get.

So without jinxing things all in all things are well. Aubrey is a bit snotty again but I am hoping we can fight this one and win!

Oct 14, 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!
Katie is finally over her sinus infection! We see the developmentalist tomorrow to see why she was so delayed and to talk about her low tone. She noticed a new smoke detector in her room immediately even though I had to search to see where dh had put it up but we just got new furniture and refused to look at the couches for 2 days and would scream if we took her over to them so we will be discussing this as well.
Check with your
doctor first!