Posted By Posting
Nov 04, 2008
amber f
Everyone update Here
Hi all. Time for the weekly updates. I started yesterday doing the final (hopefully) med wean. Per the docs request I'm giving him his prevacid every other day now. It seemed to go well yesterday with out it so maybe we will be med free by next month. His cold is pretty much gone and so is his hacking cough. I hope all the los are well and recovered from the sugar shock of Halloween:) I can't wait for your updates!
Nov 04, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
We're sick here. Both Jazz and I have rotten colds... BLAH!

Still waiting for Jazzy meds to kick in for her Eosin. colitis.....and now she started refluxing again, so waiting for the GI to call with increased dose or new med. Aren't I full of good news????LOL

Nov 04, 2008
sadie
Our 1 year old daughter has silent reflux, hypotonia as well as benign external hydrocephalus. We are currently weaning onto whole milk (we'll see if it works) and she is also on Prevacid 15mg per day.
Hmmmm...Keira cut a total now of THREE TEETH last week! And she had a cold and she has a major diaper rash that she had to have prescription ointment for. It's been quite a crazy time lately! Oh and she's refusing her naps! :P That part is nothing new though...thanks reflux!
Nov 04, 2008
stickybean
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.
well.... Joslyn now says "dadadadadadadada" and she is a rolling machine! Her evening feedings have been better since we have been giving her a bottle of bm instead of nursing. It makes the night so much less stressful for me when she does not scream during her last feeding!

Her reflux seems okay so far....she seems to be teething but no teeth are coming through. I wish everyone sweet naps, no pain, healthy bodies, and lots if hugs!!!

Nov 04, 2008
ethan's mom
Meridith
Mom to Ethan, born 4/23/08. Diagnosed with Reflux at about 1 month, started medicating with Zantac, which wasn't helpful for us. At about 2.5 months, we started on Prevacid, twice a day, and that is working much better.
Ethan is breastfed and has a few solids that he is enjoying very much.
We seem to be doing okay here. Had a rough weekend, but decided to do the CIO thing again, and sleeping is getting easier. Feeding is still rough, but less loud and high pitched.

Ethan has taken over the living room and is a scooting machine!

We are still trying to figure out the timing on Axid and Prevacid, but it is seems to be working. No puke since last Wednesday!

Nov 04, 2008
engin117
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, engi@nowaira.net, 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.
Meggy had a pulmology appt. today. The doc. definitely thinks we should do a sleep study as soon as possible. He also wants us to make the absolute best of her sedation at the end of the month for colonoscopy and endoscopy and request a bronchoscopy. He asked why hasn't this already been done with all the respiratory issues she has had.

We were told by the geneticist here to ask that one get involved at John Hopkins and to ask for muscle biopsies to be done for mitochondrial disorder. She also wants us to request that they take Meggy's blood while she is already asleep and to check for the UPD on Russell Silver Syndrome testing.

We talked to someone at John Hopkins today to ask about adding procedures and getting other specialties involved. We are waiting to hear back from the doctor. I hope that they will do these extra test, as they will either rule multiple things out or help us in finding a diagnosis.

Last night I was rather grumpy, as I have only had a total of 9 hours sleep in 4 days. Meggy kept pulling on me and wouldn't let me go the bathroom or anything. She was just hurting. So, I told her please just give me a minute to myself. I must have sounded rather harsh or something. She found a corner in the couch and fell asleep. During the night I woke up several times to hear her crying and calling for help. I must have hurt her feelings because she didn't come to me as she normally does. She was holding her head again and tears rolling down her face kicking the bed. She was saying help help pees, stop pees stop. I held her and she stayed like that in my arms from 3:23 in the morning till 6:45AM with tears running down her face. The pedi. still says she doesn't think there is reason for concern, that Meggy is just more sensitive than some kids. Who do u listen to, a pedi. that wants her in the hospital long term and won't let u choose a different hospital than the one that overdosed her, or a pedi. that doesn't see concern for anything.

Nov 04, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Your Ped sounds insane Engin...thank godness at least someone wants to do lots of testing during her Endoscope.....
Nov 04, 2008
nicholasmom
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.
Nicholas actually slept through the night last night. WOO-HOOO!! It was hubby's night on baby duty. Tonight is mine, so he'll probably wake multiple times! We got allergy test results that showed only mild allergy to egg whites, milk and dogwood. We are seeing the pedi Fri to discuss what to do with he results and for his 6 month appointment. He's creeping really fast and getting on all fours and doing the butt wiggle working on crawling and rolls all over He seems to have little interest in sitting as he just wants to go, go, go. He seems to be doing much better since we increases his Prevacid dose week before last.

Nathan is finishing up antibiotics for double ear infections. Other than some congestion and snoring, he is back to his wild self.

Nov 04, 2008
nicholasmom
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.
Engi-My heart breaks for you and Meggy. <>
Nov 04, 2008
michelle&aurora
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
Not much to update since I posted last night, lol. Tomorrow is our first "milk only" day. We see her doctor tomorrow for a weight check, to discuss allergy testing (re: the egg episode), and to talk about the "breath-holding". Mike has become really concerned about this, which is the irony of all ironies. He told ME not to forget to talk about the breath holding, lol. Considering we now know she has a pectus, he is even more concerned. We are stroller-free on the bus now, and she seems to be getting the hang of being "fairly" good for our daily trips. And that's it :)
Nov 05, 2008
bellaria
(Maria)Mommy of 2 beautiful boys
Raymond(3) Severe Trachialmalasia, very mild Cerebral Palsy, and Reflux. Currently only unsing neb and doing well w/o Prevacid!
William(2) Reflux, MSPI, severe food/seasonal/environmental allergies. Currently on Prevacid, Zyrtec, and very limited diet.
Picture:William just turned 2!
Will 2yr old
Engi, My heart goes out to you and your little one! <3 We're doing ok here I guess. I bumped Will's prevacid back up to 30mg. This past week has been hell....all day he walks around whining and crying, but sleeps at night! Go figure! He normally doesn't sleep and is happy all day. So I thought maybe a bump in meds would help. Oy... The Pedi of course wants us to try and introduce milk again. Why? Everytime we do he gets violently ill and a bleeding diaper rash...what would be different now. So then she said, try slowing introducing Similac Sensitive formula... she just wants him off the Nutramigen. I don't really want to but I guess we can try. I wish I could get him on video puking Exorcist style to show the Pedi everytime she has us try something new. Ray is also getting back on meds. :o( His reflux is back with vengence. They want to try Zantac again since hes older now. On a good note, Ray is completly day time potty trained!!!! WOOT! He sleeps so soundly at night, he doesn't notice.
Nov 05, 2008
seamus mama
Seamus was diagnosed with Silent Reflux at 3 weeks. Now he is 14 months, on Prilosec and avoiding dairy,soy,egg. Still nursing. A lot !!!
Update w Seamus..3 molars popped through in 2 weeks, extra reflux at night. Daytime he is pretty happy, galavanting..I am SOOOO HAPPY from 11/4..I won't go on about that though!
Check with your
doctor first!