Posted By Posting
Sep 16, 2008
mdbarbagallo
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.... :(
Update on Sebastian, and it ain't pretty.
First, I'm so sorry I have been MIA! I have been all over the place laely - I drove five hours to Long Island on Sunday for my college roommate's bridal shower, and ever since then I have been catching up on grading papers now that the semester is underway. Hopefully things will slow down a bit by mid-week.

Ok. I just talked to Dr. Wood, Sebastian's allergist. He strongly believes that Sebastian's supposed "night terrors" are actually reflux flares...and his reflux is flaring because of:

1) the high ragweed count (this explains the recent puke episodes and super snotty nose/congestion/sneezing/occasional snoring AND

2) the still-present damage to his GI tract. This makes me incredibly sad because even though I was terrified to start food trials next month, I was happy to work on getting him back on track. Now we will remain on Neocate only until at least November or December, and possibly until 2009. :(

Sebastian is also not one of the kids who gets a lower dose of PPIs as he gets closer to a year. His was just increased to 45mg a day un suspension form (15 mg is morning, 30 at night) in hopes of getting him under control at night.

This just makes me so sad.

It is bad enough that he gets hives about four times a week, and now this! I took him to my family reunion on Friday and even though I carried wipes around with me and begged everyone not to touch him (bread, eggs, nuts galore there), some relatives still kissed him/touched him. He had hives all over his face and chest/back. I ended up leaving after an hour nearly in tears.

Ok. Thanks for all your support. I will beback in full swing on here soom enough!!

Sep 16, 2008
mdbarbagallo
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.... :(
I forgot to add that I drove 5 hours, stayed 3 hours, and then drove all the way home the same day! I am tiiiiirrrrrreeeedddd because you know this little man doesn't let me catch up on sleep...but I had FUN. I needed an escape, even if it was just for a day and cost 50 bucks in tolls.
Sep 16, 2008
nicholas'smom
Glad to hear you had a good time. Sorry to hear about Sebastian's reflux and allergic reaction to family kisses (how sad). I can just picture the poor little guy.
Sep 16, 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.
I am so happy u got away for a bit. Sorry for the long drive and hives.

Have a good evening. Hope u get some rest.

Sep 16, 2008
kubicki5
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.
Gosh I hope that his little GI tract gets healed up soon. Let's hope he just needs a few more months of the Neocate. He is such a cutey pie.
Sep 16, 2008
kmom
Worry Wart mom to
27 mo. reformed "happy spitter"
34.8lbs , 37in tall(oct)
Diagnosed A/R at 6 wks
Zantac until 1yr then Prevacid
Med free since February 08
peanut & egg allergies...still
Zoo Boo Trick-or-Treating (pic).
Let's put this into perspective: He is on more medication and that's sad but it will give him relief and you will all get more sleep and thats good!

It's disappointing that he won't get to the food trial but it's only a short delay. Good thing that you didn't try it since his esoph. was still damaged. Then you would have been delayed even looooonger. So, it's good you got the news and didn't start with the food.

And most reassuring is that with all the worrying you do, he isn't going to remember a thing. He won't care that he started soilds at 15months, that he had all these test, that he had to strip so all these doctors could poke him.

Last but not least, he has a mommy who cares enough about him to be sad. Who takes him to get poked and hugs him afterward. Who comes to this board for some "been there, done that, understanding. With all his "issues" (that's what I call them with my lo) he is still a lucky kid because he is loved. You are going to get the best care for him and that should make you feel better.

(do you feel better :)
Sep 16, 2008
maggiemom
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!
On the bright side, you're getting answers. Not the ones you want to hear, but answers. I pray that his allergies (at least the bulk of them) will disappear as he gets older. Then granny can give him all the kisses he wants. Hugs!

I'm glad you got to get out and about. That helps me no matter what I'm going through.

Sep 16, 2008
maiam
maia m - GERD. Nissen Fundoplication w/hiatal hernia repair.
Mom to
Son (10) GERD(aspiration pneumonias, apnea, tracheomalacia), Food allergy, Asthma
Daughter (6) GERD, Heart Murmur, Food Allergy, Asthma, Mold allergy
(hugs) My oldest was NO foods until 12 mo, and then started SOOO SLOOWLY. I am pretty sure you are a member at KFA, too - kidswithfoodallergies? The no/few foods forum has some great ideas of things you can do to build up oral skills, so when you *do* intro foods, hopefully you won't have issues.
Sep 17, 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 !!!
Hi Im so sorry that you had to bail the family reunion..If only they could understand waht you are going through..he does look SO kissable. I see how folks can't refrain. Seamus was given an icecream cone lick on his birthday. I was SO MAD>> I hope the PPI increase helps Sebastian at night. How do they know that there is damage to his GI tract? I havent been on PAGER as much s I wish so maybe I should know the obvious..Did he recently have a test done? I'm thinking of you and hope you get some rest! Cheers.
Sep 17, 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
oh honey, I'm sorry you are so sad. At least Dr. Wood is being cautious with the food trials. You don't want to start introducing food before he is ready, because then he won't want it, and you don't want that. I really hope the increase in ppi will get him sleeping better. Sleepless nights and busy baby days don't make for a happy mommy, that's for sure. This will get better, slowly but surely. Your ability to cope with his issues will improve as each day passes and he grows more and more on your heart. You don't think it's possible to love them anymore, but everyday....SURPRISE!!! YOU DO!! Hang in there. HUGS
Sep 17, 2008
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
God knows, I feel your pain. Hang in there - Hope for tomorrow. Ellen
Sep 17, 2008
mom2coy
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.
:( I'm so sorry to hear this. This probably explains his reluctance to nap and go to sleep because he is so darn unccomfortable and sooo tired. poor little baby! I sure wish that this was not the case! I'm so glad that Dr. Wood is such a wonderful doctor.

sorry about the reunion. can't blame all those people wanting to kiss him though! he is so adorable.
Sep 17, 2008
mdbarbagallo
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.... :(
I DO feel better...Thank you, everyone. I am just letting it sink in. I was hoping the med change would work miracles and last night, it sort of did. Sebastian slept from 6:15 to 1 am, ate,a nd then slept til almost 6 am! Then he took a morning nap without a battle! But then he just wouldn't sleep for his afternoon nap - didn't fight me, but just wouldn't sleep. I gave up, and then he had a HUGE blowout. After I changed him, he puked up his bottle. Sigh. Baby steps, I guess.
Check with your
doctor first!