Posted By Posting
Jul 08, 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.... :(
Sebastian is home from the ER...EXCELLENT news and not great news
Let's share the EXCELLENT news first...Sebastian has only ONE eosinophil in his esophagus...so NO EOSINOPHILLIC ESOPHAGITIS!!! HOORAY!!!!!!!!!!!!!!!!!!! That is so wonderful for us to hear, although that still puts us at square one with figuring out what he has. The GI on call who sent us to the ER today really doesn't think it is Celiacs because 1)Sebastian has never had wheat or gluten except for traces amounts in his oatmeal for two weeks in April (Rissaroo - do you know anything about that?) and 2) we have no known family history. But his intestines are apparently a wreck. They did blood testing today to rule out a boatload of things, including celiacs. He also is making no progress with his reflux, and it has worsened since his upper GI in February. His Prevacid is useless, and the docs won't change his meds because they don't think it will help, and they won't prescribe carafate (however you spell it) because it will interfere with the absorption of the useless Prevacid.

What sucks is that we got the same old crap from the ER doctors..."He's so big...he's fine...he's gaining weight...etc...etc." Now, I know that I am lucky to have a baby who gains weight. I KNOW that, doctors. BUT that doesn't mean big babies don't hurt and don't vomit full meals several times a week...always at night or first thing in the a.m. They also neglect to acknowledge the fact that I have been watching like a hawk since he was born (just like you moms do with your own kids) and that he isn't eating anything that will make him sick! I pretty much demanded Nutramigen and would have switched him myself when he was barely a month old...and took charge of his food switches pretty much from there. If I had listened to just his doctors, who the heck knows what Sebastian would be like now. He has a severe dairy allergy, and his first allergist told me to try milk because otherwise, I am like one of those people who is afraid to go on the highway and who never ends up going anywhere as a result. So I take credit for his growth. I don't care if the docs like that or not. (Note/Disclaimer: You should listen to your docs, not discredit seemingly bad advice like I do)

When I explained Sebastian's discomfort (ladies, we are back to inconsolable screamfests every 30 minutes ALL NIGHT LONG), they smirked at one another and said to give him Tylenol. TYLENOL? They said I can't really "tell if he is in pain" and that "you can't really do anything for reflux...and he's growing." I was ust waiting for them to tell me that it is just teething.

So we get our blood results back within a week, and I will keep all of you posted. Thanks very much for your concerns...I appreciate them so much!!!!!!!!!
Jul 08, 2008
amber f
Thank you for updating. I have been looking for it all day. I'm sorry the ER docs gave you such a run around. But at least they are narrowing down a few things. I too have a big boy so I get the he can't possibly have reflux, they usually are FTT and so skinny. Well I'm happy to say my doctor understands things. (((HUGS)))
Jul 08, 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!
ugh...where's the er docs from tv when you need them? I bet they'd do something. So happy about the good news, but the other stuff is a bummer. Hopefully they'll figure out something soon.
Jul 08, 2008
abbysmom
Andrea: Mom to 3 crazy girls!
Jackie (3/01)
Payton (9/03)
Abby (4/06) Prevacid 7.5mg (evening), MSPI, goats milk (currently trying to wean off Prevacid)
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I guess I would demand that they change his meds. What about Zegerid? You should research it on Marci-Kids and take the info with you to the next appt. I just can't believe they won't change his meds! I can't imagine how frustrated you must be. I hope that they can find an answer. xxxxx
Jul 08, 2008
daniejo
Mom (Danie) to Adam (9-4-03) & Nate (3-7-07) Nate was diagnosed with silent AR at 2 months old. He was on neocate, prevacid 30mg per day and couldn't start solids till he was almost 8 months old. He started cow's milk at 14 months and is currently off all meds!! So far so good :) PIC: Disney trip 2008. Nate didn't know Piglet was there, he didn't like the characters too much.
ugh...don't ya just LOVE the "but he's a big boy, at least he's gaining weight" I am fortunate that the dr I switched to really didn't focus on Nate's weight. Thanks for the update!! I really hope you can both get some rest tonight.
Jul 08, 2008
ann_riley
unbelievable
I can't believe they gave you that run around...or actually I CAN BELIEVE IT- I have had the same thing (for different issues) when I've gone in to ER with my kids, very very frustrating....especially when you hope and pray that SOMEONE will find something or give you something that will finally help....I'm so sorry to hear that he is having terrible screaming fits, that is just so upsetting for you and the poor little guy. My son is now almost 5 and I believe he has had a form of reflux probably since he was born and everyone just discredited alot of my questions of weird symptoms he was/is having....I might not be in this position with him now...truly, we as mothers have to do our own research and demand doctors hear us....but is soooooooo hard. I'm thnking about you.
Jul 08, 2008
lauren'smom
Jennifer - 1st time mom. Lauren (6/1/07) diagnosed 9/07 with GER at 3 1/2 months. Prevacid 7.5 mg in the am. Currently drinking whole milk and eating great!!
No longer aspirating! Yippee!
Picture: Why would Lauren play with the hundreds of dollars worth of toys scattered in my living room?!?! When she could play in a box! Estimated move date: Oct. 3rd!
Thanks so much for updating. UGG. Your ER experience is exactly why I dread that place...I am so sorry that they won't change his meds! What's up with that? I totally don't get it. I would also be frustrated that they seem to use his size against him, he's big, so it doesn't matter that he's in pain. I hope you guys get some rest tonight!
Jul 08, 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!
I know y'all know this but....I do believe some kids are "big boned" or something to that effect. I mean Nate doesn't look that big and I held a kid that weighs 20lbs and he felt like 10. I really think they need to get over the weight obsession. It really has nothing to do with it. I mean...my uncle weighs plenty and he has reflux so how's it relevant? (LOL)
Jul 08, 2008
eswrede
Mathias Johann - 12/14/05 - GERD, Hypotonia, Sensory Processing Disorder, Dyspraxia; Stopped silently aspirating at 20 months :)
First partial seizure on 7/2; First Endoscopy on 7/16; results: bile reflux gastritis.
New Meds: Zegerid & Carafate
Allergic to dairy
That is awesome news about the EE!!! I hope someone can help figure out what is going on - the little guy sounds just miserable. I understand about the growth issues too. M is 34lbs and 40" at 2.5 years and we have been getting the "but he's growing so well" speech since day one. It is really annoying. I hope you both can get some rest tonight. Libby
Jul 08, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
What state are you in again...???? I would take him to a nationally known hosp. for children to get better answers...JMHO....

BTW YOU VERY WELL CAN DO CARAFATE and a PPI together...they are DEAD WRONG!!!!!!! The tricky part is making sure you folllow the rules of dosing VERY closely in order for BOTH meds to work the most effectivly. Like I said it CAN be done, WE did it and countless other children at P2P have done it.

It's not fair that Sebastian HAS to be in pain while they do NOTHING!!!!!

I would have been rip roaring MAD!!!!! Heck I upset for you!!!!

But, it still is FANTASTIC news about he EE. WHOO HOO!!!!!

I really would push to have him seen at a leading hospital. They woudl do much beter at gettign his issues under control. Even with as good as our hospital here is, I got much farther and much better answers out of town.

Jul 08, 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.... :(
Thank you, everyone. Jessica - he goes to Hopkins, the top hospital in the country (but not for kids, I guess) since 1998. AND LOOK AT THE TREATMENT WE GOT. We are midway between Baltimore and DC, so if things don't get better at Hopkins, we are headed to Children's in DC, where my friend's baby had surgery to correct plyoric atresia. I know these doctors are getting really, really annoyed with me - I called the GI nurse twice a day starting last Wednesday, for example. She was supposed to email me lab orders for Sebastian's bloodwork yesterday, and SHE DID NOT. She called today when we were in the ER, and she was hopping mad that I took things into my own hands. AND I DO NOT CARE. This entire hospital is starting to hate me, and that's tough crap for them.
Jul 08, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
YOU GO GIRL!!!
Make them mad, that's there job and they should be doing it. If not take matters into your own hands....I don't balme you.

Your baby's quality of life is worth it.

the only palces I can think of that are close would be CHOP (Children's Hosptial of Philadelphia) in Philly. Or farther up at BCH (boston Chidlren's Hosptal)in Boston.

If the surgeon would not have arrived here when he did we were going to head to CHOP for Jedd's heart surgery. We actaully put in a packet for approval to go there and wer denied. they pushed the surgery teams hands and FORCED them to do open heart surgerys BEFORE they wanted to...GGGRRRRRR I dislike insurance co....BUT It all worked out GREAT int he end :)~

If I had to pick between the two form what others have told me...I'd go to BCH. They ahve a moltilty clinic and are the leading experts there (along with Nationwide in Columbus Ohio)

I know someone whose DD is VERT complex medically. I mean VERY complex and ALL her care is done at BCH. Here is her Caringbridge site....

http://www.caringbridge.org/visit/eithenerosehilliard
Jul 08, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
I am so glad he doesn't have EGID/EE! That is wonderful news. But I am sorry for the crap treatment you received. They don't get it. No one gets it unless they have been through it. Oh it angers me so. I hope you can get something figured out for your little man soon. Big Hugs.
Jul 09, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
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Has he been checked for Crohns?
Jul 09, 2008
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
This may be way off, but have you ever heard of Hirsprung's Disease? My nephew has it, and though it doesn't seem to affect the upper GI tract, he's got major problems with the lower. I'm so sorry these docs can't cut you a break. You're in MD, right? The GE I go to here in No. VA is fabulous, and may be able to give you some answers that you're not getting. I NEVER got the "but she's gaining and growing" crapola from him. Let me know if you want the name and number. slimfast13@hotmail.com Meghann
Jul 09, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
until recently emily had always been on the low side of normal with weight. there was a scary number of months where she didn't gain anything but our GI fixed that. Our GI never gave us that crap about weight or how good she looks or if she was happy at the office, any good doctor will know kids a freaking resilient and have a wide spectrum of moods lol

I totally agree with you that we moms have to take our kids care in our own hands and that is why i believe that emily is as healthy as she is as well. if i did not push or look or research and i listened to her old pedi, i scare myself thinking of where we could be now.

and there are TONS of things that could be causing him pain that don't cause him to loose weight. i mean think of this, if you break your leg you don't loose weight right? my MIL has Ulcerative colitis and she is not skinny. Emily has bowel problems as well that cause her pain and she maintains and gains weight.

oh and we have done carafate and prevacid THREE times and it was EFFECTIVE. The GI might not want to prescribe it b/c it might heal what is wrong and they might not find out what is causing him so much pain. i know that sounds cruel. Man i hope he feels better soon!
Jul 09, 2008
seamus' mama
Seamus was born 7/6/07, one month early with Silent Reflux. Zantac since 3 weeks old, currently taking herbs and probiotics.
Thanks for the update..Those doctors can be such horrible listeners. I am awe struck by the stupid things they suggest at times..How about Tylenol? Ridiculous is all I've got to say! I hope that the blood work sheds light on Sebastians complexities. I am so sorry that you aren't sleeping again. You must be exhausted. Those screamfests are really horrible. I am glad that his esophagus is doing well. I hope to hear more good news come from you soon!
Jul 09, 2008
katiesmommy
Tracey, mom to Katie diagnosed with GERD at 3 week.
So glad to hear of the good news! Couldn't get internet last night or first thing this morning so I called my mom and she read the news to me as you guys were on my heart and in my prayers since I read you were taking him to the ER. I hope they figure out what is wrong with him and are able to help him be at ease!!! You guys are in our prayers!!
Jul 09, 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.
Glad for the excellent news about EE. At least that is comforting. Also about celiac's as well. What do they mean when they said his intestines are a wreck? I like the idea of going with the route of colitis or hirschprung's.. thinking it is lower GI and not upper GI?

I hear you on the reflux not getting any better and can certainly sympathize as Coyle's too has gotten worse. However, mine atleast sleeps somewhat well @ night most nights so I'm really sorry that he is experiencing pain then. I wonder why he only pukes at night. what happens if you don't feed him @ night? does he puke more bottles up during the day?

as far as the weight issues-you know i can't help ya there. in fact, i'm admonished at our doctors who do tell us that coy is growing well when he is in fact half the size of sebastian. so while they are correct in that he is growing well it is probably because 1. the elemental formula 2. his issues dont have to do with weigth gain.

how difficult would it be for you to go out-of-network?
Check with your
doctor first!