Posted By Posting
Aug 21, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
Wow! I actually got a phone call!!!!
Isn't it ironic when you finally give up on something and suddenly, it gets handed to you? WOW! I don't know if many of you will remember, but Quinn SHOULD be on a secondary insurance called CCS (basically, it would have been easier for me to get her MRI, CT scans, blood works and orthotics approved had she been on this program. Would have saved me months of waiting for approval). Unfortunately, however, it has been almost two years of a constant battle trying to get her approved for their services. I finally gave up. Do you remember when that geneticist said that he would get Quinn approved? I really didn't believe him. And I didn't think it was worth the effort trying to pursue it. After all, it has been months since we saw the guy. Miraculously, I get a strange phone call from a lady at UC Irvine saying that she would like to set up an appointment for Quinn with their metabolic specialists. I was so confused. I asked who the referring doctor was, she said she didn't have that information but that it was for CCS. OMG!!!! AMAZING!!!!! Quinn is on CCS! I didn't even get anything in the mail! Well, the cool thing is that this is another opinion with a metabolic specialist. I hate that Quinn is getting spread out all over southern california to all sorts of different children's hospitals for second opinions, but you never know. Maybe this doctor will not have a huge head and might think outside the box a bit. I'm suppose to call tomorrow to set up an appointment. I wouldn't doubt it if the appointment is made months out, but that's not the point. Wow! I'm just amazed at the moment. -Sarah
Aug 21, 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.... :(
What wonderful news!!!!! Sometimes docs dont let us down!!
Aug 21, 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.
what a good doctor. thank goodness!!!
Aug 21, 2008
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:
Doing that happy dance!!!!!
Aug 21, 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!
Wow! I do remember all that. You're exactly right too, you just never know when a doc might have the answer no matter what hospital he's at. Keep us updated!
Aug 21, 2008
amber f
Yay! Good for you and Quinn!
Aug 21, 2008
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.
omg!! yay!!! i was just thinking about that the other day how emily just got put on CMS, they basically just handed it to us and i was going to call you and tell you to move to FL :)
Aug 22, 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
Finally - a doctor that cared enough to see something through. I'm so excited for you!
Aug 22, 2008
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).
Woo hoo! You see all the time about people who are sick for years and have seen lots of doctors but never got diagnosed. Then they find THE DOCTOR that cures them. It is a pain to drag Quinn everywhere but maybe you will find THE DOCTOR this time.
Aug 22, 2008
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
so happy for you! CCS helped with e's elecare for a couple months when our insurance and medical would not :) they also offered to pay for GI appts but our private insurance covered that
Check with your
doctor first!