Posted By Posting
Sep 17, 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
Quinn Update: ENT second opinion
It's a lot of information, but when is it not? right? I hate going to a new doctor and filling out the "new patient form" I find myself not believing how involved Quinn is. They always make you check the list of health problems such Has your kid ever had: cardio, seizures, dev. delay etc.. I end up checking everything except kidneys. And then they only give you four spots for meds and Q has 8. Then when it comes to hospitalization/surgical history. They want you to give them dates and why they are in and I just laugh and write down "too much". I figure they can just ask me. I have a feeling that this oxygen is going to be a long term thing, at least for now. I LOVED the doctor!!!! We had the follow up with the children's hospital out of San Diego. If I were to base the decision to switch solely on this appointment, I would switch in a heart beat. I hope all the doctors are like this one. He took a very good look at her and said that absolutely, no way, without a doubt, he would NOT do surgery on her. She doesn't present as a typical case of obstruction. He said that her tonsils are actually very tiny. And her adenoids are not enlarged either. He said that her issues are likely related to central hypotonia. Due to her dysphagia and history, he feels that she is likely micro-aspirating. The fact that she is getting this recurrent case of croup (which we do believe is only a symptom of something) is probably due to other issues in breathing related to hypotonia. BTW: She is STILL sick. Kids who have obstruction due to tonsils and adenoids do not have normal and abnormal sleep studies. Her obstruction is strictly hypotonia related, which means and putting her under for removal of her tonsils and adenoids would not help her much. He was against the idea, and so were we in the first place. He was so knowledgable. He is referring her to the neuromuscular clinic in Rady Children's hospital. he also wants us to see their pulmonologist and their Mito doctors. He is THE FIRST doctor to openly admit that I am on the right track. There is too much wrong for there to not be anything wrong. We are to keep up with the oxygen and medication regimen. He said that getting her in to the new clinics is going to be a long process though. It's a bit discouraging, but I want Quinn to have the best care and if all the doctors are like this one, I am confident that she will get it at Rady. Although this appointment was what I would consider a good appointment, it's still frustrating because there's still something. Still something wrong with her. Still something that needs to be taken care of. Still something that needs to be figured out and sometimes I shake my fist at God and ask him, why can't this be easier? -Sarah
Sep 17, 2008
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.
WHat a great first step. I am so glad you like and trust this doctor. Sounds like you are on the road to getting answers.
Sep 17, 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!
Yay, you landed a good one this time! That's encouraging huh! Forms--I hate them. Our old ped made you fill out 4 pages just for a sick visit or whatever. I let them know how stupid I thought it was and how much paper they were wasting. Any way, I hope this doc gets you on the right track!
Sep 17, 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.... :(
YAY for a GOOD DOCTOR!!!!!!!!!!!!!!!!!! I know how you feel - this is how I felt when I found Dr. Wood. I hope this is the beginning of the end of constant wondering. Hugs to both you and Quinn!
Sep 17, 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.
i'm glad he is getting you referals and you liked him so much, you guys deserved a good doctor visit! How is she doing on foods, i think about her often. Emily had her first bought of diarehea in 3 weeks this week, it ended today. we went to visit chris's mom on saturday and she gave her like 2 bananas and a few too many gerber graham cookies and chicken nuggets from mc d's (mostly w/o the breading) and pasta.... oh my her tummy was unhappy! oh we also are supposed to be hearing back from a behavior therapist that specializes in young children and pain related behavior to evaluate emily and help her out. hows things with your new guy? i really should just e-mail you, but ugh i started here and time is sparse!!! one baby gets taken care of then the other wants something and not to mention dh, poor poor dh.... LOL poor me! LOL i hope school is going well, miss you!
Sep 18, 2008
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
I hope this is the first step in finding a cause for all of Quinn's issues. Having a doctor who is willing to treat her as a whole, while also referring to his peers' for specialty opinions is GREAT!!! I am confident and hopeful that while the process may be a long one, you will find some answers. It's already been a long process, right? Keep up the good work girly!!! HUGS
Sep 19, 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 glad you went for the 2nd opinion and found a dr you like who knows his stuff.
Check with your
doctor first!