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Jul 14, 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
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Quinn's Lung Doctor Appt.!!!!
Well, it was a good one. As usual, they only listen when I have my dad around. The doctor listened to what i had to say, watched the video and made his judgement. He said that although the video showed that she was a little labored in breathing, it wasn't too bad. But agrees that it's only a portion of her sleeping. Her tonsils are small. Thinks perhaps it is an issue with low tone as well. He wants her to go and see an ENT doctor to look at her adenoids to see if they are swollen. He doesn't want her to have surgery unless her adenoids are enlarged and by that time, he said that given her issues with sedation and general, we would have to weigh out the pros and cons at that time to see if surgery is the best option. He also mentioned doing the bronchoscopy but hesitated about putting her under too unless absolutely necessary. He also put her on a nasal steroid. Thinks that the croup she keeps getting isn't the virus, it is chronic symptom of her airway issues. He put her on nighttime oxygen just 1/2 a liter to see if that helps. He said that at her age, he doesn't expect her to tolerate the c-pap machine and didn't even really think it was an option at this point, at least until ENT has a look at her. he also commented on her chest anatomy. He said that the middle of her chest caves in, which doesn't appear to present as a problem now, but could in the future and discussed possibly having surgery to fix it if need be. AAAAHHHHH!!!!! that would be later down the road. he also said that her bottom ribs fan out a bit and that is probably a symptom of her chronic gas/bloat issues. And then on our way home, Quinn had a seizure again in the car, this one was worse than the others. We should be getting our oxygen supplies in the next few days. We are to follow up with the pulmonary clinic in 2 months. I'm still planning on going to San Diego though for a big diagnosis. -Sarah
Jul 14, 2008
stickybean
I dont know if that was good news or not! Poor darlin'! I am sending hugs to you and beautiful Quinn
Jul 14, 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.... :(
Ugh. It never ends, does it? Will you be going to Children's in San Diego? I lived in that city for a while (I LOOOVVVVEEEDD IT) and heard so many wonderful things about that hospital! When would you go?
Jul 14, 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
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Yuppers. I'm planning on going to the Children's Hospital in San Diego. I'm not sure when, but i know it will be after September. If I like it, i might switch all her care over to there. It is a four hour drive for me, but worth it if the doctors know what they are doing so that way I don't have to go back so much. I have heard wonderful things about San Diego Children's Hospital -Sarah
Jul 15, 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
Yeah for the o2. Maybe you can finally get some sleep now. We love our pulmo and has been such a great help with Cooper. He did a bronc on Cooper and he was only very heavily sedated and not completely under. He did really well and was only 5 weeks. Cooper also has a caved in chest and ribs go out. SO does dh though, so I always thought it was just genetic. It makes me wonder. Sorry she had a seizure, that is awful. I think of you guys all the time and pray for that cutie often. Hugs!
Jul 15, 2008
mom2halleyann
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
Yeah on the O2!! I'm very glad to hear that you're going to switch hospitals...that last experience at the previous hospital was a little disconcerting. Are you going to try to see the ENT in San Diego or nearby? I think of the two of you all the time. She looks wonderful in her new picture, in spite of everything going on.
Jul 15, 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 hope the o2 at night helps. i'm glad he thinks it isn't too labored. looked like she was working really hard tho. when is the san diego appt?
Check with your
doctor first!