Posted By Posting
Aug 22, 2008
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Finally, some answers about Lorenzo's sleep...
I haven't been on here for awhile -- with Lorenzo barely napping and also wildly interested in all the things that are possible to do with his toddler motor and cognitive skills, sitting down doesn't happen much in my world these days :)

We had our follow up appointment with the Pulmonologist at Stanford on Wednesday and got the results of Lorenzo's sleep study (the pH probe was done incorrectly and was totally invalid, which I am furious about, but that is another matter...). He does, as I have suspected all along, have Obstructive Sleep Apnea. Honestly, it was a little alarming to me to see it in writing, partly because I have been told for so long by his pedi (who we have fired) that he doesn't, and partly because I haven't witnessed an episode for several months and his sleeping, while still poor for his age, is so much better than it used to be.

Right now he falls in between mild and moderate OSA, and his O2 saturation remained at or above 90% throughout the study, so the plan is to just wait, monitor and see. His heart rate was a bit high during the study, but not frighteningly so, so again, we will just wait, monitor and see.

The assumption right now is that the obstructions are caused by reflux (which we could have known if they had done the pH probe right, but again, that's another angry vent...), and the hope is that he will outgrow it over the next few months, as it does seem like there has been some improvement since beginning cranio-sacral therapy. He is also eating more solids (ie, some), and we have discovered that he has some intolerances, which we are trying to figure out in the hopes that that, too, will help reduce the reflux and, in turn, the sleep apnea.

I feel both relieved, distressed and a little sad. I am so glad that there is no sign of Central Sleep Apnea, and that I am not crazy in my insistence that there has been something interfering with his sleep right from the start. I am relieved that, as the doctor pointed out, things seem to actually be much better -- that if we had done these tests a few months ago, things probably would have looked a lot worse. I am distressed that my son is not breathing at night. Somehow, I guess since I have witnessed it happening, but always just once in a night and only a few times, I imagined it was an intermittent thing. It appears, however, that it is happening many times whenever he is asleep. I feel worried about the continued possibilities of aspiration, choking and heart enlargement. I am sad that all of the anxiety he expressed over the past 16 months about sleep, the months of waking every 10-60 minutes, the choking episodes, the frustration and depression I felt about it all could have been addressed months ago had our pediatrician listened to what I was saying, or if I had felt comfortable being more insistent that more tests be done.

In the end, though, I am so incredibly grateful for the fact that things are as good as they are, that he is continuing to compensate and thrive in spite of all that is going on in his body. I am also so grateful for the support of all the other mamas I've had the honor to connect with over the past year and half, who have listened to me in my sleep deprived delerium, assured me that I am not crazy, helped me sort through the confusing array of tests and medications, and just been there as understanding souls... Thank you all for that!

Aug 22, 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
Out of curiosity, has an ENT checked his adenoids? From what I've read, enlarged adenoids can lead to sleep apnea. Sorry to hear about the ph probe - I can't imagine how frustrated you must be.
Aug 22, 2008
jessicalynn
Brent 2 years old,
Birthweight 12 lbs 3.3 oz!
Very severe GERD,LPR,FTT
Severe esophagitis/scarring
Paraesophageal Hiatal Hernia,
Esophageal Dysmotility,
Food impaction,Aspiration
ALTE,Dysphagia,Odynophagia
Eosinophilic Esophagitis,Severe retching
Severe allergic colitis/malabsorption
Susp eosinophilic colitis,chronic diarrhea,
Laryngomalacia,Gas/Bloat Syndrome,
Visceral Hyperalgesia,GI Dysmotility,
Chronic infection(ear/sinus/lung)
Adenoid/tonsillar hypertrophy
Gait abnormality/bowlegs,widened growth plates
Susp Vagus Nerve Damage
Surgeries, Nissen fundo,hernia repair/
reconstruction,esophageal dilation,gtube,
ear tubes,adenoidectomy
Bronchs w/ BAL's,lung biopsy
Upcoming scope/colonoscopy
Manometry testing in Oct.
Meds: Nexium,Zantac,Baclofen, Neurontin,
Zofran,Pulmicort/Splenda,PrednisonePRN,
NPO tubefed continuous elecare 24 hours/day
Yes, definately have him seen by an ENT. Brent had OSA caused by humongous adenoids obstructing his airway. He had them removed and he doesnt have apnea anymore. You're dr's are right, reflux can defiantely cause it as well, but you should rule out other possibilities like adenoids or tonsils.
Aug 22, 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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I'm so happy that you have some answers. You have been searching for such a long time and just to have some clearification is an enormous weight off your shoulders. I hope that it is a matter of time before Lorenzo is feeling better. You still have the apnea monitor, right? I hope so. I have been thinking alot a bout you. And i just want to add a few curse words for the whole PH probe thing. What a pain in the booty!!! let's try the line break

-Sarah

Aug 22, 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.... :(
Glad to hear you finally have an answer. I hope this is the beginning of the end and that you get your little man (and yourself!) sleeping very, very soon. Thinking of you!
Aug 22, 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.
Yes, glad to hear from you and that you've been given some answers. I hope that you will all be sleeping beauties soon enough!
Aug 23, 2008
mely
Amalia 11/1/06, Silent reflux- Weaned off prevacid in the summer- back on again 15mg. Back on lactaid. Atalia- 6/17/08 DX with GERD and colic at 9 days of age. Appears to have mild MSPI. Upper GI. On Prevacid 22.5mg. Successful transition to whole milk! Eats everything!
Pic. Amalia and Atalia having fun at home.
So glad you are getting some answers.. Praying for your little one. God Bless.
Aug 23, 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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Hi there, Elyse had the same type of apnea (in addition to her earlier preemie related apnea) but she grew out of it (or her prevacid managed it anyway) by about 6 months of age so we were so blessed!! i can't imagine going thru it for 16 mos because it is so scary. Hers happened multiple times a day, including while awake. No one listened to us until a nurse finally saw it in ICU at 3 mos old so I know what you mean about drs not listening. When she saw it she yelled for someone to come see, and everything was set in motion for Elyse (another story). I hope everything continues to get better, and i remember that you live in CA (coastal area, right?) We want to plan a coast trip so let me know if you want to get together. I know we talked about it in the past :)
Aug 23, 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
Cooper's apnea, hyponea, brady & tachy cardia were all related to reflux. But it was so scary anyway and at the thought that it might be something else. Hopefully you can get his meds and feedings all worked out and it will subside. So good to hear from you. Hugs!
Aug 23, 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
Oh yeah, does he see a chiro. I see the Chinese med. in your siggy and was just wondering. It helped Cooper greatly. His sleep and snoring has greatly improved.
Aug 24, 2008
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Thanks, everyone, for your supportive words. Sarah -- I'm kind of horrified to admit it, but we never have had an apnea monitor. Since none of the doctors believed my past observations of him having apnea episodes, I eventually got to feeling like I must have been overstating the problem or something. I sleep with him tucked in next to me, and since he wakes up so much I sleep very lightly, so I have just been relying on my intuition. I'll tell you what, though, now that I see results of the sleep study on paper, I'm kind of freaking out -- I can hardly sleep, because all I can think of is, "is he breathing now?" I think of you often, knowing that you have felt the same sense of helpless fear and frustration.

Cooper's mom -- yeah, we did acupuncture and Chinese herbs, with limited success, and now do cranio-sacral therapy, which has led to some pretty amazing improvements. We've also done some homeopathy. It seems Chiropractic is about the only thing we haven't done! Maybe we better give it a try...

Elysabeth's mom -- yes! We live in Santa Cruz, and would love to meet up with you sometime if you're coastside!

And Mely -- I love that photograph in your signature...it just melts my heart...

Check with your
doctor first!