Posted By Posting
Jul 10, 2010
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.
Needing some insight, advice and maybe a hug...(very long)
So first of all, by way of depressing anniversary acknowledgment, I just discovered that Sunday will be the 3 year anniversary of my first post here. I am so grateful for this place, for this forum, and I so wish I didn't still need to be here...

Lorenzo had a follow up sleep study and, while it was good news regarding apnea episodes -- he had none! although since it is likely reflux related it just means he didn't have any THAT night.... -- it was not good news regarding his sleep, and it seems likely it is due to GERD.

He had a total sleep time of 6 hours and 18 minutes, and in that time he woke up 35 times, had 89 shifts in sleep stages and had not even a second of REM sleep. His heart rate was 130-172 all night. And from my perspective in the lab with him, it was a typical -- even a good -- night. Obviously something is disturbing his sleep so frequently that he is not able to get into REM sleep, and his heart is beating faster than it should, and of course what comes to mind is...reflux.

So...we have a GI appointment a week from today and I could use some help preparing. Just a bit of background -- Lorenzo had an ALTE the day he was born, after aspirating on reflux a few hours after birth. When he was released from the NICU, no one suggested to us that we may need to keep an eye out for signs of reflux, no diagnostic testing was done, no medication was suggested. When he was about 8 weeks old he started showing all symptoms you are all so familiar with, and after finding this site when he was about 12 weeks old, we started him on Zantac. We also started Chinese Medicine. His sleep has always been legendarily horrible -- that waking 35 time, not unusual...and as an infant he often woke gagging or choking.

At 9 months, he was still refluxing a lot but when we started to try to wean him from the Zantac there were no signs of pain. Shortly after the med wean, he aspirated again, and we were referred to a Pulmonologist who ordered a sleep study which showed Obstructive Sleep Apnea -- assumed to be the result of reflux (we tried to do a pH probe at the same time, but after 3 attempts they still managed to stick it all the way into his stomach and not notice that on x-ray so it was worthless). At about the same time, he started to show signs of a weakened immune system, and wound up with 26 infection in 12 months between his 1st and 2nd birthdays. He also found solids impossible to swallow and really didn't eat any until he was 2 (I exclusively breastfed).

For reasons I still don't understand, we couldn't get anyone to take very seriously his situation, so we basically just stepped away from western medicine and threw ourselves wholeheartedly into Chinese Medicine and Cranio-sacral Therapy. They seemed to be working wonders for his immune system and feeding issues, but nothing has slowed the reflux train (although he is now an exclusive silent refluxer). In March, he had another big aspiration while waking from a nap, which prompted this latest sleep study. And now, finally, some of his doctors are becoming concerned.

If you are still with me, bless you... So, now we have this appointment with the GI and I feel like a beginner all over again. My current thinking is that we should request a 24 hour pH Impedance Probe, a 24 hour cardiac Holter monitor, and possibly an oxygen saturation monitor all done in conjunction to track the reflux and its relationship to sleep disruption, his heart rate and oxygen saturation. Does that make sense to you? Any other suggestions, or advice about questions to raise next week? Any thoughts about anything -- I'm kind of losing my mind...and after three years of sleep deprivation, there wasn't much left to lose...

Jul 10, 2010
samsam
I'm so sad after reading your post yet hopeful. Sometimes it is good to get a second (or third or fourth) wind as you seem to be getting.Most of the tests you want to do make sense but I am not sure about the reason for the holter monitor. The pH probe would be helpful if there is uncertainty about GERD but if you are sure about it, I don't see the point in torturing him with an NG tube. Anyway, I hope you are seeing someone who seems to care. Good luck and keep us posted.
Jul 11, 2010
jeddsmommy
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
I know it sounds simple but, have you had an Upper GI done to rule out structural anomalies....just thought I'd throw that out there.

I'd do an Impendance for sure......great info you can get there.

Have you tried any med stronger than Zantac?? Have you ever had any Motility studies done either...??

You know me and you know I'm not gonna say when I am saying next lightly at all....but....

I think you may be marching closer to a Nissen....it might be in your future. Get all your testing done, ease your mind.......add a swallow study in there for good measure.

If it still comes back that all the issues are due to reflux and then you do a round of PPI meds and motility meds and everything still continues......I don't know....

3 years is a long fight......the time may come soon, to give in and do a Nissen.

((((HUGS))

Jul 11, 2010
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.
Thank you samsam, for your support and thoughts.

Thanks Jessica...I have a great deal of respect for your experience and your knowledge. I think I have been in denial for while about the whole thing. We spent so long trying to convince medical professionals that there was something serious going on, that something just wasn't right, and they have so consistently been skeptical because to look at him he looks pretty damn good. And I think I've let them convince me, just at the moment that some of them have become more convinced that perhaps there is something significant going on.

Aside from the sleep study, we haven't attempted anything by way of diagnostics or treatment using western medicine for over a year and half. So, the good news is, we have a lot to explore and try before we need to face the possibility of surgery.

Talk to me about Motility studies...I'm pretty much unfamiliar with what's out there....

Jul 11, 2010
jeddsmommy
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
Oh, I would def. say you have a while, I bet you could go for this next year trying to exhaust what is left that you want to try...KWIM.....as long as you are being followed closely.

Without a feeding tube, your motility test is confined to a Gastric Emptying Scan. These unfortunately are notoriously unreliable as DGE times can very greatly from day to do. A kid can have fine motility one day and horrible the next.

Alot of time a GI will treat DGE with meds and if an improvement is seen, they continue using it and just go ahead and DX DGE. You can do a month or two of Erythromycin and see if there is a lessening in vomiting issues.

For us, we would have loved to stay on Reglan but Jedd had side affects. Not alot of parents are willing to try it but it worked wonders for him....we hated seeing that med go.... :(

A first line of defense for testing would be an EDG an UGI and a GES. You can start there, get some results and then discuss what to do next. Since there seems to be some aspirating going on, you may want to see a Pulmonologist. They can decide if they need to do a triple scope......that way they can test on slides and see if there is aspiration damage to the lungs.

You are going to have a very busy next few months but to try get on every cancellation list possible. Talk to the surgeon about the Nissen if you can, they may be able to fast track some of the testing for you.

The very first thing I'd do though, is to get on a motility med and do a PPI....that's a great first start.

In the mean time, we'll be here for you.....(((HUGS)))

Jul 11, 2010
helen lai
Mom to Matthew, 01/16/08, GERD baby, has been on Zantac since 2 mos. Aidan, his twin brother, no GERD. Max-ed out on Zantac at 1ml-3 times/day, and switched to Prevacid 15mg split tab 08/20/08. Switched again to 20mg Prilosec 09/18/08 due to Prevacid's restlessness/headache side effects. Reflux was out of control again and had to switch to 10mg Nexium 02/11/09. Good result so far.
Dear Lorenzo Mama - My heart and prayers are with you and your son. You are such a strong mom! Lorenzo is very lucky to have a loving mom like you. I agree wholeheartedly with previous posts. I would definitely proceed with the testings and PPIs. Whenever my son reflux got out of control, the first symptom I noticed was his horible sleep pattern. He doesn't have sleep apnea like your son but he cried a lot, couldn't fall asleep and woke up many many times. Now, with the right PPI he sleeps even better than his non-GERD twin brother (except when he's teething). Like you said, the good thing is that you have a lot to explore about Western medicines and I really hope you'd find a good GI doctor and the right treatment that would help Lorenzo soon. Please keep us posted. HUGSS!
Jul 12, 2010
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 Helen -- I know you to be one of my sleepless sisters....so I am always happy to hear words of wisdom and support from you!

We had an appointment with the Chinese Medicine Practitioner today, and arranged to get her in touch with Lorenzo's pediatrician and also planned a meeting between both of his alternative therapy providers to help get everyone in the loop about what diagnostics and treatments have been/are being used, and to what effect. Hopefully we can work out a functional plan for moving forward on the western medical front on Friday with the GI...

Jul 13, 2010
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Am so sorry you are facing this still. A few things come to mind.

Why is he aspirating? My DD had and still has silent reflux ( now 3.5 yrs old) but doesn't aspirate. Did anyone do a swallow study? Fluroscopy? Barium ( would show obvious aspirations and then any anatomical abnormalities), as Jessica said, an upper G.I series would be necess.

As for the immune system, My DD Jazz was finally dx 2 weeks ago, after having to battle dr.'s and procedures, to have primary immuno deficiency disease. She needs weekly immunoglobulin transfusion ( I do them at home). This disease can greatly affect the G.I sytem, NRG levels and sleep patterns and so much more.

I'll check in soon....HUGS

Jul 14, 2010
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.
Fortunately, his immune system is doing great now. The herbal remedy and Chinese Medicine treatments have been miraculous for him.

The aspirations remain a mystery, and one which -- for reasons I still don't understand -- has been of little interest to most of his care providers. That is one of those symptoms I am coming to understand that I need to take a stronger stand on exploring. Thanks for the input and support!

Check with your
doctor first!