Posted By Posting
Dec 03, 2011
baileys mama
need clarification from other mms on sleep problems with reflux?
Hi everyone, Im new and looking for some experience or advice or knowledge from mums with babies who have reflux and sleep problems. A little bit of background about my son Bailey. He was diagnosed late at 5 months with reflux as alot of mums kept telling me his symptoms were 'normal' in babies. He was put on zantac medication (ranitidine) and suspected of having lactose intollerance a lactose free formula. His main issues at the time were projectile vomitting, screams, coughs, chokes and vomits in a carseat or if I leave him to cry for longer than 3 minutes, wouldnt lie on back, always wanted to be held upright, irritability or crying after milk, spitting up, hicups, couching, sleep disturbance incl. crying and tossing whilst sleeping and frequent waking and refusal of solids. Since the lactose free formula and zantac the only things that improved were the projectile vomitting stopped and spit up reduced and crying after feeding and irritibilty reduced. Everything else has still been bad. By almost 9 months (now) I said to his Dr that I am just not coping with the night wakings and isolation from not getting a baby into the carto be able to go anywhere and asked to be referred to a specialist paeditrician. I have only just started seeing a paeditrician who said there are several problems and Bailey should have been under specialist care ages ago. He has diagnosed the following: sleep disorder, oral hypersensitvity and reflux causing inability to eat solids, possible primary reflux but likely not to be primary, car phobia. He has put Bailey on both zantac (ranitidine) and losec (omerprazole), urgently pushed me to see a dietician to get him on solids as he said he is so far behind at 9 months, change to anti reflux formula as he said bailey dosnt have lactose intollerance (i thought this would happen), and to take a detailed sleep and feeding and behaviour diary to try to understand whats happening. I have been on these changes for 2 days and yet to see the busy dietician in less than a week. The reason for my post is im concerned at the terms hes using 'sleep disorder' and 'car phobia'. My understanding of these terms is that they imply baby is clingly and has seperation anxiety? Is this true, am I understanding the terms right? This is upsetting me because I know my son and a car phobia is not whhat this baby has. He wil go in the seat but after mayybe 5-15 minutes hes in hysterics, like something clicks which I think is pain and all the tricks regarding toys, mirrors etc dont get him going longer than 5-15 minutes. He also refuses to settle and sleep in the carseat. I also dont feel Bailey has seperation anxiety around sleeping. I do rock him to sleep which only takes me maybe 3 minutes b4 I put him down but he never wakes during the day crying. At night is terrible hes restless, rolling, smashing head on cot very very hard, sitting up then colapsing and most importantly crying and whimpering with his eyes closed!!! I have also witnessed because we use a baby video monitor that he has woekn up at night looked around and then lay back down and gone to sleep. In my unexpert opinion 'something' wakes this baby and its not cause hes wanting mum or dad because his eyes are closed. The only reason I go in and pick him up is because if the crying is left to long it properly wakes him up and hes then fully awake and cant get him back to sleep and hes up for 2-3 hours. When I pick him up hes distressed but eyes are closed, hes tossing in my arms and hhard to resettle. Day naps are not a problem and infact sleeps alot of sleeps during the day because hes catching up from the night. I am so unhappy and stressed about this. I am very sleep deprived and get not more than 5-6 broken hours since he was born. The specialist is also saying once reflux is under control i need to start sleep training school and controlled crying. This isnt for me I just cant do it. I really need some help from anyone here who has experience with the things I am saying. Is his reflux causing all this? is it seperation anxiety like the dr is saying? wha t the hell am i gonna do, im a first time mum and just dont know whats serious, whats normal and how long this is going to go on. Im an so upset, a little depresed and scared for my son because I love him so so much that what ever is happening is really affecting him and our lives. I am sorry for the verbal diahorrea but need clarification from experienced mums. xx
Dec 03, 2011
baileys mama
further to my post
He is fine with strangers or ppl, If we leave the room hes fine, he doesnt show in any way to me that he has seperaion anxiety
Dec 03, 2011
mommytosmf
It definitely sounds to me like there may be some underlying sensory processing issues going on with the way he is upset alot. Many children who have reflux and feeding issues also have sensory processing disorder. I would definitely talk to a pediatrician about going to see an occupational therapist so they can evaluate him. That is how my son was finally (after 12 months!) recognized as having sensory processing issues. They will also be able to help him learn to eat solid foods (along with a speech therapist). My little guy has made great strides in eating food since beginning the therapy program. Also, I'm glad they finally put Bailey on a PPI (Losec) because that helps control the amount of acid in his stomach, and Zantac only helps with the pain. Just make sure you are using the right dosage amount. I highly recommend visiting the Marci-Kids website and reading about correct PPI dosing, as well as checking out Buffer Babies or Cara Cream (which have helped my son tremendously). They turn a delayed-release PPI, such as Losec, into an immediate-release drug, and it tastes great! Go here: www.marci-kids.com And here: www.refluxsolutions.com
Dec 04, 2011
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.
I agree, and go here for more on Sensory Processing Disorder:

www.sensory-processing-disorder.com Look especially at "Helping Baby Sleep" and specifically at the Infant and Toddler Symptoms checklist on that page.

As mentioned, an Occupational Therapist (one trained in SPD -- as not all are) is the person to seek help from. In the meantime, if you feel like the information you read suggests that Bailey may have SPD, I highly recommend a book called "The Out of Sync Child" by Karol Stock Kranowitz.

As far as the sleep goes FOLLOW YOUR INTUITION. This is just my opinion, no matter how strongly and emphatically I may state it, but NEVER TRUST ANYONE ELSE TO TELL YOU HOW TO RESPOND TO YOUR BABY'S CRY IN THE NIGHT. If you want to know for sure whether or not there is a genuine sleep disorder (and the term 'sleep disorder' is too general to have any meaning other than a child is not sleeping like a typical child for a lengthy enough period to indicate that it isn't a passing phase), and whether any sleep disorder is related to reflux, you will want to request (or firmly insist upon) a polysomnograph (sleep study) in combination with a pH Impedance Probe. I would not, however, do so lightly with a child who has oral hypersensitivity, as it can be quite traumatic for such a child (not saying don't do it -- just weigh out all the variables first). My son has reflux and SPD. He didin't eat solids until he was 2 years old (and just to let you know, while it is obviously better for a child to be able to eat solids earlier than that, there is not, as some will have you believe, some magic window of time when a child MUST learn to eat solids or will be forever unable to do so...). He didn't sleep for more than 3 hours in a row until he was two, and then only a couple of times until he was 4 years old. He spent almost a year waking every 10-40 minutes, often coughing, gagging or choking. In spite of all of that, it wasn't until he was over a year old that anyone took my concerns seriously (and quite telling me to sleep train him) and he had a sleep study performed which revealed Obstructive Sleep Apnea, which is, it turns out, not uncommon among children with GERD, especially those with oral hypersensitivity.

These issues in combination are very poorly understood, and I have spent years researching them and observing them in action with my son. I am happy to talk with you more about all of it if you'd like -- either here, or you can email me at cristina@mothersupportnetwork.com. Hang in there -- sleep deprivation is hard, and watching your little one suffer and not feel supported in your concerns and observations is excruciating. You re not alone, and you will get through this. And we are here to help. ((HUGS))

Dec 11, 2011
baileys mama
update for bailey
hi guys thanks so much for your responses and kind words! I looked up the information suggested to get a better understanding so thanks for that. Bailey saw the speech pathologist on sat and she said he does have problems with solids and especially with swallowing. She believes from her experience he wont swallow because it causes pain so unless his reflux is under control he will not eat. She then explained that she sees many older babies/children who refuse to eat or put anything near their mouths because they associate all food with pain even though they are all now under control. We see the paed this fri so I wil be questioning him on what he will do now seeming the combination of ranitidine and omeprazole in the doses bailey is on is not working and i feel in some ways he may actually be getting worse.
Check with your
doctor first!