Posted By Posting
Mar 30, 2012
baileys mama
Looking for more answers from you ladies
Hi ladies, firstly you have all helped me significatly with my little guy. He was finally put on ranitidine and omeprazole as well as Neocate formula thanks to the many suggestions from you ladies. Hes 12.5 months now and has been on this combo for 3 months. There have been some great improvements with Baileys sleep. Although only sleeping at night between 5-8 hours straight (which is a great improvement from b4) he is no longer screaming and crying while hes sleeping. Theres also no more smashing his head on the cot many many times. I am still struggling with things like a pram, he just does not like to ever sit down or lie down. His car travel wich always resulted in screaming, choking and then vomit within 5 mins has improved really well recently, with longer stretches up to 20-30 mins and even a couple of times sleeping in the car!!!! I dont believe it. We play the wiggles CD non stop and put the passenger seat totally forward so he can completely see out the front and its helped so much. Unfortunately the area we are really struggling with still and would love your experience and advice is with eating solids. There is just no improvement. His diet consists of mum mum biscuits maybe 2 a day. Occassionally he will have a mouthful of a baby muesli bar or 4-8 grains of rice. Thats it. He wont take spoon, fork or any utensil to the mouth. Hes extremelly interested in solids and usually cries when he sees food being prepared but when he gets it he just shys away. We were referred to a speech pathologist who worked with him and gave me many tips on what to feed and how to feed him but he hasnt improved. He is night waking for a feed and only just this week had some growth spurt where he wants to eat 5 mum mums but wont touch anthing else. So this baby is hungry. I think he likes the mum mums because they disolve. When we saw the speech pathologist her opinion was that he has a physical problem causing a barrier to swallow solids such as a swallowing poblem? As she reported this to our specialist he has decided to refer us to the childrens hospital's infant feeding clinic. They are reviewing us now to determine how urgent we are and where they will fit us in as the wait at the moment is 3 months so Im hoping they see him as more urgent and fiit him in. The reason for my extremelly long post is to give a bit of history because I havent been on in a while. Do you guys think his medicine is controlling his refux? have you got experience with refusal to eat solids in your child? What ended up happening? was anything wrong? and is this common with babies who suffer reflux? Also is the refusal to car travel and pram travel related to discomfort from reflux in your experiences? Do you have any advice for me as I think Bailey suffers from an extreme'-ish case because it totally affects our lives and we are very isolated. Hes not a baby you can allow to cry for long due to his easy ability to vomit and gets very very distressed sop pl without experience with this tell me to just leave him in the pram, car or shopping trolley to' learn a lesson' but is not an option for me when he gets so distressed. I cant so that to my son. So also sleep training and things just doesnt work for him. Also what is you understanding of the difference between GERD and reflux? Again im sorry for the many questions. I feel very desperate again and just ignorant to this world of reflux. I know no one who has experienced it this severe and often find comfort in your stories and advice. Thanks again I trully love you all, you have made me believe there are things going onwith bailey and im not making it up as some ppl I know seem to think im exaggerating things
Mar 30, 2012
baileys mama
I just did my own research and understand now why he has been diagnosed as GERD as this is when reflux is severe enough that it inferes with things like swallowing and feeding. This all just really upsets me and I just feel like crying. From birth I knew something wasnt right with this baby and the nurses dismissed me, health care professionals dismissed me and called me first time mum syndrome. All because Bailey has gained weight he didnt fit the 'struggling to thrive' profile. This is all becase im literally spend my day constantly offering him milk and food so he doesnt loose weight. If I left it to him he would gladly go without. Once at the GP he diagnosed him with reflux and lactose intollerance and kept playing around with meds and formulas for a month until I asked to be referred to a paeditrician. This guy did put bailey on the right meds and I sugested Neocate (as mentioned on here). He terme bailey as a GERD sufferer but tried to tell us that he has sepration anxiety at night, night terrors and car phobia. All of this I said wasnt true and that my son was in pain. As soon as he got the right doses of ranit and omep and the neocate big postive changes. Then he sends me off for 3 months seeing a speech pathologist and no improvements. Now we wait to see if the hospital consider him urgent enough to see him sooner than later. In the meantime this child is hungry and im so fearful of him developing a behaviour with milk that if not seen to quickly enough we will have a hard time getting him to take solids. I believe the hospital is going to run a swallowing test for him. On top of all this I have a husband that is not totally onboard. He wont admit anything is wrong with bailey as says he doesnt want bailey to become a hypercondriact if we keep labelling him with things. Dont get me wrong my husband is a great husband and excellent father but his ignorance to this health condition is no support to me. It doesnt help that hes always been very healthy so he doesnt realise ppl get things its no big deal. Also he has his mum tell him bailey wont eat solids because i give him too much milk and I need to starve him a bit and hell be hungry enough to take solids. There have been many times hes gone a long time (maybe due to a nap in the way) without food and yet he still wont take solids. Its just upsetting and frustrating cause I feel alone. Does anyone frequent any websites that really give good detail advic and understanding about GERD rather than simple 'sypmtoms' etc and general explaination. I need to start understanding how to work with bailey to do the best for him and have a chance at a normal life like be able to go out sometimes with him.I need to know the limit like how far he can get upset and distressed before its not good for him so I can have more confidence to go out and do shopping or go to macdonalds and have him sit in a highchair (well i can dream cant i)
Mar 31, 2012
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'm glad things have improved somewhat! I strongly encourage you to look into Sensory Processing Disorder (SPD, also known as SID, or Sensory Integration Disorder). No one knows for sure if reflux can result from having SPD or if SPD results from having reflux, but it is not at all uncommon for babies with GERD to also have SPD.

Here are some resources for you:

www.sensory-processing-disorder.com This site has a wealth of information about SPD, but I suggest that you first go to "Helping Baby Sleep" in the menu on the left, then scroll down until you find "The Infant/Toddler SPD Checklist." This is a survey of symptoms to help you determine if your little one shows a significant number of symptoms of a baby with SPD.

"The Out of Sync Child" by Karol Stock Kranowitz is one of the most complete and accessible books about SPD.

SPD is still not widely recognized by physicians (or insurance companies...), but there is help available. There are Occupational Therapies as well as alternative therapies which can be immensely helpful. The earlier it is recognized the better. Feel free to email me at cristina@mothersupportnetwork.com if you need more information or just want to talk about it.

Apr 01, 2012
baileys mama
Hi Cristina, thanks so much for your help again, ive emailed you privately :-)
Apr 02, 2012
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 didn't receive an email...just in case it either got filtered to the junk box or lost in cyber-space, can you send it again? The best address is cristina@mothersupportnetwork.com
Apr 03, 2012
baileys mama
Hey Cristina, thanks for letting me know, I just tried resending the email. I hope you get it this time
Jun 13, 2012
mommyof6
Hi Bailey's mama, I really feel for you. Good luck on this journey of finding more help for your Bailey. So happy to hear there has been some improvement. My post pertains more to Lorenzomama but you may find it interesting as well. Hi Lorenzomama, you know me from the apnea website and we've spoken privately. I wanted to add something to what you said to baileys mama.. What I've found out is (in my family) Is that there is a neurological component to low muscle tone and it can be genetic and it is that that can lead to GERD or reflux or all sorts of stuff. This runs in my husband's family. Very often even slightly lower tone (like we have) will result in a weak sphincter muscle (which closes the bottom of the esophogus (I think)) and therefore begins infancy with a loose seal and allows acid to climb up to the throat and even the ears and sinuses. Now I've also learned that the gut and ears are very connected to sensory as they talk back and forth i.e. acid shooting up and down..it crosses over the nervous system? nervous vein? whatever it is and send sensory into overdrive. When the gut AND ears are addressed acurately whatever the problem may be I and teachers have seen HUGE improvement in concentration, seeking behaviors and fidgets... Was fascinated to learn these connects and thought you might be as well
Check with your
doctor first!