Adam was born small (5lb, 13 oz) and swallowed some meconium during birth but did not aspirate. He was term and healthy, good apgars (9/9) but had an undescended left testicle which was repaired just before his first birthday. He never ate well but kept to his 3rd percentile or just under for weight with much effort on my part. He was always around 30th percentile for height, so indeed underweight. At every visit to the pediatrician, I mentioned that his eating and his weight were concerns. He met all his milestones but on the late side of normal until his 9 month visit when he was beginning to teethe. This is when he began to refuse food. When I asked specifically about teething and the possibility of reflux, the doc told me that he does not have reflux. (No vomiting or any of the obvious signs) and he said "and Ma'am, I've never seen a child TEETHE himself into Failure to thrive". Then he left the room. Exam over, Mom's at blame and our 10 minutes was up. (Note, I have since read that teething can and does make reflux worse). Over time, Adam became worse, harder to feed, orally defensive and speech delayed. I was always given advice on what and how to feed him, some blood and urine tests were done and I think it was just assumed that Mom was doing something wrong.

He began Speech Therapy, OT and special ed through Early Intervention when he was around 20 months old. At that time, his oral defensiveness was extreme, his meals were taking over an hour and his speech was pretty severely delayed. Once I started feeding him in front of the TV (in addition to giving him toys to distract him), I was able to get him to eat a little bit more and this finally triggered some obvious symptoms of reflux. He was coughing toward the end of each meal and began vomiting almost daily. At that time (20 or 21 mos) we were at last given a script for Zantac and a referral to a Pediatric GI doc who confirmed reflux. His eating got a little better and the symptoms disappeared within days of starting the Zantac.

However, he was still not eating enough, still orally defensive to the extreme and not using his mouth for speaking. His trunk muscles were weak and he did not relate to the world around him much. His docs and Early Intervention therapists were thinking apraxia, autism spectrum disorder, pervasive development disorder, SID etc etc. Meanwhile, mealtimes were 90 minutes long and I was adding olive oil to all his baby food and he was still unable to eat anything but purees and still not gaining weight.

I took Adam to St Josephs feeding and swallowing center in Patterson, NJ. when he was 2 1/2, They diagnosed him with reflux that was under-treated and delayed gastric emptying. His Zantac dosage was almost doubled and we started milk of magnesia for the DGE. After one month on these meds, his oral defensiveness was almost gone, he was talking more, relating to his surroundings more, and he gained 2 pounds!! We started him on Periactin to stimulate his appetite and his weight went to the 10th percentile for the first time in his life. It was taking only 40 minutes to feed him a meal. The feeding center also said that his trunk and scapula were weak. The weakness in his trunk and scapula are symptomatic of reflux – the pain of reflux causes sufferers not to want to move around as much so these muscles don’t develop as they should. Same with the speech delay. The doc at the feeding center explained to me that when a child is suffering from this condition, its how we would feel when just beginning to recover from a bad stomach virus – no desire to use trunk and arm muscles, no desire to eat much, no desire to interact with the world around us. So we started doing activities to help him with this - lifting, pushing, pulling.

We couldnt get past his oral defensiveness though. It is necessary for him to open his mouth wide enough to get the whole spoon in - his tongue was in a "protective posture" - he was raising it to form a hill to prevent the spoon from going in. I tried and tried but just couldnt get him to open his mouth for the spoon - I was just sliding it in when his lips cracked a little. So at last, the feeding center admitted him to their "day treatment program". 5 days a week, 8 hours a day of feeding therapy, PT, OT. He is just a different child after his first 3 weeks there. He's opening his mouth nice and wide and he advanced to fork-mashed foods and chewable foods already! His fear of the spoon is gone, his fear of food is almost gone. His speech is improving dramatically as he learns how to use his mouth and tongue. He's had more improvement in the past 3 weeks than he's had in over a year and a half with the EI therapists. We still have a way to go but for the first time in 3 years I can picture a family dinner at the dinner table.

So thats my Adam (aka "Oopie Doo")

This is exactly the reason for my book! Wow if only your doctors had been smart enough to listen to you and treat his reflux in the beginning I bet none of this would have happened :evil: ! You must be so frustrated!!

Congrats on the finding the wonderful feeding clinic!! That's what I like to hear!

Why is it that these doctors won't listen? Do they really think that their PhDs give them more knowledge about our kids than our own experiences living with them and our own "mother's intuition"? It's soooo frustrating!!!

I always learn so much from your postings, Phyllis. Our experiences seem to have a lot of similarities, and with Adam being a bit older than Evan, you have just finished going through a lot of what we are now experiencing. You wrote that: "The weakness in his trunk and scapula are symptomatic of reflux – the pain of reflux causes sufferers not to want to move around as much so these muscles don’t develop as they should. Same with the speech delay[...] no desire to use trunk and arm muscles, no desire to eat much, no desire to interact with the world around us." That just seems to make so much sense. None of the doctors or the physiotherapist have ever been able to help us understand why Evan has such low muscle tone in his trunk, not to mention the fact that he only has a few sounds, but mainly communicates through whining, pointing and facial expressions. He does even remember all of the signs I've been showing him. Thanks so much for helping me to make sense out of the low muscle tone. With exercise it should improve, right? Also, what is the scapula?

Hi Janette, Its so good to know that my posting has helped a bit! The parents need to stick together when the docs dont seem to be on our side!

The scapula is on your upper back, its the "chicken wings". To get Adam better with trunk and scapula, the OTs have him do pushing, pulling and lifting activities. They make it fun so he doesnt mind it much. At home, we have a beamed ceiling so we hung a metal loop on it and put a rope thru. Then tied a heavy Elmo doll with a 1 pound weight attached to him on one end. Adam takes the plain end of the rope and hauls Elmo up into the air. Thats a really fun one for him. Barrel walking is another good one - hold him by the tummy and legs and have him walk on his hands. At first, Adam could only do 2 or 3 walks with his hands before his arms gave out, now he can go all the way across the room. He had a "Little Gym" class a while back that was really great - lots of bars to hang on. The OTs also try to get him to reach across - reflux kids dont like to cross their "midline" meaning that they tend to stay upright and dont lean over or reach very far. We got a huge pad of paper, its 3 feet by 4 feet and try to get him to color with a crayon all over the paper. He used to switch hands to get to the other side but he'll occasionally now reach over. At the feeding center, they just added PT for his mouth. He HATES that! But the muscles around his nose and mouth are so very tight that its impeding both eating and speaking. So they put thumbs under his top lip and gently pull, pull pull down and stretch his muscles. First straight down and then kind of sideways to stretch his cheeks. After each session, its really noticeable that it made a difference. He opens his mouth so much easier for the spoon and he talk alot more. He didnt want to nap at naptime there so he sat there on his cot saying "Ah sh*t!" How embarrassing!! My dear hubby didnt think he'd be picking that up yet! Lol!

I hope this is helpful too! Take care

Phyllis

It is helpful. We'll have to try the wheel barrow later today. Evan doesn't seem to fit all of the specialists' ideas and rules of what reflux should look like. For example, he loves to be bounced when he's feeling sick and he has absolutely no problem bending over forward. In fact, he's so flexible that when you're holding him at the waist, he often leans down so far that his head is nearly touching the floor.

It's so hard to get his weight to come close to matching his height. He's usually near the 90th or 95th percentile for height, but was around the 10th percentile for weight for a long time. We've now got the weight fluctuating between 25th and 50th percentile, but it doesn't usually seem to stay near the 50th percentile for long at a time, Part of it is probably genetic, I keep telling myself, because my dad is tall and thin, so Evan will probably always be tall and thin.

OMG! I can't believe the Dr. actually said "I've never seen a child TEETHE himself into Failure to thrive" :evil:
How awful!! What a jerk!! And to think that it is partially this Dr's fault that your family has been thru WAY more than you probably would have been if he would have just listened to you in the beginning rather than making rude unnecessary comments! Grrr...
By the way, my sons reflux gets worse every time he starts to cut a new tooth also. He begins gagging and vomiting more whenever one is starting to push it's way thru.