Posted By Posting
Jul 21, 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.
Finally
Well folks. I think we have our FTT diagnosis. Not quite, but almost. Coyle weighed in at the GI appt. at 15 pounds 9 ounces. He's less than 26 inches long by their measurement as well. He is no where near where he should be. Like negative percentile. I've tried everything to get him to gain. I'm at a loss here.

An intern and a medical student walked in explaining that they would start and then Dr. would finish up. I explained that Coy had his first PT appt. @ five so they went to get him since we didn't really have time to spare at 4:45 p.m.! Apparatnely though, the doc was late coming in to our appointment because he was consulting with the endocrinologist on how to proceed with Coy. He took one look at his chart and concluded that his growth isn't what it should be. haven't I been saying that PEOPLE!! Finally someone listens. So, I'm waiting for them to schedule a barium swallow and depending on those results he many need a scope as well. Anyone offer advice/info on a Barium? Anyone had any blood tests for endo problems?

I'm so scared. I hate to admit it, but I am. I've wanted some more testing for him because I'm so concerned. However, he fell on the dishwasher and cut his gum a couple of days ago and I almost passed out. Seriously. I had to get the neighbor to check him out. I have a horrible fear of death/pain happening to my loved ones (and me) due to a tramautic even that happened when I was very young. My husband, the 'MAN' that his law enforcement butt is can't understand nor offer empathy... thinks i should just 'tough' it out.

Coy also started Pt this evening. He pulls up using both legs when he should in fact bend one knee first. he also stands on his toes and his range of motion for his ankles is poor. We have to go 2X week and to exercises at home. He also crawls with his arms turned in but she won't address that until his appt. on Wed. When he begins walking he will probably need braces.

I got a Jury notice in the mail today too. Of course!!! I'm going to use his medical issues as a request for excusal. Wish me luck please!

thanks for listening.
Jul 21, 2008
katiesmommy
Tracey, mom to Katie diagnosed with GERD at 3 week.
Hi Mom2Coy! Isn't it great when they finally listen to you?! Katie stopped gaining weight at 6 months and they just kept telling me that babies gain weight differently and to not worry. We weighted her at one point and according to our scale vs. the drs. she had actually lost weight. When she had only gained a few ounces in over 2 months her dr. told me he was concerned but since she wasn't underweight he wasn't concerned. Well thank God she was born big! I finally got fed up one night after holding my sleeping arching wimpering baby and asked for the referral. They haven't found out why she got worse with solids or why her reflux was not being controlled on over 75 mg of Zantac a day (man that seems high as I type it!) but they are at least doing something now. We had the barium swallow and lots of blood work done over the last couple of weeks. One of the hardest parts for Katie of the Barium swallow was my husband was the one holding her as they prefer dads over moms in there and I gave him a large flow nipple and she had the barium POURING into her mouth. We tried the large flow twice since we thicken her already thick formula thinking that she wouldn't have to suck as hard but she hated how quickly she got formula so we abandoned them. Anyways, since she is not used to that nipple she screamed and wouldn't really suck on the nipple but they got just enough down her for the test. Of course she threw up everything that day and even threw up when she hadn't eaten. It was a day that she actually wanted to eat too! The blood test didn't reveal anything for us other than her blood count was off. They retested and it was still off (high WBC) but not as badly so we are waiting for a follow up. Katie is still refluxing daily and is still throwing up daily if not every other day so we are not done trying to figure out what is causing her reflux as she did not test positive to anything. Suspected that rice made reflux worse and took Melissa's advice (Bassy's mom) and removed oats as well. She is still throwing up but seems to feel better. My dh doesn't understand why I want to know why she is sick either and just wants me to let it go. He doesn't understand that I don't want to think that everything is ok until she gets really sick and we find out (again) that the medicine isn't controlling her reflux. I think it has to do with ignoring everything but killing the wildebeast to take home to the family. If they have to concentrate on pain at home they can't take care of themselves to provide for the family and since your husband is in law enforcement it may be too much to handle. It is for my husband and the only threat to his life is me! :) I'm sure you are scared of what they will or almost even worse what they won't find? I'm there now. I want my baby well and I want to know why she won't eat or when she will eat why she throws it up. How was his hypertonia diagnosed? Katie stands on her toes also and when you draw your finger along her sole her toes flex but her big toes go straight and stick up. I think that sometimes I pay too much attention to her cause when I notice one thing it gets me worked up! ;P They did all the blood/stool/urine test and they all came back negative as did the barium swallow.
Jul 22, 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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you have a lot on your plate! I hope that PT goes well, i know it has really helped Aubrey recently. it is hard to add in PT exercises to everything else you have to do on a daily basis. i am so sorry they are looking at FTT. I think Elyse's reflux got a lot better at 10 months adjusted (so one year). it was like the faucet turned off, literally. I think Halley was the same way. Elyse rarely pukes now. We went 3 weeks until just the other day (and she had spit out her Zantac that morning). Maybe Coyle will be the same way. Her solids were pretty limited until a little over 12 months bc she couldn't handle anything more than certain fruits/vegs and cheerios. When they start tolerating dairy and soy it is like a whole world opens up! Much love to you and Coy. I will be thinking of you and hoping that everything gets figured out soon!

Tracey, maybe Katie will turn out to be like Elyse....the ONLY thing that helped her reflux was time. We did all the tests and tried all the meds and she still puked a bazillion times a day and spit up even more often and barely ate. We would get a bottle in her,she would puke up what looked like the whole thing, then we would start over again a couple hours later. When she started solids something that seemed to lessen the puking was we would give solids first, then wait an hour for a bottle so it had something to "land" on. We also waited because she would immediately barf if we did solids and bottle too close together, if she would even take both. i wouldn't go back and change anything about the tests that we did or the meds or anything, because we needed to do it for peace of mind, but in our experience we just had to wait it out. :( and do LOTS of laundry. and get new carpet :(

Jul 22, 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
I'm sorry things have been so rough, but I am so glad that things are finally getting looked at. My niece has a chromo abnormality. She has turner's syndrome. She only has one X chromo. She is tiny. She has been on growth hormones for a few months now and is really starting to grow, still tiny though, she is 20mo and wears 3-6mo clothes weighs about 19lbs and us 30in. This is only a female disorder, but there is a male version that is similar, can't remember what it is called though. Anyway, no one can tell that there is a thing wring with her, they just think she's little. She's perfect to us all. Hopefully it will be nothing for Coy and he will catch up soon. Cooper had the barium at 5 days and 2 months and did great, just made him a little constipated. Not sure how he would do now. It is better if they are hungry b/c then they will want to take the bottle. We also took the bottle he was used to, that way it wasn't something new to drink in a new bottle. I hope it goes well. Hugs.
Jul 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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It sucks that they have to wait for them to actually fall off the growth charts to actually do anything, when you have been knowing all along that something was wrong. it sounds like, though that the doctors are going to start being proactive. About the size of him, does he throw up ALOT? Because if not, then it might not be GERD that is contributing to his small size. Quinn has never been to an endocrinologist. She grows appropriately if she stays on her g-tube feeds. I must have missed an update from you guys, but what is going on with PT? why did he start? So sorry I have been out of the loop. I hope that the doctors are able to help lil Coy out. -Sarah
Jul 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.
Katies Mom. It is almost like we want the doctors to tell us that nothing is wrong and "stop worrying" but we also want someone to tell us that we're not crazy!! On some scales he has lost weight since he was 15 12 ounces at the allergist.. and he's also shrunk (lol) because of how different people measure him. Either way, he's just not getting bigger. We're all hoping that genetically he just takes after his father. My husband is so fit.. and he seriously eats like a pig but he does exercise. thanks for the info on the barium. i'm not looking forward to it. i'll be sure to bring his regular bottles. hope you get some answers soon as well

his hypertonia was diagnosed by a neurologist. he's been tight since birth but again.. nobody listened until i pressed the pedi @ 9 mo. to send us to a neuro due to some 'staring spells' he was having as well. you should ask for a referal to a neuro. hi sEEG was normal but those can be inaccurate.

sharon-i too hope that his reflux will get better @ a year. i know how much trouble everyone here has had with solids so it amazes me that docs think it will make it so much better! what we wouldn't do w/o cherrios! he just loves them.. not much else. thanks for thinking of us!

Molly. thanks for the info on the abnormality. when coy was born he had his chromosomes tested.. he's a straight XY so we shouldnt have issues there. i'm sorr your niece struggles with turners but i'm glad that the hormone therapy is helping her to grow. everyone always looks at me oddly when i tell them that coyle is 10 months old. i think i'm going to start lying :)

sarah- i know. my husband thinks that they have to wait so they don't "waste our time" and be sure that there is an issue. i jsut don't get it. anyways, he does not vomit much anymore since he has been on alimentum (aside from that yogurt intro of course). his reflux is mostly "silent"-the most painful kind in my opinion.. so imho the poor/slow weight gain is not due to the GERD...see above for the info on the PT. I'm hoping that it will improve his tone. He may have to wear a brace when he starts walking but otherwise the prognosis looks good...

thanks everyone!
Jul 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.... :(
Kelly, I am so sorry you are going through this with your son. I am hoping I have some silver linings for you, though. It's worth a try! First, for the first month and a half that he was standing, Sebastian stood on his toes ALL THE TIME...so much tta I got worried. But then he just eventually stopped doing it...and now he is walking (sometimes...a few steps here and there, and then kaput!). Didn't hurt him at all. Second, my husband is in super great shape (jerk was never heavy, but he lost 20 pounds when I was pregnant because he worked out like a fiend while I got huge) and he runs,plays basketball and club soccer, jumps rope, lifts weight, etc. He was a sprinter in high school. He wore braces on both legs as a kid. You'd NEVER know it now. Third, my good friend Johanna had her daughter Brooklynn six weeks early. Brooklynn was 3 lbs 13 oz at birth and just had her 1-year birthday part on July 13th. She is 27 inches and 16 pounds. She is TINY, but she is perfect and getting better all the time. She pulls to standing all the time, and she used to do it with both legs COMPLETELY STRAIGHT...I have witnessed it via photo! If your PT person is telling you after ONE appt that Coy might need braces on his legs, you might need to see a new PT. That's a pretty quick diagnosis!

I would really, really, REALLY like you to consider flyingor driving out to Hopkins so Coy can see Dr. Wood. This man laid to rest all of the anxiety and stress I have been carrying aroun for nearly 10 months. He is wonderful...there is a reason he is known as the #1 allergist in the country. Seriously, he can help you. I am going to post soon about his advice/diagnosis for us. Andif it helps, he thinks our GI is a moron....and they are colleagues. Gotta love that!

Sebastian had a barium swallow in February and honestly, he did fine. Our problem was that no one warned us it would cause severe constipation, so I ended up with a screaming child with a bloody butt. It was terrible. Give Coy extra fluids in advance...I wish I had known to do so. I'd also consider having a suppository or some Miralax on hand. Sebastian screamed so hard trying to poop that he popped blood vessels in both his eyes and across his forehead.

And if it makes you feel any better, Sebastian isn't waving hello yet! Your little man is advanced!!!!
Jul 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.
Melissa. Thank you Thank you Thank you!! for takign the time to post to me about this. You made me feel sooo much better! I've talked to a few frineds who've said that their kids stood on tip toe. In fact my brother did! The the neuro was more concerned with the tightness in his ankles so atleast with PT we can learn some stretching exercises. He also crawls with his arms turned it sometimes. And, when i'm giving him a bottle his arms are so stiff that i have to physically move them so he's not pushing into my body. That being said, maybe the PT will loosen him up. When he turns one I'm gonna take him to a chiro as well.

good to know that she is tiny as well. well, you know what i mean. in fact, i saw a little 14 mo. old @ the waterpark this past Thursday and I actually thought he was coy's age. I was so surprised to see another tiny one like mine. I think I'll go thru with the bloodwork and the barrium and see how goes it from there. i'll discuss all this info. with our doc in 6 weeks at his follow up. if all those tests show nothing i'd prefer to assume the best and go with my kid takes after his daddy... he did mention a scope but i'm reluctant for that right now unless solids don't get better @ 13 mo... he did mention EE/EOS for us as well and as you know you can only scope for that!

i'm sooooo super excited to read your update. gonna check now. as far as coming out there i'd have no idea how that would work with insurance. but i supposed it doesnt hurt to ask. remember we were supposed to come last mo (my dh best friend of 20+ years lives there now) but we cancelled due to weather.

i think both of our kiddos are advanced in there own way. sebastian is walking!! coyle is not but he's doin other things.

i hate being a paranoid person.
Check with your
doctor first!