Posted By Posting
Sep 25, 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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OT-Elyse's high risk clinic...mostly good, but a little scary
Well, Elyse had a 2-hour appt today at the hospital. She was seen by one dr for developmental testing. She looked at Elyse's cognitive and motor skills. Elyse's adjusted age is 13 (almost 14) months, and her cognition was nearly 15 mos. YAY! Motor skills fell right at 13 mos...she was a little behind in gross motor but way ahead in fine motor so it evened out.

The scary part was when the neonatologist saw her. He said her fontanelle is supposed to be closed and it is not. Her head circumferance is off the charts huge, when it has been steady her whole life. Since the last time they saw her (6 mos ago) her head size has grown alarmingly quickly. He is going to look at her again in 6 mos, with the pediatrician watching her along the way. I feel sick. I don't know if I should call him to ask him to check her before her next appt (3 mos away) or if I should wait until she goes in then. I should have asked the dr who saw her today but I was in shock. I am a mommy who knows too much and looks on the internet too much. Elyse was seen by the pedi a week ago and he didn't say anything, so I am now wondering if their measurement was wrong??? The nurse today measured twice because she thought she got it wrong when she charted it.

So after all the good news, that one got thrown in...I just feel soooo sick about it.

Sep 25, 2008
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
I would go see your ped. just to get his take on it and maybe get some questions answered that you weren't able to ask the doc.
Sep 25, 2008
amber f
I have an lo at daycare that has the same thing going on. I'm so concerned he will fall and break open his softspot or puncture it. When is it suppose to be fully closed? He has a 2 inch gap from the top of his head down to almost his eyes.

Sorry to ask you a bunch of ?s but I'm curious and thought you might know. I'd go and ask the ped and make them measure it so you have a second opinion on it.

Sep 25, 2008
katiesmommy
Tracey, mom to Katie. Diagnosed with reflux at 3 weeks and put on Zantac. At 8 months old she was removed from Zantac as it was giving her migraines, currently on Prevacid. Switched to Elecare since she is not gaining weight; trialing solids after being off for a month. Geneticist said reason she isn't gaining weight is she is stubborn. Upcoming appts.: Neurologist for developmental delay and EGD scheduled for September. She is one funny baby!
Dr. Sears says 18 months is not unheard of to have to start closing.
Sep 25, 2008
daniejo
Mom (Danie) to Adam (9-4-03) & Nate (3-7-07) Nate was diagnosed with silent AR at 2 months old. He was on neocate, prevacid 30mg per day and couldn't start solids till he was almost 8 months old. He started cow's milk at 14 months and is currently off all meds!! So far so good :) PIC: Disney trip 2008. Nate didn't know Piglet was there, he didn't like the characters too much.
I would just put a call in to the ped...just to keep them on the front page. I am sure that if you want to go in for them to check it (earlier) there would be no problem...it will also ease your mind a little. I am glad she was ahead in her fine motor skills!!
Sep 26, 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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AMber, i did a little research....2 INCHES on that LO? From what I read tonight (very little) it should be about 3/4 inch which I think is what Elyse's feels like.

Tracey, i just checked online to see about the timeframe (thanks by the way) and normal can be as late as 2 years, average is about a year! I guess the fact that it is still open COUPLED with the huge change in size was the worrisome part to the dr.

Thanks everyone else too...i will call the pedi tomorrow and just let him know the concern and see if he wants to see her earlier or anything. The fact that her development is so on track now leads me to believe she is fine...but when one of the dr's who saved your lo's life is concerned, it makes a mama worry!

Sep 26, 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.
thinking of you as always. i hope this is nothing at all. i would call the pedi tho just to be sure they know what is going on.
Sep 26, 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.... :(
Hey Sharon. Yay for the development! You have obviously doen an amazing job with her! That's so scary about her head. I wonder why that is happening? I hope it is nothing at all beyond she has a huge brain because she is sooooooo smart.
Sep 26, 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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My philosophy on stuff like that is 'Don't worry until you have to worry'. Many kids grow fast and many kids have heads that grow fast. Quinn's fontanel didn't close up until later. It is always good to err on the side of caution, but try not to worry too much. Wonderful news, otherwise, though! -Sarah
Check with your
doctor first!