Posted By Posting
Aug 08, 2008
Tracey, mom to Katie diagnosed with GERD at 3 week.
Katie's GI appt.

Where to start? She has LOST weight since her last appointment even though she is throwing up less, is off of solids and I completely stopped b/f so she doesn't have my food to throw her off balance. She is still refluxing pretty heavily and throwing up every couple of days. Since she hasn't gained weight they can't increase Prevacid and told me that Mylanta will make her electrolytes off balanced so they want me to try Myclon (sp?) if she needs that. She is going to be scoped the first week of September and they are referring her to Neurologist and Genectist (I spelled it correctly earlier) to check for mitrochondrial abnormalities. Her GI is concerned that at almost 10 mos. she stands on her toes and can't put herself into a seated position. She also wants us to try Elecare even though dh is is corn intollerant to see if it helps.

Funny thing is I was concerned that since Katie has been in a better mood during the day she (GI) wouldn't believe that this kid is still really sick; guess I don't have to add THAT to my list of things to worry about! Maybe now people will stop telling me to just try to give her yogurt or Similac AR (rice was the biggest puking item) since she is now seeing 2 new specialist!

That which does not kill you will make you run naked through the streets screaming and pulling your hair out. That is the quote right?? :P

Aug 08, 2008
BRANDON-Zantac and Bethanacol; Neocate formula, 2 sets of ear tubes, Adnoids removed, Vasomotor Rhinits, Asthma. Currently on: Xyzal, Omnaris, Flovent and Xopenex,
AUBREY-Zegerid 2x a day, Soy Milk, Tubes put in and adnoids removed (11-7), Hypotonia, ECI therapy for low muscle tone throughout trunk and hips, oral motor issues and sensory integration issues, delayed speech, Teething, probiotics
PICTURE: Aubrey in her cute cat outfit. If you look you can see how her right foot turns in. She walks that way as well. It is not as exaggerated in the morning's but gets worse in the evenings. This was after her nap.
My ds stands on his toes. Our therapist has him do calf stretches b/c his muscles were tight. Have you thought about starting there? Aubrey also had trouble getting herself into a seated position and therapy helped that as well. Just a thought but always good to rule things out!

The quote sounds right to me! I might try that soon! I saw a t-shirt the other day that said "When life gives you lemons pull out the tequilla and salt." LMAO!!!

Aug 08, 2008
Worry Wart mom to
27 mo. reformed "happy spitter"
34.8lbs , 37in tall(oct)
Diagnosed A/R at 6 wks
Zantac until 1yr then Prevacid
Med free since February 08
peanut & egg allergies...still
Zoo Boo Trick-or-Treating (pic).
Sorry that your LO has to have more tests. Even as badly as you want answers, I hope they don't find anything. My brother was a tip-toe kid. He had to do exercises as a toddler. He complained to high heaven too! He was dx as mild CP but that didn't stop him from being a naturally gifted athlete (seems contradictory, I know). He went bowling for one of the first times with me when he was 17 and bowled all the games in the 200's. Joined a league and had a 190 ave. immediately (hate him for that, lol). Went golfing for the first time with the pros (ha), my dad and brother, and beat them both. Started on offense and defense on the football team in high school. Just wanted to throw that in there. Is she in PT? Maybe that would help her?
Aug 08, 2008
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
Wow, an eventful appointment. Hopefully you'll be on your way to some answers soon. I hope the doctor didn't say Mylicon - I felt it was basically useless. I can't remember what dosage of Prevacid she's on and whether it's solutabs or compound - can you please remind me?
Aug 08, 2008
Picture: This is what happens when you raise a kid on health food and they get ahold of a Coke! Bad mom, that soda is NOT on the reflux diet.
UPDATE: Isaiah is now 12 and off meds! He is doing great, eating again and hopefully will be catching up in the growing department. I am still in the "hoping it sticks" phase, but we're so happy that he's better!
Argh, what a mess! I agree about the running naked down the street comment. Sadly, that just adds a ticket for indecent exposure to the troubles! Sigh. Hopefully, there is nothing wrong except that the reflux has caused her some issues with's hard to learn try new things when your tummy hurts, I would imagine! My son walks on tiptoe, in fact all 3 kids have that problem. Sometimes this can be due to a neurological problem, but sometimes it's because of sensory integration problems. We just got him some really stiff shoes and we remind the kids to walk flat...but if they are barefoot and on a textured surface they really won't put their feet down flat if they can help it! The calf excersizes are a good idea, my dh was a tiptoe walker and now he gets lower leg pain if he stands for a long time. I hope that things improve quickly for Katie, we'll pray for no further problems and the speedy resolution of the reflux!
Aug 08, 2008
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
When kids are learning to walk, they often stand on their toes. there is a certain age (don't know what it is!!) where they should stop or neuro problems become a concern (as someone else said). Elyse cannot tolerate corn or corn products but she is fine on elecare. She also did not tolerate soy for a loooong time (like within the last 6 wks it seems like is when she could, because I know she couldn't when she turned one 2 mos ago) and again could do elecare (it has soy oil). Sorry to hear about the weight loss and glad someone is referring her on...
Aug 08, 2008
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.
Hi Tracey. Sorry to hear this. What is her weight now? I didn't know that she has a problem with weight gain. I'm sorry she is refluxing so badly. poor baby. Mylicon is for gas I thought. I'm surprised they told you no mylanta-our GI (the director @ the children's hospital) is fine with 5 ML daily. It's over the counter so you can always give it a try. what does her pedi think?

We see GI again the 1st week of Sept. to discuss a scope as well. I'll be thinking of her and you when she has her done. Where do you go for this?
coy's hypertonia was diagnosed by a neuro. they are the best ones to tell you if it is a "tone" issue or not. This is what led us to PT for coyle. Standing on toes is not in and of itself a problems as i've talked to many, many people who said their kids stood on their toes when 1st learning to stand. coy has many other issues (right side dominant, toes curled under, tight ankles, pulls up incorrectly, etc. ) aside from just standing on his toes.

i wish u luck and you'll be in my thoughts. i've done loads of reading on mito and have learned the the testing procedure is quite arduous. Why are they thinking mito? I like this site:

love ur quote..
Aug 08, 2008
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 am sorry you have had such a rough time. I am also sorry I never replied about the chiro like I said I would. I am going to post this tonight. So sorry. I would say it is certainly worth a try. I hope everything is normal as far as dna goes. We will be praying for you guys.
Aug 09, 2008
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.... :(
Hi Tracey. could be from pulling the food (the weight, I mean). Sebastian has always been a big gainer, and when I took him to the ENT yesterday (and ped on Wednesday), he had gained only 12 ounces in six weeks! For us, that was strange. Maybe the food was adding more calories than we (and you?) thought?

I've never heard that about Mylanta, but then again, I don't know a ton about it. I just thought it could give kids crmaps and diarrhea in larger doses...

I wouldn't take developmental advice from the GI! Sebastian used ot stand on his toes all the time when he was practicing standing. I never thought twice about it until Coy's mom expressed concern over Coy doing it. But once his footing became more sure, the tip-toe standing stopped. I am thinking it probably will for Katie, too.

And yes, I believe that is the correct quote!!
Aug 09, 2008
mom to 4 kids with probable
Mitochondrial Disease
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
Connective Tissue Disorder,
Visceral Hyperalgesia, and more
Many meds
HI! I am sorry Katie has lost weight.:( (((HUGS))) It sounds like her dr is being very thorough in her treatment, sending her to be further evaluated for mito/metabolic issues is a good thing. It is much better to have doctors that look into every possibility than to be blown off like nothing is wrong as unfortunately happens to a lot of parents.(thankfully I can only say excellent things about Brent's team of dr.s)Hopefully everything will turn out okay, it's also a good thing she is getting a scope done soon. As far as prevacid dosing, Brent was on 60 mg from 6/7 months old,out of curiosity, what dose is she on that you cant increase? You could also add Zantac or Axid in with the prevacid...
Aug 09, 2008
Tracey, mom to Katie diagnosed with GERD at 3 week.
Hi Jessicalynn! She can't have Zantac b/c it gave her migraines. We started out with the suspension Prevaid at 9 mg then switched to solutabs b/c suspension goes bad to quickly. She is on 3/4 of a 15 mg tablet; so it's like 11.25 if the tablet splits correctly. We were giving her the whole 15 mg. and she was refluxing worse so we dropped it back down. She is 17.4 lbs. (7.84 kilos for our Canadian friends). I posted a new comment entitled Katie since everyone had some good comments/questions.
Check with your
doctor first!