Reflux with Seizure like Movements

Hi S.. It looks like you've received some good advice. I have a friend that had a child who suffered from reflux. After trying everything with no success, she put him on a supplement called OPC-3 and within a few weeks, the reflux was gone. It might be worth a try.

B.

S. - Wow! You guys have been through a lot. And kept up the nursing, too. Good for you! I am a lactation consultant and I have been a maternal-child health nurse for 25 years. That being said - you are right on when you asked for a name of a good pediatric gastroenterologist. I don't know where you live, but your your pediatrician should be referring you to the local children's hospital. Uusally, it takes a few months to get in to see a specialist like that - unless your doctor can pull some strings. You can look up your local children's hospital's website and check for the specialist yourself, but usually need your ped's referral and sometimes insurance approval, too. Based on other things you describe - and cases I can recall from the past, I think your little one has bad reflux and may be experiencing some aspiration. Has she ever had a pneumocardiogram (sleep study) with a pH probe? An upper GI? A test for gastric empyting? (type of CT scan that sees how long her stomach contents takes to empty) These are some of the tests they do to see how bad things are. You are right to worry about her weight gain and the specialist will focus in on that. Just a warning, they might focus on your breast feeding, too, and want you to stop. (at least the children's hospital I worked at was not so supportive of breast feeding in the older child) I hope you can get in soon - good luck!

S.,
I had very much the similar experiences as you did with my daughter from the time I brought her home from the hospital. She never ever was able to really rest and I had a job to go to. When I remember back I don't know how my family got through that trying time. Our doctor never experienced the seizure like movements but she did have them pretty often. It was scary and I begged anyone to help us. After a while I felt that she was having a reflux problem and passed my thoughts on to the dr. and his nurses. At about 3 months I on my own quit breast feeding and put her on Carnation formulas because I have done some research and found that it was broken down for babies and wasn't as heard for their digestive systems as formula and breast milk. So I wrote to Carnation and obtained some coupons and tried it out. It helped so much and we saw a big difference and then when my daughter was 15 months old we switched her over to whole milk. When she was younger the dr. gave her milicon drops but that didn't do anything to help. When she was 23 months old, my doctor finally put her through a series of tests along with an upper GI and found that her stomach and throat had a huge amount of acid lying in it. He immediately put her on Protonix which has been a huge and I mean huge lifesaver for her. She is now 15 years old and continues to take Protonix four times a day. She still experiences reflux pains now and then but it looks like she always will.

I hope this helps you.
S.
____@____.com

Hi, My daughter was diagnosed with acid reflux at a very young age. We went through 3 different medicines in conjunction with mylanta and soy formula. I would say it finally subsided when she was close to 16 mos, when she was walking.

We didn't feed her anything acidic and made most of her baby food. Canned baby foods have alot of acid, even in the preservatives they use.

We kept her upright for atleast 1/2 hour after eating. We added cereal to her bottle.

We saw Dr. Tomer at Children's Hospital and were very pleased with her medical knowledge, as well as kindness to our daughter. Same with her staff. I highly recommend her.

Hope some of this helps.

Susie

Dear S., have you had your baby tested for dairy allergies? It's very common in about 70% of the population. I think it runs in families too, so if you have a family member with acid reflux, or digestive problems, she may have inherited it. It's in my family, and I have it as well. It can cause so many digestive problems. Good luck, and hope you find an answer soon.

Jessica's Mom

Hi S.-

I have an almost 5 month old with reflux. It is not as severe as your daughters and it must be scary for you to see that. I cut dairy out of my diet and it has helped her spitting up tremendously. You may want to cut it out for a week and see if anything improves. It will take a few days to see any results. Good luck and I hope there is some improvements.
K.

My grandson had acid reflux really bad also. He threw up a lot and didn't gain much in the beginning. That is how my daughter found out. He was given Zantac three times a day. How many times did your daughter receive the Zantac. Three times a day was good for my grandson. My daughter and grandson go to Dr. Robert Bobo. He also has a partner named Banerje. I just can't spell it! I have taken my daughter to Dr. Bobo for Chron's since 2001. He is really good. He is at the Toledo Hospital, Toledo, Oh. He is pediatric. I highly recommend him.

Hi S.,

How is her health other than this? Is she sick a lot?
Breastfeeding is the best thing you can do for her.

Any Peds. Gastro. doctor should do fine. Do you have a children's hospital near you?

I don't understand why she was given Reglan. Reglan is a stomach anti-nausea med with some bad side effects. With her having the MOVEMENT problem I would not give that to her. Have your doctor look it up. It should not be given to her!

I have been there and done that on these issues and more with my kids. It's been a tough health road. I hope to be some help to you.

Oh my:( That must be scary. I'm not sure why the doc didn't treat the reflux, it's really bad for their esophogus to be spitting up all the time and can lead to cancer down the road. My son gained weight just fine and was above average in weight and height, but he was still given Zantac. If nothing else, you do need to get that treated. If it doesn't help, then there is something else going on as well.
Good Luck:)

my daughter had similar problems and after trying every reflux medicine, her docs finally put her on axid. most peds do not want to put infants and toddlers on axid because it is so strong and can cause ulcers. it greatly helped my daughter and she doesn't have it anymore. check with you doc about axid but to forewarn you, they will want to ulcer tests every 3 months to make sure it's not too strong.

I had a friend who's baby is now around one. He had similar unexplained seizure-like episodes a few times. Tests revealed nothing, but she had just started him on solids at the time and concluded it was probably related to a rice allergy. He hasn't had any more to my knowledge after they started working under this assumption. As to your baby not gaining weight, I wouldn't really worry too much about it just yet. This is a time in her life, it is not unusual. My very very healthy daughter lost weight from 9 months to 12 months and didn't gain a whole lot at 15 months either. She just was much more active with being able to walk, climb, and play more.

Good luck!

My toruble did not include reflux but the jerking is spot on. We saw a neurologist and it was determined to be myoclonic jerking. I hope the spelling is correct. Basically it is a benign jerking movent that should go away with age. I would reccomd seeing a specialist. Best of luck to you.

Dear S.,

If you're in the Akron area, Dr. Emory Collins is a fabulous pediatric gastroenterologist. (We took our son to him after he was referred to us by another specialist.) As of March 1 Dr. Collins' new phone number is ###-###-####. His current number is ###-###-####. (On his letter announcing the move of his office, he also gave referrals to the Clev Clinic, Rainbow Babies and Children, and a Dr. Ibrahim Haddad in Youngstown.)

Best of Luck,

L. A

Hi S.
I know how you are feeling about the whole reflux thing. My sons is 3 1/2 months old and on Monday was diagnosed with severe reflux, after have a GI test done. We have tried all the medicines, Zantac, Prevacid, Priolec (sp), but they did not help at all.
We have an appointment with a GI doctor at Clarian North, his name is Dr. Fitzgerald. Our pediatrician recommended him. We havent seen him yet, but we really like our ped. Maybe he could give you some answers. Have you tried to get another opinion from anohter peditrician?

S. -

I have the best Ped. GI that my middle son saw last year! His name is Dr. Robert Bobo(i know funny name) he's out of Toledo and I'm not sure how far that is from you. but his # is 419/291-7010 he was really really good!!

Hope that helps! and yes allergies can completely contribute to that...Dr. Bobo also deals with food allergies.

S.

I was wondering if the seizure like movements could be vaccination related & also recommend to go natural in whatever you do=)

Follow your instincts on the milk allergy - my son had "reflux" and was going to be started on prescription meds until I asked our ped whether there'd be any harm to doing an "elimination/addition diet" to find out whether any foods could be causing the problem. Well, wouldn't you know it... within 5 days of removing ALL cow's milk products from our son's diet, he was a different child - and because I was breastfeeding, I removed all cow's milk from my diet too. Worked like a charm, no prescription meds necessary (these would NOT have treated the root cause of the problem, in our case, it would have only addressed a symptom yet my poor kid and his immune system would have still been reacting to the allergen!), and we are ALL healthier for it.

Since having gone through this with my own baby, I've met quite a few other breastfeeding moms who have had similar experiences - although instead of reacting to milk, perhaps their child was reacting to gluten, or eggs, etc. Even allergy testing wasn't reliable for figuring out the cause, in many cases. Only eliminating foods until the symptoms went away (an obvious decrease or disappearing of reflux, diarrhea, skin issues like eczema, sometimes even sleep problems!) and then adding a food back in (ONE AT A TIME ONLY!) and watching for potential reactions to crop back up over the following 72 hours -- this was, for many, the only reliable way of figuring out what was truly the cause of our baby's relflux and/or skin issues and/or bowel troubles and/or sleep issues. Once removing the food(s) that was causing the problem, our kids became obviously better.

If you do wish to pursue allergy as a possible contributing factor (and I highly encourage you to do so --> kids w/ reflux or GERD are MUCH more likely to have food allergies), here are a few resources that I found helpful:

Kellymom (evidence-based breastfeeding site) has a page on breastfeeding a baby who might have food sensitivities or allergies:
http://www.kellymom.com/babyconcerns/food-sensitivity.html

Email list for moms breastfeeding babies + toddlers w/ food allergies - excellent support for doing elimination/addition diets, lots of collective experience/wisdom here:
http://health.groups.yahoo.com/group/foodlab/

Dr. Sears has a great page on tracking down food allergies - the chart is excellent and really covers a wide range of the lesser-recognized symptoms of food allergies:
http://askdrsears.com/html/4/t041800.asp

And at your local library, check out Dr. Doris Rapp's book called "Is This Your Child?" - here are some of the reviews from Amazon:
http://www.amazon.com/review/product/0688119077/ref=dp_to...

Last but not least, I've heard good things about but have no 1st hand experience with this blood test for allergies:
http://www.alcat.com/

Best of luck, and definitely follow your instincts -- food allergies are often grossly unrecognised or completely misdiagnosed (as reflux, GERD, chronic ear infections that require tubes, etc.). There's a lot of great information and support out there if we're willing to do our own research. I love my pediatrician for many things, but I've found that my pediatric group (and even ped specialists like our ped allergist and ped gastro) has not been very on top of things when it comes to accurate information on infant and child nutrition -- I've received less-than-stellar information and diagnoses when it comes to breastfeeding and food allergies. I'm glad I trusted my instincts, did my own research, and sought 2nd and 3rd opinions when needed. I've since met many other mothers who have had similar experiences, so listen to that mothering instinct! :) Hope you're able to pinpoint the cause(s) and find some relief for your daughter (and yourself!) soon.