Everything up to this point had been by the book normal. This is my second daughter, she was born 3/16/09 7 lbs. 7 oz. though she was removed through c-section due to my pelvis not openning wide enough( I guess she had a bigger head that her sister did. lol). Let me begin by saying that my oldest is 4 1/2 now, and she was 100% formula, and had acid reflux to the tenth power! That poor child spit up so often, half of my family and friends wouldn't hold her for more than 2 or 3 minutes and wouldn't even consider if there was a bottle in sight, as she would upchuck a third to half of every bottle, so I am no stranger to it, but this time something is very very diffirent. This time around I am 100% breastfeeding, and have just slightly begun playing with cereal at 3 monthes. The first time I ever noticed anything,(6-8 weeks of age) we were at home and she was finishing up one of her afternoon snacks. I removed her from my breast and laid her down and the split second I released her body, she became very stiff, stuck her arms straight out in front of her, started to shake and very swiftly move her eyes from left to right. After my initial shock(5-10 seconds) I picked her up and she immediatly stopped and seemed to be completely normal. I didn't make the connection until a few days later but she threw up about two hours after the incident. ( I know this was vomit verse spit up because it was very chunky and looked more like cereal than brest milk.) I took her to the ER, there was no fever which they stated was the main factor, and they took a urine sample which also came back normal. I told her pediatrician about the episode, and while finishing up her check up I realized that every time I lay her down, to some degree her body stiffens, and her eyes fluter around as if she has no control over them. They sent us in for an EEG and everything came back normal... She to this day has not had an episode to the degree of the first, but still her eyes flutter around and it almost seems as if she must compose herself each time. The doctor is explaining it as being acid reflux, and has given her an RX for Prevacid. Has anyone experienced any like symptoms with acid reflux? I'm sceptical to give this to her as I have read very contradicting statments reguarding the proper use? Has anyone ever heard of seizure like symptoms with reflux?
Q: Symptoms of acid reflux in infant? seizure like?
Have you read anything about Sandifer's syndrome? It is caused by reflux and can look very much like seizures. I had never heard of eye movements going along with it but I did find this link:
http://www.righthealth.com/topic/Sandifer_Syndrome/overview/wiki_detailed?modp=Sandifer_syndrome
In general, I'm a little leary of Wikipedia but it does give a fairly good synopsis.
All that said, it might be a good idea if possible to video tape an episode and keep a recording of how often they happen especially if you are going to put her on the Prevacid. This will allow you to monitor if the frequency decreases once she's on the medicine.
As for concerns about neurological issues with GI meds, there is a concern about children being on Reglan which is a different class of drug than Prevacid. It has unfortunately been found to cause nervous system side effects. Prevacid on the other hand to date has not been linked with nervous system side effects.
Finally, if you really don't feel like you are getting the answers you need you may want to seek a second opinion. Having evidence in hand like the video and log would be very useful if you do get a second opinion.
Hello Rebecca, I agree with Stephanie that it is a good idea to explore more information on Sandifer Syndrome. Sandifer Syndrome may be caused by a painful reflux episode so Prevacid would be a treatment to consider. There is some concern in the medical community about giving Prevacid (a PPI) to very young infants. You might want to talk to the doctor about other non medication approaches such as a wedge for positioning and sleeping, thickening feeds (not easy with nursing) and keeping upright after feeds. You could also talk to the doctor about an acid reducer such as Zantac that is FDA approved for ages 1 month of age and older.
My daughter had silent reflux so placing her on her back caused the stomach contents to obstruct her airway and cause aspiration. While it does not sound like your little one is aspirating, she could be having significant discomfort from being fully reclined.
You might want to see if the doctor can write a prescription for a wedge such as the Ar Pillow or the Tucker Sling.I know Pollywog baby also had a changing wedge that allows a baby with reflux to be upright. My daughter was older so I was not able to personally try these products. However, other parents have indicated that wedges and inclined changing surfaces made their babies more comfortable.
Jan Gambino
The Reflux Mom
www.refluxmom.com
My son was born on 3/12/09 and has been doing the same thing everyone is panicing thinking it's a Seizer and now I think I found that answer my wife wanted to take him to a Neurologist but I think we need to focus on things to stop the reflex. He is on zantak which we just started again. My son is stifing up loud crys at time eyes tearing up and somewhat closed for about 10-20 seconds then he is fine.
how did u get them to stop feel so bad for him!
Take the baby to a pediatric neurologist. They can do tests and reveal why the seizures are happening. Try to record the seizures. My niece who is 1 month old started having seizures with arms coming straight out and up, eyes unfocused, and legs stiffening. She is now on a seizure med called Keppra. She has one seizure a day still, but she also is trying to get used to the medication. Dosages are very tricky with infants as they grow. Doctors usually belittle things and the only way we could get her to a neurologist was taking her to the ER. She was having 3 or 4 seizures a day. The doc said everytime the seizure was apparent, it was like a flash of lightning was going off in her brain doing damage. Every second counts. Don't wait til it's too late. Go to a neurologist.
Ironically enough, my daughter has the same exact birthday as yours and is dong very similar movements. We have already had an EEG performed and they said they found no seizure like activity. They feel it may be reflux or masterbation. My daughter was administered an incorrect vaccine at 2 months and this started happening soon after that. With your situation, do you see any connection to your childs vaccine schedule?
My daughter was born 29 weeks at 3 pds 3 ounces and has had episodes that consist in the carseat from being a baby to this day that consist of sweats, closes her eyes, stretches her leg and arms out looks so much like a seizure but the neurologist rule that out after a eeg. til this day i am unable to ride with her in a carseat due to these horrible events. People look at me as if i am crazy for having her out of the carseat but it happens while she in. MD stated she also has GERD and presribed her with the dissolvable Prevacid tablets et nothing has changed. GOOD LUCK
Hello,
The symptoms you are describing had to be scary! I am glad seizures were ruled out. I wonder if her symptoms were caused by the carseat. A carseat can put a great deal of pressure on her stomach, causing terrible pain and discomfort.
I encourage you to try the carseat again for her safety. Maybe someone could sit next to her to watch her for the first few trips?
Jan
yes i have a grand daugther who is 3 months since birth she would spit up after having a bottle and in between times if she put flat on her back she would have the vomiting
and the seizure like symptoms her eyes would row bak and tears would come from her eyes and she would be very stiff her head would go back
We are going through this now and my daughter is 16 months old with a history of colic & reflux. Initially our military dr said it was behavioral and I said that is odd simply b/c well they don't have "behavior" until they are older...well anyhow. We have her with a regular pediatrician and they were saying similar things so I was thinking I was crazy.
She will have her "fits" as i call them only in her carseat or stroller when she is buckled in. She will tighten her arms and legs turn her head off to the side and then open her mouth and just kick her legs and her eyes stare off. Looks like she's having a seizure. She seems tired after. But the only catch is this, I yell her name or snap my fingers and she looks at me. She will discontinue what she's doing. Sometimes she'll resume, sometimes not.
So I brought it up to the new dr. Immediately she said Sandifer's. She did put a consult in for Neurology to be on the safe side. But did request for me to video her episodes. She has so many while we're in the stroller and the car that it's not hard at all to catch them. Goodluck. And I hope this helps.
Hello Military Mommy, So glad you have an appointment with the neurologist. Be sure to take the video to the neurologist too. I know several parents who reported that this was very helpful to the doctor. Try to keep track of how many times this occurs in a day or week. Certainly let us know what you find out too!
Jan Gambino
The Reflux Mom
My grandson who is 6 mths. is having similar problems and this was also the diagnoses so far, in fact as I am writing this he is on his way home from the specialist with a monitor for the night. This after spending 4 days about a month ago in the hospital all hooked up while they ran test. The latest episode My daughter had left him with me for a few hours while she did some chores at home, she gave me some formula (Good Start) and she also give me some ( Enfamil) saying she was almost out of his (Good Start). Now I want to explain this, my granddaughter 5yrs old now, also was a spitter until I advised my daughter to switch formula to (Good Start) because my BFF swore by it, she had used it for all 7 of her kids. The switch was made and she hardly ever spit anymore and she wasn't as fussy or stinky. So my new grandson from my same daughter was breast fed for a few months and had his first seizure like episode during this time. Now she was not in my opinion eating the best of things lots of (junk food) or just not eating enough. So he was fussy and not satisfied so she started him on formula (Good Start). Then she tried Enfamil for what ever reason and his episodes became more often and got worse each time. So despite what the docs. said I told her that I felt it was a allergic reaction to the (Enfamil) so she switched, no more problems... until that day she gave me both and I had to add 1 scoop from the (Enfamil). She picked him up shortly after and went to the grocery store, as she was holding him he started to fall back (not holding his head up) she called his name and laid him back in her arms and he was completely limp ( which was a different reaction then before) he was breathing but unresponsive she ran to the register and asked them to call 911... he did start responding shortly after and by the time they got to the hospital he was laughing and smiling like nothing had happened. My daughter calls me to tell me that they were taking him to the hospital and I asked her you don't think it was the scoop of Enfamil do you? She was going to share that thought with the Docs. (allergic reaction?) We still don't know anything yet, but if you start looking into Allergies to Gluten my bells were ring... Because during some of the 4 day testing they felt his motor skills were behind and some other symptoms also hit home with me... I think we all need to explore this option well... I hope I could at least give you some food for thought...Best Wishes Gramma Angel
Hello Gramma Angel,
How is your little grandson doing? Did you find out if he is allergic to the Enfamil or if he is having seizures? What a scary experience for your daughter too!
Jan
Hi Jan, we still do not know what caused the last episode, they are going to be check his heart this coming week. They are not sure why he went limp and basically passed out... The scariest part about it is the not knowing, I'm praying for something simple like an allergy but the doctors give me the doubting looks...Thanks for your concern,Gramma Angel
Hello Gramma Angel,
I really don't like the waiting and wondering. I wish the answers were clear. Then I could just go ahead and start the treatment!
I hope the doctors figure out what is going.
Meanwhile, give that grand baby a hug for me!
Jan
Hi Jan, It's been awhile, so my has daughter started taking him to a Chiropracter because someone had suggested this to her. And yes the Chiropracter did feel his virtabre was twisted in his neck, which makes a lot of sense because his birth was alittle rough because my daughter has a very narrow birthing canal. The Doctor had seen this before and she felt everytime he goes through a growth spirt it could cause the seizures. He has been in the hospital three time with the neurologist hooked up to all the equipment and they found nothing, but they are not willing to look into the twisted virtabre idea. Now I have been a preschool teacher for many years and I felt he was not moving along with his motor skills I was very concerned, until he started his Chiropractor visit I mean the first session he instantly started leaping and bonding through his mile stones. So he has still been on the seizure meds. because the last time he had one where he stopped breathing for a short time but the side effects are miserable, We hope to take him off soon. I encourage familys to keep seaching for anwser and to go with their gut feeling with diagniose from Doctors
hi yes my son was around 6weeks old when he started having episodes where he stopped breathing then about 1 week later he was laying on the sofa facing the tv as i had cbeebies on for my daughter and i noticed my son started to shake when i went closer his eyes were flickering and i could only see the white part of his eyes his body went very stiff i picked him up and very quick he stopped but when it stopped he went really floppy very tired he was due a feed about 15mins after it happened and my son was like clock work with his feed and he would not take it it was 5hrs after this episode that he had a feed he slept for hours after it happened alot and we were back and for the uhw cardiff all the time as i was very worried he had a EEG, reflux test, a chest xray, loads of blood tests, urine tests everything come back normal only the reflux test came back pos but nobody knows why my soon has seizure like symptoms and now my son is 5months and due to the doctor at the uhw both my daughter & son has been taken in to care as the doctor says he can find any reason why he does it so he thinks i have lied about it has this happend to anybody else????
Hello!
Have you heard of Sandifer's Syndrome? The symptoms of Sandifer's Syndrome are similar to a seizure. A baby may arch back, his/her eyes may roll back and it may appear that the baby is momentarily unconscious. It is thought that Sandifer's Syndrome occurs in response to a painful reflux episode. Some babies do have seizures and so a doctor will often run tests to rule out seizures.
It is frustrating because these episodes are often quick and don't occur at the doctors office. Some parents have been able to videotape these episodes to help the doctor make a proper diagnosis.
I am not sure if I understood your message. When you said the children were "taken into care", what did you mean by that? Are they in the care of social services? Let me know-ok?
Jan
yes because of this both my children are in the care of social services thank you so much for your infomation
Hello,
Oh that is terrible news. I have heard of similar cases-the doctor cannot find out what is wrong and does not see the symptoms you are seeing at home. Please email me on my HealthCentral email (click on my hightlighted name) or at this email address: refluxmom@gmail.com so we can talk about this some more and I can link you to some resources.
Best wishes,
Jan
my son was diagnosed with sandifer's at 6 mths of age. He also had the odd eye movements that seemed to confuse the diagnosis. He was admitted and seizures were ruled out by a pediatric neurologist.
His episodes were very often post feeding. He would arch, turn head to one side, eyes would flutter or roll back in his head. The Sandifer's started when we tried to introduce solids for his reflux at his doctors suggestion. When we stopped the solids the episodes went away. His system just wasn't ready yet.
Hello Natasha,
Thank you for sharing your story. It must have been so scary to see your son having these episodes.I am so glad you and the doctor were able to figure out the cause of the Sandifer's.
It is interesting that your son was not ready for solids. My reflux babies were the same way.
Jan
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Hello!
It is so scary when a baby is having seizures or seizure-like symptoms. It is important to rule out seizures. What does the doctor think? Does the doctor want him to see a neurologist? Sometimes a baby has seizures and it looks like Sandiers Syndrome. Other times, a baby has reflux and it looks like seizures. Once the doctor has ruled out seizures, you can work hard to control the reflux.
Jan