The Video That Diagnosed my Son

[Anonymous]

I thought I’d share the video clip that my son’s pediatrician diagnosed him with sandifer’s syndrom. We took it on our digital camera and brought it in to the dr’s appointment. If you notice how he jerks his head and neck back and stiffens his arms and legs. he did this 4-5 times a night until he was 2 1/2, Sean just turned 3. We are running more tests on him and I will keep everyone posted.

http://www.youtube.com/watch?v=y36pYx1EXLk

[Anonymous]

my son does that too…i thought it was a baby thing

[Anonymous]

I’m not sure … he also has mini seizure like activity and his eyes roll back up in his head often. I’ll let the boards know if the diagnosis change with his test results. He got much better down the road, the eye rolling continued, the jerking the head and neck back still continues. CT Scan came back normal last week, we are waiting on his EEG results.

[Anonymous]

Kaelyn did that all of the time, and Alexandra does it on her bad days. It’s nice to have it as a visual for people who aren’t sure what some of the sandifer’s symptoms can look like.

[Anonymous]

Thank you so much for sharing. Moms are always asking ‘is it sandifer’s’ it is just so hard to know sometimes. I could tell it was hard for you to tape it and not be able to comfort him.

[Anonymous]

It is so sad to see the video and think of how much pain he is in. Thanks for sharing a I am sure it helps a ton of people who don’t know what to look for. Brodie did the same thing, the arching, stiffening, and used to roll his eyes back too. It freaked me out, but the eye rolling eventually stopped. RLM4262006-10-5 9:34:22

[Anonymous]

Thank you so much for sharing that. It looks a lot like my daughter basically for the first 9 months of her life. She was like that almost nonstop during the first 6-7 months. You couldn’t hold her b/c she was arching and screaming all the time, but you couldn’t put her down. If it was during a feeding, then she also would throw her neck back with a reflux episode, and pull at her ears and scratch her face. She would also do what I used to equate to a “deer in the headlights” look… she’d be feeding or resting, then she’d reflux, she’d suddenly stop, pull off, scream and then arch her back, throw her head and neck back, and her eyes would go wide open and then roll back. It was horrible and watching your video brings tears to my eyes. Good luck with the investigations. My daughter’s EEG came back normal, btw. Has your son been on reflux meds?

[Anonymous]

oh my god, i just want to yell and scream out of the windows. my daughter is 7 weeks old and i am trying to get the video of her having her sandifers episodes on this site so i can get some feed back. youre poor little guy it’s just an awful thing. i am not sure of his previous history. what was he like when he was first born. did he do this sandifers when he was a baby or did it just start? best wishes keep us posted

eileen

Aiden 12/01

Grace 8/06 viral meningitis, gerd, sandifers, prevacid 30mg/day, enfamil AR

[Anonymous]

Thank you for posting this – that was Matthew exactly for a few months of his life – but things really turned around for him when he was maybe 6 or 7months old and he stopped arching etc. (i think the timing is right,def had none of this by the time he was 8months old).

Oh looking at the video just made me cry – it was so bad i think i want to erase it from my memory. He would almost fall from my arms and i was so tired of struggling all of the time to just hold him and comfort him.

Is your son medicated? When was he dignosed? Good luck with all the testing and please keep us updated. I am so sorry it went on for so long!

[Anonymous]

Hi there, thanks for all of the responses. I posted this video in hopes of getting other moms some type of relief. My first 2.3 years of my oldest sons life was the hardest trial I’ve ever been through. It wore hard on my young marriage and my husband and I pulled through it. Sean’s reflux was silent and it wasn’t diagnosed until he was 15 weeks old. From day 1 that he was born, he was the loudest child in the nursery and cried 24/7. He never “latched” well onto a breast. He would always arch his back and sway his neck far back. At 15 weeks the dr said we could try Zantac but no gntees. The next 2 weeks made my husband and I feel like we were sane again. What followed is what most of you tenured GERD parents know. The Zantac wore off and we were back to no sleep, screaming, and eyes rolling back in his head, and a lot of back arching. The doctor uped his dosage of zantac for the next 9 months. Didn’t do a darn bit of good. We decided to move out of state closer to my husbands family for support as EVERY night Sean would be up with the “VIDEO” events and it was so hard for us. Upon meeting my new pediatrician I cried in his office and begged for a referral to a GI. Instead he put Sean on Prevacid, it helped a little, but the episodes at night still continued. I decided I had enough, my inner mom told me what was going on was him trying to show me how much pain he was in and couldn’t possibly be normal. I decided to break out the digital camera and I recorded it. At my son’s next dr’s appointment upon review, the dr immediately diagnosed him with Sandifer’s syndrome and put him on reglan. (still no referral to a GI). We had him on reglan for about 4 months and my husband and I decided the seizures it was putting him into was worse than the night episodes and we weened him off the reglan. He eventually improved, however still doesn’t sleep though the night. And he does the odd eye rolling thing all the time. It’s really hard on me because he wimpers in his sleep. What is wrong with my child, and why have I been in this nightmare for 3 years? Finally I asked his most recent pediatrician and they are running tests. They started off with his brain to make sure he’s not having real seizures. So far the CT Scan came back normal and the EEG results haven’t come in after a week. I feel for all of you moms of gerdlings. It’s really hard to see your baby hurt. there is a light at the end of the tunnell, keep faith, and if need be keep pushing your doctor or switch. Video taping is a good idea I’ve decided. Sandifer’s isn’t resolved by reglan, they said kids outgrow it. But like the other posts say, it more than just reflux. A lot of back arching to almost a U shape and throwing the head/neck back in a very awkward position. Eye rolling is common as well. I wish I had a video to look at when I was so miserable typing on the reflux boards, I could have mentioned something to my pediatrician. My second son has worse reflux and he is eye rolling as well. At least I’ve been down the road before. I’d give each mom a hug that has a child w/reflux.

[Anonymous]

Thank you so much for taking the video and putting it on this site. This will help a lot of other parents out there!! Sandifer’s is often overlooked by doctors as something serious (or so it seems to me). My son was like that the first two months of his life until I took it into my own hands to up his medication until it seemed to me that he felt better. Once I had the meds upped, he’s never had those sandifers symptoms again. The med doseage was much higher than the pediatrician said, but it turned out that the high dose I gave him was the correct dose according to the MARCI-Kids website. Hopefully with the help of these message boards we’ll be able to educate the doctors out there to stop wasteing time putting our kids through the same zantac-reglan routine and just give a higher dose of a PPI like Prevacid or Zegrid. I feel your pain. I believe that sandifer’s isn’t something you outgrow, you have to stop what’s causing it to happen. That’s my take on it anyway. Keep asking questions and keep being a great advocate for your son until your gut tells you he’s OK. Don’t let people make you think your crazy – go with your gut and listen to your heart. Keep on asking questions until you are satisfied with the answers! Keep up the good work mom!

I’m sure you know about the Prevacid dosing calculator on the Midwest Acid Reflux Children’s Institute website, but here’s a link just in case… http://www.marci-kids.com/dosing.html

lansima2006-10-6 21:34:54

[Anonymous]

Thankyou for sharing your video! I know it will help many terrified parents. We had a similar situation. I spent numerous nights crying along with my hubby and children when my newborn exhibited Sandifers behaviors. It was crazy how long they (numerous docs.) let her suffer. I went through the old “she’ll out grow it” to the “she is just spoiled” sayings. We do have to advocate for our children! This disease usually catches parents off guard and is totally unexpected. Not to mention the trials and tribulations of trying to find relief for your child and hope that they pull through with no developmental delays. Thanks again for sharing! He’s lucky to have wonderful parents! I hope he gets a good dose of PPI soon that works for him!

[Anonymous]

floridasue,

Hailey’s Sandifer’s is exactly like how you describe your son. Like I said, she was like that for more than the first 6 months of her life. She screamed so loudly that the doctor said he’d never seen a baby like that before… and he’s got lots of experience!

At night, she twists herself into a c-position, writhes around like she’s being tortured, moans and whimpers, screams, refluxes, chokes, gags, coughs… it’s heartbreaking. She’s elevated and she still does this. No dose of medication has changed this for her, which is why I suspect food intolerances. Have you ever looked into this for your son?

The other thing is that Hailey’s EEG came back normal which is when her arching/screaming/eye-rolling fits officially were diagnosed as Sandifer’s. I do have to say that once she was put on a good dose of prevacid that was being given and prepared properly, her Sandifer’s really got so much better during the day. She still arches sometimes but nothing like before for the most part. Though like I said, nights are still a problem.

I know that you tried prevacid, but you might want to try him on a more aggressive dose of PPI, maybe Zegerid so you don’t have to worry about instability or how to give it. Like I said, this was the key to getting my daughter’s Sandifer’s under control during the day. I think the other piece of the puzzle is likely food intolerances which we haven’t been able to explore fully as she has had a terrible bottle/cup/food aversion since she was two months old and feeding and calories are big issues around here. If you don’t have to worry about that then it might be something that you want to look into.

BTW, did he ever have a probe or a scope done? Thank you again for posting your video. I hope that you can get some answers.

s&h’s mum2006-10-8 8:16:52

[Anonymous]

This video makes me very sad- Seth is still displaying some of the symptons it shows at night. I always thought he thrashed around so much because he was possibly having night terrors that triggered the reflux. It breaks my heart to know he still may be in so much pain….

[Anonymous]

Two of my boys did that when they were little and only one of them was ever diagnosed w/ refulx. I always thought it was a “baby thing”. Kind of like a little tantrum or fit. I had never heard of Sandifers until I came to this board., but now it looks as though that’s what was wrong with them. Now I feel bad for ignoring there symptoms!

[Author]

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