Is this Infant Spasms or something else?

Originally my son (who is now 9 mnths) was diagnosed by a pediatrician with GERD but the 2 different meds we were prescribed didn't work so our GP suggested a diet and lifestyle change before we tried more meds. This was working with little reflux symptoms until he started to have these "jerking" motions. I am video recording these so that I can take it to the doc to see what is going on. He is now doing it in his excersaucer, swing, playpen and while I hold him. He has also started to put his arms straight out and tilt his head either to the side or straight forward or backward. He gets agitated just before and after it happens and cries alot of the time. In this video he is hungry but the jerking is causing him distress. I have tried distraction but it does not work, he can't control the jerks. Any information, ideas or suggestions anyone could provide would be great. Thanks.....:) I looked into Sandifer's Syndrome and to me it just doesn't fit. But that's my opinion...seeing the doc this week...keeping my fingers crossed that it isn't serious.. Oh and the image and sound isn't that great it is taken with my digital camera. Sorry...

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[alisonamsb]

Certainly looks like something he can't control. How long has it been going on and how often? Does it happen with other types of foods like teething crackers, thicker foods? It appears that he gets more upset when you wait too long for the next bite, or when you pull the spoon away. Some kids get so riled up when eating that they need it right then. Can you refer yourself to a neuro or a feeding specialist (OT, SLP)?

[lb101073]

This pretty much happens with everything..even his formula. During our feedings he gets upset sometimes but I noticed that it's when he is really hungry or just grumpy. He does start to cry alot either just before or just after a jerk or the reflux pain. I was able to make an appointment with our ped but it wasn't for almost 2 months. I'm going to see if I can get in to see a neuro or SLP but I don't think I will have much luck. If not then we are off to Toronto Sick Kids....

[lb101073]

But I will be positive and hope that one day my little noodle will have a better quality of life. I don't need these certain people it was just a huge disappointment to find out who really cares. My little guy is still having lots of episodes and I am still trying to figure out what to feed him some days...he also has an issue with constipation so that just adds to the dilema when feeding time comes...for now I am just going day by day..thanks for the support and I will keep posting anything new

[lb101073]

Well, my journey thru all of this has been a solo trip. I have had no support from certain people in my life that I thought would always support me and that includes my husband. They all thought I was overreacting and that it just couldn't be that bad. I honestly felt like I was losing my mind trying to get someone to listen to me. An ER doctor even thought I was overreacting but yet wouldn't do any tests to prove me wrong. So, this is where I am at..alone and trying to deal with all of this...

[lb101073]

We are trying a higher dose of meds (prevacid), Doc seems to think it's Sandifer's and not neurological...he had an episode at the office so he was able to see it...if there is no improvement in 1 week then we go back and discuss other options...I'm keeping my hopes up that these meds work for him, the last couple of days have been just horrible...thanks again for the advice and I will keep posting his results...

[lb101073]

Still waiting....if I don't hear anything by Monday I am going to the hospital...he is still doing the movements and even more so now with a lot of wiggling, back arching and loud cries before and after a "jerk"..oh, and I actually caught him rolling his eyes on video too.....I'm hoping it is treatable, watching him is really hard, I know he is in pain...that's why I'm only waiting 2 days...ahhhh, I was going to name my baby Maddie(Madilyn) if he was a girl...lol..I will be back soon..

[jegspillerpiano]

Strange and evil things infantile spasms are. There are many possible underlaying causes. One thing is, it is clearly to do with the baby's developing brain, and they seem somehow tied in to emotion'. It's as if their brain cannot control a little surge of happiness or excitmenet. My son often used to be trying to laugh and then *wham* a seizure hits. You can see this baby getting excited by the food but this triggers uncontrolled brain activity. It's a fucker of a condition.

[cpohlweary]

was curious if you went to Sick Kids and what the response was? we were just there this week - i took my baby boy in to ER as i thought he was having head drop seizures of some sort. eeg was normal and neuro said it's NOT epilepsy - is a self-soothing behaviour. i am not convinced of that. i'd like an eeg that actually captures the behaviours, if it's normal then i'll be much more satisfied.

hope all is going well for you and your baby. he's adorable.

[morrisonkm2]

I am following along with you. Could you watch my video and tell me what you think as well. I am convince reflux is making my LO shiver but I dont know for sure. THey dont think it is seizures???

[alisonamsb]

I had a feeling you might be in Canada. I really think he needs to see a feeding specialist. They see these type of problems everyday. They will be able to tell you the cause. They may have to refer to a dr for testing but at least they can see the behavioral aspects of what he is doing. I don't know your system, but if you can make an appt on your own, I would do that. There must be a feeding clinic somewhere in your area. Major hospitals usually have them. good luck

[SJGP123]

Maddie has had so many ups and downs...she is finally more "normal" for the first time in her life! I wish for no baby to have to go through this... I wish that there was more information for parents about this Sandifer's thing. I wish I would have known long before now. She, and I have missed almost a year of her life just trying to survive. She has gone from not doing ANYTHING to crawling, pulling to stand, playing, babbling, getting into sit w/in the last month of treating the Sandifers.

[SJGP123]

We recently had a rough patch with her Sandifer's and Maddie is now on 20 mg Prevacid and 1ml of Reglan 4x a day...1st few days were horrible!!! I thought she was dying...doc said hang in there...by day 5ish she was happy and no more arching. She actually is sleeping at night for 6 hours at a time...She will be 1 in less than a month and has NEVER slept this long. is also sleeping out of an arch position which is also new...I think we will continue these meds.