@jayel71 I watched your videos. I don't see any movements here that look anywhere near as severe as what we were seeing with Zoe at the same age. My gut instinct is that everything you're seeing is just distress/pain related to reflux. If you're not already, I strongly recommend max doses of Prevacid. Over time, this helped Zoe's reflux tremendously. Oh, and be sure to obey the 30 minute wait after giving the Prevacid before feeding. Very important. It didn't work for us 'til we did this.
@dirtyelectronic thank you for taking a look and for your honest advice. I took my daughter to see a doctor yesterday and they ran some tests, took an x ray and everything seems ok ... no specific findings other than a mild case of acid reflux. They did prescribe prevacid and thankfully its working for her. I hope Zoe is doing well. Thanks again!!!
The same happened to my son, he started doing weird movement a month ago that we thought were normal but became more frequent and severe, so I told the doctor & he said that it looked like IS, he got an EEG done & it came back abnormal, however the particual patter/wave that forms in the EGG was still not showing, but due to the fact that the movement looked exactly like Infantiles Spasms, the doctors decided to start the ACTH shots, which seem to be working now, he's on the 2nd week now
@anaisgh12 I consider you quite lucky that the doctors identified it and began treatment anyway. Our doctors did nothing for over a year, and once Zoe was eventually diagnosed with Infantile Spasms, the unchecked seizure activity had already done untold damage to her brain and completely halted her development. I know ACTH is extremely trying due to the side-effects, but it often works. I wish you all the best. If ACTH doesn't hold, try the Ketogenic diet. It is working for Zoe right now.
@anaisgh12 I hope the ACTH is working well for you, without the difficult side-effects that are often associated. We have friends that have had a lot of success with it (though they have had the side-effects). After completely failing with Sabril/Vigabatrin, we have found success with Zoe's IS using the Ketogenic Diet. As long as it continues to work, we'll definitely stick with it. Good luck in the future. I hope both of our children have perfect EEGs in the very near future. :-)
@theresapaige Yes, we now know that they are. However, no EEG (including 24 hour video which did capture several events) ever revealed any abnormalities. Nor was their anything wrong with her CAT, MRI, or PET. We even tried anti-seizure meds just in case. No effect. However, after a massive regression just a few weeks after this video, we had yet another 24 hour EEG. It revealed Infantile Spasms. It is still unresponsive to meds. Why it did not show up as spasms sooner, we may never know.
@giaafterdark Yes, we now know that they are. However, no EEG (including 24 hour video which did capture several events) ever revealed any abnormalities. Nor was their anything wrong with her CAT, MRI, or PET. We even tried anti-seizure meds just in case. No effect. However, after a massive regression just a few weeks after this video, we had yet another 24 hour EEG. It revealed Infantile Spasms. It is still unresponsive to meds. Why it did not show up as spasms sooner, we may never know.
Oh my god, how awful. My 3 month old is on prevacid fast tabs (7.5 mgs) once a day and domperidone as well. What scares me is the final shots of your baby in bed - my son does the same thing - I thought it was just the moro reflex? How can I tell if it isn't? I am getting scared now, thinking it could be more than reflux. Any suggestions? Thanks so much.
Don't worry yet. Most kids that do that who have reflux legitimately just have a little Sandifer's Syndrome. (Harmless involuntary reaction to the pain of reflux, like hiccups.) In our case, yes, Zoe now at 14 months old very clearly has some severe problems, developmental and otherwise, that have yet to be formally diagnosed. But you shouldn't worry. Odds are, your son just has some tough GERD that he'll grow out of.
I too am in the process of getting my son properly diagnosed. These videos are awful to watch because he's just a baby but they have helped me as well. My son has done this since the second day of his life and I am still struggling with doctors to have him properly diagnosed. I'm not having much luck so I'm going to head to Toronto Sick Kids Hospital. I have never heard of Hirschsprung Disease, my son has also had major issues with constipation since he was born.
My Gastro doesn't think it's Hirschsprung upon a rectal examination last month, but I've learned such things are never definitive. Still, we remain without any diagnosis, and things are actually getting worse, not better. If you have any success diagnosing your son at Toronto, I'd appreciate the info. I will certainly do the same if we get any answers. (As you can tell, I'm making just about everything that happens public. Easy to find.)
I will definately let you know what happens and how things went. I feel your frustration because we are going thru the same thing. I saw my GP last week and he gave me another perscription for Prevacid (same dose as before) and never ordered any tests. If I want to see our Pediatrician then I have to wait 2 months. I'm not giving him the meds (I know for a fact they don't work, not that dose anyways). We are just going to go to Sick Kids hospital. I'm also taking my videos with me.
It is extraordinary the slow pace at which doctors move, even as a baby is tortured by pain daily.
Depending on the age of your baby, consider pushing for a higher dose of Prevacid. I suspect that Zoe has outgrown her prescription. I'm pushing anyone I can to let us try the outside edge of PPI acceptance to see if that indeed stops the pain again (as upping her Prevacid dose has worked to stop episodes for a couple of months in the past.)
I am going to mention the dosing too, I know he needs something more. Plus the dose he was using was very minimal. I am going to try to book myself into a couple of different specialists (I wasn't going to but it's worth a try) but I don't think I will have much luck. It depends on the wait time. If I can't get in I am going to the toronto hospital. I will stay in touch and let you know how it turns out. I'm keeping my fingers crossed.
Assuming you live in Canada (based on Toronto mention) and that's the trouble with all the waiting. If you get fed up and you want to come to the States, let me know. I live in Detroit, which is only 4 hours drive. (We've done the drive many times.) I could point you toward our best specialists (we have 2 good Gastroenterologists, etc.) - even find out-of-pocket cost of a visit for you...
Thank you very much, that is what we will have to do if nothing comes of all of this. I do think once he is tested at the Toronto Sick Children's hospital this will all be sorted out and we can then begin to treat whatever is hurting Liam. You are right about the wait it is ridiculous sometimes. I will definately keep you posted on how things go and the outcome from the Toronto hospital. Thanks again...:)
Thank you so much for posting this video. Up until today my 11.5 month olds "jolts" were not really tied into any dx. He had been dx'd with BPT (Benign Paroxysmal Torticollis) but our neurologist could not explain the myoclonic seizures. Sandifers is a close relative to BPT and after seing your baby I know that that's what he has. Not BPT. Through this video we can hopefully get him on reflux medications and help him get better. Thank you!
You're quite welcome. Zoe is now 13 months old, and while we still know the trigger (food), we've had little-to-no luck with reflux treatment. She's tried most everything there is, but the episodes still come after eating, as strong as ever.
We see a new (3rd) gastro doctor on Thursday. We're going to try and get him to look into bowel issues (like Hirschsprung's disease) as the possible root cause, as Zoe has also always had constipation issues.
Zoe is now 1 year old, and the episodes now seem much more clearly linked to food/meals and are happening about 30-60 minutes after each feeding. All docs now agree that something in the Gastro department is the cause.
If your son is doing something similar, my advice - having been REALLY down this road in every way - is ask your Neurologist to do an MRI and an EEG. No use risking his health not knowing ('cause if it is seizures, you could treat 'em.), and neither test is dangerous.
We have done both and they are abnormal, but do not show signs of seizure activity. She saw a video that we took and has suggested we see our pediatrician in the morning to get on zantac. I guess we will have to wait and see. Thanks
Please don't vaccinate this beautiful child for fear of causing more neurological damage.
Stephoodlee 3 weeks ago
I hope you got the diagnoses of infantile seizures?! Look it up on YouTube, it is VERY SERIOUS!
tegskkace 3 weeks ago
I am wondering if this is what my 6 week old daughter has but milder? I am posting a video . plz tell me what you think. Thank you
jayel71 1 year ago
@jayel71 I watched your videos. I don't see any movements here that look anywhere near as severe as what we were seeing with Zoe at the same age. My gut instinct is that everything you're seeing is just distress/pain related to reflux. If you're not already, I strongly recommend max doses of Prevacid. Over time, this helped Zoe's reflux tremendously. Oh, and be sure to obey the 30 minute wait after giving the Prevacid before feeding. Very important. It didn't work for us 'til we did this.
dirtyelectronic 1 year ago
@dirtyelectronic thank you for taking a look and for your honest advice. I took my daughter to see a doctor yesterday and they ran some tests, took an x ray and everything seems ok ... no specific findings other than a mild case of acid reflux. They did prescribe prevacid and thankfully its working for her. I hope Zoe is doing well. Thanks again!!!
jayel71 1 year ago
The same happened to my son, he started doing weird movement a month ago that we thought were normal but became more frequent and severe, so I told the doctor & he said that it looked like IS, he got an EEG done & it came back abnormal, however the particual patter/wave that forms in the EGG was still not showing, but due to the fact that the movement looked exactly like Infantiles Spasms, the doctors decided to start the ACTH shots, which seem to be working now, he's on the 2nd week now
anaisgh12 1 year ago
@anaisgh12 I consider you quite lucky that the doctors identified it and began treatment anyway. Our doctors did nothing for over a year, and once Zoe was eventually diagnosed with Infantile Spasms, the unchecked seizure activity had already done untold damage to her brain and completely halted her development. I know ACTH is extremely trying due to the side-effects, but it often works. I wish you all the best. If ACTH doesn't hold, try the Ketogenic diet. It is working for Zoe right now.
dirtyelectronic 1 year ago
@anaisgh12 I hope the ACTH is working well for you, without the difficult side-effects that are often associated. We have friends that have had a lot of success with it (though they have had the side-effects). After completely failing with Sabril/Vigabatrin, we have found success with Zoe's IS using the Ketogenic Diet. As long as it continues to work, we'll definitely stick with it. Good luck in the future. I hope both of our children have perfect EEGs in the very near future. :-)
dirtyelectronic 1 year ago
That really looks like infantile spasms to me. Have they ruled this out?
theresapaige 2 years ago
@theresapaige Yes, we now know that they are. However, no EEG (including 24 hour video which did capture several events) ever revealed any abnormalities. Nor was their anything wrong with her CAT, MRI, or PET. We even tried anti-seizure meds just in case. No effect. However, after a massive regression just a few weeks after this video, we had yet another 24 hour EEG. It revealed Infantile Spasms. It is still unresponsive to meds. Why it did not show up as spasms sooner, we may never know.
dirtyelectronic 1 year ago
my son does this and has been diagnosed with west syndrome epilepsy
giaafterdark 2 years ago
@giaafterdark Yes, we now know that they are. However, no EEG (including 24 hour video which did capture several events) ever revealed any abnormalities. Nor was their anything wrong with her CAT, MRI, or PET. We even tried anti-seizure meds just in case. No effect. However, after a massive regression just a few weeks after this video, we had yet another 24 hour EEG. It revealed Infantile Spasms. It is still unresponsive to meds. Why it did not show up as spasms sooner, we may never know.
dirtyelectronic 1 year ago
Comment removed
anaisgh12 1 year ago
Oh my god, how awful. My 3 month old is on prevacid fast tabs (7.5 mgs) once a day and domperidone as well. What scares me is the final shots of your baby in bed - my son does the same thing - I thought it was just the moro reflex? How can I tell if it isn't? I am getting scared now, thinking it could be more than reflux. Any suggestions? Thanks so much.
leahstraatsma 2 years ago
Don't worry yet. Most kids that do that who have reflux legitimately just have a little Sandifer's Syndrome. (Harmless involuntary reaction to the pain of reflux, like hiccups.) In our case, yes, Zoe now at 14 months old very clearly has some severe problems, developmental and otherwise, that have yet to be formally diagnosed. But you shouldn't worry. Odds are, your son just has some tough GERD that he'll grow out of.
dirtyelectronic 2 years ago
@dirtyelectronic how is Zoe now i think my daughter has this she gets an mri on tuesday im freakin out
whiteface77 2 years ago
I too am in the process of getting my son properly diagnosed. These videos are awful to watch because he's just a baby but they have helped me as well. My son has done this since the second day of his life and I am still struggling with doctors to have him properly diagnosed. I'm not having much luck so I'm going to head to Toronto Sick Kids Hospital. I have never heard of Hirschsprung Disease, my son has also had major issues with constipation since he was born.
lb101073 2 years ago
My Gastro doesn't think it's Hirschsprung upon a rectal examination last month, but I've learned such things are never definitive. Still, we remain without any diagnosis, and things are actually getting worse, not better. If you have any success diagnosing your son at Toronto, I'd appreciate the info. I will certainly do the same if we get any answers. (As you can tell, I'm making just about everything that happens public. Easy to find.)
dirtyelectronic 2 years ago
I will definately let you know what happens and how things went. I feel your frustration because we are going thru the same thing. I saw my GP last week and he gave me another perscription for Prevacid (same dose as before) and never ordered any tests. If I want to see our Pediatrician then I have to wait 2 months. I'm not giving him the meds (I know for a fact they don't work, not that dose anyways). We are just going to go to Sick Kids hospital. I'm also taking my videos with me.
lb101073 2 years ago
It is extraordinary the slow pace at which doctors move, even as a baby is tortured by pain daily.
Depending on the age of your baby, consider pushing for a higher dose of Prevacid. I suspect that Zoe has outgrown her prescription. I'm pushing anyone I can to let us try the outside edge of PPI acceptance to see if that indeed stops the pain again (as upping her Prevacid dose has worked to stop episodes for a couple of months in the past.)
dirtyelectronic 2 years ago
I am going to mention the dosing too, I know he needs something more. Plus the dose he was using was very minimal. I am going to try to book myself into a couple of different specialists (I wasn't going to but it's worth a try) but I don't think I will have much luck. It depends on the wait time. If I can't get in I am going to the toronto hospital. I will stay in touch and let you know how it turns out. I'm keeping my fingers crossed.
lb101073 2 years ago
Assuming you live in Canada (based on Toronto mention) and that's the trouble with all the waiting. If you get fed up and you want to come to the States, let me know. I live in Detroit, which is only 4 hours drive. (We've done the drive many times.) I could point you toward our best specialists (we have 2 good Gastroenterologists, etc.) - even find out-of-pocket cost of a visit for you...
dirtyelectronic 2 years ago
Thank you very much, that is what we will have to do if nothing comes of all of this. I do think once he is tested at the Toronto Sick Children's hospital this will all be sorted out and we can then begin to treat whatever is hurting Liam. You are right about the wait it is ridiculous sometimes. I will definately keep you posted on how things go and the outcome from the Toronto hospital. Thanks again...:)
lb101073 2 years ago
Thank you so much for posting this video. Up until today my 11.5 month olds "jolts" were not really tied into any dx. He had been dx'd with BPT (Benign Paroxysmal Torticollis) but our neurologist could not explain the myoclonic seizures. Sandifers is a close relative to BPT and after seing your baby I know that that's what he has. Not BPT. Through this video we can hopefully get him on reflux medications and help him get better. Thank you!
-Tina (Cam's mommy)
loganjsmommy1978 2 years ago
You're quite welcome. Zoe is now 13 months old, and while we still know the trigger (food), we've had little-to-no luck with reflux treatment. She's tried most everything there is, but the episodes still come after eating, as strong as ever.
We see a new (3rd) gastro doctor on Thursday. We're going to try and get him to look into bowel issues (like Hirschsprung's disease) as the possible root cause, as Zoe has also always had constipation issues.
Good luck with Cam. I hope treatment works.
dirtyelectronic 2 years ago
How often does Zoe have these episodes? My son is having similar episodes every three weeks and neurologist does not think it is a seizure.
edgedriver 2 years ago
Zoe is now 1 year old, and the episodes now seem much more clearly linked to food/meals and are happening about 30-60 minutes after each feeding. All docs now agree that something in the Gastro department is the cause.
If your son is doing something similar, my advice - having been REALLY down this road in every way - is ask your Neurologist to do an MRI and an EEG. No use risking his health not knowing ('cause if it is seizures, you could treat 'em.), and neither test is dangerous.
dirtyelectronic 2 years ago
We have done both and they are abnormal, but do not show signs of seizure activity. She saw a video that we took and has suggested we see our pediatrician in the morning to get on zantac. I guess we will have to wait and see. Thanks
edgedriver 2 years ago