Were these seizures???

October 7, 2011

My 5 year old son and I were at his chiropractor appt. The chiro had

laying on his back, and was just feeling for different nerve endings on his

scalp and neck (no adjustments). He was looking for any possible causes for

general discomfort, which is experiencing a lot of lately. He's done this

with me before, too - it feels like a medium-pressure scalp massage (nice,

actually!). It all lasted maybe 2 minutes, and within that time, 's eyes

twice made very rapid, jerky movements to the upper-right. He has no history of

seizures, and I've never seen him do this before. Each incident only lasted

about 2-3 seconds. The chiro and I both saw both incidents, and we both thought

" seizure?! " He swore to me that he wasn't doing anything that should result in

eye movement like that.

was very upset as soon as he saw the chiro today, which is unusual. He was

crying and whimpering through most of the session, and even trembling a very

little bit. As soon as the session was over, he sat in the lobby, and was as

calm and " normal " as can be.

Do these sound like seizures? is non-verbal, so he can't tell us what he's

experiencing. I'm watching him like a hawk right now, and everything seems

fine. Should I get in touch with his pediatrician? Ask for a referral to a

neurologist? 24 hr eeg? Just wait?

Any advice and/or support is greatly appreciated. Thank-you!

October 7, 2011

Could be. Consider EEG and/or Spect. Pamela From: mb12valtrex [mailto:mb12valtrex ] On Behalf Of SeraphineSent: Friday, October 07, 2011 6:53 PMTo: mb12valtrex Subject: Were these seizures??? My 5 year old son and I were at his chiropractor appt. The chiro had laying on his back, and was just feeling for different nerve endings on his scalp and neck (no adjustments). He was looking for any possible causes for general discomfort, which is experiencing a lot of lately. He's done this with me before, too - it feels like a medium-pressure scalp massage (nice, actually!). It all lasted maybe 2 minutes, and within that time, 's eyes twice made very rapid, jerky movements to the upper-right. He has no history of seizures, and I've never seen him do this before. Each incident only lasted about 2-3 seconds. The chiro and I both saw both incidents, and we both thought " seizure?! " He swore to me that he wasn't doing anything that should result in eye movement like that. was very upset as soon as he saw the chiro today, which is unusual. He was crying and whimpering through most of the session, and even trembling a very little bit. As soon as the session was over, he sat in the lobby, and was as calm and " normal " as can be. Do these sound like seizures? is non-verbal, so he can't tell us what he's experiencing. I'm watching him like a hawk right now, and everything seems fine. Should I get in touch with his pediatrician? Ask for a referral to a neurologist? 24 hr eeg? Just wait?Any advice and/or support is greatly appreciated. Thank-you!

October 7, 2011

, My son does have seizures, this could be a mild focal or frontal lobe seizure. They have so many names now for so many types. Everyone seems to classify them differently.

Has the Chiro ever called what he is doing "Craniosacral massage"? If so Craniosacral massage can have both great benefits and or adverse effects in some of our kids with neuro involvement. I tried this for my son in pre-seizure days to see if if it would help him with speech and verbal abilities. It did help the first 3 sessions, then session 4 he got a really bad ear infection and throat infection (he hadn't one in more than 4 years at that time) then we got that cleared up and went two more times, only for this to happen again. The therapist told me that sometimes this can happen and what it meant to her was that the CNS fluid entering the brain was more than enough and the massage (very gentle it was, you can barely feel the pressure, Shampoo girls put more pressure on the head than this) was allowing more CNS fluid to enter the brain than what was leaving. This would sometimes create pockets of fluid in the ear canals and else where in the brain and could cause these issues. If the child has too much fluid in the brain then hydrocephalus (High pressure, and Normal pressure hydro also) can be an issue, and surely seizures could be a result, as well as agitation, sensitivity to light, headaches and much more. He could still just have some nerve sensitivity too and not necessarily Hydro or Normal Pressure Hydro. I would watch him for a day or two and see if it happens again. If it doesn't I would avoid the chiro with him at this point. We've never caught seizures from any testing on my son, even overnight testing, yet when he has them they are full blown grandmals. The first two I called 911 and went to the hospital with him unconscious. Scary they are...I've determined they are hormonal for him and we've corrected a lot of it nutritionally and with supplements. My neuro is so upset with me as we won't do seizure meds. He was having them once every 3 weeks like clock work than he'd have 2 -4 seizures in a day every 3 weeks like clock work. I now have them down to one seizure every 3 -4 months on average and we use diastat rectal (rectal valium basically) at the onset of the seizure if it last more than 2 minutes. (we do 2 minutes to keep him from having breathing issues, as he gets bad if it lasts longer). Kids with his same syndrome all over the world who have seizures are on seizure meds and still having seizures. Some more frequently than he does. Those who started meds with this same disease, most have a feeding tube by 8 months to a year later. For our disease Sanfilippo syndrome, it really messes with our kids neurologically. I avoid meds until absolutely necessary. :-(

I hope this helps. It is scary at first and after 4 years, I still hate seizures. A good neuro is an asset if this occurs again, but even ours the first two times wanted to wait it out and see if any patterns developed. If you want a good place to track everything the day of, during and after seizures or suspected seizures, there's a super site at https://www.seizuretracker.com/ It's free and easy to use once you navigate and look around a little.

Patty ~ Mom to with Sanfiippo Syndrome, much like Autism in the early stages. Many Sanfilippo kids are mis dx'd in the beginning as Autism, including . I wish Austism was the dx instead of what we got. :-( Gotta love them either way.. :-)

Were these seizures???

My 5 year old son and I were at his chiropractor appt. The chiro had laying on his back, and was just feeling for different nerve endings on his scalp and neck (no adjustments). He was looking for any possible causes for general discomfort, which is experiencing a lot of lately. He's done this with me before, too - it feels like a medium-pressure scalp massage (nice, actually!). It all lasted maybe 2 minutes, and within that time, 's eyes twice made very rapid, jerky movements to the upper-right. He has no history of seizures, and I've never seen him do this before. Each incident only lasted about 2-3 seconds. The chiro and I both saw both incidents, and we both thought "seizure?!" He swore to me that he wasn't doing anything that should result in eye movement like that.

was very upset as soon as he saw the chiro today, which is unusual. He was crying and whimpering through most of the session, and even trembling a very little bit. As soon as the session was over, he sat in the lobby, and was as calm and "normal" as can be.

Do these sound like seizures? is non-verbal, so he can't tell us what he's experiencing. I'm watching him like a hawk right now, and everything seems fine. Should I get in touch with his pediatrician? Ask for a referral to a neurologist? 24 hr eeg? Just wait?

Any advice and/or support is greatly appreciated. Thank-you!

October 9, 2011

Patty, great post!

I've never heard of Sanfilippo Syndrome before. wow! My heart and prayers go out to you and your family. Do you treat your son biomedically for this? Is he able to take enzymes or follow a diet to help slow down the progression? I'm surprised I've never come across this with all the clicking around I do.

-Tammy

To: mb12valtrex Sent: Friday, October 7, 2011 9:34 PMSubject: Re: Were these seizures???

, My son does have seizures, this could be a mild focal or frontal lobe seizure. They have so many names now for so many types. Everyone seems to classify them differently.

Has the Chiro ever called what he is doing "Craniosacral massage"? If so Craniosacral massage can have both great benefits and or adverse effects in some of our kids with neuro involvement. I tried this for my son in pre-seizure days to see if if it would help him with speech and verbal abilities. It did help the first 3 sessions, then session 4 he got a really bad ear infection and throat infection (he hadn't one in more than 4 years at that time) then we got that cleared up and went two more times, only for this to happen again. The therapist told me that sometimes this can happen and what it meant to her was that the CNS fluid entering the brain was more than enough and the massage (very gentle it was, you can barely feel the pressure, Shampoo girls put more pressure on the head than this) was allowing more CNS fluid to enter the brain than what was leaving. This would sometimes create pockets of fluid in the ear canals

and else where in the brain and could cause these issues. If the child has too much fluid in the brain then hydrocephalus (High pressure, and Normal pressure hydro also) can be an issue, and surely seizures could be a result, as well as agitation, sensitivity to light, headaches and much more. He could still just have some nerve sensitivity too and not necessarily Hydro or Normal Pressure Hydro. I would watch him for a day or two and see if it happens again. If it doesn't I would avoid the chiro with him at this point. We've never caught seizures from any testing on my son, even overnight testing, yet when he has them they are full blown grandmals. The first two I called 911 and went to the hospital with him unconscious. Scary they are...I've determined they are hormonal for him and we've corrected a lot of it nutritionally and with supplements. My neuro is so upset with me as we won't do seizure meds. He was having them once

every 3 weeks like clock work than he'd have 2 -4 seizures in a day every 3 weeks like clock work. I now have them down to one seizure every 3 -4 months on average and we use diastat rectal (rectal valium basically) at the onset of the seizure if it last more than 2 minutes. (we do 2 minutes to keep him from having breathing issues, as he gets bad if it lasts longer). Kids with his same syndrome all over the world who have seizures are on seizure meds and still having seizures. Some more frequently than he does. Those who started meds with this same disease, most have a feeding tube by 8 months to a year later. For our disease Sanfilippo syndrome, it really messes with our kids neurologically. I avoid meds until absolutely necessary. :-(

I hope this helps. It is scary at first and after 4 years, I still hate seizures. A good neuro is an asset if this occurs again, but even ours the first two times wanted to wait it out and see if any patterns developed. If you want a good place to track everything the day of, during and after seizures or suspected seizures, there's a super site at https://www.seizuretracker.com/ It's free and easy to use once you navigate and look around a little.

Patty ~ Mom to with Sanfiippo Syndrome, much like Autism in the early stages. Many Sanfilippo kids are mis dx'd in the beginning as Autism, including . I wish Austism was the dx instead of what we got. :-( Gotta love them either way.. :-)

Were these seizures???

My 5 year old son and I were at his chiropractor appt. The chiro had laying on his back, and was just feeling for different nerve endings on his scalp and neck (no adjustments). He was looking for any possible causes for general discomfort, which is experiencing a lot of lately. He's done this with me before, too - it feels like a medium-pressure scalp massage (nice, actually!). It all lasted maybe 2 minutes, and within that time, 's eyes twice made very rapid, jerky movements to the upper-right. He has no history of seizures, and I've never seen him do this before. Each incident only lasted about 2-3 seconds. The chiro and I both saw both incidents, and we both thought "seizure?!" He swore to me that he wasn't doing anything that should result in eye movement like that. was very upset as soon as he saw the chiro today, which is unusual. He was crying and whimpering through most of the session, and even trembling a very

little bit. As soon as the session was over, he sat in the lobby, and was as calm and "normal" as can be. Do these sound like seizures? is non-verbal, so he can't tell us what he's experiencing. I'm watching him like a hawk right now, and everything seems fine. Should I get in touch with his pediatrician? Ask for a referral to a neurologist? 24 hr eeg? Just wait?Any advice and/or support is greatly appreciated. Thank-you!

October 9, 2011

HI Tammy,

Yes I do treat him bio med. No drugs yet and he is 16 yrs old.(other than Ibuprofen) I got lucky when he was 8 yrs old and had a metabolic geneticist come in as our new doc. He was very supportive (and helpful with the route I was choosing) The original one was not. :-( Anyway we've done well considering all things. We have new doc the past 3 years, and originally she was skeptical, but now she is of great support after seeing how well things go aftyer we figure it out. She will do whatever suporting testing I need now. does not talk anymore and is in diapers, he can still eat by mouth and walk independently, but is cognitively that of a 3 month - 3 yr old. depending on what you are doing. He got to be about 5 yr or 6 yrs in all aspects before regression started. (I was told to go home and keep him comfortable when he started regressing, told there was nothing we can do and he die by 10 - 12 yrs. HA... I am fighter. No one was doing biomed with Sanfilippo back then, now we have a few parents around the world doing it. There's is one in Switzerland I found who has been doing about as long as I have. (10 yrs now) I use GPL for labs a whenever I need a fine tune up. I use JHU here in Baltimore for my labs mostly when needed, but they do not do the specialty stuff GPL can do for me.

has been losing his vision now, it's corticol vision impairment, the eye itself is good, no retina, macular or optic nerve issues. :-( A new battle now. Not sure if I can overcome this one. The disease is slowly progressing, he most likely would have been gone by now if not for biomed. Most don't live past 10 -12 yrs when they only have 1% or less of the active enzyme they need. We are or the edge or gene therapy right now. Might be too late for , but we're working hard at finding a cure for the kids to come. http://www.teamsanfilippo.org I am the board for the medical consult. I love the posts that come thru this group here. Sometimes something comes thru that I too can use for , or sometimes if gives me an avenue to research in case of. I'm getting ready to do a new OAT Yeast combo and Zinc/ copper test now with Great Plains. We've hit a glitch after 2 yrs of pretty smooth sailing. We've got yeast that won't leave no matter... ergh.. been trying everything int he arsenal since Sept 9th. Sept 22nd some behaviors started that are not him at all. I am beginning to think Gallbladder may be involved though diet wise.. it should not be. But lysosomal storage in system from sanfilippo could be an issue as it efffects liver and spleen readily. I do a lot now for the liver and dome pretty well keeping AST and ALT within reason. . Theses are day I wish he could talk. I will be sending videos to the doc tonight and request an ultra sound and CT of the gallbladder and posisbly run some typical labs while waiting to do the GPL labs as well. Such puzzles our kids are. This too we shall overcome. Just of matter of when and how.

has a webpage too, you can read some of our past history and see videos of his better days from 10 yrs old back, the newer videos are not as good. http://www.caringbridge.org/md/myjesse My hubby and I were saying today... looks like the smooth ride is over for a while, time to try and fix another pothole in the road. LOL!! It's hard on both of us, as I am over 53 yrs and almost he is 60yrs and had many back surgeries and issues, so most of it is on me. is wieghing 130 lbs now and about 5 '2". Growing to be a big boy for Sanfilippo.

Thank God he can still walk, ambulation has been one thing we have worked hard at maintaining. Make life a wee bit easier.

Thanks for asking Tammy... Hope I didn't rattle on too long. :-)

Patty

October 9, 2011

No! You did not rattle on too long! Thank you so much for sharing some of 's story. What a fighter and so blessed to have such loving, determined parents. I will keep you all in my prayers. I hope and pray you are able to find the answers you need. God bless your family. xoxoxox

-Tammy

To: mb12valtrex Sent: Sunday, October 9, 2011 9:03 PMSubject: Re: Were these seizures???

..

Thank God he can still walk, ambulation has been one thing we have worked hard at maintaining. Make life a wee bit easier.

Thanks for asking Tammy... Hope I didn't rattle on too long. :-)

Patty

October 9, 2011

Thanks Tammy! I will let you know what we find out when we do.

Patty

Re: Were these seizures???

..

Thank God he can still walk, ambulation has been one thing we have worked hard at maintaining. Make life a wee bit easier.

Thanks for asking Tammy... Hope I didn't rattle on too long. :-)

Patty

October 11, 2011

My son has had those. My son's Lyme dr called them occular gyro reflexes,

triggered by laying on your back and looking up, usually in Lyme patients.

>

> My 5 year old son and I were at his chiropractor appt. The chiro had