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-> Children's Health
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amother
OP
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 Sun, Nov 08 2020, 1:01 am
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Did you try the ketogenic diet?
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FranticFrummie
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Sun, Nov 08 2020, 3:28 am
For an infant? I wouldn't do anything without a doctor and a dietician.
For anything spasm related, my first thought is always to supplement with magnesium.
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browser
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Sun, Nov 08 2020, 4:47 am
Make sure you are getting lots of minerals and healthy fats
Magnesium
Sardines would be a great source of both minerals and fats
Take trace minerals and sea kelp
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chmom
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Sun, Nov 08 2020, 6:31 am
Infantile spasms is a form of epilepsy
I wouldn’t do anything without speaking to your doctor
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amother
Navy
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Sun, Nov 08 2020, 7:01 am
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Please do not put a baby on any kind of restrictive diet without discussing with the baby’s doctor
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amother
Royalblue
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Sun, Nov 08 2020, 7:35 am
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amother
OP
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Sun, Nov 08 2020, 9:03 am
She’s on different medications for a while but still having many seizures.
Of course we wouldn’t do anything without doctor but want to hear from a moms experience perspective too.
Started before vaccines, thank you very much.
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amother
Vermilion
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Sun, Nov 08 2020, 10:09 am
I don't know much but there is a strain of marijuana that is supposed to be helpful. Charlotte's Web
Bring it up with the baby's doctor
Also, about another who suggested vaccine reaction, to clarify to op, newborns get the hep b vaccine at birth so there is no baseline if anything goes wrong afterward.
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amother
OP
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Sun, Nov 08 2020, 10:13 am
Can we please not make this about vaccines?
My babies don’t get hep b at birth
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simcha2
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Sun, Nov 08 2020, 10:19 am
Have they had an EEG?
What does your neurologist say?
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yy
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Sun, Nov 08 2020, 10:20 am
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My son is on the ketogenic diet for epilepsy, not infantile spasms, but I’m on a Facebook group called epilepsy-the ketogenic way and it’s a wealth of information. I’m sure lots of people can help you there.
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amother
Copper
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Sun, Nov 08 2020, 10:38 am
| amother [ Vermilion ] wrote: | I don't know much but there is a strain of marijuana that is supposed to be helpful. Charlotte's Web
Bring it up with the baby's doctor
Also, about another who suggested vaccine reaction, to clarify to op, newborns get the hep b vaccine at birth so there is no baseline if anything goes wrong afterward. |
My baby was fully on the vaccine schedule and did not get hep b at birth. NYU.
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heidi
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Sun, Nov 08 2020, 11:38 am
OP is asking a serious question about an extremely serious medical condition.
While I think she should be asking her doctor, please refrain from blaming her or vaccines.
OP, I have experience with the ketogenic diet as a layperson in the field.
You are welcome to PM me.
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amother
OP
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Sun, Nov 08 2020, 12:43 pm
| heidi wrote: | OP is asking a serious question about an extremely serious medical condition.
While I think she should be asking her doctor, please refrain from blaming her or vaccines.
OP, I have experience with the ketogenic diet as a layperson in the field.
You are welcome to PM me. |
Thanks
In touch with neuro but he wants to go to extreme treatment. want to discuss keto diet with him but first want to hear if anyone did it & actually saw improvement. I like to be as informed I can before speaking to doc.
Thanks yy. Will see if I can get access.
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snowflake1
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Sun, Nov 08 2020, 10:31 pm
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Always get a second opinion
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amother
Apricot
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Sun, Nov 08 2020, 10:33 pm
| amother [ OP ] wrote: | Thanks
In touch with neuro but he wants to go to extreme treatment. want to discuss keto diet with him but first want to hear if anyone did it & actually saw improvement. I like to be as informed I can before speaking to doc.
Thanks yy. Will see if I can get access. |
What's extreme treatment? The thing to keep in mind is its important to try to stop the seizures because they can damage your baby's brain Gd forbid.
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amother
Turquoise
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Sun, Nov 08 2020, 11:07 pm
You don’t mention how old your child is, functioning level etc.
it makes a difference because for an active child, who can take food alone, it is extremely difficult to follow.
Also, will take a lot of work on your end for the food prep.
I’ve seen people swear by it, and some say it didn’t help at all (I work in the special needs field).
You’ll only know if you try. If the extreme treatment your referring to is neuro surgery, you might want to try the diet first.
Did you try epidiolex? (That’s the marijuana based drug iirc).
Good luck with whichever way you choose to move forward. It’s not an easy decision...
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amother
OP
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Mon, Nov 09 2020, 9:08 am
| amother [ Turquoise ] wrote: | You don’t mention how old your child is, functioning level etc.
it makes a difference because for an active child, who can take food alone, it is extremely difficult to follow.
Also, will take a lot of work on your end for the food prep.
I’ve seen people swear by it, and some say it didn’t help at all (I work in the special needs field).
You’ll only know if you try. If the extreme treatment your referring to is neuro surgery, you might want to try the diet first.
Did you try epidiolex? (That’s the marijuana based drug iirc).
Good luck with whichever way you choose to move forward. It’s not an easy decision... |
It would be formula.
Thanks!
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amother
Turquoise
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Mon, Nov 09 2020, 3:24 pm
| amother [ OP ] wrote: | It would be formula.
Thanks! |
That’s way easier on many levels...from what I’ve seen, I’d say go for it.
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