First post. Seeking resources for pediatric seizures

[evergreen]

You're welcome. Glad to try to help.

The house I grew up in with my two siblings was built in 1950 and had copper plumbing (with lead solder). Both of my siblings became mentally incapacitated in their teens and both were diagnosed with paranoid schizophrenia in their early twenties. I don't wish that family disaster on anyone.

I am so sorry to hear this. The lead issue is horrifying.
There is so much useful information here.

 

[evergreen]

Oh, how I do wish we could still e-mail dear Dr. Peat...

I found this discussion re progesterone in children and it seems that Dr. Peat has discussed it some, if it is any help...

Is It Safe To Give A 4 Year Old Girl Progesterone?

Hello everyone! My daughter (who is 4) was born with high estrogen levels, the doctor knew because she had swollen nipples. Her doctor at the time said that we would wait it out and around 6 months the swelling disappeared so I thought nothing of it. I have successfully used progesterone for...

raypeatforum.com

ETA: There's some good stuff he writes about progesterone here.

https://ia802902.us.archive.org/11/items/ProgesteroneInOrthomolecularMedicine/Progesterone%20in%20Orthomolecular%20Medicine%20.pdf

Yes, I certainly had hoped to email Dr. Peat. There is a lot here, and quite a lively debate!

 

[evergreen]

Magnesium carbonate doesn't have the unpleasant taste other forms of magnesium have. I buy it as a powder, and when I mix it with food, I do not notice the taste at all. Another way to help her with the magnesium are epsom salt baths. Vitamin E and vitamin D if you buy it in bottles can be mixed with food too, though I think I would try the transdermal route with the little girl.

Good points. We do epsom salt baths. Transdermal makes sense.

 

[Izzybelle]

Yes, I certainly had hoped to email Dr. Peat. There is a lot here, and quite a lively debate!

Did you see this thread? It has some similarities (sorry don't have time to read it all the way through). Apparently the member did e-mail Ray Peat and got a response. Seems the concern with progesterone use was the fact that his child is a male.

Please Help My 3 Year Old Son Who His Suffering From Epilepsy

Dear forum members I would be highly grateful if some of the experts on this forum could give their opinion on the case of my poor 3 year old son who is currently suffering from frequent nocturnal grand mal seizures. I’m currently at my wit’s end and I don’t know how to deal with the following...

raypeatforum.com

I wrote an email to Ray Peat after my last posting. This was his response:

The reason cortisol rises to a peak at dawn is that prolonged darkness is stressful. As blood glucose falls during the night, tissues become more sensitive to irritation, and bacterial toxins from the intestine, acting directly on nerves, and absorbed into the circulation, activate histamine and other regulatory substances. Foods that are slow to digest can become toxic irritants during the night. People have noticed that both fasting and “ketogenic” diets can prevent seizures—I think part of the effect is just eliminating the irritating, bacteria-supporting, foods. (Some people have noticed kids’ seizures stopping while they take antibiotics. I think this is because the intestinal toxins are reduced.) The carbonic anhydrase inhibitor acetazolamide was tested because of an idea that it would create conditions similar to fasting or a ketogenic diet, but its actual effect is to prevent the intracellular alkalinity produced by stress. The anti-androgenic effects of progesterone wouldn’t be an immediate issue, but it could be with prolonged use. I think you’ll probably be able to identify foods that are causing it. A bedtime snack that includes quite a bit of sugar and saturated fat, such as gum-free ice cream, can prevent some of the bowel-provoked nighttime problems. Vitamin D and calcium are essential for nerve stability.

 

[evergreen]

Did you see this thread? It has some similarities (sorry don't have time to read it all the way through). Apparently the member did e-mail Ray Peat and got a response. Seems the concern with progesterone use was the fact that his child is a male.

Please Help My 3 Year Old Son Who His Suffering From Epilepsy

Dear forum members I would be highly grateful if some of the experts on this forum could give their opinion on the case of my poor 3 year old son who is currently suffering from frequent nocturnal grand mal seizures. I’m currently at my wit’s end and I don’t know how to deal with the following...

raypeatforum.com

I wrote an email to Ray Peat after my last posting. This was his response:

Thank you, yes. I read that in August and have reread the thread. A lot there.

 

[shanny]

Wow. Thank you. I am fully focused on this. At this point I started off giving her b6 as pyridoxine 50 mg. Daily and then switched to P5P 30-40. That was right before she had three intense and very different seizures so I dialed back the P5P and went back to pyridoxine 25. She gets red meat a few times a week but I am considering adding in a big complex. She’s not into smoothies which is my main way to deliver things so I’m puzzled about how to get all these supplements in, in addition to the anti-seizure meds.

There are liquid forms of B vitamins that I have used for people with compromised digestion, I'm sure these would be easy to mix very small doses into juice or spoonfuls of honey? Also, bulk supplements BulkSupplements.com | Pure Bulk Supplements, Vitamins and Minerals has each individual B vitamin in powder form and as long as you buy a scale, makes it pretty easy to make your own formulations. I have had people dose very small amounts throughout the day in juice or food, as I'm not a huge fan in general of supplementing but like mostlylurking posted, there are situations where these vitamins are extremely helpful!

 

[shanny]

Taurine and epilepsy

Treatment with taurine showed mixed results. It alleviated seizures in a subpopulation of patients, but its efficacy tends to vanish with time.

Taurine may treat seizure-associated brain damage.

This is most likely due to the bile acid production results of taurine use and aiding in reducing toxin load.

 

[Giraffe]

This is most likely due to the bile acid production results of taurine use and aiding in reducing toxin load.

Taurine has direct protective effect on cells and it plays a major role in brain development, plus it is depleted by anti-seizure meds.

Taurine - Regulator of cellular function - biocrates life sciences ag

Taurine is considered a “conditionally” essential amino acid, it plays significant role in many biological processes

biocrates.com

 

[shanny]

Taurine has direct protective effect on cells and it plays a major role in brain development, plus it is depleted by anti-seizure meds.

Taurine - Regulator of cellular function - biocrates life sciences ag

Taurine is considered a “conditionally” essential amino acid, it plays significant role in many biological processes

biocrates.com

Oh wow, thank you for that!

 

[evergreen]

You need to look up Karen Hurd and potentially consult with her. Her daughter's seizures (brought about by a toxic chemical event) were cured with her protocols. You also need to read up on NBMI.

Thank you for these resources.

 

[evergreen]

Thank you to everyone who took the time reply. I am now concerned that I overdid the p5p at 25/ 35 mg. My daughter had an 3 seizures of a much more violent and head focused quality only one week after introducing the p5p. She had already had 2 breakthrough seizures (the day before Thanksgiving and 12/10/22 )I have been reading about thiamine, taurine and many things about b6 Pyridoxine and p5p. I believe she has the MTHFR gene and will get the results soon. She has definitely shown high alkaline phosphatase. With the anxiety, sleep loss and taking care of 3.5 year old twins...my head is spinning at what to add or change and what products are the best. It's so different when considering such a young child. I want her off the seizure meds ASAP, but need to keep her safe. I have been diving into mineral balance and it's clearly essential and often spoken about in a superficial way. I have been in touch with someone who cleared seizures for 5 years working with Clark Englebert of nutritional analytics.

 

[Peatress]

Dr Peat was asked about seizures and alternatives to medication in this interview


View: https://www.youtube.com/watch?v=5-t5vgHW8gM&t=2308s

 

[evergreen]

thank you so useful. I have been puzzling about whether gelatin/ collagen are good for her. i cut out casein, which I had been putting in their smoothies.

 

[evergreen]

Children’s Relentless Seizures Halted By New Drug - News Center