Meldonium And Taurine For Adhd, Autism

[Lucha]

Good day and many thanks every person on this forum. Your questions, answers, discussions contents so many infomation as it is difficult to stop reading. I try to educate myself and to make decisions on my own but sometimes cannot.

I have a 3 years daughter (born preterm with very small weight - 1kg 900gr) with different problems.
Doctors think they a phsycological but I think that are physiological (metabolic).

There are some of them:
borderline low fasting insulin - 2.5
bordeline low t3 and t4 in the morning
borderline high tsh - 3
high AST
very thick blood (clotting in tube while taking test)
high hegh and low weigh
light connective tissue hypoplasia
low head and face feachers (not microcephaly but still)
picky eater or not eater or sugar only eater
rotten apples smell sometimes
extremly weakness sometimes as she cannot go
foot pain in the night
sometimes palmar erythema, sometimes white bloodless (like rubbish) palms
different types of hyper or hypo pigmentation over the body
spontaneous agressive moments she cannot explain
spontaneous words without sense (not often)

Doctors say: "Her health is normal. She just has adhd (may be autism in future), no sugar, no sweets, more water, more grains, don't speak to her when she cry, close her in her room when she doesn't want to sleep and so on... Be strict."

Not ready to give her thyroid and didn't see effect from vitamins.
Taking some searching decided to take a chance for taurine (or just gaba?) and meldonium. But have doubts.

First one: taurine and growth hormone (she is very tall, much taller then all children around and her maby growth pain in foot too).
Effects of taurine on seizures and growth hormone release in epileptic patients. - PubMed - NCBI

Second one: glycolysis is stimulated directly via Mildronate
Mildronate (Meldonium) in professional sports – monitoring doping control urine samples using hydrophilic interaction liquid chromatography – high resolution/high accuracy mass spectrometry
as i understand glycolysis isn't optimal way especially for children with adhd.

Thanks in advance for any thoughts.

 

[paymanz]

Taurine is safe, you can try it to see how she reacts to it, of curse with low dosage.

Idk how safe is Mildronate is for small kids that age.

I also want suggest biotin as there is reports of deficiency in autism kids,especially in their brain.biotin is important for sugar metabolism.its safe to try these vitamin ,biotin,thiamine.

I think they are lower in creating level too.at least some of them.

 

[Thoushant]

Hello,
I don't have anything specific to say, I don't know what doctors tested and basing their conclusion on. The symptoms you presented sound all over the place, so to me I'm inclined to say something that can hit most areas can be the cause.
The first thing that cam to my mind, due to her tall stature and connective tissue is
Marfan syndrome - Wikipedia
It's probably not, as doctors would have recognized it I assume, but you can see differential diagnosis in the link for smilair (and rare) conditions, so maybe something can show up and you can test for it.
I dislike the genetic determinism of the links I'm sending, I think they can tie to metabolism and therefore can be more manageable than wiki presents, so it's only so you have a better understanding of where to look.

Besides that it could be some mineral issue, so either abnormal use of a mineral, accumulation of another that disables others etc. Minerals are needed for vitamin function and enzyme throughout the body. Some genetic disorders hit mineral transport proteins.
I recommend a hair mineral test for a specific clue for which mineral might be affected. It could be a rare genetic condition of mineral accumulation, or inability to handle a mineral. so again, just so you can have a better picture to know where to look. ARL Mineral Information
I get you want to help her with supplements, I have a little brother with health issues, I think it's also important to know what you are doing, before trying anything. "First do no harm"
And I don't agree with the doctor's approach in being firm(And like I said, I've been through smilair with my little brother, it is a really hard situation to understand, so their recommendations might be coming from a good place, but they haven't lived through it, or they can't consider it all, human nature). She is obviously dealing with something, no need to add parental complexities later in life on top of that.

 

[Lucha]

O, god! Thanks a lot!

Yes, i heard she had "such a nice long fingers like musician" so many times. It doesn't matter has she real marfan or just a condition that mimics it. She has a SMA deletion which mean she may has a silimilar condition (not full disease but metabolic disoders).

She extremely thin with several lipodystrophy spots. High ferritin and hemoglobin. But... I am afraid going to doctor as i just read about estrogen as "golden standart" for too high children in our land.

Progesterone or tocopherol? Both? Orally or transdermally? Seems transdermaly may be not enough.

Copper and zinc to prevent iron overload. Calcium, magnesium.

It seems that i shoudn't neglect t3.

 

[Thoushant]

Yes, i heard she had "such a nice long fingers like musician" so many times. It doesn't matter has she real marfan or just a condition that mimics it. She has a SMA deletion which mean she may has a silimilar condition (not full disease but metabolic disoders).

She extremely thin with several lipodystrophy spots. High ferritin and hemoglobin. But... I am afraid going to doctor as i just read about estrogen as "golden standart" for too high children in our land.

Sounds unfortunate, but managable, and I'm happy she has parents willing to take the issue in own hand.
So SMA deletion, spinal muscular atrophy deletion? is it SMN1 or SMN2(Most common is SMN1, it seems)
So she doesn't not have severe form of SMA, more symptoms of? The muscle weakness symptoms when did they present?
I think if you find a doctor who is willing to listen and work with you, you will have no fear of treatment forced on you.
I understand the confusion of what to do, lucily if we narrow down the problem we have much better understanding of what to aim for, and RPF has really valuable contributions of minerals and potentially balance.
I think a hair mineral test is what is needed other wise we are shooting in the dark. I think the SMA deletion can be really worthwhile to investigate, and mineral or vitamin supplements should be dosed in according to how the SMA affects mineral use in the body.

 

[Rivka]

What's her diet like?

 

[Lucha]

Thanks a lot for for answers. This helps me to think. Try to find hair tests in our city. Something tell me that her iron is high (pigment spots, sluggish liver (ultrasound), low body temperature, constant infections). Some words about a diet below.

I have read that this deletion (as cystic fibrosis deletion) influences life and healh of a carrier very much. It's time to collect information. So, nowadays SMA is not a disease but information which can help understand her condition and "adhd-autism-etc". For example: she cannot wear clothes as her finger is not strong enough. Not doesn't want but cannot. She is impulsive not because of psycological problem, she is weak and all her life is physical load if not stress => cortisol, glucagon, adrenalin and so on. Just primitive thoughts for beginning.

Think that will be useful to begin something like blog to organize information and thoughts.

Her diet is very simple as she has no appetit.

8:00 Glass of milk with sugar and salt in the morning.
11:00 Peace of chocolate with 30 gramm of sweet cottage cheese (local sweets) as second breakfast.
14:00 Cabbage and potatoes soup with chicken (fatless pork ribs) or spagetti with butter for dinner. Sometimes no dinner, just milk.
17:00 Sweet tea.
19:00 Tablespoon of ice cream or baby banana in the evening.
22:00 Glass of milk with sugar and salt before sleep.

That's all. No eggs, no juices (except apple juice), no everything else. Everybody ask me: Эwhat do you do to make your baby so clean? No allergy at all!" Ha-ha! No food, no allergens.

Started taurine, vitamin e, progesterone cream for now. Think further.

 

[Broken man]

Taurine and b vitamins are great for start. What about her digestion? For taurine, I have opinion, if you want see some success, use higher dosages from start and watch for her response. Read this just for overal info. I think that taurine is the most important thing for improving metabolism. My case was that when I started with taurine, I got very bad bloating which I mitigate with cypro and after 3 days, I could use 5 g without problem. If you dont have cypro, start with smaller dosages more times. I recommend higher dosage from start because its only way how you will know if vitamin is really working.

 

[Lucha]

Closed. Made other thread.