Do any Members have any experience of Vasculitis?

I'm posting this in the hope that Someone may have experience of Vasculitis in Children.
I'be seen and sympathised with many Illness posts here but I never imagined for a second I'don't be the OP.
Sadly my future Stepdaughter is dangerously ill with Acute Renal Failure.
She is currently undergoing daily Plasma Exchange and Dialysis coupled with Blood Transfusions.
As utterly brilliant as all the Medical Staff are, I'm hoping that someone not from a Medical background may be able to offer some advice/support.
At present her condition dictates that a measure of her kidney function will not be available for a number of days so We're just waiting and hoping.
Thus far we'be been told numerous outcomes from the best to the worst.
Apologies if this seems a bit rushed but I'might trying to keep it together for Her and her Mum.

Mods, apologies for only just noticing the Health and Wellbeing forum. Feel free to amend as you wish.

a reply to: Cymru

Go to earthclinic

Just google it

And go to natural cures site, start researching

Start reading

People had success with apple cider vinegar 2 spoons a day with water, coconut oil

Even zymflamend, though its pricy

NOW HERE IS THE THING

It is possible these things can't help her. But I know for a fact when 5-7 spiritual people, enlightened people with good intentions, surround the person and put hands on her focusing their healing light into her

While also calling in Spirit of Jesus to help with what they are trying to do

Things happen, miraculous things, things I wouldn't even bother explaining to western doctors

a reply to: Cymru

Sorry dbl post

a reply to: Cymru

go to the doctor. google a general practitioner(or specialist, on second thought) in your area with expertise in treating that condition. you don't need homeopathic hit/miss remedies, you need a professional who has a whole heck of a lot of experience in successfully treating that--and probably many, many other--medical conditions.

Is your stepdaughter an adult, or a child?

If she's the latter, then to not get her to a doctor is simply criminal.
I don't know about yours but my doctors are legit.

and my tinfoil hat's permasealed onto my cranium. but i don't just disregard the usefulness of people who are doctors. OP, please go and google a specialist in your area, call them, make an appointment and then take them to that appointment. If you don't like what they say--then get a second opinion from another of the great options google will have provided if you did what I suggested please keep us updated.

a reply to: rukia
Thanks Rukia.
It appears the current situation did not come across in my original post. (Probably my fault)
She is currently in a Specialist Children's Renal Unit being treated by frankly, the most wonderful Human Beings I have ever met.
Until her condition is stabilised, we will not know the extent of any damage (God forbid,) and how this may affect Her in the future.
As wonderful as the Medical Staff are, I was hoping that someone on ATS might have experienced this and could offer an insight into their experiences post-treatment.

a reply to: Cymru

As a stepfather, I felt touched by your situation. I wish your family find all the stregth required for this situation.

When you can't give quantity of life, give quality of life.

a reply to: Cymru

Sorry fella, that's horrible news and always seems worse when happening to kids. They should be out living in the sunshine (when we get it!) instead of on the wards. A friend's daughter has CF and that's been a roller-coaster ride for the past 10 years I've known them. I'm only saying that because families and kids can be so resilient and positive outcomes seem to outnumber the negatives in the scheme of things.

I can't help from personal experience besides knowing someone with Lupus. So I hit up some searches and don't know if they'll help or just repeat the same things you already know. The medical sites say it's incurable and lifelong. They also say it's treatable and usually goes into remission which is good news.

Here's a pdf about quality of life under vasculitis. There doesn't seem to be any support forums out on the internet. In that light maybe it's worth posting a thread on a medical forum? There might be loads of parents wanting the same support/advice as you and waiting for the right website to provide the platform.

I hope it all works out for the best and you're all strong enough to get through the white-water periods.

a reply to: Cymru

I hope your daughter will be strong enough to fend off both this condition and the pharmaceuticals. I don't have any firsthand experience to offer but I read a few papers this morning trying to gauge how much Dr's understand.

I offer this summary for what it's worth.
Vasculitis is an auto-immune disease. The bodies immune system attacks it's own blood vessels. It's similar to Rheumatoid Arthritis which attacks joint tissue. There are a whole class of auto-immune diseases classified and each goes after specific proteins in the body. Could be joints, could be the brain, could be veins or could be nerve tissue. It's all bad when your own immune system is malfunctioning. Known triggers are infections and "pharmaceutical allergy" Of course that isn't specific. I think I know why.

Scary stuff. They don't know what causes it or have a good handle on the mechanisms tracing back to the immune malfunction. They don't have a good read of frequency either. There is a "spectrum" with this disease. Where have I heard that before? As you might imagine, the diagnostic signals are evolving rapidly so it's hard to tell if the frequency of the disease in children is going up or if the definition is changing. That rhymes with so many new freaky syndromes being documented. Too many to study and too many damn excuses if you ask me. There is no natural reason why auto-immune disease, cancer and allergies are increasing so fast in children.

When will people understand and respect how complex and important your native immune system is? It has to be strong yet selective so it doesn't kill you. Hacking it with a multitude of vaccines is really playing with fire. Many people will die or be damaged needlessly waiting for technocrats to admit they were misguided about how the human immune system should be optimized. Tragic.

a reply to: Cymru

I cant really anything to all the varied replies you are getting here.

Just to say nothing is ever placed upon us that God knows we cant handle.

Prayers from me to her..to you...and to your's.

Miracles and wonders happen everyday.

God bless..

MS
EMT/ERT

a reply to: Cymru

I am sorry to hear about you're step daughter. I was diagnosed with Behchet's disease. I am currently prescribed apoprednisone and colchesine to suppress my symptoms. I am not a doctor, but l can tell you from my personal experience that eating processes used foods make it worse, stress makes it worse, and winter time always has a negative effect on me. Good healthy food helps, but I personally have to avoid acidic foods like tomatoes which I love, sugary foods which I love, and often putting bread or bananas in my mouth will make my mouth ulcerate. So l personally am able to substitute with other foods. I find that Quinoa is one of the foods that I am able to eat and not feel abdominal discomfort. Veggies are good, but if they make me to gassy like brocolli does, l will be in pain for awhile.
I also refused pain medication because I have a personal belief that pain is there to tell you that you have a problem. I was recently considering talking to my doctor to get pain medication because my arthritis was getting so bad and just would not relent. My guy left his magnetic bracelet by accident when he left out of town, so l put it on my wrist for safe keeping and within two days my arthritic pain was 95% gone. I would have never believed that these bracelet's worked had I not felt the results for myself. The bracelet does not work on headaches or ulcers, but it does on arthritic pain This is my opinion, I know that the companies who make them are no longer allowed to make these claims, but l can still share my personal opinion with you. The bracelets have the magnets with the north polarity facing towards the skin, l do not know how they work, but I don't really care as long as it helps me. My personal reason for not wanting to use pain meds is because I do not want to become addicted and it takes a toll on the kidneys which I have had problems with since I was little, not to mention other internal organs. I would always suggest frequent visits with the doctor and keep a note book on all issues relating with the vasculitis since it can be easy to forget when you are at the Dr. Office.
So remember, stress is bad, mental and physical. Eating processed foods and sugars are bad, Quinoa is amazing food and maybe look into natural plants such as milk thistle seeds and greens, dandillion greens and pretty much anything you have been told is a weed is actually helpful, but any plant you decide to try should be researched first. Research, research, research, you will be pleasantly surprised.
I may not have been born into a religious family, but there are certain truths in the bible regarding the food you should eat and washing every day, to avoid the deadly sins and how to live a peaceful life. It is up to you to find out these truths and share them. It is the only way. Praise Jesus as he helped the sick, that was who he was. Do not forget that the word of God has also been manipulated by man for the agenda of power over others so you need to be careful and research.
I apologize if my words are not eloquent, but I try my best to speak the truth. May peace be with you always. Do you're best to keep you're family healthy and happy. Maybe as a start, go and check out YouTube channel Mayeax ministries and other channels with info about living off the land as God intended us to do.

a reply to: Cymru

P.S. It is also my personal opinion that all GMO food should be avoided, all irradiated food should be avoided and all food that has been spray with pesticides be avoided. Many countries don't do GMO, research. If you do decide to wild craft, never forage near a road side or if you see an animal corpse, do not pick in that area. Research these guidelines. Pretty much all corn in North America is GMO, so avoid if possible. Corn is pretty much useless unless it is processed into hominy anyway. When it is process into hominy it releases the niacine, but again, avoid GMO. Avoid Canola oil as it is genetically modified from the rape seed and is no good. Oils and fats are needed for proper digestive function yet we have been led to believe that these are bad for us. European countries have banned GMO's. Olive oils are good, coconut oils are good for higher temperature cooking, and I do like sunflower seed oil, but I have recently heard that it is a highly pesticides crop.
Oh and I found out about Quinoa from my Uncle who had to get a colostomy bag due to his bowels being removed from colitis. Quinoa was one of the foods that can be easily digested which is very important since the bowels are what absorb the nutrients and he doesn't have much left. He also moved out of the city and started growing his own foods, veggies and chickens and such, he also started eating more wild game and now drinks well water instead of city water which is chemically treated. He has since regained kidney and liver function to which he was informed should have been impossible. In short the doctors told him that he didn't have much longer to live and he is now living well which makes me so happy and gives me hope as well. I just need to save up enough money to leave this city and start living the way nature intended.

a reply to: Cymru

RESEARCH STINGING NETTLE TEA!

a reply to: Cymru

PLEASE PLEASE LOOK INTO STINGING NETTLE TEA.

a reply to: Cymru

nah i probably misread it--my bad. i hope that everything works out for you and your family. sounds really rough. I guess I don't really understand the condition. I just did some mini research and found " Among the factors that seem to trigger certain kinds of vasculitis are infections, like hepatitis B and streptococcus; other autoimmune diseases, such as lupus and scleroderma; and cancers that affect the blood cells, like leukemia and lymphoma. However, many children who have these illnesses do not develop vasculitis -- which underscores the fact that its causes are complex and, so far, not fully known."

I had a lot of strep as a kid, i can't imagine something like this happening from that. Has she been sick for a long time or was this something sudden?

a reply to: rukia
Sudden. Vomiting and off School but they admitted other Pupils off as well so no alarms set off.
She's been on the most aggressive treatment they have
Daily Plasma replacement followed by Dialysis.
Stable so onto Cancer Drugs tomorrow as they will supress Her Immune system.
She's been an absolute Trooper throughout.
Hard work to see God Bless Her.