Improvements with Prednisone?

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Dani
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Improvements with Prednisone?

Postby Dani » Tue Dec 17, 2013 2:42 pm

Has anyone seen noticeable improvements when their child was on Prednisone?

We did a short trial of Prednisone and the improvements were noticed by many. Both in speech and cognition. I know it's not a medication that can be used long-term though.

Maxs dad
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Re: Improvements with Prednisone?

Postby Maxs dad » Tue Dec 17, 2013 3:38 pm

Yes, it's wonderful! Good gains here too.

FatherOf2
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Re: Improvements with Prednisone?

Postby FatherOf2 » Tue Dec 17, 2013 4:23 pm

My DAN doctor said that Prednisone is only used short-term as a test for brain inflammation. If a child reacts well to it well, then it indicates inflammation, and some other treatment is used like IVIG (3 hr per treatment, very expensive, not covered by insurance) or GcMAF. I am not sure what else woul be the "other treatments"? Fish oil, NSAIDs (effect is not lasting either), chelation? Since the gains from Prednisone are not lasting (is it true?) and it can affect adrenal function, then why even bother with it? Just go directly to these "other treatments" if you know what they are. I think that finding an anti-infllamatory treatment with results that stick is the main objective of all of us here. IMHO

Dani
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Re: Improvements with Prednisone?

Postby Dani » Tue Dec 17, 2013 5:07 pm

Maxs dad wrote:Yes, it's wonderful! Good gains here too.


Good to hear that. How long was your child on it?

FatherOf2 wrote:My DAN doctor said that Prednisone is only used short-term as a test for brain inflammation. If a child reacts well to it well, then it indicates inflammation, and some other treatment is used like IVIG (3 hr per treatment, very expensive, not covered by insurance) or GcMAF. I am not sure what else woul be the "other treatments"? Fish oil, NSAIDs (effect is not lasting either), chelation? Since the gains from Prednisone are not lasting (is it true?) and it can affect adrenal function, then why even bother with it? Just go directly to these "other treatments" if you know what they are. I think that finding an anti-infllamatory treatment with results that stick is the main objective of all of us here. IMHO


I don't think all the gains last. Some did, but others faded, but while it happened, the immediate improvements were nothing short of amazing. I've tried lots of anti-inflammatories over the years including fish oil, NSAIDs, chelation, Enhansa and many more that you didn't list, but none of them brought these results like what we saw with a steroid. None. IVIG is too expensive and our qualitative plasam immune test didn't indicate a medical need for it so insurance won't cover it. Doing Prednisone actually showed me we're not really addressing a root cause of her autism. It showed me that all the fish oil, NSAID and anti-inflammatories in the world we've done aren't enough because in those three weeks we saw more speech improvements than I saw in one year with the other anti-inflammatories.
I didn't know how strong I could be until I had to be.

FatherOf2
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Re: Improvements with Prednisone?

Postby FatherOf2 » Tue Dec 17, 2013 5:16 pm

This is very interesting. Could you tell what improvements stayed (examples) and how long ago did you finish Prednisone? We are considering our next step and a Prednsione trial might be the thing to do. Thanks.

Dani
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Re: Improvements with Prednisone?

Postby Dani » Tue Dec 17, 2013 5:30 pm

I kept a log of the improvements. Verbally she was much quicker to respond. And she'd come out with original sentences that we hadn't heard before. She would use complete sentences, longer sentences, sentence after sentence. She was also not as easy going and passive. It's a good thing for her. She'd be more "defiant" for lack of a better word, but it was a good development milestone. She had MUCH better recall. Like the best recall I've ever seen from her.

Alas some of the improvements in expressive speech faded, but the receptive gains for some things are still there. She didn't go back to being as passive as before. Her recall about past events seems slightly better than before the prednisone.

The improvements stayed for about a week after we stopped the medication then the gains that eventually faded started to fade. We stopped the Prednisone over a month ago.

A mom who is much smarter than me at biomed told me perhaps the reason other antiinflammatories didn't work is because they aren't corticosteroids and prednisone addressed the part of the pathway that was at the root of the inflammation problem.
I didn't know how strong I could be until I had to be.

FatherOf2
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Re: Improvements with Prednisone?

Postby FatherOf2 » Tue Dec 17, 2013 5:44 pm

Dani wrote:A mom who is much smarter than me at biomed told me perhaps the reason other antiinflammatories didn't work is because they aren't corticosteroids and prednisone addressed the part of the pathway that was at the root of the inflammation problem.

That could be one explanation. The other is that a trigger of the inflammation is still there (mercury, yeast, viruses, parasites, allergens like food or mold, etc). Unless the trigger is treated, the anti-inflammatories will work only temporarily, IMHO. Treating a "leaky" gut can address many symptoms simultaneously like improper digestion of some foods and, thus, food allergies, yeast/clostridia toxin effects on the brain, etc. Chelation would also have a permanent effect. So would anti-viral treatments. I am very excited about Prednisone. I am just thinking ahead: if the improvements start fading, what would my next step be? I would like to hear from other parents who used anti-inflammatory steroids about the duration of improvements. I remeber seeing some old posts where these steroids were called the best thing they ever tried.

kulkulkan
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Re: Improvements with Prednisone?

Postby kulkulkan » Tue Dec 17, 2013 6:30 pm

Does prednisone stir up yeast like crazy (given suppressing immune system and candidiasis is one of the side effect mentioned in wiki)? Unfortunately, our DAN wouldn't even consider writing a script of any steroids for ASD (not even LDN, let alone prednisone to try), so we need to stick to natural supplements.

Though it may not have the same efficacy, this doc (Dr. Cowan) prefers the natural approach here and recommends weaning off Prednisone (using ACE as an interim step) and focus on diet instead starting with cholesterol and Vitamin A.

http://fourfoldhealing.com/2007/11/08/g ... -steroids/

Dani
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Re: Improvements with Prednisone?

Postby Dani » Tue Dec 17, 2013 6:52 pm

kulkulkan wrote:Does prednisone stir up yeast like crazy (given suppressing immune system and candidiasis is one of the side effect mentioned in wiki)? Unfortunately, our DAN wouldn't even consider writing a script of any steroids for ASD (not even LDN, let alone prednisone to try), so we need to stick to natural supplements.

Though it may not have the same efficacy, this doc (Dr. Cowan) prefers the natural approach here and recommends weaning off Prednisone (using ACE as an interim step) and focus on diet instead starting with cholesterol and Vitamin A.

http://fourfoldhealing.com/2007/11/08/g ... -steroids/


It's interesting you mentioned cholesterol because her cholesterol was quite low when we tested it a few months ago. I was surprised. She eats so much organic meat (i.e. bacon) that I would have thought her cholesterol was normal. So we started a prescription cholesterol supplement. It's helped. The most unexpected change was her chapped lips disappeared. I tried everything for those chapped lips..B vitamins, zinc. I never thought it was related to cholesterol.
I didn't know how strong I could be until I had to be.

FatherOf2
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Re: Improvements with Prednisone?

Postby FatherOf2 » Tue Dec 17, 2013 7:00 pm

kulkulkan wrote:Does prednisone stir up yeast like crazy (given suppressing immune system and candidiasis is one of the side effect mentioned in wiki)? Unfortunately, our DAN wouldn't even consider writing a script of any steroids for ASD (not even LDN, let alone prednisone to try), so we need to stick to natural supplements.

Though it may not have the same efficacy, this doc (Dr. Cowan) prefers the natural approach here and recommends weaning off Prednisone (using ACE as an interim step) and focus on diet instead starting with cholesterol and Vitamin A.

http://fourfoldhealing.com/2007/11/08/g ... -steroids/

It is an interesting article. For example, "the adrenal cortex cannot make adrenal hormones out of cholesterol without vitamin A." It looks like taking vitamin A may help my son with his adrenal problems. I am still on the fence regarding ACE for the same reason as the article uses against prednisone: << adrenal glands essentially have been “told” by the ACE hormones that the adrenals are no longer needed. This bargain, then, becomes a nightmare as the effectiveness of the ACE wears off, side effects become more serious and the patient is unable to stop taking the medication.>> Or may be I don't understand the ACE action? I just know some parents reported the need to increase ACE to some redicoulously high dose over time for it to stay effective.

B5 (Pantethine is even better) also helps adrenals. http://www.wellnessresources.com/tips/articles/pantethine_boost_your_brain_cardio_health_metabolism_and_detoxification/

Dani
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Re: Improvements with Prednisone?

Postby Dani » Tue Dec 17, 2013 8:12 pm

FatherOf2 wrote:I am just thinking ahead: if the improvements start fading, what would my next step be? I would like to hear from other parents who used anti-inflammatory steroids about the duration of improvements. I remeber seeing some old posts where these steroids were called the best thing they ever tried.

This is where I am.

I too want to hear from others who have good improvements with anti-inflammatory steroids.

kulkulkan wrote:Does prednisone stir up yeast like crazy (given suppressing immune system and candidiasis is one of the side effect mentioned in wiki)?


No, we didn't see any yeasty behaviors. We weren't on any strong antifungals at the time either.

FatherOf2
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Re: Improvements with Prednisone?

Postby FatherOf2 » Wed Dec 18, 2013 12:52 am

I think the key in a sustained anti-inflammatory action is to keep adrenal glands healthy. But the more I read about adrenal support supplements, the more I am getting confused. I went to the local health food store and they had a program on a computer there, which tells you any possible effect of a supplement on different organs. For example, vitamin A is listed as a cortisol-reducing supplement. I found several studies to support that. B5 on the other hand helps adrenal function. Vitamin D also supports adrenal/cortisol production. Vitamin A has antagonistic effect upon the metabolism of vitamin D. So, from what I've read, vit A is bad, but D and B5 are good. May be somebody who knows this stuff can explain which vitamins are supposed to help the adrenal function.

I found another article which repeats pretty much the same stuff as the erlier article.
http://www.cssassociation.org/patient-stories-reader/items/reducing-steroids-while-on-a-low-dose-activating-the-adrenal-glands-by-marian-mesker.html
...When you have been taking steroids for a longer time your adrenal glands (small glands situated just above the kidneys) no longer produce cortisol, the natural corticisteroid hormone, produced by the body to fight illness and cope with stress. This explains the inability to respond to acute physical stress. In certain cases, like an operation or other stressful events, an increase in steroid intake may be needed. So, you are living with a body that's relying on a drug to get enough cortisol to function properly...

What can we do to support the body and stimulate the adrenal glands to produce cortisol again?

---The adrenal cortex, the outer portion of adrenal glands, needs cholesterol to produce hormones. Therefore our diet should contain fat, both saturated and not-saturated. Although completely avoiding animal fat is unwise in this case, moderate consumption is better. Cod liver oil is especially good as it also supplies vitamin A, which is necessary for the adrenal cortex to make adrenal hormones out of cholesterol.

---Other major nutrients the adrenal cortex needs to do its job are: vitamins B5 (pantothenic acid) and B6 (especially the co-enzyme form of vitamin B was mentioned) and vitamin C. These should be obtained from food sources or whole food supplements.

---Glucocorticoids can do their job easier if you have a limited sugar and carbohydrate consumption.

---Cut back on caffeine and caffeine-related substances. Caffeine works by stimulating the adrenal medulla to produce adrenaline. Then the adrenal cortex must work double hard to produce the "chill out"cortisoid hormones.

---Avoid too much alcohol use, lack of sleep, overwork, and stress.

kulkulkan
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Re: Improvements with Prednisone?

Postby kulkulkan » Wed Dec 18, 2013 11:54 am

Dani wrote:It's interesting you mentioned cholesterol because her cholesterol was quite low when we tested it a few months ago. I was surprised. She eats so much organic meat (i.e. bacon) that I would have thought her cholesterol was normal. So we started a prescription cholesterol supplement. It's helped. The most unexpected change was her chapped lips disappeared. I tried everything for those chapped lips..B vitamins, zinc. I never thought it was related to cholesterol.


We've got the sonic cholesterol supplement as well. We will try it over the holidays. Dr. Shaw of GPL recommends total cholesterol of at least 160 - according to one research that he cited more than 80% of kids with ASD will have less than that. He figured out cholesterol as one of the main issue with his child once they removed eggs from diet due to high IgG and saw immediate regression. One known genetic cause of autism is SLOS (ASD prevalence is 50%-75% for kids with SLOS). Here is a case study of ASD patient that was later found to have SLOS.

http://ajp.psychiatryonline.org/article ... leID=99155

Maxs dad
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Re: Improvements with Prednisone?

Postby Maxs dad » Wed Dec 18, 2013 3:22 pm

We were put on prednisolone for a allergic reaction. Hives all over his body! He took it for 1 week. He was sharp, more social, responded quick and his speech is noticeably clearer when he was on it. He has been on it 3 times for 3-7 days so it varied. But I do not think you have to stay on it long term. I was thinking if you could pulse it for 3 days at a time Once a month it would help. and we might bypass the negative side effects. Anyway that is what I was thinking, but doctors say no dice on that. Say it is too dangerous to be on steroids and he will get them only when he absolutely needs them. I understand what they are saying, but hey if someone could replicate prednisolone without side effects I would be first in line!

I too have also tried other anti inflammatories with little to no effect.

Dani
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Re: Improvements with Prednisone?

Postby Dani » Fri Dec 20, 2013 4:13 pm

This is a great biochemistry video on why steroids work so well. Talks about the pros and cons, and the mechanism by which steroids work to reduce inflammation. It's a little heavy on the scientific talk, but worth watching.

http://www.youtube.com/watch?v=sSP6QrTvPlo

Maxs dad wrote:We were put on prednisolone for a allergic reaction. Hives all over his body! He took it for 1 week. He was sharp, more social, responded quick and his speech is noticeably clearer when he was on it. He has been on it 3 times for 3-7 days so it varied. But I do not think you have to stay on it long term. I was thinking if you could pulse it for 3 days at a time Once a month it would help. and we might bypass the negative side effects. Anyway that is what I was thinking, but doctors say no dice on that. Say it is too dangerous to be on steroids and he will get them only when he absolutely needs them. I understand what they are saying, but hey if someone could replicate prednisolone without side effects I would be first in line!

I too have also tried other anti inflammatories with little to no effect.


Your experience sounds so similar to ours. I know ASD kiddos who do a pulsed protocol. I'm going to talk to our doctor about it, but I think it will be a tough sell.

FatherOf2
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Re: Improvements with Prednisone?

Postby FatherOf2 » Tue Jan 21, 2014 1:19 pm

Hi Dani,

Could you update on your Prednisone experience. Is your child still on it? Are the improvements still there?

Dani
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Re: Improvements with Prednisone?

Postby Dani » Tue Jan 21, 2014 11:57 pm

FatherOf2 wrote:Hi Dani,

Could you update on your Prednisone experience. Is your child still on it? Are the improvements still there?


No, not still on it. Our doctor didn't want us to do it a second time or a pulsed dose. Some of the improvements we saw from Prednisone are still there and haven't been lost.

susiejay
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Re: Improvements with Prednisone?

Postby susiejay » Wed Jan 22, 2014 2:46 pm

My son did a 60 day course of Prednisone last summer and we saw no gains from it aside from improvement in GI issues. We haven't seen blood in his stool since which was the main reason we gave it. No cognitive improvement like I see others get anyway. He also had puffiness especially in his face and had some aggression issues while on it. No speech improvements either. His expressive speech recently tested at 17 months (he is 6 years old) which is slightly lower than before we did the Prednisone.

Sunvik
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Re: Improvements with Prednisone?

Postby Sunvik » Tue Feb 16, 2016 8:34 pm

We have started 15 days ago. My son has a very high IGE levels , so he is on elemental diet and also prednisolone. I defintely see some improvement ..like response to name calling is 100%, more social, eye contact has been improved, speech - little improvement ,repeating what we say a lot .

But side effects are hyper, not able to relax, crying spells..lately he has been complaining about stomach pain again..have to see what the doctor would say..

Dani,Father02 - did you do entocort also ? How are your kids doing now ?

FatherOf2
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Re: Improvements with Prednisone?

Postby FatherOf2 » Thu Dec 07, 2017 4:53 pm

Dani wrote:I don't think all the gains last. Some did, but others faded, but while it happened, the immediate improvements were nothing short of amazing. I've tried lots of anti-inflammatories over the years including fish oil, NSAIDs, chelation, Enhansa and many more that you didn't list, but none of them brought these results like what we saw with a steroid. None. IVIG is too expensive and our qualitative plasam immune test didn't indicate a medical need for it so insurance won't cover it. Doing Prednisone actually showed me we're not really addressing a root cause of her autism. It showed me that all the fish oil, NSAID and anti-inflammatories in the world we've done aren't enough because in those three weeks we saw more speech improvements than I saw in one year with the other anti-inflammatories.

We visited an allergist last Friday. He prescribed steroidal nasal sprays and allergy shots for my son, who has been having stuffy nose due to allergy to dust mites. We started nasal sprays two days ago and both days saw significant improvements in social behavior and language. Since the nasal spray (Nasonex) contains corticosteroid, a small percentage of which gets into the blood stream, I am suspecting that the improvements are coming from the reduction in brain inflammation. My son did two things in the last two days, which he has never done before:
1. He greeted his school aide by saying "Hi, Bill" the minute he saw him without any prompts.
2. He initiated a conversation with an adult who had a broken leg by asking "What happened to your leg? Did you ride a scooter and fell?" And then he pretended to be a doctor and said "Let me take an x-ray of your leg. This leg is OK, but this one has a broken bone..." He also for the first time spontaneously said to my wife "Mom, I had a dream that I will go to a different school". And then started describing where the new school is located.

If these gains continue, corticosteroids will move to #1 place on my list of things that helped most, ahead of HBOT, Rhodiola, Galantamine, and Piracetam. I am getting to the same conclusion that the most effective treatment of autism for some is fighting brain inflammation. It addresses the root cause. The only challenge is to make the gains stick. Giving corticosteroids or supplements is not a long term solution. If somebody found a long-term solution for the brain inflammation, please post here. I am thinking of immunotherapy, IVIG, and stem cells. I am still waiting for the clinic to get vials with allergen for allergy shots. These shots may re-balance the immune system and give more permanent gains.


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