Improvements with Prednisone?

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i-jerry
Posts: 170
Joined: Wed Dec 21, 2016 7:46 pm

Re: Improvements with Prednisone?

Postby i-jerry » Thu Dec 07, 2017 6:08 pm

FatherOf2 wrote:
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.


it's happy to see your son goes will with it! does this one need prescription or not? I'm also looking on Rhodiola today on Marya's post, does it help on speech as well?

Grandmother
Posts: 59
Joined: Tue Jun 21, 2016 7:47 pm

Re: Improvements with Prednisone?

Postby Grandmother » Thu Dec 07, 2017 6:25 pm

Maybe the most effective treatment is indeed fighting inflammation, which may not necessarily be in the brain.  The studies a couple of years ago found a connection between the brain and the immune system as well as the gut.

https://news.virginia.edu/illimitable/d ... -textbooks
They'll Have to Rewrite the Textbooks
The brain is directly connected to the immune system by vessels previously thought not to exist.
The unexpected presence of the lymphatic vessels raises a tremendous number of questions that now need answers, both about the workings of the brain and the diseases that plague it
But the true significance of the discovery lies in its ramifications for the study and treatment of neurological diseases ranging from autism to Alzheimer’s disease to multiple sclerosis.

https://news.virginia.edu/content/unkno ... paign=news
Powerful Defenders of the Brain
"he researchers suspect the cells may be the missing link connecting the brain and the microbiota in our guts" 
and “This all comes down to immune system and brain interaction,” said Kipnis, chairman of UVA’s Department of Neuroscience. “The two were believed to be completely not communicating, but now we’re slowly, slowly filling in this puzzle. Not only are these [immune] cells present in the areas near the brain, they are integral to its function."
“These cells are potentially the mediator between the gut and the brain. They are the main responder to microbiota changes in the gut."

As grandchild's gut healed with diet and supplements, so did her autism.  So was her brain inflamed, or was her gut inflamed and effecting the brain?

I've also thought that vitamin A is crucial.  My daughter added cod liver oil after researching Dr. Mary Megson who claims these children need the natural form of vitamin A found in cod liver oil.  There were noticeable improvements. Cod liver oil was also recommended by doctors to all children who were sick in my generation and especially those who had measles. 

Fatherof2, did you ever try cod liver oil?

FatherOf2
Posts: 1667
Joined: Mon Mar 11, 2013 1:37 am

Re: Improvements with Prednisone?

Postby FatherOf2 » Thu Dec 07, 2017 6:47 pm

Grandmother wrote:Fatherof2, did you ever try cod liver oil?

Yes, I did, for about 3 years, Nordic Naturals Children DHA, purified arctic cod liver oil. It didn't do anything. Then I switched to EPA-rich oil. Still nothing. Then I switched to Krill Oil. I thought I saw a slight boost in cognition. I tried many brands of probiotics, different anti-yeast meds, colostrum, etc. Nothing helped. I tried GFCF diet several times for more than 6 months and never saw any improvements when started or regressions when stopped. MB12 shots had zero effect even with all supporting supplements like folate, lithium, etc.

I agree that the gut health is important. Because the Nasonex spray acted so fast, within 24 hours, I doubt that it was because of the gut healing. The common theory is that most autistic children have disrupted blood-brain barrier. So, anything that goes into the nose (environmental allergens, nasal spray) gets directly into the brain (https://www.youtube.com/watch?v=CwOD2J_Z_BM, minute 8 of the video). My son has regular bowl movements, no diarrhea, no stomach ache. His blood tests are normal with the exception of allergy and thyroid. I suspect that my son immune system was compromised by bottle feeding (lots of staff that comes with mother's milk was missing) and 35 vaccines that he received by age 1.5. His immature immune system most likely rebelled and started attacking its own organs. I need to reset it back to normal.

i-jerry, I got Nasonex by prescription, but there are steroidal nasal sprays now over the counter. Rhodiola is great for speech. Cordyceps is not so, at least in my son.

Grandmother
Posts: 59
Joined: Tue Jun 21, 2016 7:47 pm

Re: Improvements with Prednisone?

Postby Grandmother » Thu Dec 07, 2017 10:50 pm

Fatherof2, don't discount the gut because of the fast response.  Grandchild either responded within 24 hours of anything or had no response at all, so he may or may not have a gut problem since it can react that fast.  Her obvious gut problem of constipation healed within weeks.  So she had eliminated gluten, dairy, corn, soy, and all food additives, was on probiotics, digestive enzymes, cod liver oil, the house was "greened", water was filtered, and gut was fine, but she still had autism, not as profound as she started, but still severely autistic.

Not until daughter decided to go on to the SCD diet did it become obvious that she still had gut problems.  First eliminating sugar which led to discovery of a yeast infection and Nystatin.  I'm sure since you've already done anti-fungals, yeast isn't a problem for your child.  However, after the yeast was treated, continued on to SCD.  After eliminating the last grain to be completely on the diet, she had a huge die-off reaction.  After that were months when she had mysterious rashes, one sure looked like measles to me, regressions with every frequent illness, etc.  I think that her immune system was finally able to function after everything bad in her gut was starved out, but it still couldn't function while also dealing with a virus so there were regressions.  Didn't try oral MB12 until after the months of illnesses and regressions, so can't say if she would have reacted to MB12 if given sooner.  So unless you know that your son doesn't have bad bacteria in his gut, don't discount it.  All grandchild had was a stool test that showed no yeast or bad bacteria, but both were there.

It's also possible that his gut is just fine and it's only his immune system that is the problem.  I agree that these children are being overwhelmed with vaccines and their immune systems shut down.  I suspect you may see improvements with immunotherapy and IVIG, but don't know enough about stem cells to say, so will be curious if that also works.

Best wishes.

Nikkie111
Posts: 358
Joined: Thu Sep 24, 2015 6:26 am

Re: Improvements with Prednisone?

Postby Nikkie111 » Sat Dec 09, 2017 10:34 am

FatherOf2 wrote:
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.

Fo2 really happy for your boy ! Unfortunately you know the side effects of corticosteroids even for short term use but really happy you saw another side of him . You know now his potential if that brain wasn't that bloody inflamed!!

Marya
Posts: 216
Joined: Tue Feb 21, 2017 4:14 pm

Re: Improvements with Prednisone?

Postby Marya » Sun Dec 10, 2017 9:55 am

FatherOf2 wrote: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.

I'm glad Fatherof2 that your son is getting better. I had the same experience with anti inflammation in the past, always social behaviour and language get improved. However, I don't think cognition improved as well, but at least some issues were under control.

FatherOf2
Posts: 1667
Joined: Mon Mar 11, 2013 1:37 am

Re: Improvements with Prednisone?

Postby FatherOf2 » Sun Dec 10, 2017 12:53 pm

Nikkie111 wrote:Fo2 really happy for your boy ! Unfortunately you know the side effects of corticosteroids even for short term use but really happy you saw another side of him . You know now his potential if that brain wasn't that bloody inflamed!!

The first two days of improvement on the nasal spray were a fluke. He is back to his "normal". Interestingly, he had a similar response to Sulforaphane: 1-2 days of improvements followed by months of nothingness. In both cases his cheeks got rosy on those first days with border-line fever. It is almost like his immune system gets disturbed for a couple of days and then quickly recovers.

Nikkie111
Posts: 358
Joined: Thu Sep 24, 2015 6:26 am

Re: Improvements with Prednisone?

Postby Nikkie111 » Sun Dec 10, 2017 5:14 pm

FatherOf2 wrote:
Nikkie111 wrote:Fo2 really happy for your boy ! Unfortunately you know the side effects of corticosteroids even for short term use but really happy you saw another side of him . You know now his potential if that brain wasn't that bloody inflamed!!

The first two days of improvement on the nasal spray were a fluke. He is back to his "normal". Interestingly, he had a similar response to Sulforaphane: 1-2 days of improvements followed by months of nothingness. In both cases his cheeks got rosy on those first days with border-line fever. It is almost like his immune system gets disturbed for a couple of days and then quickly recovers.

Nahh it's ok, it's for the best... predisolone is nasty! I had it for 3 months while pregnant to make sure my NK cells go really low and I don't miscarry (I had history). You don't want low NK cells on your kid you want the opposite.. so it's for the best, trust me....
You can always try groprinosin or cycloferon and see how it goes. :wink:

Marya
Posts: 216
Joined: Tue Feb 21, 2017 4:14 pm

Re: Improvements with Prednisone?

Postby Marya » Mon Dec 11, 2017 5:09 am

FatherOf2 wrote:The first two days of improvement on the nasal spray were a fluke. He is back to his "normal". Interestingly, he had a similar response to Sulforaphane: 1-2 days of improvements followed by months of nothingness. In both cases his cheeks got rosy on those first days with border-line fever. It is almost like his immune system gets disturbed for a couple of days and then quickly recovers.

It is ok Fatherof2, as Nikkie said it is for the best. Probably it is a sign that your son needs an anti inflammation! So try different things. But be patient and accept your son as he is. Look at me for example, with my abnormality, anti social behaviour, cognitive issue..etc I got my BSc in Microbiolgy with 1:1 high GPA(4.30 out of 5) so rest assure you and all the parents here :D
I could have less issues than your son but everyone is different. As long as there is no self injury, anxity, very poor cognitive anything else would be ok and would change when the child grow up.
By the way, I tried almost everything but Choline has a big positive on me. I disscused that with my doctor and he said that low Cholibe level in the brain can cause serious symptoms. So that what was effecing me apprently. But I'm keeping take other supplements like Omega3, vitamin D, NAC and B12 spray.


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