My child is 99% recovered- just sharing good news

[jph]

I spent a lot of time on this forum reading when my son was in the throes of PANS. I didn't read many stories where children had recovered from this horrid illness. This post is for someone like me who needed to be handed a life raft and took a leap of faith to get on it.

 

A year ago my child had had PANS for over three years and had been diagnosed for only about six weeks. He was the worst he'd ever been in all the years of having it, having every symptom under the sun at the highest intensity possible, despite being a patient of a PANS specialist. A mom on another forum I'm on suggested homeopathy. At first I thought, yeah, right. My child is ill. If he's not getting better under the care of a specialist, homeopathy isn't going to do anything. The universe opened up to make sure I was hearing her: I could not get a hold of the specialist despite calling and emailing for several weeks. My son was sicker than he'd ever been and sicker than anyone I was reading about. This person gently nudged me a few times toward homeopathy. Two of her pandas had been healed by it. Despite my mindset about how sick he was and that he was seeing the best possible doctor for his condition, the stuck position I was in led me to take the leap of faith into homeopathy.

 

I started seeing results within days- not miraculous, "he's better overnight!" results, but for the first time in 3+ years, something was making a difference. The first few months were a little bumpy, but he continued to get better. Even during the bumps, he never, ever got as bad as he'd been when we started. It's now been 11 months since we started. Since July, he has held steady at 98% normal, meaning 98% of who he was before PANS. For a few weeks now, he's been 99% normal.

 

This post is for anyone who needs it. <3

Edited December 10, 2014 by jph

[MaryAW]

What did you actually give your child that made him better?

[chubbermommy]

That is wonderful!! :) :)

 

Who is your homeopath? We are not getting better so I am looking more into homeopathy now.

[HopeinHIM]

That is wonderful!! :) :)

 

Who is your homeopath? We are not getting better so I am looking more into homeopathy now.

Is your child attending school? So many of these suffering little angels are actually able to attend. NOT MINE!

I just don't know how they do it.

[HopeinHIM]

I spent a lot of time on this forum reading when my son was in the throes of PANS. I didn't read many stories where children had recovered from this horrid illness. This post is for someone like me who needed to be handed a life raft and took a leap of faith to get on it.

 

A year ago my child had had PANS for over three years and had been diagnosed for only about six weeks. He was the worst he'd ever been in all the years of having it, having every symptom under the sun at the highest intensity possible, despite being a patient of a PANS specialist. A mom on another forum I'm on suggested homeopathy. At first I thought, yeah, right. My child is ill. If he's not getting better under the care of a specialist, homeopathy isn't going to do anything. The universe opened up to make sure I was hearing her: I could not get a hold of the specialist despite calling and emailing for several weeks. My son was sicker than he'd ever been and sicker than anyone I was reading about. This person gently nudged me a few times toward homeopathy. Two of her pandas had been healed by it. Despite my mindset about how sick he was and that he was seeing the best possible doctor for his condition, the stuck position I was in led me to take the leap of faith into homeopathy.

 

I started seeing results within days- not miraculous, "he's better overnight!" results, but for the first time in 3+ years, something was making a difference. The first few months were a little bumpy, but he continued to get better. Even during the bumps, he never, ever got as bad as he'd been when we started. It's now been 11 months since we started. Since July, he has held steady at 98% normal, meaning 98% of who he was before PANS. For a few weeks now, he's been 99% normal.

 

This post is for anyone who needs it. <3

Yes, who are you using? The anti B's are not really working at this point so seeking other avenues. Herbs and such.

[jph]

We consult with Grant Bentley, hp at www.vcch.org. There is a fb group called Homeopathy Cafe where moms talk about what they're doing to heal their pans kids homeopathically. Each person's constitution is different, so although Causticum is the miracle remedy for my child, it absolutely does not mean Causticum treats pans. It only treats my child. To find your child's remedy, you must consult with a trained homeopath who can look at their whole case. We have always homeschooled, even prior to pans.

[cynditk]

Congrats, glad you found what worked for your family:)

 

We tried homeopathy with Angelica Lemke, and my son did not make great strides, but he is also PANS/Lyme and vey far advanced. And 19YO, having been sick for 6 years before really treating.

 

Now we are doing IV nutrients, IV abx, and IV chelation. We just started this approach so too soon to tell.

[ssfkat]

I am so glad that this has worked for you and very glad you posted.

 

Before embarking on the pharmaceutical route, we tried every natural path under the sun, including 2 nationally-recognized, published homeopaths. Both were very promising in the beginning, and more than eager to take us on, but in the end, proved ineffective in helping our daughter. We simply don't have the out-of-pocket money to keep finding the "right" homeopath for her.

 

That being said, I know it is very helpful for some folks, and if you have the $$, it's worth investigating to see if you're one of those folks!

[clc329]

My son was diagnosed with PANDAS in March 2019. He has had Autism since just prior to turning 3 years old. We have seen a Homeopath since January of 2020. Just recently, I did some research to try to help a friend who suffers from Parkinson's and stumbled apon Causticum. I couldn't believe how it matched my son's PANDAS symptoms. My husband and I ordered the 200c strength, put a couple pellets in 3-4 ounces of distilled water and gave my son a 10 ml dose. So far, it has been unbelievable! I have a lot to say, but it's too hard to put everything into writing. What I can tell you is that my heart is with everyone who is going through this. Our Homeopath neglected to tell us about this remedy because she said it was overused and too common. Really? Thank God, my heart wanted to help a friend suffering because perhaps I would never have tried this remedy. We just started so we still need time, but my son has struggled with bed wetting and has been dry since using Causticum. I've been learning about remedies for three years now. Finding the right cure is vital, but remember that it is also important to find a Homeopath with an open mind completely invested in our children. Today, we are more than ever on our way to eliminating the symptoms of PANDAS and getting it cured once and for all.

Edited February 16 by clc329

[JPdad]

I also wanted to also add some good news to this thread.  I joined this forum in 2013 back when my son was 5.  He is 16 now with no remaining symptoms or flares ups and has been this way for about 5 years.

What worked for us was getting a proper diagnosis early (within 2 days of first episode) and fighting like heck to get a doctor to prescribe long term antibiotics.  At first he was just given the standard course of antibiotics to fight the strep or ear infections he had.  Symptoms would improve, but then come right back.  After about 6 months of constant flare ups we ended up getting him on daily antibiotics for 2 years.  To do this it took traveling out of state to a Pandas friendly doctor. After that, he went down to just a preventative does of antibiotics a couple times a week for a year or so.  After that, we went down to just antibiotics in the winter months, then down to just when he had any illness or symptoms or a dental visit.  Now he’s been completely off antibiotics and flare free for about 5 years.  Puberty really seemed to shut things down for him Pandas wise. I strongly believe we would’ve had a different outcome if we didn’t catch it early and get him protected with long term antibiotics.

His original symptoms were awful OCD and tics.  He had to do weird things like tap his leg with his fist 3 times after doing anything like throwing a ball or spelling a word.  His tics ranged from mild blinking to full upper body contortions.  It was hard to watch and heartbreaking at times and we truly wondered if he’d ever return to normal.  
 

The reason I came here today (first log on in 5 years) was because my son opened up to us on vacation about his Pandas for the first time.  It was hard to get him to talk about it when he was young.  Last weekend he explained the OCD urges he used to have.  Some he hid, like when he played basketball he had to dribble down the court an exact number of times during drills…. Other things he couldn’t hide, but the OCD was worse for him than even we could even notice.  

Anyway, every case is very different and I know how it feels to be in the midst of it all.  Just wanted to give everyone here some hope that there is light at the end of the tunnel and the outcome can be a successful and well adjusted child.   My son has a 3.8 GPA in High School and has several offers to play college baseball.  He is a 3 sport athlete, class Vice President, and has a great friend group.  Everything you could hope for a child.  All I wanted 10 years ago was to be able to write the post I am writing right now.  Wishing you all strength in your battles and the best of outcomes for your children! 

Edited August 1 by JPdad