Home
Log in / Sign Up
    Private Messages   Advanced Search   Rules   New User Guide   FAQ   Advertise   Contact Us  
Forum -> Parenting our children -> Our Challenging Children (gifted, ADHD, sensitive, defiant)
I'm a PANS/Neuroinflammation mom of 2. AMA!
Previous  1  2  3  4  5  Next



Post new topic   Reply to topic View latest: 24h 48h 72h

amother
Hyssop


 

Post Tue, Jul 13 2021, 12:15 am
Zehava wrote:
Have any of you tried goats milk, raw or otherwise? I’ve used it to treat herpes and other mouth ulcers but google says it has many anti-viral anti-inflammatory properties. I grew up on organic goats milk and I’m kind of curious if that’s why my immune system is so good now. I hardly ever get sick even though I was sick a lot as a kid.
Many pandas families swear by donkey milk https://dulcededonke.com/blogs.....sease
Back to top

Zehava




 
 
    
 

Post Tue, Jul 13 2021, 12:17 am
amother [ Hyssop ] wrote:
Many pandas families swear by donkey milk https://dulcededonke.com/blogs.....sease

Which is obviously not kosher so…
Back to top

amother
DarkKhaki


 

Post Tue, Jul 13 2021, 12:19 am
There seem to be so many children and families struggling with this now. Anyone else wondering why this is happening so much?
Back to top

amother
Hyssop


 

Post Tue, Jul 13 2021, 12:20 am
Zehava wrote:
Which is obviously not kosher so…
just thought it was interesting
Back to top

amother
Hyssop


 

Post Tue, Jul 13 2021, 12:23 am
amother [ DarkKhaki ] wrote:
There seem to be so many children and families struggling with this now. Anyone else wondering why this is happening so much?
Ive noticed this too. I think the high rates of strep in our communities may have something to do with it.
Back to top

amother
DarkKhaki


 

Post Tue, Jul 13 2021, 12:26 am
amother [ Hyssop ] wrote:
Ive noticed this too. I think the high rates of strep in our communities may have something to do with it.

Why does the frum community have a higher rate of strep than other communities?
Back to top

amother
Hyssop


 

Post Tue, Jul 13 2021, 12:27 am
amother [ DarkKhaki ] wrote:
Why does the frum community have a higher rate of strep than other communities?
More kids, more crowding? Just guessing here.
Back to top

amother
Junglegreen


 

Post Tue, Jul 13 2021, 1:02 am
Can you tell us how your kids are doing today. Are they somewhat better? Much better?
Have you found any one thing that you can say is a must for other sufferers to do to help?
If there are other moms who’s children are completely cured can you chime in and share how you got to cured?
Back to top

amother
Oxfordblue


 

Post Tue, Jul 13 2021, 1:09 am
lk1234 wrote:
This is a super mean question, I'll post under my screen name so you know I'm legit but I've been dying to ask. Are you the poster that posts on every thread regarding autism, add, behavior issues something about gut health or, pandas. I am active in this forum and noticed there is always one poster who says something like you should check for pandas, gut leak, neuroinflammation. I'm wondering if it is multiple Imas or just one☺☺


Its multiple as far as I (another poster lol) is concerned)
Back to top

amother
Hyssop


 

Post Tue, Jul 13 2021, 9:09 am
amother [ Junglegreen ] wrote:
Can you tell us how your kids are doing today. Are they somewhat better? Much better?
Have you found any one thing that you can say is a must for other sufferers to do to help?
If there are other moms who’s children are completely cured can you chime in and share how you got to cured?
My child is much much better than they were at onset. We are 5 years into this, we have better days and worse days, but never as bad as it was before we started treatment. It can be a lifelong process, there are so many layers. Antibiotics has without a doubt given us the most gains, but not necessarily lasting gains. We are currently pursuing classical homeopathy and though we’ve yet to see our own miracle, people are reporting incredible things with this modality, so I’m very very hopeful.
Back to top

amother
DarkKhaki


 

Post Tue, Jul 13 2021, 9:29 am
A few amothers have mentioned homeopathy. Who do you go to for that? What is the general cost of the treatment?
Back to top

amother
Foxglove


 

Post Tue, Jul 13 2021, 9:30 am
amother [ DarkKhaki ] wrote:
There seem to be so many children and families struggling with this now. Anyone else wondering why this is happening so much?


My pediatrician who has been practicing for many many years says that there is a physiological change in children.
We have not been able to pinpoint the triggers, but we know their there. Possible causes include environmental changes: lots of plastic, chemicals that we are exposed to on a regular basis that has changed the physiological makeup of children today, and we are seeing the very real effects of that.
Back to top

FranticFrummie




 
 
    
 

Post Tue, Jul 13 2021, 9:39 am
amother [ Junglegreen ] wrote:
Can you tell us how your kids are doing today. Are they somewhat better? Much better?
Have you found any one thing that you can say is a must for other sufferers to do to help?
If there are other moms who’s children are completely cured can you chime in and share how you got to cured?


When DD was 5 she was on antibiotics more often than not. She missed half of kindergarten because of strep.

When I got her to see a top ENT at Children's Hospital, the doctor took one look at her throat, jumped back, and made this face. Surprised He said in his over 40 years of practice, he can count on one hand how many tonsil cases he's seen that were this bad. He asked me "How does she even breathe?"

We got both her tonsils and adenoids taken out, all the way down to the roots. After a good course of antibiotics, she's never gotten strep again.

After her surgery, the change in her personality was stunning. Within 36 hours she went from being whiny, irritable, stubborn, and generally miserable, to her old sweet, sunny self. The doctor wanted her to stay home and rest for a few days, but she really wanted to go outside and play! I had to practically sit on her to keep her calm, and finally resorted to videos.

I'm not a fan of putting kids through surgery just because they happen to have tonsils, but when you are dealing with recurring strep, PANDAS, or PANS, a tonsillectomy is the first thing that pops into my mind.
Back to top

amother
Chocolate


 

Post Tue, Jul 13 2021, 9:42 am
FranticFrummie wrote:
When DD was 5 she was on antibiotics more often than not. She missed half of kindergarten because of strep.

When I got her to see a top ENT at Children's Hospital, the doctor took one look at her throat, jumped back, and made this face. Surprised He said in his over 40 years of practice, he can count on one hand how many tonsil cases he's seen that were this bad. He asked me "How does she even breathe?"

We got both her tonsils and adenoids taken out, all the way down to the roots. After a good course of antibiotics, she's never gotten strep again.

After her surgery, the change in her personality was stunning. Within 36 hours she went from being whiny, irritable, stubborn, and generally miserable, to her old sweet, sunny self. The doctor wanted her to stay home and rest for a few days, but she really wanted to go outside and play! I had to practically sit on her to keep her calm, and finally resorted to videos.

I'm not a fan of putting kids through surgery just because they happen to have tonsils, but when you are dealing with recurring strep, PANDAS, or PANS, a tonsillectomy is the first thing that pops into my mind.


Unfortunately it’s not that simple. Most pandas cases I know who did a tonsillectomy say it didn’t help at all. In fact, you said your daughter has (or had?) a lot of mental health struggles. that’s all part of brain inflammation which can come from strep.
Back to top

amother
Hyssop


 

Post Tue, Jul 13 2021, 9:50 am
amother [ Chocolate ] wrote:
Unfortunately it’s not that simple. Most pandas cases I know who did a tonsillectomy say it didn’t help at all. In fact, you said your daughter has (or had?) a lot of mental health struggles. that’s all part of brain inflammation which can come from strep.
Yes, most kids need long term antibiotics even after their tonsils come out. And the immune dysregulation still needs to be addressed. It is a game changer for some kids, but there isn’t one single treatment that’s a complete cure. And I agree that any kids with a history of pandas who shows mental health issues later in life, even after a period of seemingly complete remission, I personally would highly suspect a relapse.
Back to top

amother
Babypink


 

Post Tue, Jul 13 2021, 9:56 am
gosh. I work with families of children with disabilities for over 25 years and have watched many many moms go down this road. unfortunately I havent seen ONE get cured from asd, autism or any craniosacral or energy work. a low sugar diet definitely makes a difference in all children regardless of a diagnosis. but anyone dealing with a real neurological disorder, I'm weary of the testimonials as I've watched so many unfortunately desperate parents try everything from health kinesiology, vitamins, enemas, craniosacral work, etc etc with no cures and depleted pockets. I wish someone can prove TRUE stories of confirmed diagnoses that have been reversed naturally. I'd have hundreds of referrals running your way.
Back to top

amother
Hotpink


 

Post Tue, Jul 13 2021, 9:56 am
Up until what age does this occur?

Where can I find a holistic doctor who can guide me in alternative medicine? (For other concerns as well)
Back to top

amother
Chocolate


 

Post Tue, Jul 13 2021, 9:59 am
amother [ Hotpink ] wrote:
Up until what age does this occur?

Where can I find a holistic doctor who can guide me in alternative medicine? (For other concerns as well)


It can occur at any age. If you see someone turn into a psych case overnight no matter their age it’s probably pans/AE/bge whatever you want to call it.

Many pandas children will “outgrow” it around puberty but usually there will be residual damage.
Back to top

amother
Hyssop


 

Post Tue, Jul 13 2021, 10:03 am
amother [ Hotpink ] wrote:
Up until what age does this occur?

Where can I find a holistic doctor who can guide me in alternative medicine? (For other concerns as well)
What kind of practitioner are you looking for? For what kinds of issues?
Back to top

amother
Hyssop


 

Post Tue, Jul 13 2021, 10:13 am
amother [ Babypink ] wrote:
gosh. I work with families of children with disabilities for over 25 years and have watched many many moms go down this road. unfortunately I havent seen ONE get cured from asd, autism or any craniosacral or energy work. a low sugar diet definitely makes a difference in all children regardless of a diagnosis. but anyone dealing with a real neurological disorder, I'm weary of the testimonials as I've watched so many unfortunately desperate parents try everything from health kinesiology, vitamins, enemas, craniosacral work, etc etc with no cures and depleted pockets. I wish someone can prove TRUE stories of confirmed diagnoses that have been reversed naturally. I'd have hundreds of referrals running your way.
Healing can and does happen. Years ago I took my pandas child to a neurologist, after listening to me describe my child and their issues they asserted that my child does not have pandas and recommended I have them worked up for asd. I did not take their advice and kept pursuing pandas treatment. Now a few years later those same issues are 80% resolved. And we’re not done yet.
There can be so many reasons kids don’t respond. Maybe they didn’t try the right treatment? Maybe they didn’t put out the right fire? Maybe they didn’t try it for long enough? One other thing I will say, functional medicine is very different from trying all kinds of random alternative things. I have nothing against alternative medicine, I think all kinds of modalities have their place in healing neuroimmune disorders, but it does need to be approached in a somewhat scientific way, which is why I’m always so outspoken about getting educated, not just following a protocol. You need to understand what is happening in your child’s body, and how the attempted treatment is going to address that, what it means when they don’t respond in the expected way, or they respond negatively. It makes me sad when people think they can throw a little craniosacral, a little homeopathy, a little kinesiology, some vitamin c and d, and when it doesn’t work, they write off the whole thing. There needs to be testing, there needs to be a rhyme and reason for the treatment, it needs to be done in an order that makes sense, and you need to watch carefully for gains, because it isn’t all or nothing. There are doctors who do this (real medical drs) , and they do see success. Even on here when people ask for our protocols, I’m happy to share, but it’s so hard to write it all up because behind every treatment, protocol and every supplement we decided to try, there’s a reason and an explanation, and it needs to make sense for your particular child.
Back to top
Page 2 of 5 Previous  1  2  3  4  5  Next Recent Topics




Post new topic   Reply to topic    Forum -> Parenting our children -> Our Challenging Children (gifted, ADHD, sensitive, defiant)

Related Topics Replies Last Post
Gift for hardworking mom
by amother
9 Yesterday at 3:30 pm View last post
Working Mom Dinner Ideas 9 Wed, Mar 27 2024, 6:17 pm View last post
I'm a natural speed reader, AMA
by amother
46 Fri, Mar 22 2024, 3:29 pm View last post
I’m bored 😂 I’m a mom of a SN child AMA
by amother
39 Fri, Mar 22 2024, 8:32 am View last post
I’m the natural mom AMA
by amother
433 Thu, Mar 21 2024, 6:46 pm View last post