PANDAS Syndrome - Be aware of this.

[mickd1961]

Out of the blue four weeks ago, my grandson woke up one morning like a stranger to us all.

A total personality change.

Gone was the happy, cheerful, engaging little 5 year old we all knew to be replaced by an anxious little boy with a million worries and a series of tics and odd movements.

It snowballed into him telling us he thinks he’s lying all the time even when he isn’t, he keeps saying he wants to hurt people.

He went straight from a potty to being dry at 3 years old, never a toiletry error and now he’s peeing himself at times.

He’s repeating questions time after time and keeps saying he thinks he’s going to die, he’s now scared of swallowing because he thinks he’s going to choke.

It’s been devastating for all of us and the doctors have been utterly useless, GP’s are no better than quacks these days.

So we did our homework online and we believe he has a condition calked PANDAS syndrome which I want to make you all aware of.

It’s usually as a result of throat infections such as STREP Throat, scarlet fever and from Chicken Pox, Leo has had the latter two during the past two months and sore throats.

In PANDAS cases the auto immune system goes haywire and attacks a part of the brain dealing with movement and feelings etc.

If you have children or grandchildren aged between around 3 and 12 and especially boys then be aware of this.

If they have these types of viruses and then you notice a character change and strange behaviour and tics starting being this to the attention of the child’s GP.

Only 10% of U.K. GP’s know about PANDAS which is criminal, it’s treatable with antibiotics and steroids once diagnosed.

Leo is lucky that we can afford private treatment, many can not and go undiagnosed which wrecks their lives for no good reason.

Please watch the clip below recorded on TV recently to see what one family went through, the doctor on this clip is Tim Ubhi who is going to be treating Leo.

Dubs, I’d be interested in your thoughts on this?

If you don’t know of it could you please make doctors at your hospital aware?

Thanks for reading and hopefully watching this chaps.





https://youtu.be/xkTVe1ZikrU

[Q165]

I am sorry to hear that Mick and hope that matters improve. I have two grandaughters aged 5 and 11. Thank you for bringing this to my attention.

[baggieal]

Sorry to hear this Mick and bet your daughter is devastated. Do get private treatment quickly as family is everything and if me - would act immediately regardless of cost. GP’S are a waste of time!

Through my own illness read up on it and got treatment most doctors are not even aware it exists! Frightening!

[BaggieSingh]

Really sorry to hear this Mick, and also have first hand experience of auto immune conditions and the issues they can cause
My daughter went from a happy normal 8 year old to not being able to stand or even wanting to move anything even turn her head was painful
She spend over 3 months in a wheelchair with mr doing pretty much everything for her after quitting work

We went to so many doctors private and NHS and all thought it was psychological as her tests weren’t showing anything

Absolute jokers really when we could see she wasnt faking it

I had to march into Birmingham Childrens during the pandemic and tell them I wasn’t leaving until they figured it out to get something done, we stayed in for a week and they were great but she has something rare that only 2 people per million her annually, much like Al above doctors aren’t aware of the issue or symptoms even though it can be fatal

Hope you manage to sort things out, as once we git her on the right meds she’s been much better, so at least we know she will never get to that state again even if she comes off the meds in a year

Heart breaking to see kids going through these sort of things

[boingy]

Sorry to hear Mick. I am involved quite heavily in dealing with the effects of trauma. Because I have CPTSD and because many therapists are unaware of the differences between CPTSD and PTSD I am often informing therapists of what it is. To be fair to doctors and Therapists there are so many conditions now it’s almost impossible to be fully informed about anything unless they have had experience of it in their own practice or a particular client as a therapist. Brain changes due to inflammation can produce lots of changes in behaviour. In my case with Complex post traumatic disorder, as a child during brain development I had to deal with trauma from a mother with schizophrenia which meant during the development stage I was constantly in fight or flight mode which then deeply affects your responses as an adult because your brain is set up to be always on the alert. You can’t switch off. It’s hard to trust anyone, or anything. I recently had the pleasure of speaking personally to Bessel van der Kolk who is the worlds leading trauma expert and appreciate people like him who deeply care about the effects of trauma. I hope he’s feeling much better now.

[Omegstrat6]

Hope your grandson is soon on the mend Mick and sorry to hear about what he and your family have had to go through as well as to hear that you have had to go through similar with your own daughter BS.

As Boingy says, frustrating as it is, there are so many conditions for GPs and therapists to be aware of these days that it is difficult to expect them to be up to speed on all of them. What gets me mad though is when they fob your concerns off and don't make any effort to explore possibilities outside of their own personal experiences/knowledge. I must say, however, that when trying to get help for our youngest (who has aspergers and a diagnosis of dystonia), aside from our local chocolate teapot paediatrician, the clinician we saw at Addenbrookes was brilliant and very open to our own views as parents and not at all the old school "I'm the professional and you are just the patient who doesn't know anything". A very understanding and helpful lady. This is also, of course, where the internet can come into its own as it can be a great tool for doing your own research.

Anyhow, thanks for posting and making people aware of this condition Mick and best wishes to both kids and also to yourself Boingy.

[DaveP67 is back!]

Hoping for a speedy recovery Mick, we seem to see a lot more of these autoimmune diseases than we used too, I have had 2 close family members who were a whisker away from dying due to autoimmune disease, thankfully you spotted it.

[soulman101]

Wishing your Grandson all the best.

[mickd1961]

Thanks chaps.

Holly spoke with the doctor featured in the clip I posted today and Leo is off to London tomorrow to have his blood tests done.

I just want as many people as possible to know about this devastating yet very treatable illness.

[animallittle3]

Wishing your grandson a speedy recovery Mick .