Re: Feeling a bit better

[Guest guest]

I think OCD can be very much viral related, and not strep at all. THere's this

for eg.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2967113/pdf/IJPsy-39-190.pdf

Have you tried lysine? It can tamp down herpes virus and can be used long

term. We also use epicor which I have seen completely stop any cold sores in NT

people.

I'm glad he's feeling better now.

Anita

>

> Hi all, following on from all the desperate emails about and his Chorea

like movements, OCD etc, just thought I would up date. He's doing a lot better

now, still OCD out of the box by any standard but the movements are subsiding

and he seems pretty happy again.

> What I did in the end was just to absolutley load him up on tons of probio's

and big increased dose of LDM, also feeling better coincides with herpes sore

now come out and gone!

> I did manage to capture the chorea movements and OCD with close ups of the

sore and will be watching for this next time he goes off.

> So, might as well ask, is there anything out there on Herpes and OCD, Chorea

rather than Strep?

> Or if not, does one always follow the other?

> Delighted as I am to have him looking better it will now as per usual have me

looking like paranoid mother at up coming paed appointment and this is the

forever problem, by the time we get to see anyone the entire nightmare has

passed.

> Vicky

>

[Guest guest]

Vicky,

LDM100 drastically reduced OCD here too (even though I'm not sure of the cause

either) and we are still on a daily maintenance dose. I'm pleased to hear

is feeling better.

x

>

> Hi all, following on from all the desperate emails about and his Chorea

like movements, OCD etc, just thought I would up date. He's doing a lot better

now, still OCD out of the box by any standard but the movements are subsiding

and he seems pretty happy again.

> What I did in the end was just to absolutley load him up on tons of probio's

and big increased dose of LDM, also feeling better coincides with herpes sore

now come out and gone!

> I did manage to capture the chorea movements and OCD with close ups of the

sore and will be watching for this next time he goes off.

> So, might as well ask, is there anything out there on Herpes and OCD, Chorea

rather than Strep?

> Or if not, does one always follow the other?

> Delighted as I am to have him looking better it will now as per usual have me

looking like paranoid mother at up coming paed appointment and this is the

forever problem, by the time we get to see anyone the entire nightmare has

passed.

> Vicky

>

[Guest guest]

glad to hear that Vicky! yes quite a bit out there on herpes and strep and chorea, this one is a case study + review ... http://pediatrics.aappublications.org/content/121/4/e1003.fullWe describe an 8-month-old infant girl who presented post-HSE with 4 extremity ballismus and choreoathetosis, tongue-thrusting,

and involuntary vocalizations. On evaluation she was found to have new signal abnormality in the medial thalamus on a comparison

brain MRI and a negative cerebrospinal fluid (CSF) herpes simplex virus (HSV) polymerase chain reaction (PCR)....This patient creates an opportunity to review current understanding of the pathogenesis of post-HSE movement disorders. Clinical

relapses have been organized into an early, often reinfectious process versus a late, postinfectious inflammatory process.

A clear-cut dichotomy is difficult, given the overlap in timing and in symptoms at presentation. Indeed, without a brain biopsy

to confirm active viral replication in neuronal cells, it would be difficult to definitively rule out residual active HSV

infection in any given case. This makes treatment with an antiviral agent, at least initially, necessary.4 However, mounting

evidence seems to favor an immune-mediated, noninfectious process in the overwhelming majority of children who present with

post-HSE movement disorders. This pathophysiology also fits with the emerging understanding of other postinfectious antibody-mediated

movement disorders such as those than may occur in Sydenham's chorea, pediatric autoimmune neuropsychiatric disorders associated

with streptococcal infection, and paraneoplastic syndromes.

so ideally at this point immunomodulation and therapies to reduce autoantibodies - proper ones would be something like rituximab, but in the absence of a firm diagnosis of a serious autoimmune condition I doubt that docs would even bring it up... have you had him seen by any docs recently, any tests done?Natasa xx>> Hi all, following on from all the desperate emails about and his Chorea like movements, OCD etc, just thought I would up date. He's doing a lot better now, still OCD out of the box by any standard but the movements are subsiding and he seems pretty happy again.> What I did in the end was just to absolutley load him up on tons of probio's and big increased dose of LDM, also feeling better coincides with herpes sore now come out and gone!> I did manage to capture the chorea movements and OCD with close ups of the sore and will be watching for this next time he goes off.> So, might as well ask, is there anything out there on Herpes and OCD, Chorea rather than Strep?> Or if not, does one always follow the other?> Delighted as I am to have him looking better it will now as per usual have me looking like paranoid mother at up coming paed appointment and this is the forever problem, by the time we get to see anyone the entire nightmare has passed.> Vicky>

[Guest guest]

Thanks for this Natasa, would we really be looking to see an immunologist?

I don't think we have a cat in hells chance that the paed will see this as anything other than cyclical nature of autism and teenage hormones.

It's a tricky one for me because paed supports our caudwell applications so don't want to kick the baby out with the bathwater.

Vicky

[Guest guest]

I think they would find it too hard to justify dismissing chorea -like

movements and ticks (if severe) as 'just autism'. If ever happens again

try and film episodes?

Natasa

>

> Thanks for this Natasa, would we really be looking to see an

immunologist?

> I don't think we have a cat in hells chance that the paed will see

this as

> anything other than cyclical nature of autism and teenage hormones.

> It's a tricky one for me because paed supports our caudwell

applications so

> don't want to kick the baby out with the bathwater.

> Vicky

>

[Guest guest]

I have Natasa, some amazing movements for prolonged period problem is the film is weird, sound is ahead of image so you hear this big smack and see the movement after, it looks like he is striking his chest but actually it's a huge gross motor of arm way back and moves with force on his chin, this then sends his chin backwards and his hair is swaying in the force, he then stops briefly looks at me with a completely normal look on his face before it starts again, definitely not raging. I sent the clip to Risca adnd Lynsey but Lynsey was really shocked when she seen it here on PC as it showed it so much more clearly than in an email.

It's definitely not a behaviour.

Vicky

Re: Feeling a bit better

I think they would find it too hard to justify dismissing chorea -like

movements and ticks (if severe) as 'just autism'. If ever happens again

try and film episodes?

Natasa

>

> Thanks for this Natasa, would we really be looking to see an

immunologist?

> I don't think we have a cat in hells chance that the paed will see

this as

> anything other than cyclical nature of autism and teenage hormones.

> It's a tricky one for me because paed supports our caudwell

applications so

> don't want to kick the baby out with the bathwater.

> Vicky

>