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5yo Diagnosed with rare condition PANDAS, need help and support

(8 Posts)
Queenofkids88 Tue 15-Sep-15 12:00:26

My 5yo DS has just been diagnosed with PANDAS its a condition that affects his brain. To cut a long story short, he was having funny eye movements which initially they thought was a brain tumor but after week in hospital CT scans and EEG's this all came back normal and we were then referred to a paediatric neurologist in Bristol as the movements in DS eyes were abnormal. When we got to the children's hospital the neurologist diagnosed DS with PANDAS. This was caused by an infection that he got days after having his tonsils out the infection has got to a part of his brain making do these funny eye movements. His behavior has got worse which they said is a symptom, i am still disciplining him normal as i don't want him to think that its acceptable to hit and bite but this isnt the usual behavior of our DS.

I was just wandering if anyone knew about this condition or has been through a similar situation as DH and i are really struggling as its been such a stressful time. We just need some support and knowledge so we can move forward. Any advice would be brilliant.

Miloarmadillo1 Tue 15-Sep-15 12:09:33

Hi queen just wanted to send you an un-Mumsnet-ty hug. I have no experience of PANDAS but my baby DD is treated at the neurology department of Bristol Children's Hospital for West Syndrome, and we went through the same scary process of EEGS, scans and tests. There doesn't seem to be much on the ground support for rare conditions, we found a Facebook group which has been a lifeline so worth looking there for support. I hope your DS's symptoms subside soon.

Miloarmadillo1 Tue 15-Sep-15 12:20:15

Did you try pandasnetwork.org already?

Witchend Wed 16-Sep-15 14:33:48

Try and get in contact with other people. Facebook groups are good. Dd2 has a rare congenital condition (around 30 babies a year born with some degree of it) and having others around to ask is helpful. Other parents will give you day to day help which the consultants can't.

Hope he recovers as quick as possible.

LeChien Wed 16-Sep-15 14:41:00

A friend of the family's dd has this.
The symptoms die down then flare up whenever she has a strep infection (I think), so she's on antibiotics all the time, stays off school if there are bouts of illness spreading round.

At first, because drs don't seem to know much about it, she was given a very bleak outlook, but actually, as she nears puberty, things seem to be easing off a bit.

Agree with finding others going through it.
Hope things ease off soon thanks

JosBoys Sun 01-Oct-17 10:31:57

@Queenofkids88 I know this is an old thread but I was wondering how your DC had gone on with their PANDA diagnosis and treatment? Our DC seems to have some of the symptoms on the PANDA checklist and I'm trying to find out more about it.

Tattybogle89 Mon 02-Oct-17 21:17:12

I too would be interested in any updates to this thread

benlee47 Sat 04-Nov-17 22:37:49

Our child became suddenly unwell at school.We have had excellent advise from Consultant Paediatrician Dr Tim Ubhi at children's e hospital re pandas\pans

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