Help Jessica Huitson get Medical treatment

Just after Jessica’s (JJ) 12th birthday her life changed overnight when she started to experience uncontrollable movements in her arms and legs . Within 4 weeks she was having hundreds of tics a day , which were complex and vocal . Our GP was fantastic and sent us straight to A and E but unfortunately this was the start of the NHS letting us down . They said she had anxiety and just to ignore them !!

4 weeks after the first Tic , feeling extremely unwell and exhausted from all the constant movements JJ collapsed and started to have a seizure . I had never seen one before , rang 999 and she was blue lit into hospital . Kept overnight but again told it was anxiety . At this point JJ did not have any mental health issues so I knew this could not be right !

For the next 6 months we were rushed to hospital 3/4 times a week , often into resuss after experiencing up to 100/120 non epileptic seizures a day and many tic attacks . No support or referrals were made and we were given a diagnosis of FND . I knew this was not right and demanded referrals , no department would accept any referral as all said it was anxiety ( CAHMS said too complex ) and we were told it was because she was watching too much TIk TOK !! At this point I realised the NHS would not help and I had no choice but to look to private doctors .

Luckily we eventually got a diagnose of PANDAS - (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) this is a

neuropsychiatric condition which is triggered by a misdirected immune response to a Streptococcal infection which results in many awful symptoms .

Jessica’s main symptoms are

Tourette’s , Non epileptic seizures , paralysis, extreme pain /fatigue & OCD She suffers many other symptom's and never feels well ! Due to the complexity of the illness her mental health also really suffered too with PTSD due to lack of care and trauma of the illness .

We class this illness as the gift that keeps on giving as symptoms change over time and can disappear then return depending on the trigger .

PANDAS is triggered by exposure to any infection or illness and JJ does not have to catch the illness to trigger a large flare in her symptoms . We know immediately when she is flaring as her pupils become huge , seizures and tic activity take over and often paralysis or dystonia occurs . ( her limbs lock in abnormal positions )

JJ has never felt well in 3 years , she has not been able to attend school and regularly uses a wheelchair either due to paralysis , seizures or extreme fatigue . The longest she has been paralysed for is 4 weeks ! JJ is losing the best years of her life , her teenage years where she should be having fun with friends and making memories !

We see many private doctors in London - immunologist , neurologist , psychiatrist and will continue to do so . Her treatment includes daily medication which includes antibiotics, anti inflammatorys , anti virals , ant depressants , and supplements .

She also has steroids when her flares are at there worst !

As you can imagine this has all come at an extreme cost and to date I have spent £40,000 with the help and support of my amazing parents .

The last option of treatment is IVIG

(Intravenous immunoglobulin ) this is not available on the NHS but is used to decrease symptoms and has the ability to “reset” the immune system.

The reason I have now set up this Go fund me is we have been offered the chance to get IVIG for JJ in London . This won’t happen overnight and comes at an extreme cost ! I have been told £12,000-£15,000 a time and she may need 3 infusions .

we will be organising some fundraising events and would be extremely grateful if you could support us in raising some of the money needed .