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Anyone any experience with PANDAS

(17 Posts)
chloefisher1 Sat 11-May-19 10:18:53

Hi I really hope someone will reply to me. Has anyone any knowledge or experience with PANDAS??? my son hasn't been himself since Nov 2018, but I've put it down to me having a baby in October, but after doing some research I'm thinking it may be something else. He had 3 pretty bad throats infections from Nov-Feb, and he's just been a lot more challenging behaviour wise, I do think some of this could be down to the new baby, but now he seems to have developed like a tic, he keeps rolling and blinking his eyes, and I have noticed him wanting to wash his hands and toys more, worrying about things he shouldn't be. The doctors are pretty useless so I'm trying to gather more info before going back so they don't just ignore me. Any help?

OP’s posts: |
JiltedJohnsJulie Sun 12-May-19 07:41:54

There is an MNer who's been posting about PANDAS. If you do a search, you should be able to find her threads smile

chloefisher1 Sun 12-May-19 08:55:25

I'll have a look thanks

OP’s posts: |
smalloranges Wed 02-Oct-19 12:20:12

I have only just come across your post. Are you any further along with this? We are having various consultations at the moment as our paediatrician is pretty sure my son has PANDAS. We are London based. I can give you the names of some good Doctors if that’s helpful. We are lucky enough to get private insurance through my husband’s work and so are seeing various doctors privately. I went to the GP to update them on the situation and she looked at me like I was mad- she’d never heard of it and implied I was making up a random condition to excuse my son’s bad behaviour. Sadly, very little is known about PANDAS in this country and you are unlikely to get help with this on the NHS unless you really fight to be heard. I would ask for an initial blood test to determine strep titre and mycoplasma levels (NB throat swab for strep is not sufficient). If they are too high, this would point towards a possible PANDAS diagnosis.
When my son was tested, his strep titre and mycoplasma were extremely high even though he had no outward symptoms of a strep infection. We were told he’d likely had a strep infection a while back which was left untreated (read: GPs overly cautious about prescribing antibiotics!) and the strep infection basically stayed in his blood and then began interfering with behavioural parts of the brain - it is pretty complicated.
Anyway, my son has been on antibiotics for 3 months now and we have definitely seen an improvement.

baby1baby2 Wed 02-Oct-19 22:00:11

My friends son was diagnosed with PANDA and she joined a Facebook group. My friend is in Australia and the also really managed diet after diagnosis and bought this recipe book, see below. 12 months later her son no longer had panda. I hope this helps you

Sally Fallon
Nourishing Traditions: The Cookbook That Challenges Politically Correct Nutrition and the Diet Dictocrats

cacolac Wed 09-Oct-19 16:37:17

Hi 18chloefisher1,

Sorry this is late to add. How have things been with your son? I hope things have settled for you. My son's behaviour changed dramatically last year, and only gradually returned to himself over the summer. He now has a sore throat and cold and some old bad behaviours are returning. I'm thinking of making a private appointment with a pandas doc as last year, the gp didn't help at all.

smalloranges Wed 09-Oct-19 17:07:01

Cacolac- has your son been diagnosed with pandas? I also found my GP useless.
My son has now been diagnosed by private doctors and even with their reports etc, it seems the GP is reluctant to engage with it (she had never heard of the condition and I think she is sceptical about it).

cacolac Fri 11-Oct-19 17:56:31

Hi smalloranges. No he hasn't been diagnosed. I am waiting to speak to a doc again. They were useless last year. He was even threatening to jump in front of a car, he sometimes was do overwhelmed and depressed, in between being hyper and agitated and raging outburst. I seems he is sinking that way again, since this latest infection. Can I ask which doctor you consulted?

smalloranges Fri 11-Oct-19 18:45:53

Dear Cacolac, I’m so sorry to hear that. My sympathy is with you- it is hard! It sounds like a similar situation to ours, though in our case behaviour flares up not only when he is obviously ill, but when he comes into contact with someone else who is ill (eg earlier this year, a girl in his class had strep throat, and although my son didn’t catch it in the sense of getting a sore throat, it sent his strep levels in his blood soaring and he was subsequently very difficult for a few weeks).

We are London-based and went to see Dr Fysh, a general paediatrician, at the Portland In June this year. We were at our wits end with defiant behaviour, aggressive outbursts, waking in night etc. I expected to be told we had a psychological issue, but Dr said there was a small chance he had something called PANDAS. After running some blood tests, which showed extremely elevated strep titre and mycoplasma, Dr said he thought that it was indeed PANDAS and referred us on to Professor Gareth Morgan (an immunologist- PANDAS is an autoimmune condition). He also advised us to see Dr Maria Kinali, a neurologist, and Dr Paul Bain, a psychiatrist, just to check there are no otter neurological or psychiatric conditions in play (both of these doctors are familiar with PANDAS too and can help with the diagnosis). The thing is- with PANDAS, there is no definitive test - a lot of it is observational and a matter of ruling other conditions out.

Note that two of the major symptoms of PANDAS which tend to be focused on are OCD and ticks. When first read about PANDAS I thought there’s no way my son has it as he doesn’t have OCD or ticks. However- it then began to dawn on me, he is actually very specific about which items of clothing he likes to wear, and about always sticking to the plan... perhaps OCD symptoms. And then the neurologist pointed out that the eye rolling he does -which I always thought was rudeness, is in fact a tick.

There is a good documentary about it on amazon called “My Kid is not crazy” - it features some quite extreme cases of PANDAS (luckily my son is nowhere near as bad as the kids on the programme), but is a good insight into the condition and the controversy that surrounds it as many Drs don’t actually believe that PANDAS exists (which then leads to problems with insurance companies which can refuse to cover this condition based on what the “non-believers” have argued). I think this is such a fascinating subject and it is amazing how few people know about it.

cacolac Fri 13-Dec-19 14:59:12

Small oranges; thank you for your reply. For some reason, I've only just seen it. I finally have a referral to a pediatrician but that has been postponed ( staff shortages). Thank you for all of your information. My son is up and down. It's heart breaking to see. How is your son doing?

cacolac Fri 13-Dec-19 15:01:21

How is your son doing, chloefisher1 ? I hope things have improved.

cacolac Fri 13-Dec-19 15:02:42

I thought the above link had some interesting info about blood brain barrier permiability that could be relevant.

cacolac Fri 13-Dec-19 15:04:59

Also. Has anyone read about vitamin d lowering strep? May be worth a shot. I'd supplement with magnesium at the same time though as d can deplete magnesium.

smalloranges Fri 13-Dec-19 16:24:09

Similarly my son is up and down. We’ve just had a really good patch but that all changed yesterday after the end of term (it’s like he was holding it all in just waiting to let it out.) yesterday was also a full moon (many people report exacerbation of symptoms when there’s a full moon - google to find out more- it’s not as wacky as it sounds!).

I’ve learned just to enjoy the good times and ride out the bad as far as poss, giving regular ibuprofen when symptoms are bad. I agree though- when things are bad it is just heartbreaking.

Herewegoagain56 Sat 14-Dec-19 13:38:16

You have to go private but I would speak to a nutritionist/natropath at NatureDoc, they have good knowledge of pandas and should be able to help. Alternatively there is Stella Chadwick in London who has a lot of experience also. There are definitely things you can do to help

orangetriangle Sun 15-Dec-19 22:18:29

there is a good knowledgable support group on fbx

Adriank Sat 04-Jul-20 14:36:44

Hi there did Professor Morgan sort the problem out as was it necessary to see the neurologist etc as sometimes I think they refer for the sake of it

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