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Has anyone experience with PANS/PANDAS

8 replies

Trixiepixie6 · 12/11/2018 16:11

Hi, My DS is 10 has had a dramatic change in personality over the past few months, the onset was very quick and very severe. His symptoms are ocd type of behavior, many tics, anger, meltdowns, spd (Cant stand being touched)etc my cuddly happy funny little boy is gone. We have wracked our brains as to what has caused this, a small insignificant change, bullying, abuse, brain tumor everything has crossed my mind. I also looked up pandas but discounted it as he didnt seem the ‘same’ as the kids I saw on YouTube. Anyway I’ve been trying for 2 months to get him help , the child mental health services here are awful under funded under staffed and even going private isn’t much better (I have a private apt but not until the end of the month) anyway something happened over the weekend and I had enough I went to A & E with him I was told to go there by my gp in case of emergency, we were sent home and told to come back the next day and someone from Camhs would be there to see us, we arrived the next day waited hours eventually got to see someone. They said they wanted him to get checked for PANDAS (I never mentioned pandas to them) they also want him to go on a very a low dose antipsychotic medication which I’m a bit scared about. But to do any of these things they need a blood test, my DS is all over the place he will not in a million years consent to a blood test. They also need an ecg? Because these antipsychotic meds can interfere with the heart. They said they can give us the antipsychotics without the tests but it would be our decision, they say it’s very low dose just to take the edge off his symptoms but I’m so afraid after they said it can affect his heart. I don’t know what to do or where to turn. Do I let them give him the antipsychotic meds this might enable them to get bloods from him To check pandas etc. The more this goes on the worse his behavior is becoming. Thanks for reading

OP posts:
JiltedJohnsJulie · 12/11/2018 21:27

Oh Trixie I have absolutely zero advice ornelp for you, I’ve never even heard of PANDAS.

Have they given you any details of organisations or charities where you can talk to other parents?

Hallloumi · 13/11/2018 11:35

I'm a GP who has heard of PANDAS but never seen a child with it.

It seems very odd to me that they would want to start anti-psychotic medication if they think he might have PANDAS. I would be reluctant to allow this for my own child. The blood test and ECG (if starting anti-psychotic medication do seem sensible). Who from CAHMS did he see- nurse/consultant? I would want him to see a paediatrician and probably a psychiatrist form CAMHS, I appreciate this may be difficult but PANDAS is not strictly speaking a psychiatric diagnosis. You may be able to find a private paediatrician.
Re the bloods- most kids will do fine with numbing cream (EMLA). If he's already in a state about them I would see a paediatrician first though.

www.e-hospital.co.uk/resource/pandas/

Trixiepixie6 · 17/11/2018 12:50

Sorry I’m only seeing these messages now thanks for the replies. DS is very defiant (which seems to go hand in hand with Pans/pandas) and refuses to get the bloods done. Our gp was referring us to a pediatric neurologist but she wanted the gp to get bloods done first which seems impossible. We are hoping to get a sedative prescribed by the psychiatrist in Camhs to help get the blood test/ecg etc. GP said she can’t prescribe anything like that herself. We have only met with CAMHS once for an initial meeting with a psychiatrist and Ot but we have a meeting with them again on Monday to see a clinical psychologist. I will be insisting he is checked for physical causes first before any medication. I really do believe it’s physical it just came from no where and he has deteriorated so quickly. It’s taken over our lives and I am so scared. Thanks for reading x

OP posts:
JiltedJohnsJulie · 17/11/2018 13:51

It must be so distressing for all of you Thanks

Stircrazyschoolmum · 28/01/2019 13:55

Hi Trixie I was wondering how you were getting on with supporting your son?

My 11 year old boy has also undergone a sizeable change in his personality in the last couple of moths. He has developed a number of motor tics and several OCD rituals associated with organising / ordering things. (For example lining up shoes) Things got so bad before Christmas that I booked him a doctors appointment but he was very reluctant to go and refuses to acknowledge there might be a problem. I’m not convinced yet it’s PANS / PANDAS but the link above supplied by hallloumi was really useful (thank you!) I guess I’m at the stage of trying to rule out all possible causes.

Anyhow, I hope you have gotten some answers and wanted to wish you well. xx

cacolac · 16/09/2020 23:29

Hi @Trixiepixie6 . Have you made any progress with you son? I really hope so. My son had a behavioural change age 7, which began in 2018. He has been diagnosed with Pandas. An initial course of antibiotics worked but subsequent ones haven't. We are now working with a private team to try to figure things out.

Cantfeelmuchthesedays · 08/11/2022 23:41

Hi, did your son get help in the end?

Ohlookitsarainbow · 24/03/2025 00:41

Hi how is your son

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