Has my child got Pandas

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in September my 12year old son started senior school and loved it , two weeks later he felt ill , after a week we encouraged him to go back to school and he got upset ,we asked why he had no reason just afraid , he begged not to go , we got him there and he would cry and beg not to be left , he ended up losing his temper which we had never seen , slowly he started to change into a stranger , one minute he would be our normal chilled don and then he would flip into and crazed child ....wears now six months on , he still Wont go to school , he's having mental health help , he begs not to be parted from me , bed time is a nightmare , he has tantrums over anything , he does have food issues but he constantly wants food , and gets angry if it's not exactly what he wants , shoes and clothes are being an issue everyday , and he gets terrible itches ........he's seeing a counciller but no one seems to be able to help .....please can anyone help me , our family is being torn apart , he often says he wants to die or wished we were dead ......

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  • Posted

    I am so sorry to hear you are all having a really awful time with your poor boy...Just wondered if he had had any blood tests done to see what his Strep antibody levels are like? This was how my daughter's PANDAS was officially diagnosed. (A friend who was a Pychiatrist had been on a PANDAS course and let us know she thought it was that, but that GPs don't come into contact with many kids with it so usually refer straight to Psychiatry so we knew to bring info on it to all appointments for them to read.) She was also put on antibiotics which seemed to help a lot and I tried to sneak turmeric powder into her food and drink (like hot chocolate to disguise the taste) as it is a natural antibiotic.

    Does your son have any tics or strange movements he does,or any obsessions or complusions to do or eat weird things?? It would be good to get blood strep antibody levels checked so you guys can either rule PANDAS in or out so you know what you are dealing with. They think the Strep antibodies made by our own bodies to fight against the Strep bacteria see part of the brain as being a Strep virus and attack it, leading to all these weird symptoms.

    Are you UK based? If so I would go to the GP and take a copy of the info on one of the websites on PANDAS with you so you can show them and ask for help. We were picked up by one of our more with-it GPs when my daughter's strange symptoms didn't settle and we were sent to the local Paediatric Hospital Assessment ward. They then did the bloods. Again, I went armed with info on PANDAS to give them. Her Strep antibody level was very high, indicating she had had a recent infection, and she also had a cut that wouldn't heal which had active Strep in when they swabbed and cultured the swab.

    My other thought is if not PANDAS whether something traumatic could have happened at school, or even the threat or rumour of it, that your son is terrified of but doesn't want to talk about?Hope not but it would be good to find out if it is PANDAS either way.

    I hope he settles soon. It must be awful for him, and it is so difficult being a parent when there is no obvious way to help(like pain-killers or plasters). If it is PANDAS he will need a lot of rest and quiet as it is a massive hit to the immune system and takes a really long time to recover from a knock like this. Our Hospital Dr referred us to a Pychiatrist, and she prescribed Bio-melatonin, which helps my daughter get off to sleep but is a natural hormone the body makes anyway. Sleep is so important to recovering, we found.

    Sending you all my very best hopes for a happier, more well boy soon, and the right medical person to help get you there, and patience and love for you all to be able to support each other to get through...xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

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  • Posted

    I am reading this and find it interesting, thank you. I too, will check whether our thirteen year old son has PANDAS and will ask the psychiatric hospital where he is staying to check the strep antibody level. Thank you for this as it's only recently that I am finding out about PANDAS.

    Our son had ticks a year and half, then last september 2015, he went to hospital as he refused to eat and his heart stopped beating properly. After that, he was transferred to a unit in West Sussex called Chalkhill, mental health and adolescent unit. As he recovered his body weight, his mind got worse. Much worse with OCD. He now has tons of rules he thinks he needs to follow: not to talk (he has not said a word for 4 months to anyone!), not to shower, not to have fun, not to change clothes, etc. the list goes on. The worse is that one of his rule is to 'keep away from my family' and this really hurts as we cannot approach him.

    Not one doctor has thought about a blood test for Strep infection. Yet he is highly anxious, depressed, has extreme OCD...

    I am sorry we all seem to be going through an awful time. It's hell for all the loved ones and for the patient. My hope is that he does have this PANDAS, so we can move forward and start seeing him again.

    Thank you for any advice or recommendation of any good UK specialist doctor who would know about PANDAS.

    Best wishes.

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    • Posted

      Hello Sophie, I saw your post and wondered if you had made an progress with your son? Also.... Did you speak with the doctors at your other sons in- patient unit? There are a number of PANDAS/PANS support groups on fb.... Join, you'll get lots of support and guidance to.x
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    • Posted

      Thank you for your reply. I am not so good with facebook but I'll have a look.

      Our thirteen year old son has been moved to a fourth hospital but no progress yet has been made. It's terribly sad as he's so unwell and distressed when we visit, that for two months, we've stopped visiting.

      ​We have asked for a blood test, but our son refuses and the ward manager (at previous hospital) was not ready to take the risk of physically restraint with a needle (to protect both Louis and staff). So unable to do a blood test and still stuck.

      ​Does anyone know of any children who have become elective (or selective) mute? Able to speak but choosing not to. It's been 6 months our son has NOT SAID ONE word to anyone.

      ​Any recommendation? Anyone who has faced a similar situation?

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    • Posted

      Sophie, look up the pandas physician network, symptoms of PANS or PANDAS Include:OCD, Tics, sensory issues, eating restrictions, oppositional behaviour, aggression rage, they can also develop delusions, hallucinations and much moreetc.. They will not present with all symptoms necessarily, a lot if these kids are diagnosed with OCD, ODD,ASD, Tourettes and so on.
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