Parents of children diagnosed with PANDAS

Hi am a mother with a child with PANDAS who is currently the worst patient our PANDAS doc has seen from the how long it took to diagnos ( 3-4 years ) and all the psych meds he was on. What I can tell you we see the BEST doctor and our son is geting better but it will take yeras because of how long he was sick and the detoxing off antibiotics. my advice is to NEVER allow them to give you any psych meds. Psych meds make PANDAS worse and are the worst possible think you can give to a PANDAS kid it does the complete opposite it makes them worse no matter if it's a stimulant, SSRI, Anxiety med, Anti-psychotic NO psych meds. You need to find a pedi that will put your child on long term antibiotoics. Mild ones at a high dose and ALEVE ( Yes ALEVE) 2 times a day to take down the inflamation sourounding the frontal globe of their brain were the infection is. That's it NO IVGI it's expensive and if it does work it only works for a short period of time, same thing with steriods only works for a short period of time they are bandaids and IVGI is a very expensive bandaid. It's pediatric so remeber antibiotics until at least 18 years of age or sooner some outgrown before 18. I myself have had to wean and am detoxing my son of the most dangerous anti-psychotic out there and he is 100% better off then on so whatever you do NO psych meds. You need to do research find a good pedi that bellieves in PANDAS and will put your child on the right treatment plan. My doctor ONLY take 100% PANDAS cases and has a 100% cure rate so trust me I have done my research and I have seen the results. But along with treatment once you get the right treatment (unless is diagnosed right away which was not our case our son has been sick for many years and very developmentally behind) you will need the best providers in your home all week, skills trainers, respite, in-home therapy. It's not just finding the correct treatment and doctor it's also finding the correct team. We have therapist at hour house from 3 different agencies that follow the same behavior plan 6 days a week! it's a TON of work and only because doctors won't do a simple strep test or Lyme test. They send off to menatl health providers that's why all these kids are sick and in residential homes my heart breaks becasue once they are there is no going back. Good luck and I hope I shed some light for I have been through a huge journey that I still live everyday and will for years but I truly beleive there is a light at the end of the tunnel. And remeberback to school all those illness makes the nehaviors and aggressions worse. My son is going to doctor today HUGE increase in behaviors/aggressions and our entire family is sick. good luckit's a long journey first start is finding the right doctor most are psych doctors who beleive in still treating childrens with psych meds, you can also have your pedi order the cummingham panel if they are willing. any doctor can order it for a patient. First test on PANDAS not 100% yet but pretty close. Good luck!

Could you poasibly share what psych meds? Before our daughter was diagnosed she has been put on serious psych meds and I am hoping to get her off them. We see a PANDAS specialist tomorrow and am sacred because we know nothing about this disease

Our son was put on stimulants, SSRI's, anti- psychotic and gunfacin ( not sure what class this is) he has responded horrible to each and everyone he was taken off immediately all of them within 2 weeks that how bad he responded. They kept him on antipsychotic for 3 years started at dose .25mg up to eventually 3 mg a day ( highest dose a child can take) it took 6 months to wean him, $25K in home damages and he beat us up/ bite us and attacked us 24/7 during those 6 months. He is still detoxing it is the worst class of meds and takes 9 months to over a year to detox. But he is 98% better off all psych meds. The only one at this point I would even comtemplate him trying ( while going through treatment) is a benzo like a small dose of adivan to help with anxiety and OCD while we are working on getting his high strep titers down. But that's it I have only just decided this if it comes to it because he is suffering so much but I would NEVER another psych medication anywhere near him.

Good luck I have seen first hand what these meds do to PANDAS kids and the weaning processes is even worse! Be careful they treat kids as Guinea pigs with dangerous psych meds.

Would you be willing to share who your doctor is?

Who is the physician dealing with this? I would love to contact them regarding PANDAS patients I have. Thanks!

Amie, who is your physician you used and what city, state is the doctor in?

Hi there

I know you posted over a year ago but just came across your post whilst on a google search for PANDAS support or consultants in the U.K. Did you find anybody in the U.K.?

My 4 year old has been showing symptoms but we are just being told it's tics and I don't think it is so trying to find someone who speaclises in PANDAS.

Thanks

Hello Katie, go to PANDAS PANS UK on Facebook, there are 370 parents with kids.

Hi my grandson is 4 and had a seizure then he has had a sudden onset of tics since. His behaviour has also changed. How did your son go on?

Hello my name is Ebony suber my friends son was diagnosed with pandas and she would like to know any information on how to treat this. You said you had postive results? can you plz email me back or call 8162949830 and share exactly how you are going about treatment for your child.

Hi Jules

I wondered if you could suggest a doctor in UK?

My 15 year old started this summer with characteristic behaviours and I would like to get her some help.

Thanks

Clair

Hi Jules

Just reading through this thread in another desperate attempt to find out some info about treatment for Pandas in the UK. I noted from your comment that you had seen some positive results? I would be very grateful if you would get in touch regarding any success/suggestions you may have. Many thanks.

Hi Mandz just to let you know that i have a 10yr old with PANDAS and we have had some success using long term antibiotics with reductions in both sore throats and hearing voices etc

hope this helps

Thank you Tina

Our 11 year old son has had symptoms for almost a year. We have been referred to a paediatrician but GP didn't seem to know much about Pandas. Our child ticks just about all the boxes on the symptoms list. Extreme anxiety, emetophobia, etc... just hoping we find a progressive doc who will give the go- ahead for antibiotics. Pleased to hear you've seen improvements.

Hi Mandz1,

Sorry to hear everyone else's stories on this nasty syndrome...Our poor kids, and poor us. It is a horrible thing to have and to support people through.

Our 8 year-old came down with a Pandas episode last Easter. She had all the symptoms, anxiety, obsessions, compulsions, food phobias, didn't want to leave me, couldn't sleep as scared, physical tic movements and was doing other movements in evens numbers. Poor soul was able to say she had no idea why her body was telling her to do such odd things and I was terrifed she was going to hurt herslf.

Thankfully we have a friend who is a pychiatrist, although not a paediatric one, and when my daughter had what looked like a nervous breakdown after two nervy, slightly anxious days we called her as well as the GP. She asked us to get the GP to rule out UTI and Diabetes, then had a think and a couple of days later suggested PANDAS as she had bee on a course on this a year ago. It was such a blessing she had as we were able to get access to internet info to pass on to GPs and to say a Psychiatrist had suggested Pandas and eventually got an emergancy referral to Paed Dept at Hospital who did bloods and prescribed antibiotics and eventually to Psychiatry Dept who prescribed Bio-melatonin which is helping my daughter get off to sleep. We went everywhere armed with internet printouts to pass on to medical staff as my friend had warned us most folk hadn't heard of it.

My friend says GPs don't get training in PANDAS as it's still a bit controversial and when they see the odd behaviour the kids normally get referred to the Psychiatry Dept who then arrange tests and prescibe. This is scary though as the waiting list for Psych is so long and antibiotics early seem to really help. I guess GPs don't then get much feedback from Psyc but would be ace if they did so they could share with their colleagues and be aware it existed to catch it sooner.

My wee girl is slowly improving. I give her turmeric in food (in low doses at first so she got used to the taste & be prepared for some spitting out!), along with garlic and chilli, as natural antibiotics, (and sneak it into her hot choc with ginger and cinnamon!),& take her to the Dr as soon as possible if she seems to need antibiotics. We made bedtime heaps earlier as sleep is a great healer for the immune system, and with the help of melatonin during the week she sleeps so much better.

She was off school a lot between Easter and Summer on the psychiatrist's advice, as PANDAS is such a massive hit to the immmune system they need heaps of time to recover, and returned to a reduced programme of 3 mornings (Mon, Wed & Fri) around mid June. Following Summer she has been able to go back full-time to school, with support. She has been diagnosed with an Anxiety Disorder, and possibly Spectrum issues, which are being investigated. Psychiatrist says she has seem 3 other kids with PANDAS symptoms, 2 with Spectrum issues and one without, and speculates maybe untypical brain-wiring makes our kids a bit more vulnerable to being hit hard by their own antibodies to STREP.

School have been superb but it is hard being a parent of a kid who is off for mental health reasons, where it's not immediately obvious anything is wrong, whereas if it was a broken leg or flu the symptoms are immmediately visable. The psychiatrist was brilliant with me on this and gave me 'permission' to take my daughter out and about on the days she was off school so she wouldn't get too used to peace and silence and the noise of school wouldn't be too much. I was feeling I needed to keep her at home, resting, all the time. School have organised a place to escape to for calming down time on my and the Psychs request and she has a pass she shows to her class teacher when she need this, they have a 'Nuture Room' she has small group time in, and the kids in her class know she has been illl and just gets a bit anxious at times because of it. She also has a best buddy in her class who has stuck by her wiiith support from us adults around and who has been amazingly accepting of tics and anxiety.

I have to keep reminding myself on the bad days that my daughter has had what equals a brain injury so any progress is great, and to take each day as it comes. If she is feeling unwell she stays off school so her immune system stays strong enough to fight off other Strep attacks. We have lazy weekends and go at her pace. Also we need to look after ourselves as it takes so much energy to manouvre us and the kids through the days' hurdles.

Hope some, if any of this is helpful...Please let me know how things are going with you...I hope you're getting the support you need...xxx

hi, i have 7 and 1/2  years doter and she started to show some symptoms this september that fit pandas, we got no support in school and her enxsaety was so bed  we started home schooling but she is regressing in speach, wrighting, maths.... i talked to gp she said is school nurs teritory as is educational nature even do she is developing ocds  more and more. bin looking for doctors who have heard of pandas but no luck and then i found your replay. could you please share with me name of  pediatrition  who was so much help to you and your  little girl? you can privet messige me  it would mean so much. thank you

Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

I found your post today and was wondering if you can tell me a little about the treatment your child got for PANDAS.

My daughter has many of the symptoms and the consultant feels she has PANDAS but I have been waiting 7 weeks for blood results. She is on antibiotics with no results. She has not been able to attend school since December. I'm feeling so frustrated and heartbroken to see how she has changed overnight.

Any advice would be really appreciated

Judith

Hi Judith

Which antibiotics is your child taking?

She's on 250 mg penicillin twice a day for past month

We tried Penicillin for 10 days (actually made things worse)... within 48 hours after changing to Augmentin, we noticed improvements. Might be worth discussing this with your child's doctor.

Hi Jules, I know the thread is over a year old. I hope you have found the right treatment by now and your child has fully recovered or at least improved. I have a six and a half years old girls with horrible symptoms of pandas and we are really struggling to get a diagnosis. We live in London and the gp does not even seem to know what I am talking about. I would like to know how you managed to get a diagnosis. Thank you so much for your help. We are desperate and hopeless at the moment and our daughter and the whole family is suffering.

Elena

I would love to find out what treatment you used.

Go to PANDAS PANS UK on Facebook, 370 parent with kids, names of doctors treatment etc