Thinking I may have 2 DD with mild PANDAS

[pola5]

Ill try to be brief.... DD8 referred by regular MD to CAMHS at age 7.5 for anxiety and other behaviours- fears, auditory hallucination About 3 times in 3 years), separation anxiety - mild. emotional lability {sp?} Most of the time seemed sad- worries of the = world. Behav = need to be bearhugged, skin itchiness ( no excema), hanging upside down off the sofa / bed. climbing the kitchen cupboards looking for treats- a need to be ' up' high - hence the climbing. fear of someone outside at night, fear of the house alarm being set off by younger siblings wandering to toilet in middle of night. fear of getting locked into a toilet -never has done- fear of going anywhere in an aeroplane - last trip was 3 years ago. nightmare - sore ears. silly goofy behaviour at times. social anxiety . cannot enjoy parties where there may be dancing- self conscious. fear of Santa and def fear of the tooth fairy. Writing lists - Names, car registrations - all the names of moshi monsters Xmas 2013. I always reckoned these issues were worse when she was sick - on an antibiotic or fever med - actually i put it down to colours in the antibiotic - yellow - amocicillin usual one .She has had tonsillitis frequently as a young child - def around the time of our first family holoday - she was about 3 year old. Def worse behaviour during breaks from school - much more anxiety, so much so I could not wait for school to return - ( DD8 had antibio at 3 weeks for excema on face) Enough said.

DD6 is showing similar symptoms- JAn 13 - cough sniff tic - lasted about 3 weeks - i think - I forgot about it. wasnt overly concerned. Gran was dying during this time and i think I attributed it to stress in the family. I think at some point during that year OCT ?? I saw an increase in adhd type behaviours- - aggressive to younger dd3- out of character and my immmediate reaction was - someone must be bullying you - sure enough - a little boy was doing some minor things - making faces etc. spoke to teacher - moved the little boy and i thought things resolved. ( by the way dd6 had excema - 90% clear since last NOV. However has had a chronic cough since then and always gets same between NOV and April on and off. has been on steroids once and anti bio once but didnt really help - Ps DD6 had antibiotic at2 weeks for cough. Roll on Feb 12th - I was off with tonsillitis - DD6 began tic around week later? sniff cough comes back - a full year later - with hyper behaviour- and a constant looking for sweet stuff, biscuits, anything with sugar- Im thinking she has diabetes ?? While watching her one day recently I noticed - lots of twirling, shoulder shrugging, fiddling with her hair - knotting it ( fear of getting nits- big campaign recently in school re nits) writing a list of what way she would tie up her hair on a daily basis- constant need to hug me when im leaving or she's leaving. hoarding - lots of stuff under her pillow - which she refuses to remove - she lost a tooth on dec 24th 2013 and another beginning FEB- She has had about a full month of having trouble passing faeces -constipated ON DEC 31st spent one hour in the toilet , crying and trying to go - eventually did - but the fear has not gone - and had many accidents during JAnuary as a result of leaving it too late. Now she goes but requires me to be present in case she has trouble - dont know about her having infections - or strep - was called to school in Dec as she had a high temp but nothing materialised. DD3 had tonsillitis of very bad throat on DEc 7th - My DH had history of tonsillitis as a child - I never got tonsillitis until I was 21 - my twin did tho- But I was always a worrier - unlike my sister - so I UP UNTIL NOW JUST THOUGHT I AM REARING DIFFICULT ANXIOUS KIDS _ am I though? I am a teacher and pretty au fait with kids behaviours but feel I am failing with my own - sometimes I dread the thought of going home - what behaviours dd8 would be displaying- on sat night she said - I wish i wasnt in this world - now she did not really understand the concept of what she said - but it was a reaction she had to a hard day she had had at a a friends party - she cannot deal with rejection - even minor falling out with friends - takes it so much to heart - Im never going to speak to her again - shes so mean". Please advise - should I be looking for help ? I know others have more difficult cases- I feel I am just about managing these behaviours - but should I be - just about managing - My close family reckon - they are attention seeking kids- they have me wrapped around their little fingers- and manipulate situations to get what they want. There is probably an element of truth there.. Any advice appreciated - PS I am in UK/ IRELAND

[pr40]

in my experience, the shorter and more precise the post, the better the response you are going to get. you may want to ask one question per post, like is this pandas, given the following symptoms?

there are several authors on the forum from UK and Ireland. It will be easier for you to find them if, again, you make a post with that as your topic.

best of luck

Edited March 10, 2014 by pr40

[qannie47]

I think it is definitely a good idea to find a Pandas friendly doctor. Even if it does not end up Pandas, the research has yielded a lot of insight that bleeds into many neuro-psyche issues. Much has been learned about the relationship between a unhealthy gut and mental illness. I hate that word...but it covers much. Light has been shed as well about how the autoimmune system plays a role with a lot of the behaviors you described. Many psychiatrist are now running such tests like the "OATS" test before running to psyche meds. Then there is methylation, inflammation, Lyme,....the list goes on and on. All of these things of course overlap.

 

My suggestions to you is to read through a lot of these thread. The forum threads will help to guide in understanding what is applicable to you and your daughter.

 

Most importantly, I think the first thing I would do is find a doc whom is versed on all of this.

 

Best of luck

[ktdommer]

I am sorry you are going through this. I know as a mother your heart must be breaking. I am new to PANS with my son but have been dealing with Lyme for nearly 4 years with 3 in the family. My son also had intense, over the top carb cravings as if he was being driven to eat. This doesn't sound like diabetes to me but more like parasites. My son has babesia with Lyme and when it rages, his cravings rage. I always felt it was like he was feeding something and now I know. He wasn't like that before.

I am a teacher also and have found my sanity at work which is ironic when most teachers feel the opposite.

I hope you find the answers soon and get help.

[lulu4]

Pola, so sorry to hear of the frustration and anxiety that you are feeling. I've been there. It sounds to me like it would be worth it to investigate further what is happening with your children. If your daughter had tonsillitis often before, that's a red flag. Has she been tested for strep? And your younger daughter was on antibiotic for a chronic cough; has she been tested for anything? It sounds to me like it is worth it to get them tested (and always request the test results be given to you, so you can keep your own records, especially if you end up going to different docs in the future.) There is SO much great information on this forum. It can be very overwhelming, but I learned so much from people here, including where to find the PANDAS doc that we see. There is so much to consider, including doctors, testing, medications, supplements, diet, and counseling. You are wise to question and look for ways to help your children and your family. It feels like a lot of work, and it is! But if you can get some help, you all will benefit. I would start by either requesting strep tests, or by looking for a doctor familiar with PANS and go from there. Good luck to you!! I wish you well.