Padres de niños diagnosticados con PANDAS

Salud infantil
61

Hi Pandas mom. 

The White paper is all about how the term pandas could be changed to pans or pitands due to the lack of strep positive results. It suggests that a list of symptoms that previously had to include strep exposure (pandas) was still a condition without the strep as its v difficult to get a positive strep swab. Try typing "pandas not always from strep" I saw http://www.childmind.org/en/posts/articles/2013-4-23-pandas-pans-about-acute-onset-ocd came up which had some info on it. I hope you are able to find help on your journey to answers. 

I printed off info and took it to his teacher, and every year when his teacher changed, I did it again. His consultant said if anyone noticed or asked about it, he should say "I have pandas, sometimes it makes me do funny things I can't stop. It's just who I am." He also said each tic is like trying to stop a sneeze, virtually impossible! That is what I told the grown ups. Both those phrases helped us cope as We had something to say that explained things brilliantly. People aren't usually cruel, just curious and telling them something simple usually gets them on side. 

To try and give you some hope, My son is now 10. He has hardly any symptoms associated with pandas and hasn't for a year or so. I keep an eye on him but as he has grown the frequency and severity have lessened. He had a pretty tough 3 years from 5-8 and i despaired at times, but it all seems to have settled now. (Fingers crossed). He has in fact just passed his 11+ and won a place at the best school for miles around as a result. He coped brilliantly through the whole process. We are very proud of him and all he has achieved despite a really rough ride at times. I really hope your situation resolves like ours and at the hardest times you can see a chink of light at the end of the tunnel. It does get better. X 

62

I have a 13 year old daughter, a year ago she had servers bacterial tonsillitis and had similar symptoms a few weeks ago, in the last week she has developed a constant eye rolling tic which she can't control.....we have seen 6 different docs and none have any answers...it is taking over her life and we need help but no one seems able to help us or offer any answers...its at the stage where she has been rolling around the floor wanting to pull her own eyes out to stop this tic! Medway hospital in kent seem unable to offer any answers....I just want to help her but feel like everything we say to our doctors fall on deaf ears......can anybody help please? We are desperate 

63

Hi, I was wondering if you could send me the name of the peadiatric consultant you saw at Derriford? I am struggling to get any GP's or consultants to consider PANDAS or even tak my daughters condition seriously. We are in Bristol so either Exeter or Plymouth are easy to get to and I should be able to get a referral if I have a name.  I hope that your son is doing ok.

Best regards 

Nicky

 

64

Hi, we are seeing Dr Ben Marsh. The original Dr detailed in my post a number of years ago - sorry can't remember her name other than Rachel something - went to Exeter I believe. Hope this helps you get to see someone with experience of PANDAS? 

1 me gusta
65

Hi I have just found this site whilst desperately searching for information on PANDAS......my 10yr old dd has been having issues for 5 years now and her paediatrician has just muted that PANDAS might be what's going on with her.

I was wondering whether anyone knows of a specialist in the condition in the uk? Our paediatrician has never diagnosed it before and is willing to refer on if necessary.

It was such a relief to know we are not alone with all of this

66

Hi Tina, 

This is something we are looking into with our son he is 11years. I have just managed to get my doctor to refer us to see a doctor at our local hospital that has some knowlege about PANDAS. My own doctor had never heard of it. I have found alot of help through a facebook page I will give you the link. There are people on there who may be able to tell u where is best to go.

What are your daughter symptoms? My sons have been going on for 4 years.

I 've been looking into what can help him for so long now. Anyway hope this FB page helps you.

https://www.facebook.com/groups/199211800204411/653661028092817/?ref=notif&notif_t=group_activity

67

Hi Lou

thanks for your reply. My daughter is just 10 yrs old and has been experiencing a melting pot of issues since she was 4yrs old when she almost died from toxic shock septicaemia and kidney failure with possible Kawasaki disease thrown in! The only thing she tested positive for at the time was Strep A throat infection.

Since then she has suffered with a multitude of conditions including swollen joints, extreme seperation anxiety, huge phobias, OCD like symptoms (piano movements, sporadic singing in a paniced fashion etc) She has recently started hearing voices and is clearly terrified by them!!! Until now she has coped well with school and is a high achiever but now it's affecting school as well.

Where are you based? We are in Lancashire. It;s just good to know that we are not alone with this although I would not wish this on any child it is great to be able to share the load.

Tina

68

Hi There All - 

I am from the US and googled the PANDAS issue because I believe my 10 year old daughter has had a relapse.  I am so sorry to read all of your stories; God knows what I went through when she had tics a few years ago!  We also went through so many medications, told she was having seizures (I think the neurologist first treating her go this MD in a gumball machine!!), MRIS's brain wave tests, and so on.

We finally went down to Children's Hospital in Chicago - Lurie Children's Hospital - where she was in fact diagnosed with PANDAS.  The neurologist there knew all about it and that she must have had a strep infection to bring it on.  Yes, in fact, she did have a sore throat months before that, but I never had her tested because it was not that bad of a sore throat.  However, it must have been strep.  She was then on antibiotics for something else before the PANDAS kicked in; hence, it got rid of the strep.

She had the tics for about seven months, she was out of school because of it so she had a tutor, and the poor kids went through heck, as did we!  I thought she was going to pull her neck right off her spine!  However, her school was absolutely wonderful and worked around our events, even though they did not quite understand what was going on.

Now - the reason that I am here again and why I googled this again:  I believe she has had a reoccurance starting yesterday.  It is not tics but rather this constant clearing of her throat; it is driving her nuts!  She had pneumonia around the beginning of April and then had a relapse several weeks ago.  She just went back to school this past week (she did go back to school for one week after the first bout of it but then relapsed) .  But her immunity is way down, and given what I have just read here about the contact with a strep-infected person, I believe that is what has happened.  I am "happy" to see this forum and will definitely look up the white paper regarding the contact of strep related to PANDAS.  

As I said, the doctors at Children's in Chicago was fantastic and very in touch with this disease so if any of you who are still struggling can make it to the States, go to Chicago.  However, there is no cure and it does run its course, as we were told.  And it did; she stopped the tics as fast as she started them.  

But I am very curious about the penicillian that is prescribed to stop the habits because I will definitely print this out and take it to her doctor on Monday.  If that will stop her actions of throat clearing until her body rids itself of the PANDAS, then that would be a great help.

I hope that someone is still checking this site every now and then because I could use someone to chat with... Thanks...

69

It's me responding to my own post.  I am so sorry that my post has SO many typos; I wrote it at the end of the day; my vision and writing get very "lazy" due to my own health issues.  I cringe when I read it, so I am sorry. But I think you all get the idea of the post.

Carry on... smile

70

Hello Lilly, if you are on Facebook there are many US and good UK groups where us mums talk and communicate about our children's needs whilst on this PANDAS journey.

71

I am a mental health professional and a lot of the children I work with have had episodes with strep in the past and present - one thing that I have observed is when the children find themselves in a current or up coming event they become very stress - a common defense mechanism used by many is called Somatization: in which they are able to manifest emotional anxiety into physcial symptoms - a simple and easy intervention I have used and had some great success is a weekly planner - this may seem odd, but children including adults handle stressful situations if they have more structure in their lives - however, some things cannot be planned for and when this happens it will cause stress, i.e., acident, loss of life, illness etc... but by using a weekly planner, it can decrease stress and anxiety - try it you may be surprised?

72

Hi There - I am in the USA too and went through this with the school system two years ago.  At first, the school was awful too, but then I got the principal involved and she was wonderful!!!  She accommodated every need my daughter had - set up at-home tutoring, did all of the district paper work for us and continued to monitor my daughter's progress.  This principal was one of a kind, I will tell you!  And it was her last year at the school; she retired.  Now we are in another school since we moved, and my daughter - like I said - has had some issues with the anxiety side of PANDAS, but not the incessent twitching that she did a few years ago.  In addition, she has been very sick the past several months with pneumonia and relapse of it as well as chronic asthma and lung issues.  I have cc'd the principal of this school on every email that I sent to her teachers, updating them.  Not once - never - did this principal message me back.  Not only that, but apparently she just sent the messages to the social worker.  We did not need a social worker this time around; my daughter was just really sick.  The anxiety was a side bar and was not what was keeping her from school.  I told the social worker as much and to back off.

I know all too well about how these schools operate by wanting to put a five year old - imagine! - into a truancy status!!  I went head to head with the district and told them to back off back then as well.  They were definitely bordering on illegal behavior.

So, I feel for you on that front, but don't sit back and let them treat you like that.  Make some noise; you are the parent - never to be overruled!

Peace.... smile

73

I totally agree with you on structure and it does make a huge difference.  However, I do not believe in over structure either.  Some parents are SO planned that there is not one minute of a day that their child is just relaxing, hanging out.  As my mother has said her entire life:  Everything in moderation.  The moderation philosophy can be applied to every single aspect of life.

Again, a calendar/planner is a great way for kids to know what is coming up and even help schedule events.  And I am glad that I read this today from you because I actually find myself overwhelmed so much of the time trying to do it all at once - even with my daughter.  So, because of reading your message today, I will sit with her today and we will fill out our planner for the rest of the summer....

Lastly, I have a great example of how badly my daughter wants structure.  We bought her a guinea pig a couple of months ago.  We have all of the proper things for it and she researched beyond belief for a 9 year old on how to care for it.  However, we now find that she is a bit overwhelmed on when to do what - i.e., feeding, cleaning, etc.  So as of last night, my husband and I spoke with her about making a schedule for her.  She was thrilled about planning, and we are doing that today as well.

Your comments and suggestions are invaluable lessons on how to schedule life, and also how to deal with distractions that were not planned.  Thank you very much!!

74

Hi Bea, how is your daughter doing? Did homeopathy work for her??? I live in bristol too and would love to know which homeopotist you saw.

Hopefully you get this...

Ta

75

Hi, my son is now 15, struggling since age 5 with tics, seen several paediatricians,behavioural therapist and neurologist who did tell us that our sons condition was probably due to a throat infection and to ignore it, really had no help at all and have had a very difficult time often along the years, my son, however has learned to cope with his condition and is a very kind person whom I am very proud of but he is still having to ' cope' as are we. I haven't spoken to anyone else with a child in a similar situation and would love to hear from you, have just found this site so if you get this message please get in touch,kind regards, Helen ,U.K. 

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I have two kids with PANDAS. 17 and 15. It had been quite a journey. I wish I'd found this years ago!

77

My heart goes out to you I can't imagine what its like with two of your children suffering the hell that is PANDAS!

How young were your children when they were diagnosed? I am still fighting for a definitive diagnosis of PANDAS some doctors agree with the idea but others don't believe it exists!!!!!

78

Hello L, there is a growing PANDAS community of parents in the UK now. May I ask how you got youe child diagnosed. It's very hard sometimes for doctors to commit to the belief of PANDAS though it's more indisputable. Hope you are managing Ok. I have a 16 year old with it.

79

My 3.5 year old son is in the process of being tested/diagnosed with PANDAS. Emotional meltdowns uncharacteristic to him began in late Sept,and then anxiety and OCD began in early Oct. Then Oct 16 he awoke with leg pain so bad he said he couldn't walk/get out of bed and my pediatrician sent us to the emergency room. After much testing, they suggested it was Transient Synovitis--meaning hip inflammation that can occur after a virus and is apparently quite common in young kids. But my pedi is not convinced and drawing links to PANDAS. I agree that he seems to have MANY of the characteristics...but to my knowledge, he has not been sick (we had blood drawn yesterday to test for strep antibodies), AND, perhaps more importantly...after he shared with me some of his worries about some things happening at preschool--including a little boy who was wrestling with him very rough the day before we went to the emergency room--all the OCD stuff stopped. Like completely stopped. So...to me, this speaks more of rough play and  anxiety issues and the meltdowns seem somewhat normal 3.5 year old behavior. I obviously want him to get the help he needs...but I also feel like I'm being dragged down a rabbit hole of tests and procedures that may be unnecessary. If the OCD stuff has stopped (and he has no tics)--then is it a problem? Is it even PANDAS? This is all completely new to me, and online research only seems to turn up nightmare scenarios...the emotional meltdowns definitely started overnight, but I have LOTS of friends with kids this age who describe the same thing. I'm thankful to have a pediatrican who is aware of PANS/PANDAS, but also don't want to be falsely filed under this subset. Does the OCD stuff go away on its own? I know 3YO usually don't have OCD (his is involving germ phobia and handwashing...but these were also emphasized at school which he jsut started the month before.) He is a very bright, sensitive kid who is WAY to aware of things and in my mind, this wouldn't be out of character for him (though the meltdowns are a new thing...but so is 3. 5 years old!)

80

Just to say thank-you and how much reassurance I have just had in reading all the experiences of folks on here, although wishing none of the kids and parents ever had to go through this horrible illness. Our 8 year-old daughter had what looked like a nervous breakdown just before the Easter Hols this year. GP ruled out diabetes and UTI and then left us to work out what to do with a terrified child who couldn't eat any small pieces of food as everything looked like insects to her, thought creatures would come and get her through mirrors, and was bravely trying to fight off compulsions she couldn't for the life of her work out why she had. 'My body is daring me to do x, but I don't want to' was her explanation.

A friend who is a Pschyatrist for Adults came to see us and suggested it might be PANDAS which she had attended a course on over a year ago, so we did some internet research and one lady's description of her daughter's PANDAS matched my girl's symptoms exactly. GP did a throat culture but negative. Symptoms hadn't lessened so next GP sent us straight to Paed Assessment Unit at local hospital who did a blood test and discovered a cut on her back which wouldn't heal had active Strep infection and Strep antibodies were through the roof in the bloods. Once on antibiotics her symptoms improved a lot but the tics and anxiety have never really gone away. 

We were referred to Child & Family Psychiatry who have prescribed bio-melatonin to help her get to sleep, which has been such a blessing to us and her general health, and are looking into Aspergers as she had some issues prior to the PANDAS outbreak. Psychiatrist had seen 3 other kids with PANDAS, and said 2 had Spectrum issues, and one definately didn't. SHe suggested that possibly my daughter's neural brain-wiring might be atypical which might have left her less resilliant to the PANDAS effects than a more neuro-normal child.

School are doing their best but she is terribly anxious and gets very worried about being shut in school and not getting home if she needs, and when she gets ill with anything she worries that the PANDAS is coming back, which is what we worry too. At the moment she has started waking in the night the last 3 nights to go to the loo, and is very emotional and tired and not keen to go back to sleep once up (3-5am). I am keeping a close eye...All the best to all of you out there coping with children who have gone through or are going through similar. It's so hard as PANDAS is invisible,and hard to explain to people around. A broken leg you know what to do and how to react and how to help but this is way harder...xxx