Thursday, 10 October 2013
PANDAS Awareness Day
Great efforts were made by many yesterday - parents and providers - to spread awareness of PANDAS. It was great to see so many people from all around the world supporting this condition.
Monday, 7 October 2013
Evidence that Increased Acetaminophen (Paracetamol) Use in Genetically Vulnerable Children Appears to be a Major Cause of the Epidemics of Autism, Attention Deficit with Hyperactivity, and Asthma
Thursday, 5 September 2013
Wednesday, 4 September 2013
Monday, 19 August 2013
Sunday, 18 August 2013
Agnosia list
Many of our kids - and indeed some parents - have agnosias:
http://mdmedicine.wordpress.com/2011/04/14/agnosia/
http://mdmedicine.wordpress.com/2011/04/14/agnosia/
Sunday, 11 August 2013
Saturday, 10 August 2013
PANDAS Statistics From Expert
http://www.webpediatrics.com/pandasclinicalcases.html#Anchor
I find much of this very interesting and some quite surprising. Very valuable to read.
I find much of this very interesting and some quite surprising. Very valuable to read.
Friday, 9 August 2013
Tuesday, 6 August 2013
Thursday, 1 August 2013
Wednesday, 31 July 2013
Saturday, 27 July 2013
Wednesday, 24 July 2013
Monday, 15 July 2013
Saturday, 6 July 2013
World PANDAS Awareness Day
This is being organised for 9 October. See www.pandasnetwork.org for further information. Hope you can help to spread the word - we are planning what to do in the UK.
Thursday, 20 June 2013
Monday, 3 June 2013
Sunday, 26 May 2013
Sunday, 19 May 2013
Copper
My son has low copper by hair analysis. This can apparently contribute to anxiety.
http://drlwilson.com/articles/copper_toxicity_syndrome.htm
http://drlwilson.com/articles/copper_toxicity_syndrome.htm
Friday, 3 May 2013
Lost Cat
Part of my son's recovery was thanks to a wonderful kitten called Midnight. I wasn't sure, with his level of OCD, whether my son would take to a pet - but he immediately did. Somehow, as the cat was not human, its germs were OK. My son would take it everywhere with him (at one stage my son could not leave the house).
When my son used the computer, the cat sat on a cushion by the side - great company and they would cat talk to each other. When my son went to bed, the cat slept on the bed too. The cat calmed down meltdowns. A great relationship and frindship developed.
Unfortunately, nearly 2 weeks ago Midnight disappeared. There hasn't been sight of him anywhere and we are so worried. My son is in deep grief and says things such as 'I wish you hand't got him for me as it hurts too much now'. Be sure to know that Midnight will always be a part of our family. That cat singlehandedly turned around my son's life and I will be eternally grateful to him.
He is microchipped - so there is still hope that some kind people have taken him in and are caring for him. I hope that for him as he was under 2 years old with much life yet to live. I hate to think of him locked in a shed somewhere and have leafletted the town and put notices up everywhere asking people to check their property. We still have hope that he will come back and he is still very much needed - but that cat deserves a gold medal for services to humankind.
When my son used the computer, the cat sat on a cushion by the side - great company and they would cat talk to each other. When my son went to bed, the cat slept on the bed too. The cat calmed down meltdowns. A great relationship and frindship developed.
Unfortunately, nearly 2 weeks ago Midnight disappeared. There hasn't been sight of him anywhere and we are so worried. My son is in deep grief and says things such as 'I wish you hand't got him for me as it hurts too much now'. Be sure to know that Midnight will always be a part of our family. That cat singlehandedly turned around my son's life and I will be eternally grateful to him.
He is microchipped - so there is still hope that some kind people have taken him in and are caring for him. I hope that for him as he was under 2 years old with much life yet to live. I hate to think of him locked in a shed somewhere and have leafletted the town and put notices up everywhere asking people to check their property. We still have hope that he will come back and he is still very much needed - but that cat deserves a gold medal for services to humankind.
Thursday, 18 April 2013
Wednesday, 3 April 2013
Methylation - really good article that helps you to understand SNPs
If you know what your or your kids' SNPs are (perhaps from 23andme or other testing) then you can use this info to work out what they may mean:
http://www.heartfixer.com/AMRI-Nutrigenomics.htm#MAO%20A:%C2%A0%20Monoamine%20Oxidase%20A
http://www.heartfixer.com/AMRI-Nutrigenomics.htm#MAO%20A:%C2%A0%20Monoamine%20Oxidase%20A
Monday, 1 April 2013
Saturday, 30 March 2013
Gunilla Gerland's PANDAS Story - Overview for March Conference in Sweden with Sue Swedo
Personal experiences of PANDAS – Gunilla Gerland
Some of you know may me from the autism field. I was as a young adult diagnosed
with Asperger’s syndrome, a diagnosis which at that point meant a lot for me as it
offered an explanation of why I had been so different growing up. I wrote an
autobiography about my childhood, and with time I started working in the autism
field as a professional. Years went by and I outgrew my diagnosis, that is I did no
longer in my mid-thirties meet the criteria for a diagnosis. How that happened, or
why I could not explain.
Some more years went by and I became a mother. Knowing that autism can be
heredetary of course I watched my son closely. I was not particilarely worried as I did
not feel that Asperger’s syndrome is the end of the world. But still, as a mother, of
course I hoped for him to have a normal development. Well, he met all the milestones
as he should, he was a lot like me as a child but without the problems, you could say.
By this I mean he is quite intelligent (actually more intelligent than I am, I suspect),
he was very early in language-development, learned everything very easy, and could
read at four and write at 5.
He has always had friends and has functioned very well socially both with children
and adults. He was an easy-going happy kid, and I was a happy mother. I mean there
was absolutely nothing about him that signalled autism, or any other psychiatric
problem for that matter. So eventually I stopped looking for autistic traits, of course.
As a single mother I also put an effort in making him quite independent , I mean
although we of course are very close, he had no problem with speaking up for
himself, sleeping over at friend’s, waiting for me while I went for groceries or similar
things.
So last year in March, he was 8,5 years old, and we went for a vacation to the Canary
Islands for a week. At the beginning of the week he was more in the pool than out of
it, and after a day or two he complained about discomfort when urinating and he also
had frequent urges to go. I felt he might have an infection, but since we were abroad,
I decided to just buy some cranbarry juice and see if it would disappear. He wet the
bed two nights in a row.
On Friday March second, we were at the beach, and were done snorkelling. While
waiting to be driven back to our hotel, we went to look for beautiful rocks and shells
on the beach. Suddenly he started crying with an intense anxiety. When I asked him
why he was crying it was because he wanted to take
all the beutiful rocks from the
beach with him and he could’nt carry them. “They are on my brain” he said. “I can’t
let go of them, I have to have them all”.
2
I found this odd, since both the crying, the anxiety and the unreasonableness were so
out of charachter. I finally got him off of the beach and we went for an icecream.
Now he had to to save all the garbage, like the icecreame paper, the straw from the
soda, and during the following night and day it just escalated. I recognised this was
OCD, after all I see OCD on a regular basis in my work, and I began to talk to him
about that the only way of handling this is to try to resist what your brain tells you
you have to do. I used cognitive-behavioral strategies, and got it somewhat under
controll.
But the situation felt absurd, I mean you don’t just get OCD from from nothing like
that at two a clock an afternoon.
Unfortunately he hadn’t
just got OCD, it was about to get worse.
Two days after this he delevoped a separation anxiety, if he couldn’t see me he
thought I had abandoned him.
Then we went back home, and now four days after the first OCD-sign he told me he
was hearing voices, a male voice telling him he must die. He also had visual
hallucinations. He saw arrows pointing him in directions where he should go.
At that point I called child pyschiatry, BUP, which offered me an appointment with an
psychologist within four weeks. That would have seem like joke, if the situation
hadn’t been that serious. I felt my son had to see a neurologist very fast, something
was obviously going on with his brain.
He deteriorated quickly. He now developed paranoia, thinking I was trying to kill
him, and that his cousin was a secret agent. He spotted and reacted to cameras when
we were out in the city. He called this his “suspicions”.
His personality changed so that I did not recognise him anymore. I mean he looked
like himself, but when I looked in his eyes it was as if there was someone else there.
I was terrified. It was the worst nightmare I have ever been through.
His OCD grew from hoarding to intrusive thoughts and anxiety that things might
break. He wouldn’t touch any of his toys, games or computer because they might
break. If something broke – it could be just that I tore open an envelope while
opening the mail – he would fall into tears.
He started chewing his clothes. He had his sleeves in his mouth constantly. He
became motorically restless, and got insomnia, from he would go to sleep normally in
10-15 minutes from turning off the lights, it would now take everything from half an
3
hour to two hours, always with intrusive thoughts about things that might break. He
had burped constantly for some days, and when I told him to stop he said he couldn’t
controll it.
His hoarding started to grow to hoarding things from his own body, he wanted to
hoard his finger nail clippings, the skin he picked of off his fingers etc. I had to
become an authoritarian Cognitive behavioral guard which is far from my normal
parenting style, because I saw a future where he would soon enough want to hoard
his feaces and urine. This was tough. And without my own cognitive behavioral
training I don’t think I could have pulled it through.
Some nights he would twitch in his sleep in a strange way. The symptoms were
constantly changning and as I said I didn’t recognise him. What was the most
heartbreaking part is that you always feel your love for your children is
unconditional, right?
But I realised it is conditioned to “who they are”. That is, the absolute automatic
emotional love I have always felt for my son wasn’t really there anymore, because
this was suddenly another child, it is not that he was a sick child – or yes, of course
he was, but it was as if he was replaced. I know, now it sounds like I was the one with
delusions, and this is difficult to describe, but I would imagine that it is similar to
having a loved one who suddenly develops severe dementia. So I had to love him
“intellectually”, that is to use my will power to love him during this period. And that
was truly one of the most awful experiences I have ever had.
What did others see of this? Well, I did sent him to school most days because he
seemed to be distracted in school showing less symptoms there. His teachers did
however noticed his sudden difficulties with handwriting, with concentration and he
had some severe meltdowns in school which were totally out of charachter. But they
would in the beginning more think of this as behaviour problems, as him being
difficult on purpose.
He was quite god at hiding his severe symptoms from others. I remember a weekend,
I call it the weekend from hell. His OCD was so severe and when I used cognitive
behavioralstrategies his anxiety just peaked and he would go from hitting me,
screaming at me to threatening to kill me, and then to threaten to kill himself. But this
weekend we had some relatives over for lunch and at the moment they entered our
house his OCD-related behaviours just stopped, and he was just as usual, and then the
moment they left it was like he switched it on again. It was bizarre and surreal to
watch. But this also meant that other people did not see all the symptoms I saw.
He would behave childish in a strange way, like a two-year old, you know when you
call their name and they just set off in another direction, laughing. I suddenly found
4
myself chasing him around as if he was a toddler again. He just woudn’t listen. I
couldn’t make contact as I normally do.
He would feel dizzy, have feelings that things were unreal. He for example asked me
many times while watching tv “Mom, is this happening in reality or not?”, something
that had never occurred before PANDAS. He had joint and muscle pains coming and
going.
He did also have manic episodes, and that is usually not considered a symptom of
PANDAS, I know. But he would have huge pupils, he was chatting and laughing as if
he had been drugged with something, and strange enough while these episodes lasted
(before he would just crash in despair and tears over something) he actually wrote
and drew, and performed physically and motorically, better then he normally does. I
am telling you, this is a weird disease!
So, I did what most parents in this situation do. I googled. And googled, and googled.
And finally I found out what it was. I found the NIMH page with dr. Swedos
research, and there it was! He had PANDAS. There was absolutely no doubt in my
mind.
By then I had gotten an appointment with a pediatrician, and I asked her to check him
for strep. She had never heard of PANDAS, but took a throat swab. And yes he was
positive. He was started on Penicillin. This was on March 17, 15 days after his first
symptoms. A week later we saw a neurologist, who confirmed the diagnosis of
PANDAS and prescribed more antibiotics. He improved somewhat, but still had
psychotic symptoms and the personality change was still there. I felt he must have an
immunoglobulin treatment but the referal to the hospital that the neurologist had
written was not accepted by the hospital.
“This was the strangest referal we have ever seen” the nurse said, and told me they
would not admit him. I was desperate. I felt that my son was dying from me. This
may seem overly dramatic, but that is how I felt. He wasn’t dying physically, but he
was dying as the person I knew. I also felt I had his whole future on my shoulders.
This was my son who had, already at three years old explained to me how nuclear
power stations work, who read Stephen Hawkings at six, and has decided to go to
technical university, to become an inventor and then get the Nobel prize. Now he
couldn’t concentrate, had difficulties writing and was anxious about everything. The
voice was there everyday in his head telling, him he was worthless and that he should
die.
He was aware that there was nobody there, and we talked about that his brain is
playing tricks on him. But, as he said, the voice is so loud so it is difficult not to listen
to it. And there I was, trying to not show my son that I myself was falling apart over
5
his sudden illness. I couldn’t work. I cried when he was asleep and I cried when he
was in school, and in between crying I called every contact I had, every doctor I
knew. I couldn’t eat, I couldn’t sleep, and I ended up, I think in a state of extreme
stress which drained me of the energy I needed to help my son.
Of course, him becoming an ingeneer, or an inventor is not important to me, all that
matters is that he is happy. But at this point I could only see a miserable his future as
one of a chronic psychiatric patient. I just felt he HAD to have an immunoglobulin
treatment. And I faught like a lion, and finally we got the right hospital and doctor, a
doctor who listened to us, and beleived in us. At March 30 he was admitted for an
immunoglobulin treatment.
It is given during two consecutive days, at hospital.
When he opened his eyes in the morning the first day after the immunoglobulin
treatment, he was back! It was like magic. I looked him in the eyes and he was
himself again! I can’t really express the releif in this.
Then gradually after the immunoglobulin treatment he got better and better. He
remained on full treatment dose penicillin though, since I noticed that if we just
forgot one dose he would have these peculiar twitches at night again.
By July he had been symtom free for quite a while, and that time when he was so ill
started to feel more and more like just a bad dream.
Without telling him or giving it much thought I decided we probably could go for a
profylactic dose of penicillin, a couple of times per week, so I just didn’t give it to
him. After 24 hours without antibiotics he started to complain that his legs hurt and a
couple of hours later he coulnd’t walk.
We ended up in the ER where – of course – there was nothing detectable wrong with
him. He just couldn’t walk normally. And as a parent it is quite stressful to both deal
with the extreme worry you feel about your child, and all the raised eyebrows from
health care professionals when they seem to think you or your child are simulating. I
don’t have time to tell you all my experiences here but just for short, another doctor,
who did not even see him while he couldn’t walk suggested it was “growth pains”.
Sure, I am the mom who rushes my kid to the Emergency Room for growth pains! I
must say that the parental stress from dealing with this disorder is really truly
much
worsened
by the ignorance from health care profesisonals.
Well, to make a long story short, back on penicillin and with ibuprofen it took five
days and then he could walk again.
6
Now it has been a year. He is mainly symptom free but remains on penicillin full
dose. He does get what I would call “mini-exacerbations” when something, like a
virus for example, activate shis immune system. We use ibuprofen for a couple of
days and it goes away. I am not clear how long he will stay on antibiotics, I can only
say that if it saves his life as we know it, and his future as we expect it, if it keeps him
stable, and being able to do well in school and play with friends, then I feel a long
term antibiotic treatment is a small price to pay. And would he ever – god forbid – get
seriously ill again, I will not hesitate to fight for another IVIG.
Finally, back to me and my diagnosis. Going back I see all my own symtoms
interpreted as autistic rituals might have been OCD. I had a severe scarlet fever
(which is strep) at 2 years old. I was later apart from Aspergers syndrome, also
diagnosed with dyscalculia (that is, specific math difficulties a known effect of
PANDAS), and with Fowlers disease, a rare disorder of unknown origin which causes
urinary urges. So what do you think? Did I really have Aspergers and outgrew it, and
my sons PANDAS is totally unrelated. Or did I actually have PANDAS too? I think
the latter is true.
I am in contact with about 60 families in Sweden with children with PANDAS or
suspected PANDAS, and about half of them have recieved diagnosis such as
Asperger’s syndrom, Tourettes syndrome, ADHD etc. although they did not have
these symtoms prior to the PANDAS-onset, so yes, I do think there are quite a few
hidden cases in our country.
And PANDAS is treatable, and the earlier you start treatment, the greater the chance
of full remission it seems. So the medical community has to take a step forward now.
If you feel there is too little research, than now is the time for you to initiate research.
Our children are here now. They can’t be espected to loose their future while we wait
for a handful of dedicated researchers to study and then publish. And although not
conclusive, there is quite an amount of clinical experience with this disorder,
indicating that longterm antibiotics and immunoglobulin treatment is helping. Can
you imagine the frustration parents feel when they are convinced there is a treatment,
their children have all the symtoms of PANS or PANDAS, many times including
confirmed strep infection at onset, and yet their doctors are unwilling to precribe the
treatment - but at the same time, these same doctors are more than willing to
prescribe medications with more potentional side effects for children whose brains
are still in development, such as SSRI’s, anti-psychotics and other drugs.
So again, we are here, our children are here, and I think many of us parents feel we
will let you use our children for research, because we know what hell parents go
through, and if we can prevent that from happening to other families many of us are
happy to help!
Friday, 29 March 2013
Thinking Mum's blog about possible causes of autism
Cephalhematoma for 6 months? My son had that. A lot of hard hitting stuff in this blog.
http://thinkingmomsrevolution.com/how-i-gave-my-son-autism/
http://thinkingmomsrevolution.com/how-i-gave-my-son-autism/
Wednesday, 27 March 2013
Interesting blog to read - says it how it is.
I was sent a link to this blog yesterday - it says it how it is - thanks for sending.
http://www.findingmylittlegirllost.blogspot.co.uk/
http://www.findingmylittlegirllost.blogspot.co.uk/
Friday, 22 March 2013
Wow - big improvement in my son
We plug away with antibiotics in the hope that the final 40% of illness will be recovered in my son - but it is a slow process. I found out this week that he is positive for Kryptopyrrols and started treating that and I think it has given that extra tweak of health that has allowed for more social improvement.
I employ 2 learning mentors to spend a couple of hours befriending my son each week and - they had a meal out with him. I thought it might be a step too far, but I peeped through the window into the restaurant and there they were - all 3 sat together around a round table - tucking into food. My son was eating with his hands - but that was to be expected as that is what he does. But to be eating with, in front of and able to see others eating - and to be chatting to them - WAS SUCH A BIG STEP.
I am a really happy mother today.
Thursday, 21 March 2013
Pyroluria - testing available in Europe
My son has just tested positive for Pyroluria. I haven't consulted his doctor yet to know exactly what to do about this - but it probably part explains why his zinc etc levels are low.
Below is a link to the company I use for tests for myself. I have found them very efficient - they quickly email results back. In addition, they use the Biolab in London which is very reputable.
http://www.smartnutrition.co.uk/health-tests/pyroluria/
Below is a link to the company I use for tests for myself. I have found them very efficient - they quickly email results back. In addition, they use the Biolab in London which is very reputable.
http://www.smartnutrition.co.uk/health-tests/pyroluria/
Wednesday, 20 March 2013
Moleculera - New PANDAS Web Site from 28 March
Something to look out for will be the new information site that Moleculera will be launching on 28 March. Great news.
http://www.moleculera.com/
http://www.moleculera.com/
Monday, 18 March 2013
PANDAS Update
My son has progressed really well. He is now eating home cooked and not mainly packaged food (OCD) and his growth is above average. In addition, he has made several really big steps - including that he went out in someone else's car the other day. This quite amazed me and was so pleasing. I am fighting for a decent educational package and am ready to take this to tribunal - have submitted paperwork. If I can get education in place, things will be even more more positive.
Sunday, 17 March 2013
Friday, 15 March 2013
Thursday, 14 March 2013
Sunday, 10 March 2013
H Pylori - interesting article
Just discovered that I, as well as one of my children, have h pylori. It does explain why my stomach feels uncomfortable and why I get reflux. Hopefully, this will soon go with appropriate treatment.
http://www.nleducation.co.uk/wp-content/uploads/LIT-154-H-Pylori-Article.pdf
http://www.nleducation.co.uk/wp-content/uploads/LIT-154-H-Pylori-Article.pdf
Friday, 8 March 2013
Thursday, 28 February 2013
Thursday, 21 February 2013
Sunday, 17 February 2013
Saturday, 16 February 2013
Thursday, 7 February 2013
Sunday, 3 February 2013
Lyme Disease/PANDAS overview - research published in Int Journal Of General Medicine
Lyme disease and pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS): an overview
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3292400/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3292400/
Wednesday, 30 January 2013
Tuesday, 29 January 2013
Tuesday, 22 January 2013
Mold - can cause health issues - very informative article
http://www.neogenantiaging.com/mold-infection-symptoms/
Wednesday, 16 January 2013
Sue Swedo PANDAS Q&A, from Feb 2012
http://thebatavian.com/howard-owens/q-dr-susan-swedo-regarding-pandas/30364
Education - lack of
Not only is there a lack of acceptance of appropriate medical care for our children with PANDAS - but accessing education is also made difficult. We are going to tribunal in a couple of months to try to get the appropriate provision that my son deserves. I cannot see why it has been made so difficult. Anyway, I am full of hope that things will change.
PANDAS on TV - Doctors
http://www.thedoctorstv.com/videolib/init/5141
So great to see Sammy looking so well. We owe him so much for allowing his story to be shared.
So great to see Sammy looking so well. We owe him so much for allowing his story to be shared.
Wednesday, 9 January 2013
Fluffy Coconut Flour Pancakes - free from recipe
http://eatnourishing.com/recipe/fluffy-coconut-flour-pancakes/
FREE Lyme Culture Test currently available
http://lymedisease.org/news/touchedbylyme/lyme-test-research.html
Sunday, 6 January 2013
Article about boy with PANDAS in the news
http://www.timesdispatch.com/entertainment-life/health/for-kids-infection-can-spur-deeper-condition/article_dfb62091-5d0f-5fbf-841c-d23866db554a.html
Friday, 4 January 2013
Eosinophilic Gut Disease - report
My son has severe eosinophilic gut disease - here is some info about it.
http://www.hindawi.com/journals/scientifica/2012/682576/
http://www.hindawi.com/journals/scientifica/2012/682576/
Thursday, 3 January 2013
Radio show discussing MTHFR - excellent
http://www.blogtalkradio.com/mthfrsupport/2013/01/03/mthfr-supports-first-show
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