Some forms of mold can flare PANDAS - with a compromised immune system, this is no surprise as children are very fragile. When I hear that some parents are blamed for their children becoming ill, accused of causing PANDAS in their children, it reminds me of the Salem Witch Trials - over 300 years have passed since these trials where vulnerable people were blamed of witch craft as children became afflicted with what I believe could have been PANDAS. Nothing changes.
http://en.wikipedia.org/wiki/Salem_witch_trials
Thursday, 31 May 2012
Do Le Roy 12 and Lancet 12 Have Anything in Common?
I found this discussion about the Le Roy 12 (PANDAS) and Lancet 12 (Wakefield, autism) interesting.
http://vaxtruth.org/2012/01/the-leroy-twelve-and-the-lancet-twelve-pandas-and-autism-common-factors/
http://vaxtruth.org/2012/01/the-leroy-twelve-and-the-lancet-twelve-pandas-and-autism-common-factors/
Sunday, 27 May 2012
Saturday, 26 May 2012
A Really Interesting Lyme Blog
In case you are wondering why there is so much about Lyme here it is because some think that tick infections can harm the immune system and leave people wide open to conditions such as PANDAS as their immune system is compromised. When funds allow - I will get my family tested.
http://lymemd.blogspot.co.uk/
http://lymemd.blogspot.co.uk/
Friday, 25 May 2012
Autism One Conference
The Autism One Confrence 2012 is now taking place. There are recordings available from this page:
http://www.livestream.com/autismone
http://www.livestream.com/autismone
Wednesday, 23 May 2012
A couple of interesting reports about IVIG and antibiotics
Immunomodulatory properties of antibiotics:
http://benthamscience.com/cmp/samples/cmp%201-1/Nau.pdf
Therapeutic plasma exchange and intravenous immunoglobulin for
obsessive-compulsive disorder and tic disorders in childhood
Susan J Perlmutter, Susan F Leitman, Marjorie A Garvey, Susan Hamburger, Elad Feldman, Henrietta L Leonard,
Susan E Swedo
http://intramural.nimh.nih.gov/pdn/PANDAS-REF7.pdf
http://benthamscience.com/cmp/samples/cmp%201-1/Nau.pdf
Therapeutic plasma exchange and intravenous immunoglobulin for
obsessive-compulsive disorder and tic disorders in childhood
Susan J Perlmutter, Susan F Leitman, Marjorie A Garvey, Susan Hamburger, Elad Feldman, Henrietta L Leonard,
Susan E Swedo
http://intramural.nimh.nih.gov/pdn/PANDAS-REF7.pdf
Tuesday, 22 May 2012
Saturday, 19 May 2012
Having Your Own Medications Specially Made
I heard the other day about 'compounding your own medications'. This is where a laboratory can make your medications for you - without all the artificial chemicals and bulkers. This sounds great to me - some childhood medications such as calpol contain ingredients that I try to avoid - but sometimes, for instance when my children have fevers, this type of medication is very useful. Here is an example of a laboratory that provides this type of service:
PURE COMPOUNDING PHARMACY - additive free vitamins and/or medication made to your prescription
PURE COMPOUNDING PHARMACY - additive free vitamins and/or medication made to your prescription
Wednesday, 16 May 2012
Tuesday, 15 May 2012
Nightmares
My son had a lot of screaming out nightmares last night. I think it may be related to having a hard day and also the antibiotics. When I took amoxycillin once I did wake up in the morning wondering where I was - it can cause some confusion. It only lasted a few seconds with me, but then I did not take it long term.
Monday, 14 May 2012
Day 13 Antibiotics - visit to Pandas doctor in London
My son was still asleep at 11 am when we needed to leave and I hate to wake him, fearing rages. It was so important that I did and said we had to leave in 5 minutes. He was up dressed and at the front door in 2 minutes flat! What? I made the most of this and we left despite the fact that he had not had breakfast or antibiotics or nurofen (ibuprofen antiinflammatory). Usually there are many compulsions to get through.
An uneventful drive to the station, first class tickets on the train (owch, nearly £100) - but the seats were large and my son had space away from others so it was worth it. I was given complementary coffee and fruit cake - happy mum - I am a coffee addict.
We were running an hour early when we arrived at Paddington - so my son suggested going to the sushi bar there. I had to nip to the toilet first - and his compulsions were set off so I was grateful for the disabled toilet - and how easy it was to get the key. We had 3 trips back for the key and my son was embarrassed - but I explained to him that it was there for kids like him and that if staff showed their annoyance then it was their problem and perhaps they were in the wrong job or had had a bad day. It was just the tap that my son wanted and he mostly washed his face, dipping one set of fingers in the water and then putting it onto his face - I did the turning on and off of the tap and opening and closing of the door. My son ate his favourite makki - with avocado. He was really happy to have found it but said it didn't taste as good as it used to - we used to stop there regularly - I think his taste buds have changed.
There was an enormous queue for a taxi. Thinking on my feet, I asked if we could jump the queue - I have seen people do that before. The words child and hospital got us straight into a taxi - it would have disturbed my son to have waited with so many people. My son was ok and put his seatbelt on - covering his hands with his sleeves as he did for most of the day. As he was unable to touch the door handles, I had to help him out and avoided conversation with the driver as that would have upset my son - he thinks that people spit when they talk and that it lands on him, especially in his mouth. This makes him spit - not wanting to spit into the street he spits onto his sleeves, which become wet and must feel very uncomfortable.
We were 30 minutes early for our appointment so walked around the block. Down Harley Street, past Devonshire St, past Langans - which made me sad as I remembered a great evening there with friends who are no longer here. We spotted a newsagent and my son asked for sweets. He picked some out and I paid - taking them back to the waiting room to eat. I was surprised that he could eat a lolly in the waiting room where other people had been - but this was delightful - I loved to see him sat in a chair where others had previously sat, with no problem and sucking a lolly.
We were called in to our appointment and my world changed. We have the PANS diagnosis and have dropped the Aspergers. It was obvious to the psychiatrist that my son does not have Aspergers - my son's English teacher had also said that she did not think he had it as he was so good at, for instance, metaphors.
My son has an autoimmune problem - that was obvious to this great man and that was the diagnosis. My son is going to be tested for Lyme, babesia and the other tic borne infections. Thinking of him with all these parasites in his brain was nauseating. Horrid spiral things that can drill their way through his organs and brain and cause so many problems.
Another thing of concern that I asked for help with is that my son has had no education for nearly 2.5 years. My son was termed 'an invisible child' and the fact that he is given no education 'against his human rights'. Things may be about to change here with this great man on our side.
My son has serious OCD - even today when things are so much calmer thanks to antibiotics. He will need help for this and clinics will be contacted and help sought. At last!
I was hungry on the way home and bought myself a pasty at Paddington. My son asked for one too and we ate them on the train home. It was a pleasure to see my son eat this type of food - unwrapped and handled openly by the girl who served us. There was a mess on the floor - but since we had paid £100 to sit there that was too bad. My son's second lolly went in the bin as when he opened it it touched the seat and became inedible to him - guess you cannot win them all.
My son is on the way to getting better and having the services, such as a tutor, that he deserves.
Peace.
An uneventful drive to the station, first class tickets on the train (owch, nearly £100) - but the seats were large and my son had space away from others so it was worth it. I was given complementary coffee and fruit cake - happy mum - I am a coffee addict.
We were running an hour early when we arrived at Paddington - so my son suggested going to the sushi bar there. I had to nip to the toilet first - and his compulsions were set off so I was grateful for the disabled toilet - and how easy it was to get the key. We had 3 trips back for the key and my son was embarrassed - but I explained to him that it was there for kids like him and that if staff showed their annoyance then it was their problem and perhaps they were in the wrong job or had had a bad day. It was just the tap that my son wanted and he mostly washed his face, dipping one set of fingers in the water and then putting it onto his face - I did the turning on and off of the tap and opening and closing of the door. My son ate his favourite makki - with avocado. He was really happy to have found it but said it didn't taste as good as it used to - we used to stop there regularly - I think his taste buds have changed.
There was an enormous queue for a taxi. Thinking on my feet, I asked if we could jump the queue - I have seen people do that before. The words child and hospital got us straight into a taxi - it would have disturbed my son to have waited with so many people. My son was ok and put his seatbelt on - covering his hands with his sleeves as he did for most of the day. As he was unable to touch the door handles, I had to help him out and avoided conversation with the driver as that would have upset my son - he thinks that people spit when they talk and that it lands on him, especially in his mouth. This makes him spit - not wanting to spit into the street he spits onto his sleeves, which become wet and must feel very uncomfortable.
We were 30 minutes early for our appointment so walked around the block. Down Harley Street, past Devonshire St, past Langans - which made me sad as I remembered a great evening there with friends who are no longer here. We spotted a newsagent and my son asked for sweets. He picked some out and I paid - taking them back to the waiting room to eat. I was surprised that he could eat a lolly in the waiting room where other people had been - but this was delightful - I loved to see him sat in a chair where others had previously sat, with no problem and sucking a lolly.
We were called in to our appointment and my world changed. We have the PANS diagnosis and have dropped the Aspergers. It was obvious to the psychiatrist that my son does not have Aspergers - my son's English teacher had also said that she did not think he had it as he was so good at, for instance, metaphors.
My son has an autoimmune problem - that was obvious to this great man and that was the diagnosis. My son is going to be tested for Lyme, babesia and the other tic borne infections. Thinking of him with all these parasites in his brain was nauseating. Horrid spiral things that can drill their way through his organs and brain and cause so many problems.
Another thing of concern that I asked for help with is that my son has had no education for nearly 2.5 years. My son was termed 'an invisible child' and the fact that he is given no education 'against his human rights'. Things may be about to change here with this great man on our side.
My son has serious OCD - even today when things are so much calmer thanks to antibiotics. He will need help for this and clinics will be contacted and help sought. At last!
I was hungry on the way home and bought myself a pasty at Paddington. My son asked for one too and we ate them on the train home. It was a pleasure to see my son eat this type of food - unwrapped and handled openly by the girl who served us. There was a mess on the floor - but since we had paid £100 to sit there that was too bad. My son's second lolly went in the bin as when he opened it it touched the seat and became inedible to him - guess you cannot win them all.
My son is on the way to getting better and having the services, such as a tutor, that he deserves.
Peace.
Aspergers - we miss you
My son has been undiagnosed. He is no longer a child with Aspergers. It is good news in a way - but sad as I will no longer belong to the warm community of 'warrior mothers' who have fought their way through for the best help for their kids.
We have, however, swapped it for a whole new set of problems.
We have, however, swapped it for a whole new set of problems.
Sunday, 13 May 2012
Day 12 Antibiotics + Nurofen
We need to go on a trip tomorrow by train and so I gave my son a nurofen tablet to try to get down inflammation. Something has worked because I have seen glimmers of my healthy son back today. We have done a lot together - chatting (though he still accuses me of spitting at him), playing computer games (I wish I could be more enthusiastic about this but it doesn't interest me at all - quite the opposite), and designing a WWW.PANDASUK.ORG website - it went live today. The web site needs polishing and more information - but it is a start. My son kept drawing some wonderful pictures and then he made me remove them from the site as to him they were not good enough. His drawings are so good that this is sad.
When my son asked if we could go into town - I knew he was back. We have not been into town for over 2 years. That was special. Unfortunately it is Sunday and the shops are closed - but perhaps we will go soon.
So life is looking up.
When my son asked if we could go into town - I knew he was back. We have not been into town for over 2 years. That was special. Unfortunately it is Sunday and the shops are closed - but perhaps we will go soon.
So life is looking up.
Saturday, 12 May 2012
Best day for over 2 years
It is day 11 of antibiotics and I have just had a friendly and peaceful day with my son. He is still oppositional in his speech - but there was plenty of speech. We have discussed computer games for about 3 hours today. I cannot say that this was my favourite topic of conversation and I struggled to keep up - but it was great to see my son come alive with the enthusiasm of sharing his world with me.
My son still has the fears that developed the other day - he doesn't like to go into the shower at night on his own. He is OK during the day, but I have to stand there at night - as I had to do night after night, day after day for a year or so in the beginning. I do not have to turn the shower on and off for him though - that was tedious but necessary. There is discussion about codependency with the OCD activities of Pandas - as it is an illness then it is suggested that these things need to be done, as opposed to classic OCD, whatever that may be, where you apparently should not help out.
So we are winning.
My son still has the fears that developed the other day - he doesn't like to go into the shower at night on his own. He is OK during the day, but I have to stand there at night - as I had to do night after night, day after day for a year or so in the beginning. I do not have to turn the shower on and off for him though - that was tedious but necessary. There is discussion about codependency with the OCD activities of Pandas - as it is an illness then it is suggested that these things need to be done, as opposed to classic OCD, whatever that may be, where you apparently should not help out.
So we are winning.
Friday, 11 May 2012
PANDAS POEM
PANDAS
They say its a post strep infection
Like Sydenham’s Chorea or Rheumatic Fever
But this time affecting the brain
They say its a post strep infection
An antibody inflamed basal ganglia
Sudden onset tics, ocd, anxiety
They say its a post strep infection
My child cannot leave his room
No school, no friends, no fun
They say its a post strep infection
So what can I do
Antibiotics, IVIG, Plasmapheresis
They say its a post strep infection
Discovered by Swedo in 1998
But my child will still not eat.
They say its a post strep infection
Impacting the whole family
Untreated may last a lifetime.
They say its a post strep infection
Like Sydenham’s Chorea or Rheumatic Fever
But this time affecting the brain
They say its a post strep infection
An antibody inflamed basal ganglia
Sudden onset tics, ocd, anxiety
They say its a post strep infection
My child cannot leave his room
No school, no friends, no fun
They say its a post strep infection
So what can I do
Antibiotics, IVIG, Plasmapheresis
They say its a post strep infection
Discovered by Swedo in 1998
But my child will still not eat.
They say its a post strep infection
Impacting the whole family
Untreated may last a lifetime.
Read some interesting Lyme articles today
http://www.igenex.com/psychological_effects.htm
http://www.immed.org/infectious%20disease%20reports/InfectDiseaseReport06.11.09update/PHA_Nicolson_0709_v4.07.pdf
http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-embers-monkey-study-part-3-idsa-28-day-treatment-protocol-fails-to-clear-infection.html
http://www.mdlab.com/pdf/lyme_disease_testing.pdf
http://www.immed.org/infectious%20disease%20reports/InfectDiseaseReport06.11.09update/PHA_Nicolson_0709_v4.07.pdf
http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-embers-monkey-study-part-3-idsa-28-day-treatment-protocol-fails-to-clear-infection.html
http://www.mdlab.com/pdf/lyme_disease_testing.pdf
Thursday, 10 May 2012
What would I do if I found a tick on my child?
1. Remove it the recommended way - plenty of advice on the internet or from your doctor..
2. As there is no way of telling what they carry just by looking at them I would go to Igenex.com and fill out their test order form and send them the live tick - in secure container, complete with some damp cotton wool and perhaps some grass to keep it alive and comfortable on its journey and following customs rules, whatever they may be.
3. Go to my doctor and get a 3 week course of antibiotics for my son.
4. Wait for tick analysis results and then take appropriate further action - be very happy if no infections present.
Ticks are not something to mess with. They can carry more than one infection, eg Babesia, Bartonella etc. If you or your child does get one - do see your doctor.
Wednesday, 9 May 2012
Antibiotics - one week in - day 7
Today has had its up and downs. The herx reaction seems to be still there causing emotional turmoil in my son. He is in control though and, whereas he got cross and threw his chair over, he did not swipe the books off the shelf or do any of the other things he used to do with PANDAS at its height. What I do hate is the PANDAS shriek - it is really high pitched and painful to hear - and we have had a few over the last couple of days.
All in all things seem to be improving. There was the foot tic again yesterday when my son went up onto his toes a couple of times, but that soon went. He was eating a little less yesterday, but has picked up today.
His medication comes as individual foil wrapped tablets. Thank goodness for that - they meet his OCD standards and he has no problems taking them. I think that a lot of antibiotics are liquid and there would be issues with that.
We have a very important meeting with a Pandas doctor on Monday and I must start pulling together a diary of information. In fact, I must send that onwards in case we arrive late for the appointment - the doctor can spend our missed appointment time browsing my child's history. How we will travel into London is going to be, well, quite challenging to say the least.
All in all things seem to be improving. There was the foot tic again yesterday when my son went up onto his toes a couple of times, but that soon went. He was eating a little less yesterday, but has picked up today.
His medication comes as individual foil wrapped tablets. Thank goodness for that - they meet his OCD standards and he has no problems taking them. I think that a lot of antibiotics are liquid and there would be issues with that.
We have a very important meeting with a Pandas doctor on Monday and I must start pulling together a diary of information. In fact, I must send that onwards in case we arrive late for the appointment - the doctor can spend our missed appointment time browsing my child's history. How we will travel into London is going to be, well, quite challenging to say the least.
Monday, 7 May 2012
Did Mozart have PANDAS?
http://www.telegraph.co.uk/culture/music/3625399/I-know-what-made-Mozart-tic.html
Maybe we have two famous names on the list of PANDAS sufferers - Howard Hughes and Mozart?
Maybe we have two famous names on the list of PANDAS sufferers - Howard Hughes and Mozart?
Sunday, 6 May 2012
For anyone interested in contributing to research - here is an awareness survey
http://www.ocfoundation.org/PANDAS/
The survey is on the right hand side and gives you this:
http://www.ocfoundation.org/uploadedFiles/MainContent/Get_Involved/PANS%20PANDAS%20Awareness%20Campaign%20Form.pdf
The survey is on the right hand side and gives you this:
http://www.ocfoundation.org/uploadedFiles/MainContent/Get_Involved/PANS%20PANDAS%20Awareness%20Campaign%20Form.pdf
Saturday, 5 May 2012
An e-book about PANDAS
I have just started reading this great book:
http://joshuasmissingpeace.com/blog/pandas-pans-and-ivig-treatment/
http://joshuasmissingpeace.com/blog/pandas-pans-and-ivig-treatment/
Day 4 - OK so far
My son called me into his room to show me what he had built on his computer game - we then spent a few minutes discussing it. He seems calmer today.
Last night he picked a small toy up off the floor and played with it in his hand. This is a big step forward.
Last night he picked a small toy up off the floor and played with it in his hand. This is a big step forward.
Friday, 4 May 2012
Day 3 - part 2 Herx Reaction
My son has become a little afraid of being alone - he had this at serious levels 2 years ago and it has slowly diminished. He was unable to save some work on his computer that he had worked really hard on and was very upset by this - so his emotions were heightened. On the positive side, he was not as upset as he has been on previous occasions. Also he is not as oppositional in his conversation and lets me get nearer to him.
When he was eating, he let me speak to him without throwing his food to the floor. He put out his elbow as a barrier and carried on.
So some very good positives but one negative.
A kind person sent me this - it is very informative about what can sometimes happen:
http://www.lymediseaseblog.com/jarisch-herxheimer-reaction-lyme-disease/
When he was eating, he let me speak to him without throwing his food to the floor. He put out his elbow as a barrier and carried on.
So some very good positives but one negative.
A kind person sent me this - it is very informative about what can sometimes happen:
http://www.lymediseaseblog.com/jarisch-herxheimer-reaction-lyme-disease/
Thursday, 3 May 2012
AUGMENTIN - Day 3
All is calm - we haven't had a fully calm day for years. My son is in his room whistling away and giggling like mad at a film - really nice belly laughter. Two years ago he was too terrified to watch the tv so this is a big improvement - I had to slowly build up from cartoon DVDs made for toddlers to family films and this took over a year (and was hugely expensive). It was about 14 months before he could watch the tv without being scared - and it is surprising how much 'toilet humour' there is on children's tv which, to someone with PANDAS, was too much to bear.
My son spits as a tick and that has been a little less today, but there is more hand blowing (each hand has to be blown the same amount, so if he blows one hand twice he has to do exactly the same to the other), but that is because he is getting nearer to more things, which is very positive.
Ah bliss.
My son spits as a tick and that has been a little less today, but there is more hand blowing (each hand has to be blown the same amount, so if he blows one hand twice he has to do exactly the same to the other), but that is because he is getting nearer to more things, which is very positive.
Ah bliss.
Wednesday, 2 May 2012
Hikikomori
In Japan it is said that one million young men lock themselves away in their bedrooms. Some of them block out the daylight. Mothers leave their food outside their bedroom doors and there is an increase in domestic violence - the parents are sometimes attacked by these frustrated young people.
http://en.wikipedia.org/wiki/Hikikomori
I read a great book about this: http://www.amazon.co.uk/Shutting-Out-Sun-Generation-Departures/dp/1400077796/ref=sr_1_2?ie=UTF8&qid=1335994620&sr=8-2
The hikikomori are male. There is another term for the females which I cannot remember but was, I think, more derogatory.
It is terrible to have a child who shuts out the sun. Luckily my child is mostly through that now - but his sensory issues and anxiety did stop him from leaving the house for 1.5 years.
http://en.wikipedia.org/wiki/Hikikomori
I read a great book about this: http://www.amazon.co.uk/Shutting-Out-Sun-Generation-Departures/dp/1400077796/ref=sr_1_2?ie=UTF8&qid=1335994620&sr=8-2
The hikikomori are male. There is another term for the females which I cannot remember but was, I think, more derogatory.
It is terrible to have a child who shuts out the sun. Luckily my child is mostly through that now - but his sensory issues and anxiety did stop him from leaving the house for 1.5 years.
Today - progress ...
I think that things are a little better today - more communication. My son seems to feel pain more though and has stepped on a couple of objects and reacted severely to the pain in his foot.
Tuesday, 1 May 2012
I have started my son on augmentin today ...
... I am really hoping that this antibiotic will make big changes quite quickly - I will keep you informed. He is on 3 x 250/125 mg Co-Amoxiclav.
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