When your child was first being diagnosed.....

[PANDAS_Denmark]

Dear Michele -

Oh yes – it is very possible, that the two could be connected ! And maybe you can use that in your argumentation, that Andrew should be on a daily antibiotic !!! (and that it IS PANDAS, if some of the doctors still have their doubts ???)

I asume that you refer to reumatic fever, writing RF ?? And reumatic fever is caused by streptococcus. In fact the very same streptococcus that causes PANDAS !

PANDAS and RF is – as such – to different autoimmunological reactions to streptococcus ! - And some doctors argues, that there might be a genetical connection between these (and other) autoimmunological reactions to streptococcus !

 

I´ll try to answer your questions below :

Yes – I do take ”daily” antibiotics too. That is : I don´t take them daily now, because Zithromax is not to be taken daily but only a few days a week. But at first I – as my son – tried Penicillin V, and later Amoxicillin. Both Penicillin V and Amoxicillin was to be taken daily. Unfortunately Penicillin V didn´t work for us at all – and after only a few month Amoxillin didn´t work either. I had to struggle for a long time to prove, that it didn´t work out for us – and succeeded at last.

The doctors DIDN´T make the connection :-(. I did ! (Thank God for the Internet !!).

Our story – and how I made the connection – in short :

My mother was sick with reumatic fever, when I was a kid and had to have removed one of her kidneys too, due to an autoimmonological reaction to strepinfections.

Ever since I was a kid I have had several strepinfections – and tourettelike symptoms, but very mild, so noone cared.

As a young teenager I began having different periodical neurological symptoms : 2-3 months of dizziness, 2-3 months not being able to walk more than a few hundred meters, 2-3 months not being able to hold my head ... etc.. Plus – periodically – swallen and hurting joints.

Everytime I – and/or my mother – was told that it might be psycological ... and I was never examined as such. No one mentioned or suspected, that it could be an immunological reaction to streptococcus. My mother never insisted on a thorough examination, as the doctors was right in that way, that the symptoms disappeared after a few months, and everything was back to normal (untill the next strepinfection).

My son was born in 2000. A fine and healthy boy, except for the fact that he was having infections all of the time, and among them several strepinfections and scarlatina several times.

Summer 2005 we both had strepinfections several times – and autumn 2005 all of a sudden – that is over night - my son ”developed” severe OCD and tics.

The doctors told me, that it might be Tourette Syndrom.

A month later – again after another strepinfection ! - my son got what was thought to be meningitis (but later turned out to be ADEM : Acute Disseminated Encephalomyelitis).

He was hospitalized and treated with antibiotica directly in the veins.

All of a sudden his OCD and tics (allmost) disappeared. Again : Over night.

I found that very strange. I would have believed, that a child with severe OCD and tics that was being hospitalized was to react in a ”negative” manner : That is with more OCD and tics.

So : I started my search of a possible explanation.

My wish for finding a possible explanation became even bigger, as my son kept (and still keeps) getting petecchias (and a scarlatini form rash) with every infection and especially strepinfections – and was/is hospitalized every time, because of the danger of that being a sign of a new meningitis(/ADEM).

I came across this site :-) and NIMHs site as well – and confronted the doctors : Could it be PANDAS that my son was suffering from ? And could the meningitis in fact have been an attack of ADEM ?

They had never heard of it !! :-(.

After a while I was lucky to find a doctor, that was willing to listen – and to test my son with the help from a specialist in immunoneurological issues.

The tests (and among them the Anti Basal Ganglia Test) showed, that I was right : It was PANDAS !

- And the ”meningitis” – they agreed – could very well have been an attack of ADEM and not meningitis at all.

Autumn 2005 – at the very same time, that my son first ”developed” OCD and tics – I again got neurological symptoms. Only this time they didn´t seem to go away.

The doctors – again – told me, that it had to be psycological. A reaction to the stress that my sons disease did put me in.

For a while I accepted that explanation, allthough I didn´t feel stressed – and allthough the doctors agreed with me, that stress couldn´t possible be the cause ALL of my symptoms.

After allmost a year I succeeded in having some neurological testings done. The suspicion was, that it might be multiple sclerosis. The results however showed, that it was not MS. The doctors told me, that they didn´t have a clue, what I was suffering from – and I just had to life with it. (At that time I could barely walk, was constantly dizzy, even when laying down, had to spend 20 hours a day in bed – resting, had problems sinking and talking ... )

When my son was diagnosed I started my second round of searching and reading. I wanted to know all about PANDAS, that I could possible find and understand.

And I started to wonder : Could there – possible – be a (genetic ??) link between the facts that both my mother and my son had a stated autoimmunological disease and my symptoms ?

My neurologist did find it interesting – but had never heard of PANDAS or the like, and didn´t know where to begin and where to end, testing me.

I then decided to contact the specialist that had helped testing my son. (A specialist that normally only the hospitals may contact, not ordinary people).

It was my luck, that he found both my sons and my case interesting – and was a very, very kind man and highly respected doctor too.

The tests was done and all my journalpapers thoroughly examined too trying to see if there was a connection between the strepinfections I had had and the neurological symptoms I had had. This leading to the conclusion that I suffer from MDEM, that is Multiphasic Disseminated Encephalomyelitis (several attacks of ADEM), caused by ... streptococcus !!

As mentioned before I have had several discussions with the doctors about which antibiotic to use.

I have found good help in the book ”Mandell´s Principles and Practice of Infectious Diseases”, that the doctors themselves often refer to.

I sincerely hope that my story can help your son – and you !

Best wishes -

PANDAS_Denmark

[harpazo_hope]

I am thankful for all the responses on this thread!

 

My son had minor tics which worried me only because I was afraid how other children would treat him. When his tics became severe, it was all I could think of and I cried a lot. I was still afraid of how others would treat him. I was also afraid of how the learning difficulties would affect his education. (By the way, these also wax and wane...is this typical?) I became angry because I was alone in this. I am home with him all day long, and no one understands what it's like because they don't see the worst of it. I also had to go to God for comfort. When everything seems out of control there is comfort in knowing He is in control.

 

 

I am curious about the repeated questions. This is also associated with Tourette's? My son drives us crazy doing this! He'll ask things over and over, or he will ask a question he knows the answer to. He will also tell us about the same event or story repeatedly.

 

Anyway...thanks for the great thread.

 

 

Jasmin

[michele]

Wow that is an amazing story. My daughter had chronic strep infections for four years and had her tonsils removed. She has not had strep since. However she never got PANDAS or any of the symptoms. So over the period of several years when she had so many strep infections my son was constantly exposed. He started with symptoms on his first strep infection. I never put the two together at the time. I really didn't understand PANDAS before. I had a positive rheumatoid factor. I don't think rheumatic fever. I did have some bad strep in the past. I have never heard of ADEM. You have done some research. I would like to try antibiotics to see if my symptoms would go away. This strep is an awful thing. It can do alot of damge to ones body! My uncle has the rheumatoid arthritis too and my grandma's mother did also. I don't know if this is the right diagnosis for me or not. At times my Rheumatoid Factor is back to normal. My symptoms also wax and wane but never go completely away either just get worse during flare ups. I have given up on Dr's for me. The rheumatologist just push those harsh drugs. I definately have signs of arthritis on xrays which for 35 years old is odd I think. You are fortunate to have found a Dr. that took on your case and explored it to its fullest to give you a clear explanation of what is going on. I've asked for the basal ganglia test for my son and they say it is just not done here because of costs. Thanks for sharing your story. It has given me something to go on.

 

Michele

Dear Michele -

Oh yes – it is very possible, that the two could be connected ! And maybe you can use that in your argumentation, that Andrew should be on a daily antibiotic !!! (and that it IS PANDAS, if some of the doctors still have their doubts ???)

I asume that you refer to reumatic fever, writing RF ?? And reumatic fever is caused by streptococcus. In fact the very same streptococcus that causes PANDAS !

PANDAS and RF is – as such – to different autoimmunological reactions to streptococcus ! - And some doctors argues, that there might be a genetical connection between these (and other) autoimmunological reactions to streptococcus !

 

I´ll try to answer your questions below :

Yes – I do take ”daily” antibiotics too. That is : I don´t take them daily now, because Zithromax is not to be taken daily but only a few days a week. But at first I – as my son – tried Penicillin V, and later Amoxicillin. Both Penicillin V and Amoxicillin was to be taken daily. Unfortunately Penicillin V didn´t work for us at all – and after only a few month Amoxillin didn´t work either. I had to struggle for a long time to prove, that it didn´t work out for us – and succeeded at last.

The doctors DIDN´T make the connection :-(. I did ! (Thank God for the Internet !!).

Our story – and how I made the connection – in short :

My mother was sick with reumatic fever, when I was a kid and had to have removed one of her kidneys too, due to an autoimmonological reaction to strepinfections.

Ever since I was a kid I have had several strepinfections – and tourettelike symptoms, but very mild, so noone cared.

As a young teenager I began having different periodical neurological symptoms : 2-3 months of dizziness, 2-3 months not being able to walk more than a few hundred meters, 2-3 months not being able to hold my head ... etc.. Plus – periodically – swallen and hurting joints.

Everytime I – and/or my mother – was told that it might be psycological ... and I was never examined as such. No one mentioned or suspected, that it could be an immunological reaction to streptococcus. My mother never insisted on a thorough examination, as the doctors was right in that way, that the symptoms disappeared after a few months, and everything was back to normal (untill the next strepinfection).

My son was born in 2000. A fine and healthy boy, except for the fact that he was having infections all of the time, and among them several strepinfections and scarlatina several times.

Summer 2005 we both had strepinfections several times – and autumn 2005 all of a sudden – that is over night - my son ”developed” severe OCD and tics.

The doctors told me, that it might be Tourette Syndrom.

A month later – again after another strepinfection ! - my son got what was thought to be meningitis (but later turned out to be ADEM : Acute Disseminated Encephalomyelitis).

He was hospitalized and treated with antibiotica directly in the veins.

All of a sudden his OCD and tics (allmost) disappeared. Again : Over night.

I found that very strange. I would have believed, that a child with severe OCD and tics that was being hospitalized was to react in a ”negative” manner : That is with more OCD and tics.

So : I started my search of a possible explanation.

My wish for finding a possible explanation became even bigger, as my son kept (and still keeps) getting petecchias (and a scarlatini form rash) with every infection and especially strepinfections – and was/is hospitalized every time, because of the danger of that being a sign of a new meningitis(/ADEM).

I came across this site :-) and NIMHs site as well – and confronted the doctors : Could it be PANDAS that my son was suffering from ? And could the meningitis in fact have been an attack of ADEM ?

They had never heard of it !! :-(.

After a while I was lucky to find a doctor, that was willing to listen – and to test my son with the help from a specialist in immunoneurological issues.

The tests (and among them the Anti Basal Ganglia Test) showed, that I was right : It was PANDAS !

- And the ”meningitis” – they agreed – could very well have been an attack of ADEM and not meningitis at all.

Autumn 2005 – at the very same time, that my son first ”developed” OCD and tics – I again got neurological symptoms. Only this time they didn´t seem to go away.

The doctors – again – told me, that it had to be psycological. A reaction to the stress that my sons disease did put me in.

For a while I accepted that explanation, allthough I didn´t feel stressed – and allthough the doctors agreed with me, that stress couldn´t possible be the cause ALL of my symptoms.

After allmost a year I succeeded in having some neurological testings done. The suspicion was, that it might be multiple sclerosis. The results however showed, that it was not MS. The doctors told me, that they didn´t have a clue, what I was suffering from – and I just had to life with it. (At that time I could barely walk, was constantly dizzy, even when laying down, had to spend 20 hours a day in bed – resting, had problems sinking and talking ... )

When my son was diagnosed I started my second round of searching and reading. I wanted to know all about PANDAS, that I could possible find and understand.

And I started to wonder : Could there – possible – be a (genetic ??) link between the facts that both my mother and my son had a stated autoimmunological disease and my symptoms ?

My neurologist did find it interesting – but had never heard of PANDAS or the like, and didn´t know where to begin and where to end, testing me.

I then decided to contact the specialist that had helped testing my son. (A specialist that normally only the hospitals may contact, not ordinary people).

It was my luck, that he found both my sons and my case interesting – and was a very, very kind man and highly respected doctor too.

The tests was done and all my journalpapers thoroughly examined too trying to see if there was a connection between the strepinfections I had had and the neurological symptoms I had had. This leading to the conclusion that I suffer from MDEM, that is Multiphasic Disseminated Encephalomyelitis (several attacks of ADEM), caused by ... streptococcus !!

As mentioned before I have had several discussions with the doctors about which antibiotic to use.

I have found good help in the book ”Mandell´s Principles and Practice of Infectious Diseases”, that the doctors themselves often refer to.

I sincerely hope that my story can help your son – and you !

Best wishes -

PANDAS_Denmark