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PANDAS has stopped her speaking


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Russell Dale, MD has published many many articles. If you google him, you can find many of his publications. For a quick glimpse go to pandasnetwork.org Go to the tab Strep Controversy, then click on Encephalopathy. There are two articles by Dale you can click on and read. Dale does do IVIG and plasmapherisis and steroids. He also does active research. If you e-mail him with your daughters problem, I am confident that he will see her as quickly as possible. He knows how this disease can progress quickly.

 

I strongly encourage you to contact him.

 

Whenever I correspond with him, I always e-mail his reply to my son's neurologist in the States.

 

Good luck!

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Note from looking at the blood tests all the Immunoglobulins are within the range - hence Now I dont know if an immunologist will be he answer

 

Sorry you're going through this, my son sees Dr. Murphy (who was mentioned in one of the other posts). He is a classic PANDAS case, textbook onset with only two exceptions - the age of onset (19 months - most doctors look at 3 and older for age of onset) and the fact that ALL of his labs have come back maddeningly normal - not even an elevated titre with a confirmed strep infection.

 

As a result of our disturbingly normal immune workups, and the fact that my son got strep 4 times last year (all while on abx) and at least twice this year (once in Feb, and now a recent impetigo infection while on full strength abx), Dr. Murphy's office is referring us to an immunologist. Their take on it is that there is something going on - the history of infection is there, but tests aren't showing anything.

 

Just thought I'd share that we're going to head down the immunology way with normal results too.

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Russell Dale, MD has published many many articles. If you google him, you can find many of his publications. For a quick glimpse go to pandasnetwork.org Go to the tab Strep Controversy, then click on Encephalopathy. There are two articles by Dale you can click on and read. Dale does do IVIG and plasmapherisis and steroids. He also does active research. If you e-mail him with your daughters problem, I am confident that he will see her as quickly as possible. He knows how this disease can progress quickly.

 

I strongly encourage you to contact him.

 

Whenever I correspond with him, I always e-mail his reply to my son's neurologist in the States.

 

Good luck!

 

Thanks Philly

I did contact him approx 4 weeks ago as he is in the public system - I have to be referred to him and then just wait - hence I started the ball rolling today and sent him a folder with all my daughters info and hopefully will get in to see him eventually - hope sooner than later ( he approx 10hrs drive away)

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Hi,

 

I'm in Melbourne...did you see Dr N or Dr D? The considered PANDAS expert in Australia is Dr Robyn Cosford - she's in Sydney. Dr D, Dr N and Dr Cosford have shared research. I don't know of Dr Dale but sounds like a good recommendation from PhillyPA.

 

By the way, there's no indigenous Lyme in Australia, as far as we know, though there are certainly ticks. The known Lyme cases here have been reported to have originated overseas.

 

Feel free to PM me. Good luck!

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Hi,

 

I'm in Melbourne...did you see Dr N or Dr D? The considered PANDAS expert in Australia is Dr Robyn Cosford - she's in Sydney. Dr D, Dr N and Dr Cosford have shared research. I don't know of Dr Dale but sounds like a good recommendation from PhillyPA.

 

By the way, there's no indigenous Lyme in Australia, as far as we know, though there are certainly ticks. The known Lyme cases here have been reported to have originated overseas.

 

Feel free to PM me. Good luck!

 

Hi Ozimum

We are in Melbourne too - and I did ring up the office of Dr Robyn Cosford today - was told she would not be able to see us this year

 

who is Dr N and Dr D - any help would be great

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  • 2 months later...

After a long battle with many different doctors here in Australia, We have finally convinced the right doctor to try IVIG on Lauren.

This was done for the first time last Friday.

Lauren has still not spoken a word - it has now been 10 months.

I just though i would share our experience.

All we were told was to bring Lauren in at 10am frid for IVIG -

Half way through the treatment she developed a dry cough so they backed of the rate and gave her an antihistamine. Her cough seemed to get less infrequent

so they continued on with the IVIG at a slower rate (ran out of time to give the full amount) - this cough was still there and we were told it would eventually go.

We we left that evening and on the way home this cough increased in frequency ie: every min and she began gasping for air whilst coughing.

Immediately we headed back to hospital to emergancy centre where they made sure her airways were clear and injected her with adrenalin and put her on vetalinand a drip etc etc.

all while she was coughing and gasping to breathe.

Over a period of the next 5 hours this coughing did become less frequent, howvever we spent the night in hospital and allowed to go home the next day.

Lauren today is still coughing(sounds very dry) not sure if this is a new thing and she still cannot speak

The fact that she has developed a head ache makes me feel that the IVIG is doing something and she has taken paracetamol to take care of that.

We need to go back and finish the dose tomorrow and even though we went through this unbelieveable nightmarish experience on Friday night we feel we need to

go down this path of IVIG to get her back to one day speaking.

After reading many post on IVIG our doctor here has not prepared Lauren for IVIG - as they have not told us to ensure she is hydrated before or given any

instructions after - I feel this forum has a wealth of information - Thankyou

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I agree with checking for Lyme and other co-infections, too. I have 2 children with PANDAS...both present differently (one is more Autistic), and the other was more classic onset. He gets terrible pain in his back, chorea, tics, OCD, and has, several times suddenly had difficulty speaking (including stopping speaking.) Thank goodness it came back within about 2 hours, but it was terrifying. (the one who has Asperger's has been helped tremendously by IVIG...social skills jumped nearly 7 years after the 2nd dose.) DS15 though, would get positive results from IVIG for about 3 weeks at a time, then backslide until the next dose (we did it 6 times.) Immunologist agreed that there was probably some other infection we hadn't found.

 

DS15 (the one with classic PANDAS onset, symptoms, etc.) definitely has PANDAS (did Cunningham test,) but more recently, we found out he also definitely has Lyme/co-infections, and I definitely wouldn't have believed it. I only tested, because we were at an impasse (PEX had fallen through, fighting insurance for IVIG,) and I felt like seeing an LLMD was something I COULD control. DH was the only one who tested positive on blood test (IgM was elevated), but DS18 and I both had several bands positive (he was symptomatic, with years of joint and muscle pain + he has PANDAS and Asperger's.) I definitely had mood changes similar to my children, and DS15 kept telling me I probably had the same thing (I did have a fully engorged tic on my head when I was a teenager for about 2 weeks,) + I have been fighting mycoP for 3 years...just diagnosed last year.) DS15 only had 1 band positive, and I still wasn't at all convinced that Lyme had anything to do with his, but we decided to start trying to treat (it's a clinical dx, and he did have what the doc thought were bartonella rashes...looks like stretch marks.)

 

After some severe symptoms starting in May of this year, all of a sudden, it lit up like a Christmas tree...couldn't deny it anymore for DS15. IV abx made the stretch marks start fading dramatically, and one of the set of symptoms that caused us to use IV abx (increased liver enzymes, enlarged spleen and low WBC) are a group of symptoms of babesia, and he finally tested positive for erlichiosis. But, he still has elevated ASO!

 

So, my point is, get everything tested if possible, but keep in mind that blood tests for Lyme are not always accurate, because bartonella actually "hide" the antibodies that would otherwise show up as positive. Only when you treat the bartonella, does it help.

 

None of this means your child has Lyme or co-infections or anything but strep. But, I wouldn't ignore the fact that there may be more than one thing going on, particularly since she's had it for 2 years now, and the immune system is compromised.

 

I also agree with PhillyPA to see the doctor in Sidney, and as a last resort, I would suggest getting an appointment with one of the docs here in the US.

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What an ordeal you've been through. I hope the IVIG provides the relief your daughter needs. Don't expect overnight results. It takes a few weeks. I know that after such a long time, a little more time may be hard to bear. It took us a yr to get our son properly diagnosed. Today, after IVIG 12 wks ago, our son is at approx 95%. Hang in there and please update us.

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  • 3 months later...

It has been approx 4 weeks after my daughters last dose of IVIG

She has has 3 doses spaced at 4 weeks apart.

During each dose her reaction - a continuous dry cough became less and less frequent after each session.

This was my only way of knowing that maybe the IVIG is working and it may help her.

Anyway I regretfully have to say there has been very little change as she has not woken up one morning

and started talking again.

 

All my effort were put into convincing the doctiors here that she did have PANDAS and it is a real condition

and IVIG is a treatment that we need to do etc, etc, etc.

 

So now where do I go from here ???????????????????????????????

 

The doctor here at the children's hospital has more or less said I cannot help you any further - which is because

there is nothing more i can request from him as this has been my agenda following the advise from doctors from oversea's

 

I now am questioning whether my daughter does really have PANDAS even though she had been diagnoised with hitting the markers

with the "cunningham test" as not one of the many differnt things we have tried has even remotely helped her.

 

She is just cannot talk as her soft pallete is just rythmically moving continuously from morning until night

 

We have not given up hope nor have we stopped looking for answers but we are running out of new options

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Hi lozs dad. I am also in Australia and am only in the 6 th month of our PANDAS journey. It is hard being here and so far away from most doctors and specialists who understand and treat this condition. I hope that things have improved or that you have new avenues to explore since your post in May. Ozimum was helpful with a contact for me in Brisbane when I posted. I hope she has been able to help you too. Have you contacted Diana at pandas network? She was incredibly supportive (and still is) and has contacts she can pass on who will discuss treatments with your doctors. She also works with Swedo and Cunningham. I have contacted Dr Dale who is currently running a Tourettes clinic in Sydney and also Dr Carapetis (Dr Cunningham's suggestion) but he is in Darwin. Both are with universities and doing case studies not actively taking patients. I just wanted to let you know there are more cases starting to be acknowledged in Australia and I hope things with your daughter have improved.

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Your daughter may have a form of auto-immune encephalitis. She could get a spinal tap to check for NMDA encephalitis. There are many different kinds of auto-immune encephalitis but you need a spinal tap to find them and an expert in the field of auto-immune encephalitis to find them. I know with NMDA loss of language,facial movements (like the vibrating palate), trouble breathing are all included. You can start with this facebook group to find out more information and who in Australia can help you. I know that there are Australians in this group. There are many research articles on the subject as well. However, your daughter does not seem to have any cognitive issues. Most people with encephalitis lose cognitive skills. I get the impression that your daughter still is functioning intellectually even though her speech is compromised. It is worth investigating. Regardless, you should have your neurologist get in contact with Josep Dalmau in Spain to find out what to test for. Ask questions on this facegroup page. They will tell you what to do. Many people (women) have tumors terratomas in the overies associated with this disease although some people have none. She should get an ultrasound of her overies to make sure that there is nothing there.

 

https://www.facebook.com/#!/groups/ANTINMDARE/

Edited by PhillyPA
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