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PANDAS has stopped her speaking


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Have been looking at this forum for a few months - and thought I would just like to tell you briefly our story and where we are at in our almost 2 year journey.

My daughter whom was just about to turn 12 woke up one morning with a cold and the next day starting to sneeze ( exactly the same as Lauren Johnston) where she would sneeze (make a sound come out of her mouth with head movement and all) She would do this for 3 min on and 5 min off. This would vary but it would occur from the morning she woke up until she sneezed herself to sleep. She would often have what we called an attack where she would sneeze constantly for up 3 - 4 hours non stop.

Ofcourse we saw all the relevant doctors, neurologist's, pediatricians, psychiatrist's etc, etc, etc, - to be told the same old that there was nothing physically wrong with her - must be a mental thing hence she was put on all sorts of "drugs" which nothing helped. As we have all experienced she would have her good days and many bad days.

After my wife and I saw we were not getting any where, as I suppose most of you have done - we began to do our own research and did come accross PANDAS - this meant nothing to anybody here in Australia and we had to specify to or doctors that we wanted thses blood test carried out - up untill this stage no one had ever tested or even checked her for AntiDNase B etc, etc

However PANDAS was either dissmissed straight away or we were told that as you cannot test for it - there is no cure hence we should be looking for something else. - ""frustrating""

My daughter did manage to go to school(aprox 40% of the time) last year - and was frequently asked to leave class by her teachers as she was a disturbance to the rest of the class because of the noise she made when she sneezed but we mangage as all of us have too.

 

Late last year one morning my daughter woke up and she could not speak - the sneezing sound had gone and she was now making this very quiet puffing sound. From the morning until night when shen eventually falls asleep she makes this sound and hence has not spoken one word in the last 5 1/2 months. As I have read in other posts - she has difficulty in falling asleep and out of pure exhaustion each night she will eventually do this and we are extremely happy when she does sleep more than 5 hours a night.

She now does attend school regulary as she is no longer a disturbance to her class as she sits there in silence not being able to speak. Thanks to the modern age of technology we live in that she can communicate via texting,face book etc with her friends.

 

Just last week we had recieved our test results back where we had participated in the "Cunningham Test" - hence it was confirmed by all accounts that my daughter does have "PANDAS"

What does this mean here in Australia - not much

Where have we gone to get help - well Im sure you have all experienced the same journey seeing every doctor and specialist only to be told that PANDAS does not exist (here in Australia) anyway

I feel now after reading so many wonderful post on this forum - that IVIG is probably our best chance - cannot be done here in Australia - not for PANDAS any way at this stage - I am just starting to fight this battle over next couple of weeks.

We have not found one doctor here in Australia that has the for sight to reconise PANDAS and try and treat her with the same methodology that at least other children are getting treated with in other parts of the world which is the most frustrating part of our journey so far.

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My heart aches for you. I want so badly to do something to help, but I don't know of any resources in Australia. Do you have DAN doctors there? (Defeat Autism Now)They will most likely know about PANDAS, although they probably will not be covered under insurance.

 

My daughter was just gaining lots of speech at age 6 & 7 (she's developmentally delayed) and lost all of her speech at age 8, much in the way you describe- all speech attempts turned into "puh, puh, puh"- a sound she had previously been unable to articulate. I know its heart breaking. So sorry you're going through this.

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Thank you for sharing your story. It is so painful. Please let your daughter know that we are all thinking of her and that many specialists around the world are working to help children with PANDAS. I am not familiar with the health care system in Australia. Is there a reason that no one at all would consider IVIG? Your daughter's case sounds so severe.

 

Also, have you had your daughter checked for immune deficiencies? Many children on this forum also have immune deficiencies, which are covered for IVIG. Some children have relatively mild immune deficiencies but are still covered for IVIG. Has your daughter seen an immunologist - among her many doctors?

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I pulled this off of "Saving Sammy" facebook:

 

Doctors in Australia (PANDAS):

 

Richard Stuckey, MD

617.55 364396

 

Behavioural Neurotherapy Clinic

www.adhd.com.au/Pandas.html

 

Steven Mouratidis

Allergy Elimination Clinic

www.AllergyElimination.com.au

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thankyou so much for responses,

yes we have been to Behavioural Neurotherapy Clinic and put my daughter on muliple varieties of neutrients for a period of 4 months without any success

 

no we have not been to an immunologist - in the many many blood testes she has under gone whar sort of deficiencies are we looking for ????

she has been tested for almost every blood test known to man kind - (i think or it just looks this way)

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thankyou so much for responses,

yes we have been to Behavioural Neurotherapy Clinic and put my daughter on muliple varieties of neutrients for a period of 4 months without any success

 

no we have not been to an immunologist - in the many many blood testes she has under gone whar sort of deficiencies are we looking for ????

she has been tested for almost every blood test known to man kind - (i think or it just looks this way)

 

If you have copies of her bloodwork, look to see if an immune status panel has been done for overall IgG, IgA, IgG subclasses, and 14 s. pneumoniae titers. Those are the tests that are run in the US. I don't know if the same tests are run (or given the same names) in Australia. See if ANY of those fall below the "normal" range. Sometimes general doctors look a the total IgG and if it is not real low they say "This is not an immune deficiency". Some immunologists, though, disagree, and will treat with IVIG if there is a specific type of IgG that is low.

 

If she has not been to an immunologist, you might try to find one. Look for one that specializes in children and is progressive.

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You need to get help quickly. Your case is similar to my son's case and another parent that I know of. Her son stopped speaking at age 11. It can get much worse. Once the speaking stops, it is very very serious.

 

You are so lucky to be in Australia. I wish I lived there. You have access to the world expert on this disease and other auto-immune related diseases. Contact Dr. Russell Dale. He is in Sydney. He is with the children's hospital at Westmead and teaches at Sydney Medical School. I have corresponded with him several times and he is most helpful. He is very familiar with PANDAS. He has done lots of research. He will help you.

 

Being in Australia, you are the best hands with Dr. Dale. Even better than in the United States. I have told him I would fly to Australia in a heart beat if necessary.

 

Contact him today.PM me if you have any questions. I have his contact information if you have trouble finding it. Dr. Dale wrote the text book Inflammatory and Autoimmune Disorders of the Nervous System in Children.

 

You are SO LUCKY to be in Australia!

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Is there Lyme in Australia? Is there any history of tick bites? I would also recommend testing for Lyme if that is the case. Lyme can also cause an elevated Camkinase 11 activation.

 

PS

Lauren Johnson also had Lyme (in addition to PANDAS).

 

 

Good luck!

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Thank you so much for taking up you time to write to me.

 

Like I have said my daughter has not spoken for the last 5 1/2 months - we have discovered that via a video x-ray her soft palate is just rhythmically moving continuously all the time hence causing her to produce this puffing sound - thus preventing her from talking.

We have been in consultation with Dr T since last Dec and she had gone through the full regime of all drugs including Prednisone all which had no effect,

Hence because she had no reaction to any of the above treatment Dr T was very surprised when the results came in (Cunningham Test) that she does have Pandas

 

I think now our only avenue is IVIG (i think) hence I am struggling to find someone here that will even consider it which is a huge problem at this very moment.

As I am sure you are all well aware nothing ever happens today or tomorrow - we always get make an appointment and see me in approx 4 weeks - well that mean 4 weeks more that my daughter is living like this - (sorry now venting) but we are working slowly through the process.

 

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

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Thank you so much for taking up you time to write to me.

 

Like I have said my daughter has not spoken for the last 5 1/2 months - we have discovered that via a video x-ray her soft palate is just rhythmically moving continuously all the time hence causing her to produce this puffing sound - thus preventing her from talking.

We have been in consultation with Dr T since last Dec and she had gone through the full regime of all drugs including Prednisone all which had no effect,

Hence because she had no reaction to any of the above treatment Dr T was very surprised when the results came in (Cunningham Test) that she does have Pandas

 

I think now our only avenue is IVIG (i think) hence I am struggling to find someone here that will even consider it which is a huge problem at this very moment.

As I am sure you are all well aware nothing ever happens today or tomorrow - we always get make an appointment and see me in approx 4 weeks - well that mean 4 weeks more that my daughter is living like this - (sorry now venting) but we are working slowly through the process.

 

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

 

Let us know if you are able to get in touch with Dr Dale. It sounds like that is a good doctor to see. I looked up his book, (http://www.amazon.com/Inflammatory-Autoimmune-Disorders-Children-Developmental/dp/1898683662) and the chapter on PANDAS is written by Tanya Murphy, who is an excellent psychiatrist in the US. Perhaps Dr. Dale could consult with Dr. Murphy on your case.

 

Did Dr.T do prednisone with your daughter? Sometimes, when there are no infections, prednisone can help to stop the autoimmune response. This is often temporary, but some doctors use it to try to determine if the problem is autoimmune.

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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!

 

Edit to say that since writing this, I've found the following websites which claim that Lyme has been contracted in Australia from tick bites. See www.Lyme disease.org.au and www.karlmcmanusfoundation.org.au

Edited by Ozimum
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There is an entire family that travels from Australia for Lyme treatment by our Dr. I am sorry I do not know where their specific Lyme originated.

 

So sorry to hear of daughter tragic illness.... Wishing you all the best in figuring this out for her.

Edited by SF Mom
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I'm thinking plasmapheresis might be warranted in such an extreme case. I would definitely do very through Lyme testing (speciality testing) prior to plasmapheresis and/or ivig as both of these procedures can skew the Lyme results. If there is Lyme involved ivig might show Improvment but it most likely just "band-aid" the infection. As Dr J, Dr B and a whole handful of very good Lyme literate doctors have told us regarding Lauren, the ivig is doing a pretty good job keeping the Lyme at bay but you still have to treat it with the correct antibiotics alone or with ivig (different strokes for different folks as every child responds differently). I hope one of the doctors that were shared uncovers all your daughters infectious triggers and you can find the right treatment course quickly! I'm suspecting (but what do I know) that if your daughter also has Lyme that throwing all sorts of different antibiotics at her "willy nilly" could/did actually make her worse. As much as I don't spend any time regularly on this forum these days (the lyme is "killing me") rest assured you are in the hands of wonderful, supportive parents to help you along the way just as they did with me when my daughter was at her worst. My heart goes out to your family and your daughter. Please tell her Lauren would be happy to email her (or facebook) with her if it would be hopeful and helpful.

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