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PANDAS has stopped her speaking


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If you don't know where to turn at this point, I would consider homeopathy...usually cheap, easy and safe. There are a few of us around seeing gains even after trying "the big guns"...see the post about treating PANDAS without antibiotics for a small sample....

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I am so sorry you are going through this. DID you ever see Dr Dale? Can you at least CALL or email him to ask his advice? Sending a description of your d's experience may get him to be in touch with you.

 

This is really a severe crisis case and your child is suffering. I agree you need a Ps knowledgeable eye to discern if treatments should go ahead or not.

 

I agree a call to Diana Pohlman via the www.pandasnetwork.org may be of help--

 

Also, would anyone consider trying pheresis? Just keep an eye on the protocol that was used in the research studies (ie., NIH -- Perlmutter study for example) so the dosing and timing is done. The dose of IVIG of course is supposedly critical. Also the pheresis protocol. Dr Grant at National Institutes of Health can help you get the protocol that was used in the NIH studies, and/or is being used at the current study at NIH. *(I wonder if that would be a possible option for your child?)

 

I agree the spinal tap by a knowledgeable doctor, and an MRI -- time to rule out all other physical possibilities if these have not been done.

My best to you, don't give up hope.

 

My d did not speak for a month--finally started with a strong steroid burst (14 days long including a taper) and full strength antibiotics...it then took 9 months and another steroid burst to bring her back.

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Does your daughter have the ability to produce sounds (cough, throat clear, vowels) on demand? AS a speech-langugae pathologist, I'm not sure why involuntary movement of the velum/soft palate would be blamed for lack of speech. This affects nasality and ability to produce plosive sounds (p, B) and other consonants that require build-up in intraoral pressure, but vowels ahould be there if it's just a palatal issue. What's happening at the vocal cords, where sounds are produced? Wondering if she's having involuntary movements there, inhibiting her ability to initiate speech sounds or other sounds VOLUNTARILY. Is her swallowing/eating impacted? Just wondering if a speech pathology evaluation might shed some more light on what's happening here. This sounds very neurological and I would pressure neurology to look for the cause.

 

Amy

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Does your daughter have the ability to produce sounds (cough, throat clear, vowels) on demand? AS a speech-langugae pathologist, I'm not sure why involuntary movement of the velum/soft palate would be blamed for lack of speech. This affects nasality and ability to produce plosive sounds (p, B) and other consonants that require build-up in intraoral pressure, but vowels ahould be there if it's just a palatal issue. What's happening at the vocal cords, where sounds are produced? Wondering if she's having involuntary movements there, inhibiting her ability to initiate speech sounds or other sounds VOLUNTARILY. Is her swallowing/eating impacted? Just wondering if a speech pathology evaluation might shed some more light on what's happening here. This sounds very neurological and I would pressure neurology to look for the cause.

 

Amy

 

Hi Amy

We have well and trully been down the path of it being neurological - and all the neurologist have dropped us like a hot potatoe and passed it off as psychological.

Involuntary she does make sounds like "ahhh" when somthing frustrates her or "ohhh" when she is annoyed - however try and get her to repeat those sounds and she cannot.

It's not very loud but you can hear them. She also is able to laugh out loud and its always a pleasure to hear that noise.

She has been seeing a speech pathologist for the past 5 months and whilst she still is not speaking she does make small wispering sounds vouluntary now

which is a great sign.

Edited by lozsdad
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Does your daughter have the ability to produce sounds (cough, throat clear, vowels) on demand? AS a speech-langugae pathologist, I'm not sure why involuntary movement of the velum/soft palate would be blamed for lack of speech. This affects nasality and ability to produce plosive sounds (p, B) and other consonants that require build-up in intraoral pressure, but vowels ahould be there if it's just a palatal issue. What's happening at the vocal cords, where sounds are produced? Wondering if she's having involuntary movements there, inhibiting her ability to initiate speech sounds or other sounds VOLUNTARILY. Is her swallowing/eating impacted? Just wondering if a speech pathology evaluation might shed some more light on what's happening here. This sounds very neurological and I would pressure neurology to look for the cause.

 

Amy

 

Hi Amy

We have well and trully been down the path of it being neurological - and all the neurologist have dropped us like a hot potatoe and passed it off as psychological.

Involuntary she does make sounds like "ahhh" when somthing frustrates her or "ohhh" when she is annoyed - however try and get her to repeat those sounds and she cannot.

It's not very loud but you can hear them. She also is able to laugh out loud and its always a pleasure to hear that noise.

She has been seeing a speech pathologist for the past 5 months and whilst she still is not speaking she does make small wispering sounds vouluntary now

which is a great sign.

 

SO glad to hear your daughter is making some progress, albeit small, but still progress in speech services. The complexity of her situation is great & she certainly has a great parent advocating for her.

 

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Have you tried immunosuppressants? Im having trouble talking too. Im leaving France early.

I'm very sorry to hear this. If you are comfortable sharing about it, can you elaborate about the difficulty you are having? Is it motor related or a word retrieval/processing problem? I'm just hoping to gain some insight into what has happened to my daughter. But, I will understand if you do not want to share.

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I'm a speech therapist too, and I just wanted to add that Pandas can do strange things to a child's speech. What you describe almost sounds like verbal apraxia, although it's hard to say without seeing it.

 

How are her other aspects of coordination? handwriting? gait? etc. If you tell her to pucker her lips, blow, move her tongue up/down, side to side, can she do it? If not, this might indicate oral apraxia.

 

My daughter started stuttering pretty severely out of nowhere for about two weeks when both of my kids were sick (no history whatsover of stuttering before). The stuttering stopped after high dose zithromax (I think it was 500/mg day for 10 days.) She also had some swallowing problems during severe episodes of chorea.

 

Have you checked into Sydenham's chorea? Sydenham's can cause speech difficulties/dysarthria/dysphagia. My daughter's Cunningham test also showed clear Pandas, but her symptoms were almost all more like Sydenham's.

 

We had good luck initially with massive doses of steroids combined with abx. (first zithromax, then clindamycin/prednisone, then biaxin/ medrol). She also got decadron by IV at one point.

 

I fully understand your issues with neurologists washing their hands of the situation. We were summarily dismissed by a few of them too.

 

In the end, the only thing that resolved her symptoms was plasmapharesis. She has been fine since.

 

Have you emailed videos to Dr. T? He was a godsend to us.

 

Also, email Diana at the pandasnetwork.org. If anyone can help, it's her!

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  • 2 months later...

I just thought I would update you all on Lauren's condition - and """ WOW""" I have some fantastic news to share with all of you

"SHE HAS STARTED SPEAKING AGAIN" after 14 months of not saying a word

Her 3rd and final treatment of IVIG was given to her approx 8 weeks ago - and we were more or less told by the treating physician that there was nothing else he could do for us - see him in 3 months time etc, etc,etc (he never believed in Pandas - But I needed him to get the IVIG)

Approx 4 weeks later she started to make sounds - a "sigh" when she became frustrated with something - a "ah uh" when she said wanted to say yes.

These sound were becoming more and more prevalent as weeks passed.

About 3 or 4 weeks ago she started whispering very quietly one morning - even though we could not make out what it was something was coming out of her mouth - and each day it became a little bit louder and more clear and there was no other ticing sound (chronic sneezing) coming out of her mouth.

Today she is speaking again - WOW

Now - the fear we all face - last week after she woke up one morning she began to sneeze again - very quietly and only lasted 30 - 40 seconds then she was ok

Our hearts sunk deep into the ground - fight back tears my wife and I chose to ignore this like nothing has happened and Lauren walked out of the room - she was devastated and ran in her room crying.

She had developed a cold a few days earlier so after hearing her sneeze again at this point we decided to start her on anti-biotic’s immediately as we feared we are back 2 1/2 years ago where this all started with a cold and a strep throat and no one treating her.

She has just about finished her dose - and every so often we will see her sneeze quietly for about 30-40 seconds and then continue on as if nothing has happened.

It is like Deja-vu when it all started at the beginning but we are sitting down and talking to her now and we are so very excited about that.

She is very much looking forward to tomorrow as she had made new friend’s last year at school whom have never heard her voice before and the new year of school starts .

We as a family are all extremely excited and of course anxious about the future and like all of us we can only take it one day at a time and hope the next day is better than the previous one.

Thankyou all for your support

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This is wonderful news!!! Thank you for coming back to share it.

 

She IS on full strength antibiotics now for the long haul -- right?

 

Dr. L, and other PANDAS treating doctors (ie., Saving Sammy book) would DEFINITELY have her on it --

 

You have had such good response to the IVIG, and perhaps helped by the antibiotic she has recently been on...please keep her on it. You will know if it helps. It will be clear.

 

Since your daughter has been so severely affected, (and mine was too--), I encourage you to contact Dr. L or another PANDAS savvy (and EXPERIENCED) doctor and get the best follow up to make every effort to never have this happen again.

Edited by T.Mom
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I am so very, very happy for you. This is wonderful news.

 

I completely agree, though with the previous post. She should not be off antibiotics. PANDAS specialists are treating it like Rheumatic Fever, and keeping the kids on a regular daily dose of abx. When they get sick, it's important to raise the dose.

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