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Blake 12yr old female (2 month update - Great News!)


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Just got back from Dr. L's office in Bethesda earlier this afternoon. Had some time to chit chat with the office staff who are just about experts on PANDAS in their own right. FYI - Dr. L is booked up it seems into next year and it may not be as easy to get in as a new patient at this time. I wouldn't give up though, her staff and she are very sympathetic people.

 

We had a fairly brief visit with Dr. L amounting to roughly twenty minutes. We talked about how Blake has gained weight and that her tics are completely gone. Fears are mostly gone too. Anorexia was a big concern for me and I was very sad that she only weighed 59 lbs on her first visit - a basic bag of bones with knobby knees. Dr. L weighed her in and I almost fell over when she reported that Blake now weighs 81 lbs.

 

22 lbs gain in TWO MONTHS. She is at the 50th percentile for 12 year olds now and 25th percentile for height. In other words... normal.

 

No reason to do blood work... no reason to do further testing... no reason to take tonsils out... no reason to have IVIG... in other words...

 

SHE IS OK NOW !

 

She will stay on 1000 Augmentin XR cut in half morning and night. Dr. L reiterated to us that PANDAS children are strangely immune to the side effects of prophylactic antibiotics in terms of yeast infections etc. She said if I want to give her a probiotic I could, but she doesn't know much about them.

 

Dr. L also reiterated that the cat is out of the bag on Strep and OCD. She said that doctors all over the world should be diagnosing PANDAS soon and administering steroid bursts, Augmentin XR, and IVIG where warranted. Methinks someone should get in touch with Augmentin XR drug company and have them do a major marketing push for this drug as a treatment for OCD.

 

Thanks again to Stephen the angel who directed me to Dr. L at the OCD conference dinner with Beth Maloney. My little girl is better now because of you. I'd also like to put a shout out to the man upstairs. My prayers get answered way more often than I deserve.

 

Dave H.

Edited by Hierge
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"SHE IS OK NOW"

 

That is such good news! Whoohoo!

 

"Dr. L also reiterated that the cat is out of the bag on Strep and OCD. She said that doctors all over the world should be diagnosing PANDAS soon and administering steroid bursts, Augmentin XR, and IVIG where warranted."

 

And so is that! Thanks for posting!

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Hey Dave--:) we are really thrilled with your dear daughter's wellness. She is one fortunate child to have you as her Dad.

 

That is great news as to what Dr L had to say about Pandas becoming more recognized. This is certainly due to the tireless work of Dr.s like Dr L.

 

We will be forever thankful for each of the doctors and researchers who have helped make PANDAS treatments a reality. It is such a horrible illness--affecting more then we know. We are thankful.

Edited by T.Mom
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Dave - I think I was sitting at your table that night as well - right next to you and your wife if I remember correctly. I was picking everyone's brains about doctors as well and we had an appt with Dr. L that following week for my son. If I'm correct...I remember your story very well and am so happy to hear how well your daughter is doing now! Good for you for pushing the issue and getting her the help she needed!

 

Rachel

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Dave - I think I was sitting at your table that night as well - right next to you and your wife if I remember correctly. I was picking everyone's brains about doctors as well and we had an appt with Dr. L that following week for my son. If I'm correct...I remember your story very well and am so happy to hear how well your daughter is doing now! Good for you for pushing the issue and getting her the help she needed!

 

Rachel

 

Rachel from Texas I believe? Thanks for your recommendation too for Dr. L !

 

My wife Sarah and I have mostly been afraid about the Anorexia which is a near miracle recovery. I think it's about time for everyone who has sick kids to get the kind of treatment they need from their local doctors. It's a scandal you have to travel so far for treatment when it's so easy to administer. We aren't talking about millions of kids here, just thousands. Dr.s are brainwashed into not prescribing prophylactic antibiotics these days. It's a travesty that will be changing soon.

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Dr. L also reiterated that the cat is out of the bag on Strep and OCD. She said that doctors all over the world should be diagnosing PANDAS soon and administering steroid bursts, Augmentin XR, and IVIG where warranted. Methinks someone should get in touch with Augmentin XR drug company and have them do a major marketing push for this drug as a treatment for OCD.

 

 

Sooooo Happy for your dd and your family!!!

 

Thank you for posting how she summed up your visit on your dd particularly and the little tid bit above..

i just bawled my eyes out for 15 minutes....happiness and anger out of the 7 years i've been fighting this off and on....

Not to be semantical...do you think that statement was meant to include tics...you may not know...just asking as mom of a ticcer

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I am so happy to hear things are still going well! Wouldn't it be lovely when we don't have to walk into a doctor's office ready for a fight or defend ourselves?

 

Personally, I would give a probiotic. Not only will it help with yeast overgrowth but it also helps with the immune system.

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Vickie, any suggestions on a probiotic?

 

I am so happy to hear things are still going well! Wouldn't it be lovely when we don't have to walk into a doctor's office ready for a fight or defend ourselves?

 

Personally, I would give a probiotic. Not only will it help with yeast overgrowth but it also helps with the immune system.

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Fixit, thanks for the well wishes. Blake had some weird facial tics before treatment. I am a man and somehow men are less observant than women at facial tics. Dr. L told me she is one of the top experts on reading facial tics. What that means overall I don't know, but in our case she said that she watched my daughter for an hour and a half and diagnosed PANDAS with 100 percent certainty with that being a major factor. Sudden onset to the day, sore throat right before, titers out of whack, handrwriting going completely screwball... She said it wasn't even a close case. She also judges facial expressions and reactions in parents. She says she is getting good enough to make the diagnosis almost immediately just from reading the agony of the mother.

 

Blake is essentially "cured" according to Dr. L. Tics are at zero. Finger movements at zero. Smile on the newly filled out little face. Good mood. It's almost a miracle.

 

 

Dr. L also reiterated that the cat is out of the bag on Strep and OCD. She said that doctors all over the world should be diagnosing PANDAS soon and administering steroid bursts, Augmentin XR, and IVIG where warranted. Methinks someone should get in touch with Augmentin XR drug company and have them do a major marketing push for this drug as a treatment for OCD.

 

 

Sooooo Happy for your dd and your family!!!

 

Thank you for posting how she summed up your visit on your dd particularly and the little tid bit above..

i just bawled my eyes out for 15 minutes....happiness and anger out of the 7 years i've been fighting this off and on....

Not to be semantical...do you think that statement was meant to include tics...you may not know...just asking as mom of a ticcer

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I am so happy to hear your wonderful news! Congratulations.

 

Am I correct in remembering that it was a month of prednisone that your daughter took (in addition to the antibioitics)?

 

I agree with Vicki, that you should still give a probiotic.

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Thanks for responding.

Ds would also have complete remission in the past with a 10 day cours of abx...oh those were the days...(As no one believed in pandas, just that he happened to have strep and the tics {only present while haveing strep} were a coincidence)

 

Please give your dd probiotics...they are good for you anyway...

my ds has issues from the MANY rounds of abx ..

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