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Lauren Johnson Update-Our (abbreviated) story..

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My apologies for the “sabbatical” from the forum as I’m sure most of you can understand the last six months for our family has been a roller-coaster ride and we felt it necessary, to allow our family peace and time to heal after Lauren’s success with her IVIG treatment in late February. For what it’s worth I have finally found a moment to tell “our” story-a story that the media is not allowed to edit.

 

When did PANDAS first affect our family? Is anyone really sure? At a very young 22 months of age, Lauren had strep with the trunk rash (scarlatina/SF) and Mycroplasma at age 5-1/2. Right after the Mycroplasma Pneumonia she had this “unexplained” urinary frequency for months, where she would tell me she had to go to the bathroom EVERY 5 minutes (no exaggeration), but had no UTI or bladder infection. Lauren also has had anxiety issues forever since as long as we can remember. She was medically diagnosed with social anxiety at age 5 (participated in a anxiety study in Boston at the time), had a 504 established at her school in first grade (around the time of the URI frequency and the micro-p) because she went 6 months in the school lunchroom without eating because of anxiety. All of these “signs” were excused until Lauren started the non-stop sneezing on November 1st, 2009. Looking back, all the signs are right there but we didn’t have a clue until November 2009 what we were looking for. The media exposure surrounding Lauren’s story definitely helped raise awareness in general for PANDAS. People all over the world wanted to know why the little girl could not stop sneezing. It was an oddity. We just wanted to understand what was wrong with our daughter and wanted her to be well. Dr. Nancy Snyderman helped put us in touch with Dr. Leckman at Yale University. Being well versed in TS, Dr. Leckman did not feel like Lauren fit into the “Tourettes box” we explored TS as a possibility as we were better understanding PANDAS and following that path as it became clearer to us that this was what was inflicting our daughter. It was about this time (mid November) we found this forum. Dr. T quickly reached out to us via email reinforcing what we already knew, deep in our hearts, that he believed Lauren had PANDAS. We decided, just a week before Thanksgiving, while Lauren was sneezing every other breath, to start Lauren on abx (azith 250mg). On day six of this abx treatment we doubled Lauren’s azith to 500mg a day and within 6 hours of increasing her abx her sneezing tic decreased in half! She went from sneezing 20-25x a minute to sneezing 10-12x a minute.

 

We went to see Dr. T the day before Thanksgiving, 2009. He suggested we try a 5 day steroid burst to see if Lauren would show more improvement and suggested we keep her abx dose at 500 mg. From mid Nov. to mid Dec, 2009, we were also in the midst of running lab work, and a battery of tests including and EEG, MRI, and cat scans, etc. to rule out any other conditions that might be playing a role in this mystery. During the Thanksgiving holiday the steroid burst proved successful as Lauren began having her first “pauses” between sneezing. We saw 3-4 minute pauses when the steroid decreased the inflammation on her brain. Unfortunately, soon after the steroid burst ended, so did her pauses. This was to be expected as the steroid burst is only a diagnostic tool.

 

As we started to see the results from Lauren’s lab work we noticed that Lauren’s IGg levels were dropping and she had fallen into the abnormal range. She had become immune compromised. This led me to search out an Immunologist to help address the immune issues we were facing. This path led me to Dr. Bouboulis. I will never forget our first phone conversation. It was the beginning of what is now a treasured friendship. He is a confidant and my partner in an organization aimed at helping countless children and their families navigating this disease.

 

Dr. Bouboulis is a brilliant doctor who quickly tested our family’s aso/antiDnase titers to discover that even though Lauren never had shown a rise in her strep titers our entire family tested positive for strep. We have spent months on abx trying to eradicate the strep but unfortunately we are still trying to win this battle as my youngest daughter Audrey has had 4 separate rises in her strep titers/exposure over the last 5 months-UUGH! We have gone through great lengths (and many different abx) to try to eliminate the strep/break the carrier state in Audrey and our anxiously waiting to see if we succeeded recently. We re-test her titers again, next Monday.

 

Dr. Bouboulis also treated Lauren with a 30 day tapered steroid to decrease inflammation in her sinus’ (where he suspected strep was harboring) and switched her the Augmentin during this same time period to see if she would show more improvement on a different antibiotic. We started the steroids on December 23rd and on Christmas Eve Lauren had 20 minute pauses between her sneezing that did not remain as we tapered her steroid over the next few weeks. It was after getting Lauren to a point where here symptoms were substantial improved but not fully eradicated and after seeing a positive response to the steroid, twice but not sustaining that improvement that we decided, with Dr. Bouboulis to do Lauren’s first IVIG treatment on February 17th. Lauren did well during this treatment with minor side effects and on day two of the treatment we watched in amazement as her sneezing diminished to almost nothing over the course of the second day of treatment. When Lauren woke up on Friday, February 19th she was “sneeze free” for the first time in over 14 weeks!

 

Prior to Lauren's success with IVIG I hadn't slept in my own bed (without her climbing in with me) for months and I could not even go to the bathroom without her standing over me. I believe she had some improvement with the anxiety due to the steroids/abx, as far as the anxiety is concerned, (back before abx, 3 months ago, she would literally attach to my body, like a leech, 24 hours a day, she had to be "touching me" at all times) it has not eliminated her anxiety but lessened it, for sure. Six days post Lauren’s first IVIG she had a return of a rapid eye blinking tic that we previously had witnessed only a half dozen between 11/1/09 and her ivig treatment on 2/17/10. Her eyes went “crazy” with this machine gun type of rapid blinking. Her eyes dried out from the excessive movement to the point we had to add a lubricant. The next day she suffered from a 20 second catatonic state. It was scary but we knew this was part of the healing process where you don’t know exactly what to expect. I will tell you over the course of the next few the blinking lessened to a point where it was very infrequent but we knew it was still there. It was this blinking tic that was still not completely unresolved that led us to the decision to repeat Lauren’s IVIG again, just last week, eight weeks after her first treatment. We are now day five post-second-ivig treatment and all is well. She still has the infrequent blink. We are hoping the second treatment resolves this completely.

 

Only time will tell.

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Thank you for the update. I'm glad the sneezing tic is resolved. I hope, like you said, the second IVIG resolves everything else. Keep up posted!You're doing a great job.

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Thank you for the update. I'm glad the sneezing tic is resolved. I hope, like you said, the second IVIG resolves everything else. Keep up posted!You're doing a great job.

 

 

So Glad to hear weve been following your case

 

We also do IVIG for ID what is the dosage dr B used

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Hi Melanie,

 

1.5g/k over two days both times! We added iv fluids to the second ivig treatment which greatly reduced her side effects (extreme headache, body aches) but she did end up getting the headaches/body aches on day 1-2 post ivig (second treatment). Easily resolved with some predisone/tylenol/benedryl. The more you can keep them hydrated it seems the better they do!

 

Good luck and keep us posted!

 

Lynn

 

Thank you for the update. I'm glad the sneezing tic is resolved. I hope, like you said, the second IVIG resolves everything else. Keep up posted!You're doing a great job.

 

 

So Glad to hear weve been following your case

 

We also do IVIG for ID what is the dosage dr B used

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Hi Tracie,

 

yes, they "talk". One of Dr. Bouboulis' main objectives with the PANDAS Resource Network is to "bring doctors together" and raise more awareness in the medical field. Many, many doctors have contacted us (some who have been treating PANDAS for some time, some who are just beginning to embrace/treat PANDAS). How exciting and hopeful! There is also plans for a meeting this summer where many of these doctors are trying to get together. Keep your fingers crossed.

 

Lynn

 

Just a quick question??

Does Dr K and Dr B talk about PANDAS and IVIG?

I would love to see all of the doc get together and talk

Tracie

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Lynn,

 

Can you elaborate on the "20 second catatonic state" Lauren exhibited? Had she done this before?

 

My dd10 has done these zoned-out, trance-like, starring spells since she was 5. She's had 2 negative EEGs to r/o seizures and a couple docs have said it was a compulsion.

 

thanks-jill

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Nice update. We too are waiting for IVIG with Dr. B. We are in the insurance dance waiting for approval (already has been 3 weeks!).

Here's to continued improvement.

 

Ellie

memom

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I spoke to soon :blink:

 

Her eyes are going crazy as we speak. At exactly the same time they started post ivig #1, almost to the hour! How strange is that? I'm not to concerned as we saw it self resolve, for the most part, the last time. Though scary to witness..

 

Great news! Welcome back and glad to hear your news -- interesting about the eye blinking and glad to hear that has also resolved. Yeah!

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Thanks for the update. It is very encouraging and reinforces our decision to go ahead with IVIG. We are going mid may for first IVIG after suffering with this horrible illness for 6 1/2 years. Good luck with continued success and it must feel so wonderful to have your daughter back. Please keep us posted.

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