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laurenjohnsonsmom

Lauren Johnson Update-Our (abbreviated) story..

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I'm so happy to read this update! I'm sorry her eye tics are back, but hopefully just for a short time. We haven't done IVIG so I have no experience with it, but it must be a scary time, wondering what's to come next. Come to think of it, that's not so unfamiliar, even without IVIG! LOL

 

It is SO interesting to me that what appeared at first to be a "sudden onset" case turns out, in actuality, to have much deeper roots. I think this is so true about so many PANDAS kids. There may be one instance that sparks a big response and then a diagnosis (or search for a diagnosis) but when you look back there were subtle signs and symptoms from much earlier. Definitely true in our case!

 

Hoping Lauren continues to mend and improve.... btw, love her name - my daughter's name is Lauren as well!

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Let's hope it's just turning back the pages and a bump in recovery. Look back at the day and make sure there was nothing that could have triggered it (food, stress, chlorine, anything)Does Ibuprofen help?

 

 

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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We are seeing continued healing week 9 to 14 post IVIG. Hang in there as it should resolve.

 

-Wendy

 

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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I'm so happy to read this update! I'm sorry her eye tics are back, but hopefully just for a short time. We haven't done IVIG so I have no experience with it, but it must be a scary time, wondering what's to come next. Come to think of it, that's not so unfamiliar, even without IVIG! LOL

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Wow, I have been wondering about Lauren too. I am SO happy to hear that the IVIG provided direct, clear relief.

This is good for all PANDAS patients! You have done a lot for PANDAS and I hope you feel good about that.

 

Say what you want about the media, but here they saw a good story (girl suddenly sneezing) and did their job-- and now the IVIG protocol has stopped the tic! No one can deny that it's real!

 

My son is also getting IVIG through Dr. B, and though I am personally an atheist I feel an urge to say, "bless him."

 

The first IVIG, lower dose at 1.0 mg per kg, made him definitely worse.

The second IVIG, 1.5 mg but all in one day... I am not sure.

The third IVIG, 1.5 mg over two days... I think he is finally finally really getting better.

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I spoke to soon ;)

 

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..

 

hello melanie

I am very sorry that Lauren is experiencing this problem with eyes. the doctors think it is a transitory effect of IVIG?

Edited by marilina

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Well Lauren's rapid eyeblink seems to have calmed down. Not gone but back to a very infrequent tic. It seems as though Lauren's use of the computer is the "common denominator" in both occasions. It's just a hunch that it has something to do with everything. I still find it fascinating that she developed this same increase, to the day, post ivig #2 as she did post ivig #1.

 

I very much appreciate all if your kind words of support. I really want to remain active on thus forum but never enough time in the day. My husband is off floating around the east coast shore on an aircraft carrier (nucleur engineer) for the next 4-5months and The PANDAS Resource Network is getting about 30 new emails/contacts a day. Can't seem to get it all done! I can't believe how many are out there suffering, all over the world.

 

Good luck, Buster, trying to put a number to it. I'm easily estimating 3/4-million but what do I know! :)

 

I'm just so thankful to god (and Lauren doctors and all of you on the forum) that Lauren is, for the most part, functional. I truly believe god knows I can't do everything I have taken on while having her really sick at the same time. They say, "what doesn't kill you only makes you stronger". I guess that makes us all heavyweights! I don't know about you but I feel I have had many "attempts made at my life" during this PANDAS battle!

 

Wishing all of you enough strength to get you ethrough the day.

 

Lynn

 

 

I spoke to soon ;)

 

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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Well Lauren's rapid eyeblink seems to have calmed down. Not gone but back to a very infrequent tic. It seems as though Lauren's use of the computer is the "common denominator" in both occasions. It's just a hunch that it has something to do with everything.

 

so glad to read that the eye tic is settling down now Lynn and continued hopes for daily improvement for Lauren :)

 

I noticed your comment re the computer and wanted to say that we have a number of threads on the TS/tics board here on photosensitive triggered tics. Seems a number of kids react to flicker, flash, fluorescent lighting etc with increased tics, especially eye blinking/rolling etc

 

if you search the terms photosensitive, photosensitivity, screens, and also posts by Claire

 

 

my son has mild photosensitive issues, and we have found this much reduced by only using LCD screens (TV and computer) as well as keeping a "daylight lamp" on to reduce flash and flicker (we avoid the fluorescent ones and use only incandescent)

 

my son also knows that going to the cinema = increased tics, both as a result of the flicker/flash in a darkened room, but also all the other sensory overload stuff with the loud sound, and multiple smells of perfume and cleaners etc. So many kids with neuro stuff also have SID...sensory integration disorder....and photosensitive triggered tics can sometimes be a result of that

 

 

take care of yourself in the midst of all you are having to keep up with!

 

all of the best to you and Lauren :)

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EAMOM,

 

 

AGREED! Dr. B has been treating immune compromised patients with IVIG FOREVER, long before he started trerating PANDAS children a few years back. He's one of the few immunologists that does IVIG. He already had plans of building an IVIG infusion center LONG before he collided with the PANDAS world! Now he just has more reasons to do it-QUICKLY!

 

I would trust him with my life (actually, I have with both my daughters and have no regrets).

 

Our personal battle for our family is far from over and words cannot express how comforting it is to know that as long as this man has warm blood running through his body we know he will ALWAYS be there for our family. He is a briiliant, compasionate, open-minded immunologist addressing the needs of a complex, little-known auto-immune disorder. We are blessed to have him in this fight. We are blessed by all the doctors who are willing to treat our PANDAS children.

 

Lynn

 

 

Hi Lynn,

thanks for the great update. I'm glad Lauren is doing better. We need a Dr. B in CA!

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It is SO interesting to me that what appeared at first to be a "sudden onset" case turns out, in actuality, to have much deeper roots. I think this is so true about so many PANDAS kids. There may be one instance that sparks a big response and then a diagnosis (or search for a diagnosis) but when you look back there were subtle signs and symptoms from much earlier. Definitely true in our case.

 

So true! Being a military family, we moved 9 times in 11 years. Lots of different doctors. Looking back at Lauren's medical history she was sick ALL THE TIME. Chronic strep that would linger, and re-occur over months, with a full body rash starting as early as 22 months. At one point ahe had a full body rash on her trunk/arms/neck that was split, perfectly down one side of her body, completly perplexing the neurologist at the time. Lauren is slightly immune compromised (high-abnormal IgG) so we continue to watch her carefully.

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Hi Vickie,

 

I'm glad to say that Lauren's eye blinking is down to a minimum (barely existent now). Yeah! I do think the computer (even though it is an LCD screen) may have contributed to the trigger. It was scary coincidental that she had the same increase in the same rapid eye blink on the same day (day 5 post ivig #2) as she did after her first IVIG.

 

Does anyone else have a rapid eye blinker? Just curious!

 

Lynn

 

 

Let's hope it's just turning back the pages and a bump in recovery. Look back at the day and make sure there was nothing that could have triggered it (food, stress, chlorine, anything)Does Ibuprofen help?

 

 

I spoke to soon :)

 

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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My son is 10 weeks post IVIG and I took him to see Dr. B yesterday. We had a great visit and Dr. B was encouraged about my son's progress. He said the fact that the improvements continued during the second month after the IVIG was a good sign that we had accomplished what we needed to on the autoimmune side of PANDAS and that he expects further improvement and possibly no more IVIG. I can't say enough about how much I appreciate his approach to learning about and treating PANDAS. Not a frivolous bone in his body as far as I can tell. There was a mom with a boy of about 11 or 12 leaving as we were heading in. We gave eachother that knowing PANDAS look but didn't introduce ourselves. Sorry about that and if you are new to Dr. B, you are in good hands.

 

Alex

 

EAMOM,

 

 

AGREED! Dr. B has been treating immune compromised patients with IVIG FOREVER, long before he started trerating PANDAS children a few years back. He's one of the few immunologists that does IVIG. He already had plans of building an IVIG infusion center LONG before he collided with the PANDAS world! Now he just has more reasons to do it-QUICKLY!

 

I would trust him with my life (actually, I have with both my daughters and have no regrets).

 

Our personal battle for our family is far from over and words cannot express how comforting it is to know that as long as this man has warm blood running through his body we know he will ALWAYS be there for our family. He is a briiliant, compasionate, open-minded immunologist addressing the needs of a complex, little-known auto-immune disorder. We are blessed to have him in this fight. We are blessed by all the doctors who are willing to treat our PANDAS children.

 

Lynn

 

 

Hi Lynn,

thanks for the great update. I'm glad Lauren is doing better. We need a Dr. B in CA!

Edited by Alex

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