Who is a Doctor and what do you know about PANDAS?

pmclaine

Gunny Sergeant
Nov 6, 2011
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#52
Probably the worst snap decision ever and we almost did some real harm.

Went to Childrens in Boston as they have the blood work and we hoped to expedite the findings and in a best case outcome we would start some sort of antibiotic regimen now rather than 24 hours later.

When we were taken in and we explained what we thought was going on the nurse looked at us like a Stepford wife questioning "PANDAS?"

Okay I thought this was going to have to take some education. I know the medical community is divided about its diagnoses but talking around town here it seems like everyone knows someone that has a kid that had a reaction in behavior after a bout of strep.

How hard could this be?

Another Doc came to see us and second time we got "PANDAS?" as a reaction.

We know there is a specialist that researches it as Mass General so I used my wifes phone for a Google search to see which doctor at Childrens specializes in the strep issue. Enter "Childrens Hospital PANDAS".

This is what we came up with....

https://www.facebook.com/permalink.php?story_fbid=309934382447755&id=116317855073374

http://www.panslife.com/pans-life-j...pital-pulls-the-rug-out-from-pandas-pare.html

https://latitudes.org/forums/topic/19774-more-trouble-at-boston-childrens/

https://www.americaninno.com/boston...-hopsital-custody-battle-pandas-pans-disease/

https://www.huffingtonpost.com/entr...had-the-pelletier_us_5862bce3e4b014e7c72ede52

Its obvious Childrens knows exactly what PANDAS is. I remember the last case with Justina Pelletier and that was a mess.

From that point on I felt like we were in custody. My wife wanted to just leave but I think had we tried we would have had trouble. I remember the Pelletier case and thought it pretty fucked up at the time.

Bad mistake on our part. I thought that place was world class.

All I see is evil there now.

My daughter was diagnosed there but we took her out and put her in Joslin for her diabetes care because it didnt seem it was all it could be. I didnt think further than Joslin should be better as thats all they do but now........
 
Last edited:
Apr 26, 2013
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#54
Jesus... Shit like that is why I don't go to hospitals unless I'm pretty sure I'm gonna die if I don't.

Also why I don't like this 'mental health' shit they're trying to move on for 2a revocation. After that, your whole family my be 'mentally unfit to own'.
 

pmclaine

Gunny Sergeant
Nov 6, 2011
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#55
Pediatrician was very responsive today.

No resistance to RX antibiotics.

21 days 15 ml Amoxicillin 2X/day

5 weeks 5 ml Amoxicillin 1X/day

And lots of yogurt/vegetables.
 

pmclaine

Gunny Sergeant
Nov 6, 2011
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#57
Strep titer was 70. That's not a high number but does evidence antigens. I'm guessing we all have some level present. For PANDAS diagnoses with no other strep factors I believe the number of titers has to be much higher. My sons documented recent strep history though outweighed the blood test results.

Lyme was inconclusive requiring a second test in two weeks. Either way the antibiotics will help.

Thyroid was fine.

I'm hoping that because the PANDAS was present prior to tonsillectomy and adenoid removal the real cure was the surgery and we were already scheduled for a recovery in due time but now the antibiotics will expedite that process.

I won't feel clear of the fear though until he loses his fears.

I went into his school this morning and explained to the nurse what is going on. She has been great, actually sending an email about PANDAS at about the moment we were learning from someone else of the issue.

Anyway I explained to her and the Principle what's going on, asked that they speak with his teacher and ask her to provide me as much school work as possible so we can keep him up to speed.

Of course the education got dropped so when after returning from the pediatricians office my son and I were down the ball field and I was pitching him batting practice, the teacher who happened to be down there with my daughter running a track program said to my daughter, "Oh he is well enough to play baseball but he can't come to school?"

I have to work tomorrow otherwise I'd be at the school at 0800 but in my absence there is a message on the nurses phone, spoken with strong direct language that the teacher better be educated because if she makes another ignorant comment she will be in front of the school board explaining why she is making fun of sick kids.
 
May 20, 2006
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Winnipeg, Mb.
#59
Nothing pisses me off more than being marginalized. Tell that teacher to suck a fat dick
I have to work tomorrow otherwise I'd be at the school at 0800 but in my absence there is a message on the nurses phone, spoken with strong direct language that the teacher better be educated because if she makes another ignorant comment she will be in front of the school board explaining why she is making fun of sick kids.
Casually remind her that there are constant sales being advertised all around the city for dentures. And good on 'ya for standing up for your son. Way up!
 

pmclaine

Gunny Sergeant
Nov 6, 2011
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#60
My son was helping his Mimi clean out after Papou's passing and they found his old brass EGA from his dress blues.

Yesterday Mimi brought it over and wanted it shined up. She wants to keep it so son was given the task with Never Dull and some brass polish.

I decided an EGA needs a cover. First one I have built since I left in November of 90.

P4097877.JPG

Daughter wanted in too.

P4097878.JPG

He didnt do a bad job shining the brass.

The cover is a mess though almost 30 years in the attic has crazed the patent leather brim and the chin strap is crumbling.

The vinyl cover was one of my inspection ones, still in a bag priced at $10.45.

Mimi will be happy
 
Likes: Redmanss

pmclaine

Gunny Sergeant
Nov 6, 2011
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#61
New consultation today with a psych and the tonsil surgeon.

Psych thinks we are on the right path pursuing med solution and offered that once the immune system is under control it may be helpful to speak with him about transitioning back into school.

Surgeon said affected areas are healing well and changed our meds from Amoxicillin to Cephlexin 10 Ml 2X/day for ten days with another consult when antibiotics are done.

I like the switch to a med his body isn't used to but the duration seems short based on what I have been reading.

From all the experiences of others that are familiar with this we caught this real early and are fortunate our docs are receptive to the PANDAS diagnoses rather than pursuing psychological only.

Watch your kids with strep. I'm learning a tic or symptom can be common after a bout but if it persists or becomes life altering get help and consider a medical option even if you are being told the problem is psych.
 

pmclaine

Gunny Sergeant
Nov 6, 2011
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#62
Made it to school today, first time in five weeks, and dressed for his baseball game and played.

Pretty impressed with him because before both he is saying shit like "If I go to school I'm going to die" and "I can't play ball because if I get hit by a pitch it will kill me."

With his anxiety he actually absolutely believes these thoughts to be true no matter how much we try to convince him otherwise.

Still....

Believing this he got in uniform and played his game. Before he got up to bat he told the coach he was worried and felt "tingly".

But he got in the box and did it.

Took two good swings on pitches that were strikes and held on three balls. He looked at the third strike but He stayed in the box even though he was certain he was going to die. That's pretty ballsy.

Coach gave him the game ball because he knows what he is going through.

He is pretty pumped right now and I hope it will start to rebuild him. I think the antibiotics and Aleve still have their work to do but I think we are on a good trajectory considering the course of other stories we have become familiar with.
 

pmclaine

Gunny Sergeant
Nov 6, 2011
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#64
My son said something today that made me think this thread worth an update. He stopped going to school shortly after my last post and kind of fell in to a dark place but today.....

He said "Dad Im not scared any more"

Brave words.

About 12 days ago we were in MA General and had a meeting with a great Doctor. We have really been fortunate with this PANDAS issue;

A) Having someone send us a link regarding a celebrity that had a kid with strep induced anxiety to give us the knowledge to ask
B) A Pediatrician that we assume had some knowledge and was willing to investigate
C) We were scheduled to have tonsils and adenoids removed prior to the sudden onset of the syndrome
D) The ENT surgeon was able to get us in the door with the greatest infectious diseases doctor educated in this issue in the area, typically a two year wait.
E) My son had the balls to take all the medicines he was asked to and participate in counseling to provide him tools to overcome his mind

The PMs and answers I got here, though asking on this forum may seem weird, was very helpful. Group knowledge will come to center and point out the right answer. Sure you get outliers and whatever but the conventional wisdom/experience will eventually steer true.

I think our answer was adding Prednisone we were perscribed 12 days ago to his azithromycin meds. He has two days left and is cycling down, my fear is a relapse when he comes off them but if that's the case we know what to do. Prednisone has its own issues though and fortunately we have only seen the good in it.

He had a few blow ups over the last two weeks. Grabbing a knife from the drawer threatening to kill himself in front of his younger sister and Mimi if they left the house or made him accompany them to my daughters soccer practice. My wife and I were in a meeting with the behavioral therapist while that unraveled.

His last blow up though I knew he would be okay when he screamed out "My life is worse than sucking dicks" and I asked him "When have you ever sucked dicks?" and he laughed.

Im thinking my neighbors may have been wondering whats going on here the last few weeks based on some of the shit they have heard my eleven year old yelling when he was out of his mind.

Yesterday and today he walked to school with his friends. Yesterday it was with me as a shadow. Today all alone. His class had a field trip to a local lake and he had me meet at the school to walk to the lake with them, he wouldn't do it on his own. I told him yes but its expected that once he realizes he is safe at the lake, I leave. I was down there for about 15 minutes and he agreed I could go. Good to be told to screw by your kid in this case.

Monday is his last day of school. He is expected to walk and spend the day at school with no parent participation. He will be given money to spend and has been told to get his friends to go with him down to the local business area and have pizza. he has added a trip to the local candy store and Dunkin Donuts for more crap food. He will do it. He is looking forward to it and has 6-7 friends going with him.

His friends are good kids, too good. I think they are a lot less street wise than I was in 5th grade. That innocence has served him well as his friends that know what has been going on haven't treated his anxiety as a point of ridicule ("Whats a matter are you scared? Do you nmeed your Mommy with you?") but they have actually come to his aid for instance me debating with him to go into his class room while I sit in the hall - he adamant I have to be in the room - his buddy came out put his arm around him and said "I heard you were out here lets go in the class" and ended the debate getting him into the room.

I imagine we will have some issues particularly if he gets exposed to anything over the next few weeks and gets his immune system revved up but right now we are sitting better than many. I have a coworker with a daughter that hasn't been to school in a year. I had no idea he was dealing with this until my boss asked me if he could tell another what we were going through because he thought we needed to talk. Good to go, again Im lucky. My wife an I have good jobs that supported us through this.

Keep this in mind. I dont know how many people have something like this in their family but due to differing opinions in the med field may not get proper treatment. Not every anxiety is PANDAS nor is infection the blame for every psychological problem but if you know a kid that has an overnight/light switch change in behavior ask some questions.
 

Maggot

Philo-Sophia Fidelis et veritas
Jul 27, 2007
6,693
837
113
Charlottesville, Virginia
#65
My son said something today that made me think this thread worth an update. He stopped going to school shortly after my last post and kind of fell in to a dark place but today.....

He said "Dad Im not scared any more"

Brave words.

About 12 days ago we were in MA General and had a meeting with a great Doctor. We have really been fortunate with this PANDAS issue;

A) Having someone send us a link regarding a celebrity that had a kid with strep induced anxiety to give us the knowledge to ask
B) A Pediatrician that we assume had some knowledge and was willing to investigate
C) We were scheduled to have tonsils and adenoids removed prior to the sudden onset of the syndrome
D) The ENT surgeon was able to get us in the door with the greatest infectious diseases doctor educated in this issue in the area, typically a two year wait.
E) My son had the balls to take all the medicines he was asked to and participate in counseling to provide him tools to overcome his mind

The PMs and answers I got here, though asking on this forum may seem weird, was very helpful. Group knowledge will come to center and point out the right answer. Sure you get outliers and whatever but the conventional wisdom/experience will eventually steer true.

I think our answer was adding Prednisone we were perscribed 12 days ago to his azithromycin meds. He has two days left and is cycling down, my fear is a relapse when he comes off them but if that's the case we know what to do. Prednisone has its own issues though and fortunately we have only seen the good in it.

He had a few blow ups over the last two weeks. Grabbing a knife from the drawer threatening to kill himself in front of his younger sister and Mimi if they left the house or made him accompany them to my daughters soccer practice. My wife and I were in a meeting with the behavioral therapist while that unraveled.

His last blow up though I knew he would be okay when he screamed out "My life is worse than sucking dicks" and I asked him "When have you ever sucked dicks?" and he laughed.

Im thinking my neighbors may have been wondering whats going on here the last few weeks based on some of the shit they have heard my eleven year old yelling when he was out of his mind.

Yesterday and today he walked to school with his friends. Yesterday it was with me as a shadow. Today all alone. His class had a field trip to a local lake and he had me meet at the school to walk to the lake with them, he wouldn't do it on his own. I told him yes but its expected that once he realizes he is safe at the lake, I leave. I was down there for about 15 minutes and he agreed I could go. Good to be told to screw by your kid in this case.

Monday is his last day of school. He is expected to walk and spend the day at school with no parent participation. He will be given money to spend and has been told to get his friends to go with him down to the local business area and have pizza. he has added a trip to the local candy store and Dunkin Donuts for more crap food. He will do it. He is looking forward to it and has 6-7 friends going with him.

His friends are good kids, too good. I think they are a lot less street wise than I was in 5th grade. That innocence has served him well as his friends that know what has been going on haven't treated his anxiety as a point of ridicule ("Whats a matter are you scared? Do you nmeed your Mommy with you?") but they have actually come to his aid for instance me debating with him to go into his class room while I sit in the hall - he adamant I have to be in the room - his buddy came out put his arm around him and said "I heard you were out here lets go in the class" and ended the debate getting him into the room.

I imagine we will have some issues particularly if he gets exposed to anything over the next few weeks and gets his immune system revved up but right now we are sitting better than many. I have a coworker with a daughter that hasn't been to school in a year. I had no idea he was dealing with this until my boss asked me if he could tell another what we were going through because he thought we needed to talk. Good to go, again Im lucky. My wife an I have good jobs that supported us through this.

Keep this in mind. I dont know how many people have something like this in their family but due to differing opinions in the med field may not get proper treatment. Not every anxiety is PANDAS nor is infection the blame for every psychological problem but if you know a kid that has an overnight/light switch change in behavior ask some questions.
Brother, I couldnt get past "Dad, Im not scared anymore." Fucking dust ....Despite my messing with you in the other thread, Bless your son and family. Prayers and good thoughts sent ya'lls way.
 
Feb 11, 2017
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#66
Good point.

Bullying was one of the first avenues we considered as well the darker path of child predation.

Nothing's ruled out yet but reasonably good confidence we aren't there.

He played all day with a friend and just had a great baseball practice. He hit really well which boosted his confidence.

Asst coach had to keep telling him to stop looking behind while in the box though. That coach isn't aware of what's going on and he didn't realize he was looking at me to make sure I was still there.
As a baseball coach I can only pray for you and your son! Back to baseball. Make sure you do nothing but be positive and smile at him good or bad! It's a game of failure and it's ok long as there trying there best! Keep it fun! Not saying your not doing these things but far too many parents and coaches put way too much stress on these kids! Wishing you and your son the best!
 

pmclaine

Gunny Sergeant
Nov 6, 2011
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MA
#67
As a baseball coach I can only pray for you and your son! Back to baseball. Make sure you do nothing but be positive and smile at him good or bad! It's a game of failure and it's ok long as there trying there best! Keep it fun! Not saying your not doing these things but far too many parents and coaches put way too much stress on these kids! Wishing you and your son the best!
Thank you for your thoughts.

I try to teach him baseball is a team sport where the flow of the game is determined by individuals. Everything done is done by one person in the moment - you catch the ball, you swing the bat, you pitch the pitch - but its all individual effort creating a team result. That is why it is like America.

Unfortunately soccer is a cancer in my town. Kids want that constant action in the digital age and the down time in baseball waiting for the turn to hit or hoping for a ball to be hit to you fails to capture these kids.

My son did well this year despite what he was going through. We had to be careful not to wear him out on game days. This shit would wear him out if he had to much activity and he would be "too exhausted" to play.

He has complained of joint pain and the fatigue had us thinking Lyme but one non conclusive western blot followed by a negative indicates otherwise. I know there are other tests but the guy that "discovered" Lyme works at MGH and my sons doctor works closely with him. The Lyme "discoverer" has 100 percent faith in Western blot. There is that and also azithromycin will work on Lyme so Im hoping all bets are covered.

Anyway it was as good a baseball year as could be had under circumstances. He has a great coach and will be with most of the same kids next year as a "veteran" hopefully with the cockiness he lost in March.
 
Feb 11, 2017
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#68
Thank you for your thoughts.

I try to teach him baseball is a team sport where the flow of the game is determined by individuals. Everything done is done by one person in the moment - you catch the ball, you swing the bat, you pitch the pitch - but its all individual effort creating a team result. That is why it is like America.

Unfortunately soccer is a cancer in my town. Kids want that constant action in the digital age and the down time in baseball waiting for the turn to hit or hoping for a ball to be hit to you fails to capture these kids.

My son did well this year despite what he was going through. We had to be careful not to wear him out on game days. This shit would wear him out if he had to much activity and he would be "too exhausted" to play.

He has complained of joint pain and the fatigue had us thinking Lyme but one non conclusive western blot followed by a negative indicates otherwise. I know there are other tests but the guy that "discovered" Lyme works at MGH and my sons doctor works closely with him. The Lyme "discoverer" has 100 percent faith in Western blot. There is that and also azithromycin will work on Lyme so Im hoping all bets are covered.

Anyway it was as good a baseball year as could be had under circumstances. He has a great coach and will be with most of the same kids next year as a "veteran" hopefully with the cockiness he lost in March.
Praying for y'all brother!
 
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