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Who is a Doctor and what do you know about PANDAS?
- Thread starter pmclaine
- Start date
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........
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:
Cant help but feel this thread needs to be deleted now like Childrens is already filing paperwork or something.
Fucking country is going to hell.
Fucking country is going to hell.
Q
QuickNDirty
Guest
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.
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.
Nothing pisses me off more than being marginalized. Tell that teacher to suck a fat dick
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!
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.
Daughter wanted in too.
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
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.
Daughter wanted in too.
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
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.
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.
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.
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.
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.
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.
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.
I'm still glad to hear of his improvement. This is a headline today, up here in Canada. I thought you might like to see, that the word is somewhat getting out there.
https://americandigitalnews.com/2018/08/31/oig-semiannual-audit-results/#.W7zDJvlRfcu
Hey @Sean the Nailer
Thanks for checking in. The link brings me to an interesting report but unless I'm missing something it's not PANDAS related.
Son is walking into the house right now from school. We have had a good record of school attendance which is huge.
He started to slide back a little but right now seems to be doing good.
Complains a lot about his stomach hurting or intense joint pain.
I'm guessing his stomach may be bothered by the antibiotics. We pump him up with probiotics trying to help him out.
Don't know if the joint pain is related but I think rheumatism or some sort of immune system attack on his joints is possible. We will take it up with his doctor next visit.
Hope your own family medical issues are going well. We are in a pretty good place right now and hope you can say same
Thanks for checking in. The link brings me to an interesting report but unless I'm missing something it's not PANDAS related.
Son is walking into the house right now from school. We have had a good record of school attendance which is huge.
He started to slide back a little but right now seems to be doing good.
Complains a lot about his stomach hurting or intense joint pain.
I'm guessing his stomach may be bothered by the antibiotics. We pump him up with probiotics trying to help him out.
Don't know if the joint pain is related but I think rheumatism or some sort of immune system attack on his joints is possible. We will take it up with his doctor next visit.
Hope your own family medical issues are going well. We are in a pretty good place right now and hope you can say same
Kiddo got another infection with strep.
Just saw the PANDAs doctor on Friday and checkup went well enough. Son has been attending school and though he has had some anxiety he is fighting it. Still hasnt got his "edge" back that he had prior to this becoming an issue.
Yesterday woke up with sore throat and quick swab indicated strep.
Kind of surprising as he has been on either Azithromycin, Augmentin, Caephlexin or Amoxcycillin steady since spring.
We just rotated from Caephlexin to Azithromycin on Friday but as of yesterday we are back on Caephlexin capsules 3X/day.
Probably look into getting the third tonsil out soon. Whole family has been tested for strep titers and no one seems to be a carrier.
He seems to be hiding the strep somewhere and its got his immune system revved up. Does often complain of stomach aches and joint pain. Makes me keep thinking rheumatic fever, rheumatism stuff on those lines.
Just saw the PANDAs doctor on Friday and checkup went well enough. Son has been attending school and though he has had some anxiety he is fighting it. Still hasnt got his "edge" back that he had prior to this becoming an issue.
Yesterday woke up with sore throat and quick swab indicated strep.
Kind of surprising as he has been on either Azithromycin, Augmentin, Caephlexin or Amoxcycillin steady since spring.
We just rotated from Caephlexin to Azithromycin on Friday but as of yesterday we are back on Caephlexin capsules 3X/day.
Probably look into getting the third tonsil out soon. Whole family has been tested for strep titers and no one seems to be a carrier.
He seems to be hiding the strep somewhere and its got his immune system revved up. Does often complain of stomach aches and joint pain. Makes me keep thinking rheumatic fever, rheumatism stuff on those lines.
well pmclaine, I don't "like" it, but I'm glad you gave us the update.
With that constant influx of antibiotics.... is this something that a "oxygen therapy enclosure thingy" (I forget what they're called) should be looked at?
With that constant influx of antibiotics.... is this something that a "oxygen therapy enclosure thingy" (I forget what they're called) should be looked at?
Geez. I hope you guys find some answers. Makes me wonder if some issues I had early on was due to this. Hmmm...
Hold the line Brother!you both have done all you could and got him in front of good DRs who learned to use both ears with a closed mouth for a child’s history. A very very important history. Blessings for a good outcome with no regressions.
I’m gonna add my two cents and claim to be no doctor but with a positive strep test and a gum infection after all the different antibiotics Iwould ask about an IVIG to try to jumpstart his immune system. Hopefully it gets his body going to help fight these infections. It takes a while to drip it in and being patient while it goes in takes practice. I hope this is solved quick and painless. The trends are upward for y’all I hope as I watch for more updates.
Thanks for asking.
We are in the midst of another set back/flare.
My son has been going to school steadily since September (even after an unexpected October strep infection) but in this past week started showing some signs of anxiety, won't go upstairs alone, yesterday he refused school.
We are back on Prednisone as an add to the daily Aleve, Azithromycin, vitamin D and probiotics.
Tough thing is trying to differentiate what is just typical 11 year old boy and what can be attributed to PANDAs. Requiring that his mother and I accompany him to the head in public places or thinking he will be killed by a baseball pitch if he plays ball is PANDAs while throwing a nutty if we take his XBox away is probably eleven year old boy., PANDAs just exacerbates that level of nutty.
A lot of his symptoms are behaviors I'm inclined to be of the personality to say "Get over it!" but I have to stop myself from doing that, There is no getting over it until his immune system stops punching the panic button in his amygdala. He cant explain or understand his fear "it just is". His amygdala lizard brain is getting its fight or flight button pressed as his immune system tries to track down strep.
To a small extent we are lucky that his PANDAs is primarily anxiety. Some kids get hit in the basal ganglia and they exhibit severe OCD or tics. If you see PANDAs in the media its usually these kids that get the attention because their symptoms are so visible and debilitating. The only tic my son has shown is a heavy sigh he repeatedly exhibits when this shit is flaring up. Other kids get severe OCD and develop "rituals" that can make the family shut ins.
Id be inclined to dismiss this as "crazy" if it hadn't happened so suddenly. As if someone had hit a light switch he went from independent to consumed by fear. We can almost pinpoint it to the day. One weekend he went alone to a birthday party with friends and had a great time. One weekend later when my wife drove him to a birthday party for another kid with all the same friends attending he refused to leave her car became way overboard emotional and refused to attend. His friends were present to see the breakdown and he didn't give a shit of the scene he was making - his fear over rode any concern about his behavior.
Anyone concerned about this think about the two parts - an infection, strep is typical and it can be enhanced by other infections such as flu or perhaps lyme that get the immune system spun up to max power. The second part is the sudden onset. If things change markedly in a short period of time perhaps there is a medical reason rather than a psychological cause.
Apparently, and I found out for certain, the med community strongly debates the existence of PANDAs. We have been lucky to have docs that are open to the idea and I think our pediatrician started considering it before my wife and I knew what it was. After that we lucked in to getting on board with a great specialist care provider that I have full confidence in. I get the feeling he doesn't understand it all and we are "research" as much as patients but the guy has been responsive and open to our participation and exploration in treating our son. Its what anyone could want in a doc as we feel part of a care "team" rather than lab rats that should be prodded and poked in silence.
We are in the midst of another set back/flare.
My son has been going to school steadily since September (even after an unexpected October strep infection) but in this past week started showing some signs of anxiety, won't go upstairs alone, yesterday he refused school.
We are back on Prednisone as an add to the daily Aleve, Azithromycin, vitamin D and probiotics.
Tough thing is trying to differentiate what is just typical 11 year old boy and what can be attributed to PANDAs. Requiring that his mother and I accompany him to the head in public places or thinking he will be killed by a baseball pitch if he plays ball is PANDAs while throwing a nutty if we take his XBox away is probably eleven year old boy., PANDAs just exacerbates that level of nutty.
A lot of his symptoms are behaviors I'm inclined to be of the personality to say "Get over it!" but I have to stop myself from doing that, There is no getting over it until his immune system stops punching the panic button in his amygdala. He cant explain or understand his fear "it just is". His amygdala lizard brain is getting its fight or flight button pressed as his immune system tries to track down strep.
To a small extent we are lucky that his PANDAs is primarily anxiety. Some kids get hit in the basal ganglia and they exhibit severe OCD or tics. If you see PANDAs in the media its usually these kids that get the attention because their symptoms are so visible and debilitating. The only tic my son has shown is a heavy sigh he repeatedly exhibits when this shit is flaring up. Other kids get severe OCD and develop "rituals" that can make the family shut ins.
Id be inclined to dismiss this as "crazy" if it hadn't happened so suddenly. As if someone had hit a light switch he went from independent to consumed by fear. We can almost pinpoint it to the day. One weekend he went alone to a birthday party with friends and had a great time. One weekend later when my wife drove him to a birthday party for another kid with all the same friends attending he refused to leave her car became way overboard emotional and refused to attend. His friends were present to see the breakdown and he didn't give a shit of the scene he was making - his fear over rode any concern about his behavior.
Anyone concerned about this think about the two parts - an infection, strep is typical and it can be enhanced by other infections such as flu or perhaps lyme that get the immune system spun up to max power. The second part is the sudden onset. If things change markedly in a short period of time perhaps there is a medical reason rather than a psychological cause.
Apparently, and I found out for certain, the med community strongly debates the existence of PANDAs. We have been lucky to have docs that are open to the idea and I think our pediatrician started considering it before my wife and I knew what it was. After that we lucked in to getting on board with a great specialist care provider that I have full confidence in. I get the feeling he doesn't understand it all and we are "research" as much as patients but the guy has been responsive and open to our participation and exploration in treating our son. Its what anyone could want in a doc as we feel part of a care "team" rather than lab rats that should be prodded and poked in silence.
I'm sorry you're going through this, but I'm still GLAD that you're doing it the way you are! If half the parents out there, were as attentive as you.....
Cancer would've been cured long ago.
Cancer would've been cured long ago.
IVIG has been thought about.
We seem to be an immuno compromised family.
My daughter had a bunch of ear infections, strep, ear tubes, adenoid removal as a toddler than was diagnosed with diabetes Type I age 5. My son has his issues. Both have some allergy issues. Im blonde/blue and that shit about the master race is certainly BS I tell you.
Suckiest thing about this is 4-5 years ago my boss was having issues with his son, wouldnt go to school, ear infections, etc. I didnt know what IVIG was at the time but as he explained a procedure his son went through I now in hindsight realize his son had a IVIG, a few times apparently, because he said they had done it before and his conditioned improved for a a while after. My boss never mentioned PANDAs. I dont know if they even had the term or if they knew of PANDAs. I sense his sons condition perplexed my boss not only as he was his father but my boss was Alpha Type A and a lot of the symptoms bring you to the point where Patton slaps the suffering soldier.
Knowing what I know now Im pretty sure his son had PANDAs.
Last year my boss came home from work late one night, left his gear bag in the kitchen and a short time later his other son comes running to tell him he heard a gun shot in the yard. This kid that I know his family busted their hearts on was gone. Saddest funeral I had been to. Heavily attended by his class mates. The kid was no loaner weirdo - he was just being eaten up.
I have a feeling this is something we will deal with until my son is into his twentys. The window to develop PANDAs seems to be from 2 - 12 years old. Get into your teens you seem to be good to go. The few things I have read about it seems that kids seem to get better as they get older. My bosses experience is bad enough but to think had his kid made it another couple years he might have put it behind him makes my stomach turn.
I tried to get a hold of my boss as we started to deal with this but he never called back. I feel like a dick now for trying as Im sure its the last thing he wants to talk about but I was kind of desperate at the time.
Brother I hoped for better news when I saw your update. It’s so hard watching a family member regress. I lost my first wife to myeloma causing my absence from the Hide for about 10 years. I would add to my earlier posts suggesting family therapy or possibly a support group that has been there done that. Tough to take and some support groups are straight rom hell. Just suggesting assistance I thought I didn’t need but was glad I went afterward. Only food for a thought. Are his white counts high or could they show a Viral shift? I know you look and read everyday, I did. Stay the course.
We visited a great psych to try and give my son some strategys to deal with the anxiety. She was excellent, no touchy feely, realizes the issue is medical more than mental. Mostly it was excercises designed to control normal body responses to fear - breathing/mental excercises to rationalize - good stuff but I dont know how much 11 year old boy retains. I have had similar "training" and I know it works if you think to use it. she was good to the point of realizing there is a limit to what she can do. If your body is activating the fear button medically rather than psychologically you have to stop the mechanical process first.
Sorry for your loss. Misery actually doesnt love company but it helps to put things in perspective and know that others have been through worse and made it.
We are actually doing good in a sense his issues are not immediatly life threatening. My wife and I just fear the future as he falls behind in school and we know he needs to be ahead on education if he is to be independent in life.
P, found this and thouht I'd pass it along:
https://www.nimh.nih.gov/labs-at-ni...-labs/sbp/information-about-pans-pandas.shtml
R
https://www.nimh.nih.gov/labs-at-ni...-labs/sbp/information-about-pans-pandas.shtml
R
Thank you for thinking of us.
If you read it its a nightmare - something good goes bad - sucks.
Been doing okay on latest dose of steroids but refuses to play baseball - thinks he will get killed by a pitch. He used to love baseball and it was a good time watching him for us.
I though who was on first ? But have heard of a doctor named Who , something about his liking to wear a spear of broccoli on his lapel strange fellow . Get well soon .
I am a medical assistant and I work as a nurse at a psychiatric hospital for children. PANDAS or Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus is a common disease for children nowadays. It can be cured in some cases, but usually, you just make the tics appear rarer. The best way of curing it is taking antibiotics, to exterminate the infection that causes the disease. The recovery is very slow, and sometimes it is hard for children for passing the whole treatment, but at least we know that there is a chance that they can come to normal.
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How To Become a Home Health Aide - Salary, Training, Schools, Job Description
There are many types of people who work in the medical field, and one of the more forgotten ones is...www.exploremedicalcareers.com
PANDAS = Rheumatism of the brain.
No fun.
I can speak from two perspectives. I'm an MD, but I also won the autoimmune/immune lotto with three conditions warranting regular high dose IVIG. The reason the data isn't strong is because its so rare. I agree go past steroids and straight to IVIG. Steroids nearly killed me. I declined cyclosporine because of kidney issues.I think in your child's case, its worth a shot, steroids in kids are horrible. Problem is, multiple treatments may be needed - which increases the risk of side effects. IVIG is a pooled plasma product - I was getting product from about 120,000 people per month...Although the products are screened for most infectious agents, there is a low but real risk of anaphylaxis, and a side effect that I have had 8 times in 6 years, is aseptic meningitis, lasting up to 10 days. Its the absolute worst headache of your life when you absolutely can't even get vertical. It will be hard to watch a child with this. Beyond migraine pain. That risk is as high as 17%. Its also wickedly expensive, as in THE most expensive "pharmaceutical" product on the market...(my mom accidentally froze a dose and they wanted 56K for a replacement) ,so its hard to get approved. Your doctors will have to fight. If you are going to do it - the sooner the better. Plasmapharesis is very scary (worse).
That statement was tempered by the story that followed concerning my meeting a highly rated Cardio Surgeon at the next bench at my rifle club.
I know you guys are here.........I just havent met any at any doctors office I have been examined at.
Maybe instead of them asking "Do you have any guns at home? I should be asking them "Do you have any guns at home?"
At least we would have some small talk to discuss and avoid the uncomfortable feeling of that "I need to check your prostate....." moment.
Thats recently come up in another thread and it warrants explanation. When Obamacare was first introduced, any provider was given an automatic "carrot" of $38K if he/she bought and used an "approved" electronic record system compatible with "easy access" - supposedly for transfer of patient care but I'm sure with other agendas. All of those systems had pre-programmed social history questions, of which one was the infamous "gun" question.
Never let a crisis go to waste.....
All sorts of bad shit occurs when govt interjects itself between patient and doctor.
My understanding on the patient "Pain 1 to 10" scale is that too many complaints of pain by patients can lead to sanctions by gov.
So what do they do?...... increase pain meds which results in....
I think they have been better at the pain meds but still.....give me back my GP and the closed patient doctor loop.
Welcome to the Hide, Newbie.I am a medical assistant and I work as a nurse at a psychiatric hospital for children. PANDAS or Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus is a common disease for children nowadays. It can be cured in some cases, but usually, you just make the tics appear rarer. The best way of curing it is taking antibiotics, to exterminate the infection that causes the disease. The recovery is very slow, and sometimes it is hard for children for passing the whole treatment, but at least we know that there is a chance that they can come to normal.
______________
How To Become a Home Health Aide - Salary, Training, Schools, Job Description
There are many types of people who work in the medical field, and one of the more forgotten ones is...
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