Son getting much better

[cwmom]

Hi,

 

I am new to this site but already have found it to be very informative. My 11yo son has PANDAS. I don't need to explain what this has done to our lives. His overnight change in behavior occurred on 6/27/08 ( my 41st birthday) My husband and I went away for the night. Our son slept at a friends house ( his best friend), he called us at 2am complaining of a headache and sore throat and told us he had vomited-- the next day when we arrived home we found a completely different person- He had EXTREME behaviors- he was paranoid that here were chemicals in his food and drink.... long story short he lost wt, and refused to bathe or brush his teeth for weeks!!!!

We were able to maintain hygeine but it was a nightmare-- he would only eat what he bought himself-- we couldn't touch anything or it was contaminated-- he wouldn't touch us or anyone IT WAS SO FRIGHTENING!! The heallthcare community didn't have a clue-- They didn't even do a throat cx in the ER 2 days after his sx began.

 

The psychiatry resident wanted him to do outpatient day treatment-- He never even mentioned PANDAS ( How could it NOT have been part of the differential diagnosis. Especially when he had piano playing hand movements and facial tics ( tongue thrust)

the outpatient program was horrible the first thing that happened was our son was brought into a room where a "therapist explained that his brain was having a hiccup and that was how to describe his OCD and that medications would be started to help with that" Immediately he went into PANIC mode and from that point on lost all trust in not only that staff but us his parents as well.-- We got outta there quick.

 

I love the title of Jenny McCarthy book Mother Warriors because that is exactly what I felt like. I was battling a demon in my child- I kept lookig for answers even though experts were telling me PANDAS is a "CONTROVERSIAL DiAGNOSIS" -- I could write about this all day all of the ups and downs but I will spare you-

My recommendation to anyone going through this is to find a provider that will listen a good Psychiatrist is key

Rheumatology has been the discipline in our area ( Boston) that gets it.

 

My son had his tonsils and adenoids out last week -- for strep prophylaxis controversial but worth the risk in my opinion. His appetite is already better than pre T&A

he will continue on amoxicillin or penicillin for a year we plan on discontinuing the SSRI next spring

Today he is a happy, healthy 6th grader doing really well in school -- plays sports and has lots of friends-- We know PANDAS is always a possibility but we are armed with the knowledge that

it can be overcome--

[amy s]

Welcome cwmom,

Thanks for sharing your story. I'm happy to hear that your son is doing good now. I know what you mean about what this does to your lives. Everything changes. My dd's first episode was August 2007 and I know I will never be the same again, even if she gets better. The whole thing is a nightmare...from the sudden onset and severity of symptoms to the medical community's reaction. I have a pretty big chip on my shoulder about the whole thing, just that we couldn't get help. We are getting it now, finally we have some hope and doctors that listen. Again, thanks for sharing your story.

Regards,

amy s

[EAMom]

Cwmom, I'm so glad things are going better with your son and he is getting help. That is the most frustrating thing about this disease (aside from our kids going crazy!) is that it is so hard to find a docs that are knowledgable, or at least docs that are willing to listen and learn. It's bad enough that we have to battle PANDAS, we shouldn't have to battle the ignorant and misinformed medical community on top of it!

 

And yes, the "PANDAS is a controversial diagnosis" business is so irrititating...PANDAS is only "controversial" because of the stubborness, ignorance, and disorganization of the medical community!

 

Please continue to keep us updated as to how your son is doing with his treatment.

[pmoreno]

Hi,

 

I am new to this site but already have found it to be very informative. My 11yo son has PANDAS. I don't need to explain what this has done to our lives. His overnight change in behavior occurred on 6/27/08 ( my 41st birthday) My husband and I went away for the night. Our son slept at a friends house ( his best friend), he called us at 2am complaining of a headache and sore throat and told us he had vomited-- the next day when we arrived home we found a completely different person- He had EXTREME behaviors- he was paranoid that here were chemicals in his food and drink.... long story short he lost wt, and refused to bathe or brush his teeth for weeks!!!!

We were able to maintain hygeine but it was a nightmare-- he would only eat what he bought himself-- we couldn't touch anything or it was contaminated-- he wouldn't touch us or anyone IT WAS SO FRIGHTENING!! The heallthcare community didn't have a clue-- They didn't even do a throat cx in the ER 2 days after his sx began.

 

The psychiatry resident wanted him to do outpatient day treatment-- He never even mentioned PANDAS ( How could it NOT have been part of the differential diagnosis. Especially when he had piano playing hand movements and facial tics ( tongue thrust)

the outpatient program was horrible the first thing that happened was our son was brought into a room where a "therapist explained that his brain was having a hiccup and that was how to describe his OCD and that medications would be started to help with that" Immediately he went into PANIC mode and from that point on lost all trust in not only that staff but us his parents as well.-- We got outta there quick.

 

I love the title of Jenny McCarthy book Mother Warriors because that is exactly what I felt like. I was battling a demon in my child- I kept lookig for answers even though experts were telling me PANDAS is a "CONTROVERSIAL DiAGNOSIS" -- I could write about this all day all of the ups and downs but I will spare you-

My recommendation to anyone going through this is to find a provider that will listen a good Psychiatrist is key

Rheumatology has been the discipline in our area ( Boston) that gets it.

 

 

 

Hello and welcome - glad to have your input. I have often wondered whether my daughter, Gaby, harbors strep in her rather large tonsils. However, after IVIG last month she was placed on prophylactic augmentin which she is to stay on for at least a year (or more) and you would think that that should clear up any strep that was in her tonsils. Before your child had his tonsils out, did you guys try antibiotics? The one thing that I worry about with tonsilectomy is that they say that the tonsils are supposed to act as a screen to catch the bacteria and that it could be worse without them. Also, I wonder how the symptoms could disappear so quickly after tonsilectomy because even if there was strep in them and that was removed - it seems like to antibodies would still be circulating for a while and that some of the damage to the neurons (from loss of myelin) would still take quite a while to reverse itself. Any thoughts? Pat

 

My son had his tonsils and adenoids out last week -- for strep prophylaxis controversial but worth the risk in my opinion. His appetite is already better than pre T&A

he will continue on amoxicillin or penicillin for a year we plan on discontinuing the SSRI next spring

Today he is a happy, healthy 6th grader doing really well in school -- plays sports and has lots of friends-- We know PANDAS is always a possibility but we are armed with the knowledge that

it can be overcome--

[Diana]

Dear Cwmom,

 

May I keep in touch with you? Myself and a few others are trying to keep track of the PANDAS cases across the U.S. Yale University is trying to get a grip on the spread of this illness, etc. My son is largely recovered - but not quite as beautifully as your sons seems to have done! What hope you have given me!

 

My name is Diana - I live near Stanford Univ. - California - where there has been quite a rash of PANDAS cases here. Doctors slowly awakening from their slumber - so the more stories we hear the better.

 

Let me know if I can reach out to you. Being the computer non-nerd that I am - I can' figure out how to send you a private message - so I'm doing it this way. Thanks, diana

[Diana]

 

Pat - Garrett had his tonsils removed last February. Long story short - I think it may have improved his symptoms? but the purpose was not to really stop the PANDAS - the theory was that IF it was intracellular or hiding in the crypts of his giant (yes, giant) tonsils and adenoids - let's take 'em out.

 

He still had lots of PANDAS symptoms from February thru August - so it may or may not have helped. In our case, they needed to be removed because they were chronically enlarged and he could barely breathe or talk some of the time. Talked to lots of docs about how it may/may not help PANDAS - and they pretty much shrugged their shoulders, "Maybe?" Helpful - huh? diana

[michele]

Glad you shared your story. I hope you have recovered your son from PANDAS. Did you use the DAN! protocol then? I am in he process of getting a child psych for him. Our first psych didn't get the involuntary part of the disorder. We did see Dr. T Murphy psych but she is in Florida and we are in OH so that won't work long term. How did you find a psych who dealt with PANDAS, or were they just child neuropsych? I get frustrated because when I call to set up an appointment with a neuropsych ped they are always putting you off with not accepting new patients, not on your insurance or needing a referral. There are so many waves to jump through to get the "right" Dr. We are also trying a ped rheum Dr. next week. My son has joint pain in his hands and feet and a toe reflex where he walks on his toes post episodes for several months. Maybe a ped rheum can help. He is one week on the zoloft 12 mg and the reflex is still there. Has your son been sick at all lately? Is he on any meds? Would you mind sharing the protocal you used since it worked. I would love to hear from you. It is so sad your son's OCD was so intense. That must have been a nightmare. I am so hapy for you that he is better. We also do the daily antibiotics and the attention meds. What do you think was the key component for your son's recovery? I pray he stays well. We are going on our sixth year of this horrible nightmare. We have alot more yers before he is a teen so I'd like to have what ever you found! Blessings.

 

Michele

 

Hi,

 

I am new to this site but already have found it to be very informative. My 11yo son has PANDAS. I don't need to explain what this has done to our lives. His overnight change in behavior occurred on 6/27/08 ( my 41st birthday) My husband and I went away for the night. Our son slept at a friends house ( his best friend), he called us at 2am complaining of a headache and sore throat and told us he had vomited-- the next day when we arrived home we found a completely different person- He had EXTREME behaviors- he was paranoid that here were chemicals in his food and drink.... long story short he lost wt, and refused to bathe or brush his teeth for weeks!!!!

We were able to maintain hygeine but it was a nightmare-- he would only eat what he bought himself-- we couldn't touch anything or it was contaminated-- he wouldn't touch us or anyone IT WAS SO FRIGHTENING!! The heallthcare community didn't have a clue-- They didn't even do a throat cx in the ER 2 days after his sx began.

 

The psychiatry resident wanted him to do outpatient day treatment-- He never even mentioned PANDAS ( How could it NOT have been part of the differential diagnosis. Especially when he had piano playing hand movements and facial tics ( tongue thrust)

the outpatient program was horrible the first thing that happened was our son was brought into a room where a "therapist explained that his brain was having a hiccup and that was how to describe his OCD and that medications would be started to help with that" Immediately he went into PANIC mode and from that point on lost all trust in not only that staff but us his parents as well.-- We got outta there quick.

 

I love the title of Jenny McCarthy book Mother Warriors because that is exactly what I felt like. I was battling a demon in my child- I kept lookig for answers even though experts were telling me PANDAS is a "CONTROVERSIAL DiAGNOSIS" -- I could write about this all day all of the ups and downs but I will spare you-

My recommendation to anyone going through this is to find a provider that will listen a good Psychiatrist is key

Rheumatology has been the discipline in our area ( Boston) that gets it.

 

My son had his tonsils and adenoids out last week -- for strep prophylaxis controversial but worth the risk in my opinion. His appetite is already better than pre T&A

he will continue on amoxicillin or penicillin for a year we plan on discontinuing the SSRI next spring

Today he is a happy, healthy 6th grader doing really well in school -- plays sports and has lots of friends-- We know PANDAS is always a possibility but we are armed with the knowledge that

it can be overcome--