Update on our neurologists visit

[airial95]

First a recap of our first visit:

 

 

It actually went better than I thought. When we first started discussing why we were there, and that he was being treated for PANDAS - and the dx was confirmed by Muephy, he sort of got a smug, "here we go " look on his face. It didn't last long, however, because I just continued right on without letting him interrupt as to why we are treating the way we are (including the admission that if abx have any chance of working I'd much rather try that first than the alternative on my 2 year old.). When I pulled out what we now affectionately call my "crazy mom binder" tracking symptoms over the last 6 months -and correlating known strep infections at school that I think he realized I had done some homework.

 

He didn't completely dismiss the dx-which surprised me. He said the reason they're connecting pandas was the sudden onset -duh. But he asked if we've gotten titers run, and if we could share the results when we do. (that's somewhat promising I think). He also described that tics are associated with OCD and all the other neurologist crap. The good news is that he didn't think medicating was necessary for his tics, but he is going to run an EEG next week to make sure there are no seizures causing the tics, since they just started a couple of weeks ago(which is exactly why our ped sent us there).

 

So overall, while it wasn't a great a ppt, i had prepared myself for much worse.

 

Well, we went last week for the EEG, Bummy was a trooper, he did great! Everything came back normal.

 

I was at the pediatrician with my daughter today (she had a jfollow up for the ENT and they mentioned her throat looked red. Turns out she has scarlet fever - but that's a whole 'nother post!) while there, I gave him an update on my son. He said that he got a full report from the neurologist yesterday with the EEG results and his diagnosis, and to his surprise (and mine) he agreed with and confirmed the PANDAS diagnosis!

 

Success, one doctor at a time...we'll make believers of themall!!!!

[nevergiveup]

Wow! Grear job also....its not like he diagnosed it, you had to convince him. I hope someday these docs will know how to diagnose this illness. Why are we trying so hard to convince docs that our children have this illness. A knowledgeable doc will know the disease. My most recent doc, didn't need me to spell it out. She understood the cunningham test, asked about her symptoms and started treatment. I hope u can find a pandas expert that will offer your child the best care. We are fighting for care when we should be getting treatment and concentrating our efforts on healing our children and making their childhood more fun, and fullfilling. How exhausting, we have to convince these docs this disease exists, our kids have it and what treatment they need. I am not sure why they aren't paying us for the visit rather than the reverse. We need to expect more from our children's doctors.

[lfran]

Isn't scarlet fever caused by strep????

 

First a recap of our first visit:

 

 

It actually went better than I thought. When we first started discussing why we were there, and that he was being treated for PANDAS - and the dx was confirmed by Muephy, he sort of got a smug, "here we go " look on his face. It didn't last long, however, because I just continued right on without letting him interrupt as to why we are treating the way we are (including the admission that if abx have any chance of working I'd much rather try that first than the alternative on my 2 year old.). When I pulled out what we now affectionately call my "crazy mom binder" tracking symptoms over the last 6 months -and correlating known strep infections at school that I think he realized I had done some homework.

 

He didn't completely dismiss the dx-which surprised me. He said the reason they're connecting pandas was the sudden onset -duh. But he asked if we've gotten titers run, and if we could share the results when we do. (that's somewhat promising I think). He also described that tics are associated with OCD and all the other neurologist crap. The good news is that he didn't think medicating was necessary for his tics, but he is going to run an EEG next week to make sure there are no seizures causing the tics, since they just started a couple of weeks ago(which is exactly why our ped sent us there).

 

So overall, while it wasn't a great a ppt, i had prepared myself for much worse.

 

Well, we went last week for the EEG, Bummy was a trooper, he did great! Everything came back normal.

 

I was at the pediatrician with my daughter today (she had a jfollow up for the ENT and they mentioned her throat looked red. Turns out she has scarlet fever - but that's a whole 'nother post!) while there, I gave him an update on my son. He said that he got a full report from the neurologist yesterday with the EEG results and his diagnosis, and to his surprise (and mine) he agreed with and confirmed the PANDAS diagnosis!

 

Success, one doctor at a time...we'll make believers of themall!!!!

[airial95]

Wow! Grear job also....its not like he diagnosed it, you had to convince him. I hope someday these docs will know how to diagnose this illness. Why are we trying so hard to convince docs that our children have this illness. A knowledgeable doc will know the disease. My most recent doc, didn't need me to spell it out. She understood the cunningham test, asked about her symptoms and started treatment. I hope u can find a pandas expert that will offer your child the best care. We are fighting for care when we should be getting treatment and concentrating our efforts on healing our children and making their childhood more fun, and fullfilling. How exhausting, we have to convince these docs this disease exists, our kids have it and what treatment they need. I am not sure why they aren't paying us for the visit rather than the reverse. We need to expect more from our children's doctors.

 

We do have a great team working with us. Our pediatrician diagnosed it immediately once we decided to seek help (it took as a while to admit to ourselves that it wasn't just the normal "terrible twos"). And after 6 months of treatment, our son started with his first motor tic (a facial grimace). At that point our Dr. sent us to Dr. Murphy in St. Petersburg (we're in the Tampa Bay area so she's in our backyard) and to a pediatric neurologist. He wanted a neurologists evaluation since the tic was new, and even though it fit symptoms and timeline (turns out he had a strep infection at that time) since he admittedly says he doesn't know everything, he wanted to rule out any other causes of the tic since it was late to the party. But he didn't want to send us to the neurologist without also sending us to the "big guns" because he too thought the neurologist would be dismissive. And he really wasn't dismissive, he was receptive, but skeptical during our discussion. He knew an awful lot about PANDAS, and while we were there, he even acknowledged why the pediatrcian and Dr. Murphy would cite PANADS. He wanted copies of the blood work, and didn't push any psych meds on us. I wouldn't say that I was "convincing" him as much as I was assertive in our confidence in our diagnosis thus far. But it did surprise me and the pediatrician that he just flat out concurred with the dx without any fuss!

 

This neurologist came very highly recommended by a friend who works with him occasionally in her PICU - she also recommended our pediatrician too. I guess she's a good judge of Doctors!!

[airial95]

Isn't scarlet fever caused by strep????

 

 

Yes, it is. Ironically, my daughter really didn't show any symptoms of being sick. Our son had a ramp up of symptoms starting Friday morning, lasting through the weekend to Monday. We didn't think too much about it, since the EEG was Friday and he had to be sleep deprived for it. He always has a rough couple of days if he's overtired. He had a TERRIBLE day at day care on Monday, and when I went in to pick him up, was told there were two cases of strep in his class, first one was discovered on Friday. So his ramp up in symptoms coincided with his exposure (which is his normal pattern 3-4 days of ramped up behavior then back down to where we were prior to exposure). My daughter started feeling a little low energy on Monday night, but she was pouting about having to go to the ENT, so I didn't really think much of it. I promised her Chick-fil-A for breakfast before the Dr. yesterday, and when she went into the play area she just sat on the bench not moving. That was my first clue something might be wrong. At the ENT - the dr. said "her throat looks a little red, but there's no ###### nodules or anything so I wouldn't worry" (right - apparently she's never been around a PANDAS kid!) I told her my son reacts badly to strep so I asked for a throat culture. She said they weren't equipt to do that (really? the ear nose and THROAT doctor can't do a THROAT culture???). So we were off to the pediatrician. He saw the rash on her belly (which I hadn't even seen - but I wasn't really looking), red throat, etc... and BAM! Scarlet fever. I'm home with her today, and she's just fine, was yesterday too. You'd never know she was sick. If it wasn't for the ENT mentioning her throat was red and me being paranoid about strep, I wouldn't have taken her in and who knows where we'd be!

 

And my son followed his typical exposure pattern, he had a great day yesterday! This morning was rough, but we tried a new technique the behavior therapist gave us last night for the OCD...so it was to be expected. We'll see how he does in school!

[faith]

arial,

hello, sorry I'm late to your history, but curious what were the symptoms besides the tic that made you seek treatment? what is the 'treatment', is he on abx now? he is two you say? not clear if he is on the spectrum?

 

Only thing I can say you are lucky (if that's the right word) to look at all this from the beginning when he is this young, many of us have to look way back into the archives of our child's history. what you say about seeing your son's first tic resonated with me, the facial grimace.....we saw that at age 3....darkest day of my life, .....