That was a waste of time, I THINK...

[amrussell]

We just got back from seeing our local pedi, she did order the strep titers bloodwork on my ds7 (YAY!!) and did a rapid throat culture on my daughter (NEGATIVE) but didn't do much else. I gave her the information on PANDAS, and she said that she hates seeing me go down this path because most of the PANDAS protocol is 'snake oil' and costs a lot of money, only to be let down. All this as I pay a $150 out of pocket for one appointment. It leads me to think, she is not at all on my side. She then told me that testing for Lyme was out of the question, since I live in Houston. I told her, that for my ds7's first year of life we lived in Virgina with a dog who had ticks and a husband who took my son out in the woods and hunted REGULARLY. She poopooed the idea. I told her that I question myself everyday, all day in fact, asking myself "Is this really PANDAS or am I creating this all in my head?" and honestly, I know without a shadow of a doubt PANDAS is a possibility! I'm tired of feeling like I'm nuts. I'm starting to feel like Leonardo DiCaprio in Shutter Island. And yet again she handed me some medicine to treat my ds7 & dd6 symptoms and turns her head at the CAUSE!

[Priscilla]

Sorry you had to deal with that. I wouldn't take her opinion about treating for PANDAS too seriously. True, she is a Dr, but most likely YOU know much more about PANDAS than she does. Dr's still fall in the realm of human (although many think they float above it), so in the end, you have a better viewpoint as the mother. Go with your gut, and find a Dr that supports you. Best of luck to you.

[peglem]

Not a complete waste of time, at least now you know where she stands on the issue. Sorry, it can be so hard finding that physician who will help and learn.

[thereishope]

What medicine did she give you? I'm sorry for the bad experience. I think the majority on here have had that happen one too many times. Walk away looking at that appointment as something that gave you more drive to find the cause and get your child better. Everytime a doctor poopooed me, it added the fuel to fire to prove them wrong.

Edited September 28, 2010 by Vickie

[momcap]

Oh wow, can I ever relate. We've gone to doctor after doctor for 4 years. Our pedi who actually believes my son has PANDAS is unwilling to treat him further and is no longer returning my calls. (I think because I suggested he conference with a PANDAS expert about protocol.) Our GP ran swabs on the whole family last week, found 2 carriers, and says there is no treatment for carriers. I want to scream! 2 of my kids have strep in their throats and 1 is going crazy, so lets do nothing?!!

 

Don't give up! My son's symptoms are mostly behavioural/emotional, and I've been told so many horrible things by doctors who didn't believe me. I've been told to take parenting classes, to bake apple pie and make my home a happier place to be, and to learn how to discipline better. DS(7) is diagnosed with a mood disorder, ADHD, ODD, GAD, SM, separation anxiety, OCD, and the list goes on. He makes repetitive disruptive sounds all day at school and they are treating it as a behavioural issue rather than vocal tics. I've been beaten down so many times that right now I just don't want to get back up. But I will, and so will you! We have to keep going and we will find the courage to do so. You are NOT alone!

[Fixit]

We just got back from seeing our local pedi, she did order the strep titers bloodwork on my ds7 (YAY!!) and did a rapid throat culture on my daughter (NEGATIVE) but didn't do much else. I gave her the information on PANDAS, and she said that she hates seeing me go down this path because most of the PANDAS protocol is 'snake oil' and costs a lot of money, only to be let down. All this as I pay a $150 out of pocket for one appointment. It leads me to think, she is not at all on my side. She then told me that testing for Lyme was out of the question, since I live in Houston. I told her, that for my ds7's first year of life we lived in Virgina with a dog who had ticks and a husband who took my son out in the woods and hunted REGULARLY. She poopooed the idea. I told her that I question myself everyday, all day in fact, asking myself "Is this really PANDAS or am I creating this all in my head?" and honestly, I know without a shadow of a doubt PANDAS is a possibility! I'm tired of feeling like I'm nuts. I'm starting to feel like Leonardo DiCaprio in Shutter Island. And yet again she handed me some medicine to treat my ds7 & dd6 symptoms and turns her head at the CAUSE!

 

not surprised...been dealing with this for 7+ years.....

not until this year have i been able to get docs(of course the specialists and 2 dans) have i been able to get help...i now a ped here who is pandas friendely, but would not prescirbe long term or high dose abx....he is inside the box and only follows guidelines....but is intersted...

for treating pandas...i use 7 docs as this desease takes a team..and all have new ideas, tests, and only a few have big guns available....

 

i think relying on 1 doc only may put you in a bind on many occasions and not get you down the road quick enough...

and this is a slow road to begin with.....i can't wait a week for a doc to call me back...or schedule a phone consult....things as you may know, go from 0-60 with no warning

and ultimately ...unfortunately...we are the captain of the ship...as each ship(child) is different

[tpotter]

[i know I've said it several times, but as a pediatric OT who works with very young children (0-3 mostly at this time), I currently have on my caseload 5 kids who I suspect may have PANDAS (I only have a total of about 18 kids, so that's a pretty significant percentage). This is based on symptoms, significant parent history (ARF, Lupus, Lyme, etc.), and the fact that I have personally seen 3 of these kids deteriorate when ill and get dramatically better when on abx.

 

I have helped one family get the test kit from Dr. C. (after having described the symptoms to Dr. C., and she believes it's PANDAS), I wrote a letter to another child's pediatrician, describing what I have observed clinically, and I just gave another family Dr. C's contact information, and told them to use my name (the child got sick again today, and he was back into his OCD...even mom had to say, "what's going on here?" (Another child's family refuses to believe, but I did give them information prior to her discharge from services, and yet another I just started working with, and it's only a slight suspicion so far.)

 

I do not have a particularly unique caseload...I get autistic kids, as well as kids with orthopedic and other problems, and I have just as much of a chance of getting these kids as any other OT in this area.

 

There is no question whatsoever in my mind that this is NOT a rare disorder. Something is going on, and I truly believe that Autism and ED will be blown out of the water. It can't happen soon enough, in my opinion.

 

And, I know how you feel about your local pedi, because I have switched 3 times in the past year, and I am currently having an email conversation with him about "choosing" whether to give my kids abx or antifungals for yeast, because he can't do both together,and he truly can't get the concept of the fact that my son's weakness is not due to something that PT will help, but rather that IVIG/PEX and the right abx and Nystantin can help. It's horribly frustrating, and even as much as I know, I can't get all the help m kids need, and I have to fight for virtually everything I can get for them!

 

Keep fighting. Thank goodness for this forum.

[T_Mom]

I agree with the above by TPotter--and want to add, that it is time to find a new doctor who will be open to the science and evidence in front of her/him. You will get no where with the pediatrician you saw today--

[matis_mom]

We just got back from seeing our local pedi, she did order the strep titers bloodwork on my ds7 (YAY!!) and did a rapid throat culture on my daughter (NEGATIVE) but didn't do much else. I gave her the information on PANDAS, and she said that she hates seeing me go down this path because most of the PANDAS protocol is 'snake oil' and costs a lot of money, only to be let down. All this as I pay a $150 out of pocket for one appointment. It leads me to think, she is not at all on my side. She then told me that testing for Lyme was out of the question, since I live in Houston. I told her, that for my ds7's first year of life we lived in Virgina with a dog who had ticks and a husband who took my son out in the woods and hunted REGULARLY. She poopooed the idea. I told her that I question myself everyday, all day in fact, asking myself "Is this really PANDAS or am I creating this all in my head?" and honestly, I know without a shadow of a doubt PANDAS is a possibility! I'm tired of feeling like I'm nuts. I'm starting to feel like Leonardo DiCaprio in Shutter Island. And yet again she handed me some medicine to treat my ds7 & dd6 symptoms and turns her head at the CAUSE!

She calls antibiotics "snake oil"? Goodness gracious! And how does it cost a lot of money? If you have a good doctor, the right treatment costs less that pschiatric drugs! Oh well, at least she gave you a prescription! You really need to find someone who understands.

[EAMom]

We just got back from seeing our local pedi, she did order the strep titers bloodwork on my ds7 (YAY!!) and did a rapid throat culture on my daughter (NEGATIVE) but didn't do much else. I gave her the information on PANDAS, and she said that she hates seeing me go down this path because most of the PANDAS protocol is 'snake oil' and costs a lot of money, only to be let down. All this as I pay a $150 out of pocket for one appointment. It leads me to think, she is not at all on my side. She then told me that testing for Lyme was out of the question, since I live in Houston. I told her, that for my ds7's first year of life we lived in Virgina with a dog who had ticks and a husband who took my son out in the woods and hunted REGULARLY. She poopooed the idea. I told her that I question myself everyday, all day in fact, asking myself "Is this really PANDAS or am I creating this all in my head?" and honestly, I know without a shadow of a doubt PANDAS is a possibility! I'm tired of feeling like I'm nuts. I'm starting to feel like Leonardo DiCaprio in Shutter Island. And yet again she handed me some medicine to treat my ds7 & dd6 symptoms and turns her head at the CAUSE!

She calls antibiotics "snake oil"? Goodness gracious! And how does it cost a lot of money? If you have a good doctor, the right treatment costs less that pschiatric drugs! Oh well, at least she gave you a prescription! You really need to find someone who understands.

 

Yeah. didn't you know that amoxcillin is made from the oil glands of snakes?

[EAMom]

Our GP ran swabs on the whole family last week, found 2 carriers, and says there is no treatment for carriers. I want to scream! 2 of my kids have strep in their throats and 1 is going crazy, so lets do nothing?!!

 

 

Augghhhhhh! What is wrong with these docs?