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First neurologist appt wenesday- Looking for advice


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Okay this is weird but im nervous about my sons first neuro appointment that they just moved up from Feburary to this Wenesday. He is just getting over strep since last Monday. Finished his azith. I called his pedi due to his irrational and aggressive behavior that happened on Wensday and Thursday night of last week. Swearing hitting, hitting himself. It was not a pretty scene. Also major anxiety complaining of rapid heart beat, mild seperation anxiety with me leaving to go to work (i work p/t two nights). He was just emotionally unstable. Also has OCD and tics (which I think are ocd not truley tics) twisting wrists, popping shoulder. Also holds spit, washes face, and counts repetatively before taking his vitamins.

 

Heres my question. Where do I begin with this neurologist? What questions should I bring? What test should I have them run? Or will they know? How pushy should I be?

 

I am so overwhelmed and depressed this week because now all of a sudden I am looking at my son diferently. Like I have to handle him different than a normal child with discipline and helping him with his anger and "habits" as he puts it. This makes me feel really sad inside. Labeling him or taking him to go get labeled is upsetting. I want to know what to say/ask. What tests are neurologist capable of ordering? I would like an OAT test from what I've read that can tell a lot, also the titers ASO test. I just want to be super organized with his symptoms and know what they can do for us? I can tell you right now, I will not be interested in a physch eval or meds. I don't know maybe I should be. IF anyone has any advice It would be a life saver for me right now. Thanks in advance. Also Im trying to sheild him from all of this until we figure out what it is and how we can help him. Any parenting advice for a mom with an eight year old boy who already has low self esteem? I don't want to freak him out. He doesn't know hes going to this doctor yet. How should I explain it?

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Okay this is weird but im nervous about my sons first neuro appointment that they just moved up from Feburary to this Wenesday. He is just getting over strep since last Monday. Finished his azith. I called his pedi due to his irrational and aggressive behavior that happened on Wensday and Thursday night of last week. Swearing hitting, hitting himself. It was not a pretty scene. Also major anxiety complaining of rapid heart beat, mild seperation anxiety with me leaving to go to work (i work p/t two nights). He was just emotionally unstable. Also has OCD and tics (which I think are ocd not truley tics) twisting wrists, popping shoulder. Also holds spit, washes face, and counts repetatively before taking his vitamins.

 

Heres my question. Where do I begin with this neurologist? What questions should I bring? What test should I have them run? Or will they know? How pushy should I be?

 

I am so overwhelmed and depressed this week because now all of a sudden I am looking at my son diferently. Like I have to handle him different than a normal child with discipline and helping him with his anger and "habits" as he puts it. This makes me feel really sad inside. Labeling him or taking him to go get labeled is upsetting. I want to know what to say/ask. What tests are neurologist capable of ordering? I would like an OAT test from what I've read that can tell a lot, also the titers ASO test. I just want to be super organized with his symptoms and know what they can do for us? I can tell you right now, I will not be interested in a physch eval or meds. I don't know maybe I should be. IF anyone has any advice It would be a life saver for me right now. Thanks in advance. Also Im trying to sheild him from all of this until we figure out what it is and how we can help him. Any parenting advice for a mom with an eight year old boy who already has low self esteem? I don't want to freak him out. He doesn't know hes going to this doctor yet. How should I explain it?

 

 

Darla,

I don't know what to say to help. We have had several visits to neurologists and I couldn't get them to believe in pandas or understand our situation. In fact one even tried to hospitalize my dd in a mental hospital against my wishes (for MY safety) But when we went to the neurologist at least they did an MRI and an EEG so that I could find out there was nothing seen. I guess that helped. (don't get me wrong...that neurologist was really nice, helpful and at least it was MORE documentation of the severity of symptoms...which that is important...having enough documentation to justify treatment options....he even got video of a rage during her eeg so that was good for us) Now...after everything we have been through, I refuse to take my child to a doctor who doesn't believe in pandas. I will call first and speak to the nurse and see if this is an appropriate appointment for my child or not. The nurses I speak with typically never have heard of pandas and so I ask them to please speak to the doctor and to call me back. I give them a quick run down of history, etc.

 

There are all kinds of things that a neurologist can order to check for...but ours never ordered any strept titers or even cultures etc. But my child saw the first neuro about 7 months AFTER the beginning of symptoms. My dd's organic acid tests came back perfect, he tested for porphyria (perfect) even did a chromosome check which was perfect. I had my dd's catacholomine's checked and cortisol levels, ammonia, lead, amino acids...everything was perfect but she was OUT OF CONTROL BIZARRE. Right after we got back home from the testing I heard of pandas and emailed that neuro. He said yes that he'd heard of it but didn't think that was what my dd had'. Anyway, all water under the bridge now, but I guess my suggestion to you is bring research based papers in with you to the appointment...bring proof of your child's recent illness. It's just that there isn't anything that I know of to definitively diagnosis pandas. Dang, all of us wish there was. That would help immensly. Have you looked at the Neuroscience pandas OCD panel? I don't have the website right now but I'm sure if you google it you can find it pretty easy. Maybe you could request that from the neuro? Good luck and let us know how it goes!

regards,

amy s

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Darla,

 

I can tell you that the neurologist that we saw 3 times, and never again, told us that there was no difference between Pandas and tourettes. I think not. I specifically told him I would NOT give my son (9) anti-psychotic drugs. I can also tell you that the psychiatrist that we took our son to also AGREED with me against the anti-psychotic drugs, we did try clonidine and one other high blood pressure drug that they use for tics, they did not work for my son. I can also tell you that I spoke with a doctor at Yale who agrees with me as far as the anti-psychotic drugs. Dr. K in Chicago also is against given these kids these drugs.

 

Linda

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I wish I could encourage you Darla but I regret our experiences with neurologists have been yuck...and my son doesnt even have PANDAS! It was bad enough just trying to get beyond the "no help other than antipsychotics, antidepressants" for his TS.......from what I have heard, most do not acknowledge that PANDAS even exists <_<

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Why was the appointment made? I've gone to specialists just because I was referred by PCP and I don't think they'll do too much unless you have a specific problem you'd like them to address. Neurologists specialize in the functioning of the nervous system ( a little bit with structure, but you'd mostly want a neurosurgeon for that). The first thing they'll ask you is the reason for the visit. If there is something you'd like them to do- a test or something- make sure you tell them what and why you think the test is needed. Forget those tests run only by special labs...they won't do them (although if you do them independently you may get lucky with a practitioner being interested in the results.). Allergy testing/strep testing are out of the realm of neurology. They should investigate the source of any irregular movements (though many just prononce dx). Abnormal behaviors will probably be referred for psychiatry. Geez, I've lost my point here...oh, yeah, try to remember why the appointment was originally made (these appointments often take so long to materialize that you're not even dealing with the same issues anymore that you were referred for). Try to look at it like this: the neurologist is being paid to use his/her expertise to help your child. So, don't think about what the doctor will expect- decide what you expect the doc to do for your child. Do give history (w/ any observed strep connection) and if you don't know what kind of testing you'd like done (you're not expected to know what tools the doctor has) ask if its possible to test for.....

 

Good luck with the appointment- sometimes it turns out to be just the right person to help. The other thing I always do is pray for guidance, that I'll have the right words to get the help my child needs. Sometimes this is amazing how I'll have stuff almost rehearsed for the appointment, but instead something much better comes out of my mouth and I don't even know where it came from (I'm assuming above), but it works!

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I wish I could help also, but haven't had luck with Neurologists here. They both didn't believe in PANDAS and tried to prescribe psych drugs for my son. The first wanted to put him on Zoloft and the second spent 20 minutes trying to convince me to put my 7 year old child on Risperidol (sp?). Instead, I've worked with my DAN! doctor and my son is doing so much better on continuous antibiotics and biofilm treatment. We are doing IVIG next week, but he is already greatly improved and I'm so glad I didn't listen to the Neurologists.

 

We explained the situation to our son and he gets it that it's not him choosing some of these behaviors; it's the PANDAS controlling and tricking his brain. That being said, he still has consequences for things like violent behavior. It was more difficult during the full Tourette's time as I couldn't discipline him for repeatedly saying "Idiot", Crap", and "Fart" and now my 4 year old has begun saying using "idiot" and his brother with PANDAS has stopped. I think it's really helped our 7 year old to talk about what's happening in his body. During the worst of it, we talked about his tics with him. His anxiety surrounds balloons and we have accomodated his requests not to have balloons and I do social stories for him about them, but we also talk about the fact that worrying about balloons is another trick the PANDAS is playing on him. Taking that approach has worked in our family.

 

The important thing is to let him know you aren't upset with him about these behaviors and that you understand he doesn't have much control over them right now. It's a medical condition (lots of people have medical conditions that they need help with) and you are working with doctors to find the best way to help him. It's nothing to be ashamed of. It's something that happened to him, not something he is doing.

 

Hope that's helpful. It's a tough road and we all know how hard it is to see our children suffer like this.

 

Jena

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Thank you for your advice. Everyone here, thank you. It sounds like your doing a really good job with your son. I've had a little talk with him today about going to see the neurologist. He went back to school today and had in his words a "fabulous" day. He said he saw an eyelash on his shirt this morning and made a wish to have a good day and he did! I was grateful and it made my day to seem him happy and relaxed again. I can't tell you what a difference a week makes. I don't know what to think. Was it the anitbiotics he was on? His tics are way down and his ocd. His personality is happy. This is today though. I don't know what to expect with him most times. I watch him get off the bus to see what kind of mood I'm going to get. All I do know is last week when he had strep, it was like dr. jeckle and mr. hyde. He hit a peek and is pretty much down from it now it seems. I talked to him about his behavior and asked him how he felt. He was well aware and said his heart was racing and it was like his mind was calm but he was out of control ?? not sure but then he showed me a discription with his hands. He said heres the top of the ocean and i am usually right below down here....well last week i flew right up through the top went way high and then wayyy lown back into the ocean. I said yes.. i understand that, i get what you mean.

 

There is no way I am putting him on any meds at this point. I just need to know what the neuro can do for tests? Titers.. yeast? what should I be asking her to run? Do I just tell her my opinion and see what she says? Would I be better off with a DAN doctor? I guess I will see how she responds and if im not happy im moving on. I want test his metobolic levels. If this is Pandas i don't know if my son would be a good candidate for taking antibiotics for weeks. He seems to be allergic to the azith he was already allergic to amox. Im getting the feeling these types of docs (neuro) look for diagnosing symptoms and prescribing rx. Maybe I should see about seeing a DAN doctor. My pedi told me to make an appointment with the neuro back when i called him a month ago over his tics and increasingly bad ocd. He told me it's tourettes and to see a neuro. I then called him at the end of this week after my son went down the tubes with this strep infection and told him I suspected PANDAS and wanted to rule it out. I told him I found a neuro that specialized in it but he said keep this one its sooner than the other neuro could get in to see me. Then he had this one pushed up for me so it's in two days. I thought that might be a good sign. I don't know. Sorry for the long winded book here! LOL. So thats that.

 

 

 

I wish I could help also, but haven't had luck with Neurologists here. They both didn't believe in PANDAS and tried to prescribe psych drugs for my son. The first wanted to put him on Zoloft and the second spent 20 minutes trying to convince me to put my 7 year old child on Risperidol (sp?). Instead, I've worked with my DAN! doctor and my son is doing so much better on continuous antibiotics and biofilm treatment. We are doing IVIG next week, but he is already greatly improved and I'm so glad I didn't listen to the Neurologists.

 

We explained the situation to our son and he gets it that it's not him choosing some of these behaviors; it's the PANDAS controlling and tricking his brain. That being said, he still has consequences for things like violent behavior. It was more difficult during the full Tourette's time as I couldn't discipline him for repeatedly saying "Idiot", Crap", and "Fart" and now my 4 year old has begun saying using "idiot" and his brother with PANDAS has stopped. I think it's really helped our 7 year old to talk about what's happening in his body. During the worst of it, we talked about his tics with him. His anxiety surrounds balloons and we have accomodated his requests not to have balloons and I do social stories for him about them, but we also talk about the fact that worrying about balloons is another trick the PANDAS is playing on him. Taking that approach has worked in our family.

 

The important thing is to let him know you aren't upset with him about these behaviors and that you understand he doesn't have much control over them right now. It's a medical condition (lots of people have medical conditions that they need help with) and you are working with doctors to find the best way to help him. It's nothing to be ashamed of. It's something that happened to him, not something he is doing.

 

Hope that's helpful. It's a tough road and we all know how hard it is to see our children suffer like this.

 

Jena

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Yes, most neurologists don't know much about PANDAS (but many think they know all! ha ha!). This guy (Trifiletti) is an exception http://www.umdnj.edu/umcweb/marketing_and_...fall2005/11.htm . He's coauthored a couple of good papers on PANDAS as well.

 

For us, seeing a pediatric neurologist was helpful in that we were able to convince her that our dd indeed did have PANDAS (our ped was still skeptical at that point and not big on the idea of long term antibiotic prophylaxis). Having a specialist (besides the psych.) tell our ped. we should continue with the abs was helpful. That said, we (as parents) knew much more about PANDAS and strep than she did. She did admit she had seen only 2 cases (Diana's son and our dd) in the past several years but that she felt was definitely PANDAS.

 

Neurologists really seem to know about tics, not so much the OCD. Our child psychiatrist (OCD specialist) was really the doc that helped us most and knew the most about PANDAS. Eventually, we also got a ped. rheumatologist (who also admitted we knew more about PANDAS than she did) on board to say we should do the abs as well.

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