What can I expect from a visit to a pediatric neurologist?

[gfam]

We are on medicaid this year so our referrals to a ped. neur. are limited. I can take Nathan to one locally. Only one option here. Or I can drive 2 hours away to Childrens Hospital in Denver to doc's that I know will have everything at their disposal. Gas prices, well, that makes me pause going to Denver.

 

My question is this. What can I expect from a ped. neurologist visit. What kind of testing will they do? Could it be productive? Would it be worth it to go farther away to a possibly better facility, or should I just go to the local one? What can I expect from a visit to this type of doc?

 

My primary care does not want to do persue any allergy testing until the ped. neurologist has been seen.

 

I'm just not sure exactly what a ped. neurologist will do.

 

Thanks,

 

Donna

[Chemar]

Donna

it is hard to answer this as many of us have not been really satisfied with what conventional neuros offer, which is usually prescription meds and not much else

 

hopefully the doc you see will at least be able to provide clarity in diagnosis

 

travelling would only be worth it IMHO if to a facility that is clued up on the many things that can induce tics and who would do alternative testing and treatment options, but that can get very expensive! and is often not covered by insurance

 

Once you have seen the neuro and hopefully got an accurate dx, perhaps look in your provider list to see if any D.O. physicians in your area. They can sometimes be very clued up and take a more holistic approach to healing. Some medicaid plans do include them I believe

[gfam]

Donna

it is hard to answer this as many of us have not been really satisfied with what conventional neuros offer, which is usually prescription meds and not much else

 

See, that's what I am wondering. Will he actually do anything other than diagnose & recommend meds? Does he do any testing for anything usefull etc? A diagnosis would be great, but I think I can get that at the local doc too.

[Chemar]

Hi Donna...again hard to generalize as one may also be pleasantly surprised and find the doc IS one who reads and studys for themself outside of the conventional textbook box so many are in.....we have been pleasantly surprised sometimes and so one just never knows till you go. The best advice I can give you is write down a list (not too long) of the *most important* issues that you feel your child is exhibiting and ask specifically about those. Take the rest that the doc says in and the RESEARCH it yourself then.

 

Some conventional docs will know (or at least be open to your request) to order the important tests to at least investigate whether PANDAS or other microbes like candida etc or vaccine etc induced heavy metal overload, dietary and/or environmental allergies etc etc are contributing to the condition...... but be warned! many will look at you like you are from quackville when you mention these things

 

but still, trying to get a clear dx is I think an important start. doesnt mean you will get one from this doc....some are quick to dx Tourette or "transient tic disorder" but not check to be sure it isnt other tic disorder stuff caused by the above "triggers". But IMHO it is worth giving this doc a try at this time. hopefully you will be pleasantly surprised

[peglem]

My only advice is to go with requests for what you want to have done. I used to go to doctors and describe symptoms and wait for them to figure out what to do...no more. When I go to drs I know what I want them to do and tell them what I want. If they disagree with what I want, then I ask for an explanation...because if they are right, I want to understand why. I think you have a good chance of getting the ped. neurologist to recommend allergy testing. (personally, I'll bet they,ll wish it had been done before hand) Just tell them you'd like to rule out allergies as a cause. The ped neurologist will send a report to the referring physician- and you are likely to get something recommended by a specialist. If my child's ped wants me to see a specialist that I didn't request, I find out what he wants from the specialist before I go. I really hate when I see a specialists and they asks why I'm there and I'm not even sure. (and that's usually the first thing they ask.)

 

As far as whether to go local or the Children's hospital... I don't know. Some services I've gotten from the Children's hospital here have been fine, some have been so pathetic that I went back to my PCP and got referred elsewhere. If Denver's Children's Hsp. has some kind of a program where the specialists will work together to do a full workup, I'd go for that. Some Children's hospitals have a child study team approach. Its a shame that we really have no way of knowing how good a doctor is until we have to deal with them.

[gfam]

Good point. Now I feel like a dork. My MD is sending him to a ped. neurologist and I really am not exactly sure what they will do. How would a ped. neurologist help in this case. Do they normally diagnose this spectrum disorders? I really want to go the allergist, but he says no, do the neurolgist first.

[peglem]

Oh, don't feel like a dork, you have time to make a plan. Do you want imaging? MRI, EEG? these are tests a neuro is likely to order if they feel they need more information, and I think they're probably not a bad idea when kids have neurological symptoms, just to make sure the tics are really tics, and not something else that only looks like one. If your PCP doesn't want to send you to an allergist, just tell the neuro (have you identified any potential triggers?) that you suspect your son may have reactions to certain foods/chemicals (tell your observations) and ask if they think it would be a good idea to have allergy testing done. (you, the lowly patient asking for their lordly advice) I'm just saying, this is an opportunity to get what you wanted in the first place from your PCP. Also, ask the neuro to send you a copy of his/her report, otherwise it will just go to your son's doctor. Just follow a format of: This is what I see happening, here's what I'd like you to check. If you think its PANDAS, you might want to bring info (abstracts of studies) and any medical history that would support that (dx'x strep infections, titers ).

 

If there are any therapies you want for your son (CBT?), ask the neuro what they think about those as well...The worst thing that can happen is they say no and you'll be no worse off than you are now.

 

One last thought- sometimes neuros specialize (my daughter's specializes in headaches). I'm not sure what your son's chief complaint is, but, if you go to the Denver CH site, you can probably get profiles on the doctors, and may find one that has a special interest or emphasis that you think may be of benefit.

[Dedee]

Donna,

 

I agree with Chemar. It could go either way. I have found that going to a "better" doctor in a larger facility does not guarantee that they will know anything about PANDAS or other issues that cause tics. We were very excited to get an appointment with what was supposed to be one of the best ped. neurologist in this area. It took two months to get in. Well, she was very nice, BUT she only gave us the options as far as what medications he could take and her opinion on which would be best for him. When I tried to discuss PANDAS and antibiotics she gently blew me off. That is only one of my experiences with "well known" doctors who know nothing about PANDAS but want to tell you how wrong you are about your own child. It is very difficult to find someone who fits with your needs. I encourage you to keep up the good work. It will pay off in the end. Good Luck. Let us know how the appointment goes.

 

Dedee

[lfran]

My son has a very very rare opthalmologic condition, in addiiton to tics. When I was first pursing leads to opthalmologists, I called ahead of time and explained what he had, what I was looking for, and asked if the doctor we were trying to see had enough expertise in that area to make it worth both my time and the doctor's time. Sometimes I got to talk to the doc, sometimes, it went through the nurse and they called me back. One time, the nurse straight-out told me to call someone else, that that doc wasn't a good match for us (or for anyone, was the implication).

 

So, I would consider putting together a VERY brief history of your son, say that you want to explore alternative assessments/treatments, including allergy testing, and call the clinic(s) and ask if that doctor would be a good match for you. You can explain about the driving, etc, and I'm sure they will try to be helpful. I have had this work many many times.

 

-- Liane

[gfam]

Well that was a big fat waste of time. He had never heard of "any condition that was influenced or made worse at all by diet". He has no clue as to why diet triggers his episodes. He'd never heard of the Feingold diet. He told me if I wanted allergy testing done we would have to have my primary order them b/c he would have no idea what to ask for as he had no experience with diet. He said if I wanted to pursue the diet aspect affecting him that I would have to "do some research on the net". He wants and eeg & if that's normal, then we will medicate. Over my fat heiny. He is obviously triggered by diet & can start to have an episode with in minutes of eating something he shouldn't........but no, let's not pursue that peice to the puzzle. I'm so annoyed right now. I've been to two naturopaths, a chiro, a primary care doc & now a neurolgist. They all watch the video & say , wow, somethings wrong but have no clue. He did say today that it may be tourettes, but it's too soon to dx.

[ilovedogs]

Well that was a big fat waste of time. He had never heard of "any condition that was influenced or made worse at all by diet". He has no clue as to why diet triggers his episodes. He'd never heard of the Feingold diet. He told me if I wanted allergy testing done we would have to have my primary order them b/c he would have no idea what to ask for as he had no experience with diet. He said if I wanted to pursue the diet aspect affecting him that I would have to "do some research on the net". He wants and eeg & if that's normal, then we will medicate. Over my fat heiny. He is obviously triggered by diet & can start to have an episode with in minutes of eating something he shouldn't........but no, let's not pursue that peice to the puzzle. I'm so annoyed right now. I've been to two naturopaths, a chiro, a primary care doc & now a neurolgist. They all watch the video & say , wow, somethings wrong but have no clue. He did say today that it may be tourettes, but it's too soon to dx.

I'm sorry! This is one of the reasons why we haven't gone the neurologist route yet. My ped/gp wasn't too helpful either and just wanted to take a wait and see approach. I'm putting my ds through NEAT allergy treatment which is similar to NAET or BioSet. You can do some research here on this site to find out more about them. Next week we're doing foods so I'm really hoping to get some answers.

Anyway, big cyberhug out to you! Sorry it didn't go well!

Bonnie

[Tracey111]

Donna,

 

I am so sorry to hear about your experience. I found it very familiar!!

 

I just read your first post today. I would have told you that I found it to be a waste of time . They did an EEG to check for epilepsy, and then told me that there is nothing to do at this point. They told me to wait it out for one year to see if it was really TS, or just transient tics. When I asked about food/supplements they said don't bother tracking it....but if I THINK something is helping go ahead and try it! Oh and they told me that there is no way that a recent vaccine would cause these tics. They said they could offer my SIX YEAR OLD some blood pressure type (?) medicine that helps to control tics. I said no thanks!

 

So, go with their advice and research it on the net!!!!!! It has worked for most of us here. I wish you much luck...I did not read your background story, but you are in the right place!

 

Tracey

[familyof4]

I am sorry I didn't see this sooner! I am also in the Denver area and we have seen a pediatric neuro that I really liked. In adition to tics my son has cyclic vomiting syndrome which has neuro connections as well as GI. I was impressed with the neuro we saw. He didn't want to run any tests at the time - didn't think they would really tell us anything as it was clear to us and him that it was not seizure related and all the blood test parameters he wanted to review had already been done by my pediatrician. He stated that and MRI would likely be abnormal but would not show us anything that we could treat and once you have had an abnormal MRI you have to keep repeating them every 6m-year to be sure nothing changed. (We ended up going for the MRI at a later date anyway for another reason and he was right - it does show a small lesion of unknown cause that is not uncommon to observe in those with autoimmune disorders - my son has celiacs)

 

He is very against medicating children for tics - in fact told us that unless our son was old enough to ask for medication or it was such a serious impact to learning (ie couldn't hold a pencil) that he wouldn't even entertain the thought of medication as the side effects just weren't worth it. He spent loads of time with us at our appointment and months later even spent over an hour with me on the phone to discuss the results of the MRI my pediatrician had ordered.

 

I haven't been to Jewish Hospital for his tics yet but am entertaining talking with them to see if they might be helpful. They by far have the best traditional allergists in the Denver area. The previous allergist we saw totally missed my daughter's celiacs and told us it was just an allergy to wheat despite blood results that showed contrary.

 

Heather

[gfam]

Heather,

 

Please, tell me who. Please!!