Do I need the neurologist?

[tantrums]

So I've spent nearly a week harassing the peds neurologist here to get my son in. The way the hospital system here works, the specialists need records and contact from your primary doctor first before scheduling. Normally, this is probably a good thing since it does weed out unecessary time for them if someone doesn't need them. But in this case, I was annoyed since there wasn't much for the ped to send them. Well, the ped contacted them as well as the immunologist.

 

Remember, I also (selfishly I feel at this point) am having major surgery on January 11th which has already been delayed several times and I'm barely functioning at this point. I won't be able to drive and for the first few weeks - even be a passenger in the car. I won't send my son to a new doctor without being there.

 

So after the ped called them and sent a letter and the immunologist did, they called me today. Actually sounding quite interested in the "little boy with PANDAS" and saying the doctor wanted him to have the next available appt. Well, that isn't until Februrary 25th! He is on the top of the cancellation list. But really, the ped is totally working with us as is the immunologist. We have the abx and the MRI is being scheduled. I'm seeing some improvement after a week of ABX, but it is up and down - no tics though for several days.

 

I'm thinking at this point - do I NEED the neurologist? The ped is clearly going out of her way to research this, contact the immunologist (who is also researching a bit as she goes along) and making sure we have whatever we could need and giving me anything I ask for. What else would the neurologist do? I still plan on going, no doubt about it, but is it worth just looking elsewhere? I do like this hospital system as the communication is very very good between all of the doctors.

[nevergiveup]

I am not sure what you mean by the neurologist says "he wants him to have the next avail appt". What else would they give him the next non avail appt? Sorry its just that these docs make me laugh at there ignorance. Lets see Feb 23 he could be in complete remission with no signs of chorea a key indicator of sydehams chorea or pandas. Its hard to diagnose these kids without seeing them. I am sorry it takes so long to get in.

[Suzan]

So I've spent nearly a week harassing the peds neurologist here to get my son in. The way the hospital system here works, the specialists need records and contact from your primary doctor first before scheduling. Normally, this is probably a good thing since it does weed out unecessary time for them if someone doesn't need them. But in this case, I was annoyed since there wasn't much for the ped to send them. Well, the ped contacted them as well as the immunologist.

 

Remember, I also (selfishly I feel at this point) am having major surgery on January 11th which has already been delayed several times and I'm barely functioning at this point. I won't be able to drive and for the first few weeks - even be a passenger in the car. I won't send my son to a new doctor without being there.

 

So after the ped called them and sent a letter and the immunologist did, they called me today. Actually sounding quite interested in the "little boy with PANDAS" and saying the doctor wanted him to have the next available appt. Well, that isn't until Februrary 25th! He is on the top of the cancellation list. But really, the ped is totally working with us as is the immunologist. We have the abx and the MRI is being scheduled. I'm seeing some improvement after a week of ABX, but it is up and down - no tics though for several days.

 

I'm thinking at this point - do I NEED the neurologist? The ped is clearly going out of her way to research this, contact the immunologist (who is also researching a bit as she goes along) and making sure we have whatever we could need and giving me anything I ask for. What else would the neurologist do? I still plan on going, no doubt about it, but is it worth just looking elsewhere? I do like this hospital system as the communication is very very good between all of the doctors.

 

I think it would be beneficial to see them and find out how they might be able to be of support. I would take the appt and then hopefully there will be a cancellation. Otherwise, when you do get there, you will find out if they will be good to have in your court and you will be a patient so they can help. We don't see our neurologist often now but if things get bad, he may work with our Ped and Immunologist.

 

Good luck!

 

Susan

[mom md]

I definitely think it is a good idea to bring them into the mix. I also think as far as getting future treatments covered they can help carry some weight. A neurologist ordering IVIG may be looked at a little differently than a pediatrician. I also think they can help guide the immunologist as far as when to continue treatment with IVIG, when to stop, and what to try next with a relapse.

I know it is frustrating. We are waitng too to get in with one here even though we know we will be doing IVIG soon. The immunologist wants his input and also thinks we may be ablt to get it covered if they both recommend it.

[tantrums]

Oh I DO plan on going to them and I did take the appt. for feb. 25th. Just wondering if I should call every day and harrass them until they get him in sooner, or try other places. The immunologist recommended CHOP or I'd just go to Dr. T. It's sadly all very complicated right now due to my surgery. If it were at all elective, I'd put it off longer, but quite honestly, I just can't do it!! If I can get out of at least some of this pain and be able to move around more, I'll be better able to take care of him.

[nevergiveup]

Yes it is important for them to see your child when the child doesn't feel well. They are more inclined to offer help and documenting system and childs appearance is important. Call and see if someone cancels. I would try to see if you can see a neurologist now. name='tantrums' date='Dec 17 2009, 08:54 PM' post='49162']

Oh I DO plan on going to them and I did take the appt. for feb. 25th. Just wondering if I should call every day and harrass them until they get him in sooner, or try other places. The immunologist recommended CHOP or I'd just go to Dr. T. It's sadly all very complicated right now due to my surgery. If it were at all elective, I'd put it off longer, but quite honestly, I just can't do it!! If I can get out of at least some of this pain and be able to move around more, I'll be better able to take care of him.

[EAMom]

If your son has any abnormal movments or tics, videotape them...in case they aren't still there in Feb.!

[Worried_Dad]

Our experience with several local pediatric neuros was just awful. We've given up on that angle locally. Then again, Dr. L and Dr. T are ped neuros and they're awesome. And our son participated in a PET scan research study with Dr. Chugani at Children's Hospital of MI and he was great, too.

 

So if you can find a good, accessible, open-minded child neurologist in your area who believes in PANDAS and accepts that diagnosis for your child, that's a big win. If they hem and haw about PANDAS being "controversial," probably not worth wasting your time.

 

Good luck!