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Well, we saw the neurologist in MI yesterday Dr L had referred us to. He completely disagreed with her idea that my son may be having seizures and declined doing an EEG. He also told me he could not do an MRI as recommended due to his braces (which is what I had thought - but Dr L said it was fine - still confused on this one) and really didn't see the need as he was not concerned about tumors etc as this had been going on way too long. So he recommended a PETscan - and here is the part that floored me - IVIG if the scan shows inflammation of the basil ganglia. It was an amazing experience not to have to sit in a dr's office and have to justify PANDAS. He simply said he had seen a bit of this before, and the PET scan would show us what we need to know. I guess the tough part will be deciding what to do if the PET shows nothing. Has anyone here come back with a "normal" PET? And if we're headed to IVIG (the thought that we might be able to get this done locally just floors me!) now we need to dig into his immuno further on the tiny prayer we could get the insurance to cover some of it. If only I could get Dr T. to respond to my emails/phone calls to get this lab work, all the pieces would be in place! Does anyone know the magic trick to this? I'm starting to feel like a stalker...

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Worried Dad did a pet scan also and had inflammation.

 

I know they do mri's if needed on kids with braces, I guess they remove them. But go for the PET scan not the mri anyway, MRI's rarely show basal ganglia inflamm well, but pet scans do. If the neuro is recommending this why won't the insurance cover it. If it is not coded as PANDAS rather infammation or autoimmune inflammation then insurance should cover ivig? He can choose autoimmune encephalitis, insurance cover ivig for this, and that's what he has if he has docummented basal ganglia inflammation. Wow, is this a childrens hosp with a pet scan. How long do you have to wait to get it?

 

 

Well, we saw the neurologist in MI yesterday Dr L had referred us to. He completely disagreed with her idea that my son may be having seizures and declined doing an EEG. He also told me he could not do an MRI as recommended due to his braces (which is what I had thought - but Dr L said it was fine - still confused on this one) and really didn't see the need as he was not concerned about tumors etc as this had been going on way too long. So he recommended a PETscan - and here is the part that floored me - IVIG if the scan shows inflammation of the basil ganglia. It was an amazing experience not to have to sit in a dr's office and have to justify PANDAS. He simply said he had seen a bit of this before, and the PET scan would show us what we need to know. I guess the tough part will be deciding what to do if the PET shows nothing. Has anyone here come back with a "normal" PET? And if we're headed to IVIG (the thought that we might be able to get this done locally just floors me!) now we need to dig into his immuno further on the tiny prayer we could get the insurance to cover some of it. If only I could get Dr T. to respond to my emails/phone calls to get this lab work, all the pieces would be in place! Does anyone know the magic trick to this? I'm starting to feel like a stalker...
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Unbelievably, the scan is scheduled for next Friday. This dr is actually heading up 2 research studies on PET scans for those with Tourettes, and felt ds qualified given the long history of motor and vocal tics (though those are the least of my concerns at the moment). And the PET scan is absolutely FREE due to the study. I am probably putting the cart before the horse re: getting the insurance to pay for IVIG. We have to see what the scan shows. He just mentioned that he wasn't sure the IVIG would get covered, but I guess we can cross that bridge when we come to it - just hope it's not a long bridge!

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This is a neurologist that is studying tourettes and he recommended ivig for basal ganglia inflammation. Gosh the tides are changing. Cincinnati childrens hospital rheumotology and neurology for kids with basal ganglia inflammation(seen on mri, which means there is a ###### of a lot of inflammation) are diagnosed with either autoimmune enceph or sydehams chorea, usually insurance covers because with those type of diagnosis they don't want the liability of denying treatment. Did Dr L know he had a study going on? I wish you and your son the best, and think you are now in good hands or at least will get some documented evidence of what is going on which will lead to treatment.

Unbelievably, the scan is scheduled for next Friday. This dr is actually heading up 2 research studies on PET scans for those with Tourettes, and felt ds qualified given the long history of motor and vocal tics (though those are the least of my concerns at the moment). And the PET scan is absolutely FREE due to the study. I am probably putting the cart before the horse re: getting the insurance to pay for IVIG. We have to see what the scan shows. He just mentioned that he wasn't sure the IVIG would get covered, but I guess we can cross that bridge when we come to it - just hope it's not a long bridge!
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Unbelievably, the scan is scheduled for next Friday. This dr is actually heading up 2 research studies on PET scans for those with Tourettes, and felt ds qualified given the long history of motor and vocal tics (though those are the least of my concerns at the moment). And the PET scan is absolutely FREE due to the study. I am probably putting the cart before the horse re: getting the insurance to pay for IVIG. We have to see what the scan shows. He just mentioned that he wasn't sure the IVIG would get covered, but I guess we can cross that bridge when we come to it - just hope it's not a long bridge!

 

Can you give me the name of the Neurologist? I have two kids with a long history of TS symptoms that need a PET scan. Thankd

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This is one of the only times I can think of where I want my sons test to come back positive, it would confirm so much and hopefully provide insurance covered treatment for him so that there is some relief after years of suffering.

 

He has been fighting with the big-bad PANDAS bear for way too long.

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This is one of the only times I can think of where I want my sons test to come back positive, it would confirm so much and hopefully provide insurance covered treatment for him so that there is some relief after years of suffering.

 

He has been fighting with the big-bad PANDAS bear for way too long.

Good luck next week and best wishes. Please let us know the results whether positive or negative for basal ganglia inflammation; this is interesting.

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Good luck next week - really glad that you are getting some ideas to try. And great info - I am so glad you shared. I did not realize that a PET scan could show basil gangia inflamation. Will you please post about this experience afterwards? During an episode, our daughter has a lot of anxiety about medical stuff due to contamination issues, and I like to hear first hand about what each procedure is like so I can evaluate what she can handle. I'm going to go google right now. I would be thrilled to have this proof should she have another exacerbation.

 

Will be thinking of you next week.

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Well, apparently it is not fullproof, but IF it shows it, we have gotten somewhere. Apparently the scans are very expensive and involve IV radiation and the machines are few and far between, so not for everyone. So far, they told me it involves having an IV put in, giving them the radio active contrast and a "twighlight" sleep sedation injected through the IV to keep him still, and then basically sleeping for 90 minutes on the table while the machine does its thing. I think the hardest part for him is going to be the fact that he needs to be fasting due to the sedation. He's a 14 year old boy on Risperdal - he is rarely ever NOT eating. Low blood sugar has been one of his triggers to losing control in the past and I can only imagine the stress of doing this procedure while I tell him he can't eat all day is not likely to be a good time for all. I'll let you know more after its done and thanks to all for your thoughts..

 

 

Good luck next week - really glad that you are getting some ideas to try. And great info - I am so glad you shared. I did not realize that a PET scan could show basil gangia inflamation. Will you please post about this experience afterwards? During an episode, our daughter has a lot of anxiety about medical stuff due to contamination issues, and I like to hear first hand about what each procedure is like so I can evaluate what she can handle. I'm going to go google right now. I would be thrilled to have this proof should she have another exacerbation.

 

Will be thinking of you next week.

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Glad to hear that we can make progress. I'm new to the group and feeling a bit panicked. We have started my 8 year old son on a gluten/caesin-free diet, and we are going to begin Biocidin drops to attack the strep in his system. Since the diet, my son's small annoying tics have increased and OCD behavior as well. He has had increasing difficulty concentrating, and he seems compelled to do the very thing we have asked him not to do. I understand that the first week or so on the diet can be like this. He meets the criteria for PANDAS in every way, and now I am in search of a doctor who can help. We are in Texas, but will travel is necessary. Can anyone make a recommendation? I am very grateful to have found this group.

 

Paige

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