Has anyone had a CT scan on their child?

[bubbasmom]

Just like all of you, I sit here and look at my son and all of the questions run through my mind....what if I'm wrong what if its not PANDAS, why are his symptoms different than one of the other kids, will he ever get over this, will my family survive this, blah blah blah.

But has anyone ever had a CT scan/MRI? Does the basal ganglia show up on either of those scans? Is there anything else that shows up on kids scans?

My son, 2 years ago during and episode of PANDAS, did have an EEG and that showed nothing out of the ordinary.

[fifide]

Just like all of you, I sit here and look at my son and all of the questions run through my mind....what if I'm wrong what if its not PANDAS, why are his symptoms different than one of the other kids, will he ever get over this, will my family survive this, blah blah blah.

But has anyone ever had a CT scan/MRI? Does the basal ganglia show up on either of those scans? Is there anything else that shows up on kids scans?

My son, 2 years ago during and episode of PANDAS, did have an EEG and that showed nothing out of the ordinary.

Hi Bubbasmom,

When DS4 was last in hospital the neuro doc was considering doing an MRI but as it was to take an hour and a half and because of his age would be under anaesthetic she decided to wait until he was older when he wouldn't need to be asleep. She said there may be inflammation in the basal ganglia which would show up. The reason she/we decided to wait was because it wouldn't change what they are treating with even if there was inflammation.

 

Like you I have dark moments when I worry that there might be some other reason for his symptoms but she has reassured me about this.

 

Another dr said they wouldn't do a CT partly because of the radiation dose it involves and partly because it might not be sensitive to show anything up.

 

Fi

[lyme_mom]

Just like all of you, I sit here and look at my son and all of the questions run through my mind....what if I'm wrong what if its not PANDAS, why are his symptoms different than one of the other kids, will he ever get over this, will my family survive this, blah blah blah.

But has anyone ever had a CT scan/MRI? Does the basal ganglia show up on either of those scans? Is there anything else that shows up on kids scans?

My son, 2 years ago during and episode of PANDAS, did have an EEG and that showed nothing out of the ordinary.

 

I would make very sure it isn't a tick-borne illness at the root of your child's problems b/c the PANDAS treatment will not eradicate lyme or other tick borne illnesses, although it could help to be on an antibiotic. (hence some kids get better or herx but then relapse). Lyme is commonly a problem with children with PANDAS but most doctors, even PANDAS doctors, are not good at diagnosing it (unless they happen to also be tick-borne disease experts and members of ILADS). A doctor should not rely on the test results but diagnose lyme clinically especially if a child has a lot of symptoms that could be related to lyme. The tests are totally unreliable and are used to support a clinical diagnosis. You don't need a bulls eye rash to have lyme either. I would want an evaluation by an ilads doctor (ilads.org) to be sure I wasn't missing something significant. These ilads doctors know how to get rid of these complex tick-borne illnesses because this is what they treat day in and day out. You need specific combinations of antibiotics (cyst killers, broad spectrum, etc.) and possibly antimicrobials to treat lyme and the coinfections. Your family doctor, your average Infectious disease doctor, or your neurologist would not be the right doctor to determine whether lyme is a factor. Hard to believe but its true. You should read Cure Unknown by Pamela Weintraub if you want to learn more. You will realize why it is so critical to be sure lyme (and bartonella, babesia) are not factors involved in your child's health situation.

[JAG10]

Bubbasmom

 

D10 has had two normal EEGs during symptoms, several years into the syndrome and two years apart. One of her symptoms is prolonged staring/zoning out. The EEGs were ordered to rule out absense seizures. She has also had a SPECT scan which shows brain activity and her whole brain lit up over-active, but I doubt there are any docs ordering these or any conclusions being drawn from them. EEGs, normal, negative.

[bubbasmom]

LYME-MOM, I have much considered lyme disease. However, I contacted Dr. Christ's office in Columbia, Mo because they're within 2 hrs of St. Louis. But his nurse told me that with lyme they continue to get more ill as time goes on. This is not the case with my son. We see more 'flare ups' and he's not ill.

We have already had him tested, but its been 2 years. Something like 10 aspects of the test, you have to have 5 positive to consider it positive and my son had three. Also this doctor is like a 'holistic medicine' doctor, he accepts no insurance and his visits are $450. With all we've been through, that's just too much to go on a hunch. And the big question everyone asks 'did we have a western blot' and the answer is yes we did.

But it seems like you know a lot about lyme. Do you know if what I've been told is true? I'm not worried that he didn't have the bullseye rash because he doesn't get typical symptoms of anything so that wouldn't be surprising. But he has not gotten sicker and sicker. A lot of ups and downs though. If I could find a regular doctor that my insurance (UHC) would cover I'd gladly take him.

 

 

FIFIDE - Would it have made you feel any more secure if you had found the swelling in the basal ganglia? I think that's my deal right now, frankly I just want to know that he hasn't just SNAPPED! I want to know that this will get better. Because as protective as I have been to only keep in involved with PANDAS believing doctors, now I'm considering backing off on this and letting psychiatrist do their thing with 'typical' pyschological treatments like ODD, OCD, depression, etc.

[tired mom]

Just like all of you, I sit here and look at my son and all of the questions run through my mind....what if I'm wrong what if its not PANDAS, why are his symptoms different than one of the other kids, will he ever get over this, will my family survive this, blah blah blah.

But has anyone ever had a CT scan/MRI? Does the basal ganglia show up on either of those scans? Is there anything else that shows up on kids scans?

My son, 2 years ago during and episode of PANDAS, did have an EEG and that showed nothing out of the ordinary.

I have had a CT done a MRI and an EEG all of which showed nothing. Had I known then I would have requested a pet-scan. All of these tests were done when her symptoms were at there worst.

[wornoutmom]

Oh how I feel your doubt. Where I was so sure a few months ago when all his flare ups corresponded with illness, now the pattern is disappearing (unless there's some kid of chronic infection) and I go through all kinds of periods where I think I am chasing an invisible horse. We actually had a PET scan that showed inflammation of the basil ganglia and thalumus, but then I get comments like "we can say there's inflammation but not WHY" and "how does this scan differ from a scan of a child with regular OCD" and "there are lots of reasons a PET scan can show increased activity - even migraines" and "maybe we haven't gone far enough to rule out lyme". Have you had the CamKinase done? I think this may be our next step now to see which direction we need to go in. That and a response to steroid burst. I totally understand your desire to let the psychs "do their thing" after fighting so hard to try and treat your son and not seeing him get better. It's like - well maybe they can do something cause we're not having any luck here! The thing is, psychiatric meds (at least with my son) are a crapshoot just as much as PANDAS in my opinion - throw something at him and see if it works, and if it doesnt' , try something else. All this takes months unless you get lucky the first time, just like PANDAS...sorry I can't be more uplifting this morning - just know you are not alone!!

[dcmom]

Bubbasmom-

 

Sorry you are having a rough time, hang in there.

 

We were told early on by a psychiatrist that worked with Dr Swedo, NOT to bother with MRIs, etc. She said most were not sensitive enough to pick up the inflammation. In her experience it was not a worthwhile test for pandas.

 

If you have not done the Cunningham test- I think that is a good one to try....

[lyme_mom]

LYME-MOM, I have much considered lyme disease. However, I contacted Dr. Christ's office in Columbia, Mo because they're within 2 hrs of St. Louis. But his nurse told me that with lyme they continue to get more ill as time goes on. This is not the case with my son. We see more 'flare ups' and he's not ill.

We have already had him tested, but its been 2 years. Something like 10 aspects of the test, you have to have 5 positive to consider it positive and my son had three. Also this doctor is like a 'holistic medicine' doctor, he accepts no insurance and his visits are $450. With all we've been through, that's just too much to go on a hunch. And the big question everyone asks 'did we have a western blot' and the answer is yes we did.

But it seems like you know a lot about lyme. Do you know if what I've been told is true? I'm not worried that he didn't have the bullseye rash because he doesn't get typical symptoms of anything so that wouldn't be surprising. But he has not gotten sicker and sicker. A lot of ups and downs though. If I could find a regular doctor that my insurance (UHC) would cover I'd gladly take him.

 

 

FIFIDE - Would it have made you feel any more secure if you had found the swelling in the basal ganglia? I think that's my deal right now, frankly I just want to know that he hasn't just SNAPPED! I want to know that this will get better. Because as protective as I have been to only keep in involved with PANDAS believing doctors, now I'm considering backing off on this and letting psychiatrist do their thing with 'typical' pyschological treatments like ODD, OCD, depression, etc.

Every case of lyme is different so that was not good advice you got. It can take years for lyme to progress-I mean ten, twenty years in some cases. It depends on how much lyme the child has, what strain of lyme they have, what other infections the child has and how strong their immune system is. Which bands were positive? If your child had even one lyme-specific antibody and symptoms that could be lyme he should be treated. You have nothing to lose and everything to gain. I know who Dr. Crist is and he is supposed to be good. He is expensive though. My lyme doc doesn't take insurance but only charges 250 for the first appointment and 125 for followups. He is outside DC though. With a cheap flight on SW into BWI you would end up paying at least 450 to see my doc. I looked into lyme docs in St Louis for a relative there and there are some others outside St. Louis, although none right in St. Louis. Either way it is several hours drive. You can contact Ilads at contact@ilads.org and ask for a name. I think a holistic lyme MD would be great b/c that is what we have and he does other things that regular docs do not do to build up the immune system. I found the info on docs in Missouri and will PM them to you.

 

Lyme Mom

[Joan Pandas Mom]

CT's give off a lot of radiation. My S use to snowboard. He plays football now. He has had 2 CT's because of concussions in his 15 1/2 years. I found out after the fact, they are not good for children. I heard to a PET scan would show inflammation, but I think they are very, very expensive. The book, "Brain Lock" discusses the use of PET scans.

[bubbasmom]

Well, lyme-mom you convinced me. Not convinced me he has lyme, just that we have to BE SURE. And eliminate that as a possibilty. We just had the test done, I suppose it will be several days before we hear anything.

So does your child have lyme and PANDAS? Or does lyme act like PANDAS in the sense that symptoms flare up following illness? Great, that's all I need yet another disease that is unfamiliar to local doctors!!

Thanks for your important input.

 

LYME-MOM, I have much considered lyme disease. However, I contacted Dr. Christ's office in Columbia, Mo because they're within 2 hrs of St. Louis. But his nurse told me that with lyme they continue to get more ill as time goes on. This is not the case with my son. We see more 'flare ups' and he's not ill.

We have already had him tested, but its been 2 years. Something like 10 aspects of the test, you have to have 5 positive to consider it positive and my son had three. Also this doctor is like a 'holistic medicine' doctor, he accepts no insurance and his visits are $450. With all we've been through, that's just too much to go on a hunch. And the big question everyone asks 'did we have a western blot' and the answer is yes we did.

But it seems like you know a lot about lyme. Do you know if what I've been told is true? I'm not worried that he didn't have the bullseye rash because he doesn't get typical symptoms of anything so that wouldn't be surprising. But he has not gotten sicker and sicker. A lot of ups and downs though. If I could find a regular doctor that my insurance (UHC) would cover I'd gladly take him.

 

 

FIFIDE - Would it have made you feel any more secure if you had found the swelling in the basal ganglia? I think that's my deal right now, frankly I just want to know that he hasn't just SNAPPED! I want to know that this will get better. Because as protective as I have been to only keep in involved with PANDAS believing doctors, now I'm considering backing off on this and letting psychiatrist do their thing with 'typical' pyschological treatments like ODD, OCD, depression, etc.

Every case of lyme is different so that was not good advice you got. It can take years for lyme to progress-I mean ten, twenty years in some cases. It depends on how much lyme the child has, what strain of lyme they have, what other infections the child has and how strong their immune system is. Which bands were positive? If your child had even one lyme-specific antibody and symptoms that could be lyme he should be treated. You have nothing to lose and everything to gain. I know who Dr. Crist is and he is supposed to be good. He is expensive though. My lyme doc doesn't take insurance but only charges 250 for the first appointment and 125 for followups. He is outside DC though. With a cheap flight on SW into BWI you would end up paying at least 450 to see my doc. I looked into lyme docs in St Louis for a relative there and there are some others outside St. Louis, although none right in St. Louis. Either way it is several hours drive. You can contact Ilads at contact@ilads.org and ask for a name. I think a holistic lyme MD would be great b/c that is what we have and he does other things that regular docs do not do to build up the immune system. I found the info on docs in Missouri and will PM them to you.

 

Lyme Mom

[EAMom]

Just like all of you, I sit here and look at my son and all of the questions run through my mind....what if I'm wrong what if its not PANDAS, why are his symptoms different than one of the other kids, will he ever get over this, will my family survive this, blah blah blah.

But has anyone ever had a CT scan/MRI? Does the basal ganglia show up on either of those scans? Is there anything else that shows up on kids scans?

My son, 2 years ago during and episode of PANDAS, did have an EEG and that showed nothing out of the ordinary.

 

WE had an MRI....but not during a bad exacerbation (we considered it during an exacerbation, but we would have had to sedate her!). It was normal. There is a study that shows that MRI's aren't actually a very good "test" to check an individual for pandas....poor sensitivity and specificity. http://ajp.psychiatryonline.org/cgi/content/full/157/2/281

 

I know worried dad's son was in a research study with a pet scan...they did see bg enlargement.

Edited March 31, 2010 by EAMom

[peglem]

Dr.L reviewed my daughter's MRI, showed me her basal ganglia, but said you need a "volumetric" MRI (I think that's what she called it) to detect swelling or inflammation.

[fifide]

LYME-MOM, I have much considered lyme disease. However, I contacted Dr. Christ's office in Columbia, Mo because they're within 2 hrs of St. Louis. But his nurse told me that with lyme they continue to get more ill as time goes on. This is not the case with my son. We see more 'flare ups' and he's not ill.

We have already had him tested, but its been 2 years. Something like 10 aspects of the test, you have to have 5 positive to consider it positive and my son had three. Also this doctor is like a 'holistic medicine' doctor, he accepts no insurance and his visits are $450. With all we've been through, that's just too much to go on a hunch. And the big question everyone asks 'did we have a western blot' and the answer is yes we did.

But it seems like you know a lot about lyme. Do you know if what I've been told is true? I'm not worried that he didn't have the bullseye rash because he doesn't get typical symptoms of anything so that wouldn't be surprising. But he has not gotten sicker and sicker. A lot of ups and downs though. If I could find a regular doctor that my insurance (UHC) would cover I'd gladly take him.

 

 

FIFIDE - Would it have made you feel any more secure if you had found the swelling in the basal ganglia? I think that's my deal right now, frankly I just want to know that he hasn't just SNAPPED! I want to know that this will get better. Because as protective as I have been to only keep in involved with PANDAS believing doctors, now I'm considering backing off on this and letting psychiatrist do their thing with 'typical' pyschological treatments like ODD, OCD, depression, etc.

 

Bubbasmom,

I ask myself that a lot. I really don't know. When it came down to it with the advice we were getting I just felt we should wait until he didn't need the GA. That said I couldn't sleep last night worrying that it might be something else. The lack of clarity about some of his symptoms really makes me worry. My experience might be different from others but I have found the psychiatrist to be interested, caring and open to the idea of PANDAS where the neuro doc is not.

Not sure if that helps at all. I really identify with the wanting to know it will get better. We have had a long relapse this time and it would be just wonderful to get back to normality.

Take care.

Fi

[T_Mom]

I am so sorry you are going through this--

Like others have noted, we were also told that a typical MRI was not sensitive enough to pick up basal ganglia inflammation. There are (my understanding) MRI machines in certain research University settings that can--

 

We did have an MRI done, during the worst exacerbation, as the doctor wanted to rule out possible tumors, etc.