Has CNS Lupus been mentioned to anyone?

[FallingApart]

In your quest to get help for your child have any of the specialists mentioned CNS Lupus to any of you? As I have said before, our ped is fabulous and fully believes that we have PANDAS. But, from all of you urging me to look into an immuno route, our ped asked one of the best child immuno docs here to look at our case. We haven't yet met with him. But our ped talked with him and of course it seems he doesn't quite believe in PANDAS. He said that DDs symptoms sounds just like CNS Lupus and that CNS Lupus responds well to repeated IVIG - we have done 2 round each 30 days apart.

 

I was wondering if anyone else has been told this and what you think. I did look it up and I will make my next post a quick summary of how it relates to PANDAS like symptoms but just wanted to get this out there to see what your thoughts are.

[FallingApart]

This excerpt is from: http://www.lupusinternational.com/Resource...ochures_09.aspx

 

I take this to say that the child can present with anxiety and behavioral issues and will respond to IVIG. I can see his point here but I am not sure I'm buying it. Would Lupus respond to abx?

 

What are the clinical manifestations of CNS lupus?

The spectrum of clinical presentations in CNS lupus is broad. The major clinical syndromes seen in CNS lupus are:

 

CNS vasculitis: This is an inflammation of the brain's blood vessels due to lupus activity. This is the most serious syndrome associated with lupus, and is one of the two specific CNS syndromes that are part of the American College of Rheumatology's criteria for defining lupus. It usually occurs early in the course of disease (over 80% of episodes occur within the first five years of disease), being seen in about 10% of lupus patients. The typical patient presents with fevers, seizures, meningitis like stiffness of the neck, and psychotic or bizarre behavior. Brain MRI may demonstrate multiple or single areas with infarcts. A spinal tap may be needed to diagnose this condition (and exclude infection), and usually shows a high number of cells, high protein level and a high synthesis rate of immunoglobulins. Anti-neuronal antibodies may be present in the serum and/or the CSF. Usually, high dose steroids and/or cytoxan are needed to treat this syndrome.

[P_Mom]

Well, I do know that Lupus is an inflammatory condition caused by abnormal antibodies in the host. CNS Lupus would then be inflammation of the brain/spinal cord. Exactly what PANDAS is....inflammation of the brain caused by abnormal antibodies...correct.? So, perhaps he believes in PANDAS and doesn't know it!

 

I do know some of the kids on this forum have been tested for ANA antibodies.....present in most Lupus patients, if not all. Some had high titers, some did not. I think, because of that, the conditions are separate and caused by different antibodies. It is always good to check, however, to make sure you are dealing with the correct condition.

 

If the doc doesn't believe in PANDAS...he would naturally think of other conditions for the cause of the behaviors.

[ShaesMom]

I believe there is at least one other child on this forum who has a doctor that is looking into the Lupus dx-I'll let that Mom give you more info.

 

Were you ever able to track down her blood work from before IVIG? If so, have you done the testing yet?

 

Overall how is she doing? Are you seeing any improvements? Hope all is well and that you are hanging in there.

 

Sam

[thereishope]

In adults, Lupus is often given as a diagnosis when they don't know what else to give...

[nevergiveup]

My daughter first presented with chorea, strange distant stare, tics, sleep issues and when she was tested by the neurologist, brain scan, heart ecco, blood work they were very concerned of lupus. Her ANA was 1 in 2650. Pretty high, high enough it made people scramble. So on to RHEUM with lung scans, kidney test, more blood test, she was evaluated every 3 months for two years. Childhood lupus is a very serious condition and the doctors didn't want to miss a thing. ( Fifteen percent of children die before age 18 ) Her ANA still remains high although does fluctuate. Basically in the end I was told by neurology and rheum, she does have an autoimmune disease (when her symptoms rose they did give steroids) but it is probably TS. The neurologist said that TS is probebly 4 different illness, one genetic, one autoimmune, one from trauma(head injury, forceps) and some developmental like pregnant mother smoking or low birthrate. The girls tend to suffer a lot from OCD also. (The SC autoimmune correlation)He also said he believes that the OCD and tics are different antibodies being over produced. This is why some kids get the OCD type presentation and others the tic presentation at different times and after different illness. He has seen TS come from staph, micoplasma Pnuenomia and strep. He is not a PANDAS believer at all. Although he knows there is an autoimmine TS. Won't treat. Works with SINGER also.

 

 

name='FallingApart' date='Sep 26 2009, 08:01 AM' post='39270']

In your quest to get help for your child have any of the specialists mentioned CNS Lupus to any of you? As I have said before, our ped is fabulous and fully believes that we have PANDAS. But, from all of you urging me to look into an immuno route, our ped asked one of the best child immuno docs here to look at our case. We haven't yet met with him. But our ped talked with him and of course it seems he doesn't quite believe in PANDAS. He said that DDs symptoms sounds just like CNS Lupus and that CNS Lupus responds well to repeated IVIG - we have done 2 round each 30 days apart.

 

I was wondering if anyone else has been told this and what you think. I did look it up and I will make my next post a quick summary of how it relates to PANDAS like symptoms but just wanted to get this out there to see what your thoughts are.

[nevergiveup]

My daughter first presented with chorea, strange distant stare, tics, sleep issues and when she was tested by the neurologist, brain scan, heart ecco, blood work they were very concerned of lupus. Her ANA was 1 in 2650. Pretty high, high enough it made people scramble. So on to RHEUM with lung scans, kidney test, more blood test, she was evaluated every 3 months for two years. Childhood lupus is a very serious condition and the doctors didn't want to miss a thing. ( Fifteen percent of children die before age 18 ) Her ANA still remains high although does fluctuate. Basically in the end I was told by neurology and rheum, she does have an autoimmune disease (when her symptoms rose they did give steroids) but it is probably TS. The neurologist said that TS is probebly 4 different illness, one genetic, one autoimmune, one from trauma(head injury, forceps) and some developmental like pregnant mother smoking or low birthrate. The girls tend to suffer a lot from OCD also. (The SC autoimmune correlation)He also said he believes that the OCD and tics are different antibodies being over produced. This is why some kids get the OCD type presentation and others the tic presentation at different times and after different illness. He has seen TS come from staph, micoplasma Pnuenomia and strep. He is not a PANDAS believer at all. Although he knows there is an autoimmine TS. Won't treat. Works with SINGER also.

 

 

name='FallingApart' date='Sep 26 2009, 08:01 AM' post='39270']

In your quest to get help for your child have any of the specialists mentioned CNS Lupus to any of you? As I have said before, our ped is fabulous and fully believes that we have PANDAS. But, from all of you urging me to look into an immuno route, our ped asked one of the best child immuno docs here to look at our case. We haven't yet met with him. But our ped talked with him and of course it seems he doesn't quite believe in PANDAS. He said that DDs symptoms sounds just like CNS Lupus and that CNS Lupus responds well to repeated IVIG - we have done 2 round each 30 days apart.

 

I was wondering if anyone else has been told this and what you think. I did look it up and I will make my next post a quick summary of how it relates to PANDAS like symptoms but just wanted to get this out there to see what your thoughts are.

[Megs_Mom]

Hi - yes, our daughter has been evaluated for Lupus based on both presentation of sudden onset OCD and high ANA levels (1:1260). So far, they have not found more evidence, but every Neurologist that we go to, including Latimer, express concern over this possiblity. They would like us to retest in a flare. It's hard to say what I dread more - but I think childhood lupus, so even though I don't think she has this - we continue to be very serious about this testing. Latimer's 3rd "data point" for dd8, was that she has Peptic Ulcers, which she also thought was evidence of inflamation and autoimmune. Apparantly, PANDAS and Lupus have a lot in common. I'd suggest it's a serious consideration for anyone on this board, to be sure that you rule out - Celiac, Lyme and Lupus. They could run along with PANDAS and just contribute - or they can create very very similar onsets.

[pixiesmommy]

We have undergone testing for Lupus for my PANDAS dd. The interesting part for us is that that was BEFORE my mother was diagnosed with Lupus and I was diagnosed with Fibromyalgia (I have all the same symptoms as my mom but tested negative, so I actually believe I am just misdiagnosed at this pt.)

 

DEFINITELY worth investigating, IMO.

 

 

Manda

[FallingApart]

It is very interesting to see that many parents on here have their own neurological problems. I, also, developed a strange neuro problem 4 days before delivering my PANDAS dd. I am scared when reading about lupus and the mention of the potential of passing lupus from the mother to the fetus. I have not yet been diagnosed with Lupus, but it is a possibility. I'm not trying to find another disease for my child, just trying to find answers....