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rtremb
09-09-2007, 12:03 PM
I am wondering if anyone's child has PANDAS (Paediatric Autoimmune Neuropsychiatric Disorder Associated with Strep) and scoliosis. Our daughter has PANDAS which developed after a very bad case of chicken pox (with cellulitis). PANDAS causes children to suddenly develop OCD. Since PANDAS is an autoimmune disorder it causes the body to begin attacking itself. I am wondering if anyone has heard of any research looking at a connection between PANDAS and scoliosis.

PANDAS was only identified recently as a medical condition - when our daughter was first diagosed, when she was eight years old (five years ago), we met a lot of resistance from the medical community. Most doctors had never heard of it. Today it is widely acknowledged as a medical condition.

Also - Chicken pox lies dormant in the spinal column for life - later some adults get shingles. I am wondering if there has been any research done into a connection between chicken pox and scoliosis.

While there appears to be a genetic predisposition to idiopathic scoliosis perhaps there are triggers like chicken pox or PANDAS which set it off? Thoughts anyone?

Karen Ocker
09-09-2007, 04:48 PM
This is all I found on a summary of PANDAS research. I could not find anything the the National Library of Medicine search combining "PANDAS and scoliosis" but my search was limited.


http://www.neurotransmitter.net/pandas.html

I did not try this search engine of the library:

http://www.ncbi.nlm.nih.gov/sites/gquery

rtremb
09-09-2007, 08:07 PM
Thanks Karen. Very informative.

We know a fair bit about PANDAS. Our daughter was quite a serious case a few years ago - now there are only minimal signs of it - thank goodness. At its peak she was almost incapable of attending school. She was given prophylatic antibiotics for about a year and a half which we decided to stop since she was no longer symptomatic.

We were just wondering if any link has been made between PANDAS and scoliosis. Probably no cure though since to date PANDAS basically has to work itself out - the body appears to eventually right itself again of the OCD symptoms and high titer counts.

If a link were found between PANDAS and scoliosis it could be a predictor of a future problem which parents could be warned about. Have to wonder if there isn't a connection between PANDAS and scoliosis since the basal ganglia is affected by PANDAS and the basal ganglia is an important part of the neurological system which is connected to the spine. We asked the surgeon about whether there might be a link but he said it would not be his job to look at this.

My husband has done some googling on this and found a connection between muscle spasm disorders and the development of scoliosis. PANDAS can cause some disorders which include muscle spasms/tics. Since PANDAS is newly identified there is a possibility no one has thought to connect these two conditions together.

If the opportunity presents itself we will mention it to Dr. Rivard in Montreal when we go to see him about the Spinecor brace - maybe he will be interested.

Karen Ocker
09-10-2007, 10:59 AM
Scoliosis is so heartbreakingly baffling. :(

We can waste a lot of energy trying to figure out the exact cause. Even if we knew the exact cause in every case we need the strength and resources to deal with the problem at hand.

rtremb
09-10-2007, 01:12 PM
Karen:

You are so right.

Ruth

structural75
09-11-2007, 10:51 AM
We can waste a lot of energy trying to figure out the exact cause. Even if we knew the exact cause in every case we need the strength and resources to deal with the problem at hand.

I just wanted to say something in response to this because those are very strong words and I don't know if we can afford to continue on the path of ignoring the source of these problems... There will never be a 'band-aid' large enough, or sophisticated enough to defeat the underlaying causes of any condition.

I don't think a search for the cause of some of these cases is a "waste of energy" by any stretch of the imagination. Imagine the number of people who could potentially be helped and avoid unfortunate circumstances in the future. It's not good enough to simply rest with the idea that the cause is unimportant and that we'll simply address the symptoms. If we don't encourage and demand that Doctors pursue both avenues (treatment of symptoms and treatment/research into cause of symptoms) we will always be at the mercy of the condition at hand.

Conventional medicine's current offering for scoliosis is purely 'crisis management'... there is very little effort to address/discover the potential causes. If we were to see medicine approaching this from both angles and we're able to find the cause in some cases, then we would actually have a target to treat... but without the cause you're merely managing it's effect... a long uphill battle at that.

If we were able to gain insight into the causes then we could develop the "strength and resources" to deal with the 'real' problem at hand.

Don't get me wrong... I think it's important to develop and utilize treatment for the current problems associated with it... but it is equally important that we don't turn our backs on the source of the problem. It's due time that medicine gets back to it's roots of treating the causes of illness and such, rather than focusing entirely on managing the symptoms. This is no small task, but necessary none-the-less.

Advocacy towards real long-term solutions should always be a top priority alongside the symptomatic treatment of existing conditions. Both are important and worth the acknowledgment.

respectfully,
structural

MacksMom
09-11-2007, 11:32 AM
Maybe the answer lies in the human genome project. It's very interesting. They have actually traced the gene sequencing for a specific type of migraine (over four generations in a family in Finland) and can predict who will get that type of "inheritable" migraine. It's really fascinating stuff.

Right now, the cost of doing a genome on a person (as evidenced by Craig Ventner who just completed his - see the news last week) is $10 million. The goal within 10 years is to lower that cost to $1000. Maybe then, the cost won't be so prohibitive and they can take families with scoliosis and compare the gene sequencing to see who is at higher risk of getting it. Of course, scoliosis is not high on many people's agendas when it comes to using research dollars to find a cure (like breast cancer, etc). One of the main reasons migraines were studied was because the royal family suffers from migraines.

Just a thought - and maybe some hope for those who are not yet on this journey that those of us on this forum are on!

Lisa
Mother to Mackenzie with a double major curve - each measuring 37 degrees

MacksMom
09-11-2007, 11:36 AM
Regarding my earlier post, I probably should have said "finding a cause" rather than "finding a cure". The interesting thing about genomes is that once you know where the gene lies, then you can start to figure out what might cure or change the outcome of someone who develops a disease, etc.

rtremb
09-11-2007, 02:28 PM
Thanks to everyone for their comments.

When our daughter came home one day from school with OCD (it was that sudden) we took her to the doctor who then referred her to a neurologist. After a barrage of tests he said he didn't know what was wrong with her but we should put her on prozac for the OCD. We flatly refused. My husband spent hours surfing the web and found PANDAS, realized this was what our daughter had and we took this back to the doctors. We met a lot of resistance at first but finally her actual condition was acknowledged, she was put on prophylatic antibiotics (to prevent further strep infection) and about a year later her condition had for the most part vastly improved. Today she has few symptoms of OCD, we are vigilant about sore throats which might be strep, getting a throat swab immediately and she is not troubled by PANDAS.

If we had not questioned the neurologist's opinion and sought answers she would be on prozac which would have been the wrong treatment. This experience does tend to make us "trouble-makers" to the doctors in that we do not accept their opinions at face value but seek answers as to why our child has a particularly health condition (i.e., scoliosis). We continue to read every medical article we can find about scoliosis, every treatment option, etc. - we wish to avoid surgery for our daughter if it is at all possible. If the PANDAS were causing the scoliosis perhaps there could be a treatment - who knows!!