Friday, August 1, 2014

Ben report - Review and update

Review 6/27/14
For some years now my dear grandson has been dealing with a syndrome called PANDAS or a later name, PANS.  The first symptoms started as totally zoning out and almost trance like.  At school he start being by himself in this state.  Then the pacing was added.  The teacher couldn't get him to stay in his seat.

That all led to my daughter taking him out of school and home schooling him.  Teaching him anything was very difficult because he would zone or pace or literally "bouncing off walls".  He was seen by a psychiatrist and psychologist all kinds of tests were done and he was put on meds for anxiety.  OCD set in and eventually, full blown raging.  The doctors had barely heard the symptom PANDAS, let alone understood what it entailed.  The school district was not cooperative at the time either, to say the least.  The whole thing was extremely difficult for the family, especially my daughter, who had to live so close to it all every day.

It turned out one of the meds caused the raging and that was stopped.  The doctors never did come up with anything that really helped toward a solution.  He has been falling behind further and further because of lost time while zoning.

Zooming forward, we heard of a study that a couple doctors at Stanford Children's Hospital were working on.  Luckily, they were just starting it.  Ben was referred to one of the doctors for an interview.  He met with the doctor and was accepted into the study.

The timing wasn't so good because one of the doctors had just gone out on maternity leave and they were so backed up.  Ben was on the waiting list to see the doctors which brings us up to this present time.  Since the doctor interview, Ben was able to attend a special school in a nearby school district.  Since the meds had been changed he didn't have a rage situation although there were times when it was rough going.

Friday, Ben was asked to meet with the Rheumatologist (the one that had been on maternity leave).  At this point it has been hard to see how Ben would be able to overcome all he time he has lost.  He still has the zoning out, some pacing, OCD issues and the like.  The doctor was so good with him and she is wanting to try all sorts of paths to get a "cure" for Ben.

By the way, by now, PANDAS/PANS is much more well known.  Actually it is looking like an epidemic, how many effected it is not yet known.  I think personally, that there are many children that are considered "problem children" that actually may have PANDAS.  Parents out there are desperate and are grasping for straws of hope.

So, back to Ben.  The doctor said that Ben totally fits the symptoms that the other 70 kids in this study have.  They are like detectives looking for patterns and trying to find out just what this is.   So, she has listed all kinds of things they are going to do.

So, these are the starting steps:
1.  Ben will be starting the antibiotics tonight, 2 pills every morning, 2 pills every night.  The rational for this is that each time these kids go through a bout of infection it puts them back and they seem like they may not be able to recover everything.  The doctor was encouraged that Ben does have times were he pops out with total lucid moments, with memories of things that we thought he had totally lost. She said that could point to hope that these kids could actually regain some of what looked gone.

2. Diet - George is going to research just what Ben can have on the Stanford FUD Diet.  Then he will start the diet.  The rational for this is that it seems there may be a connection with carbohydrates in these kids that makes bacteria bloom in the gut.  The body has to fight that bacteria while it is fighting the virus that may be causing the PANDAS.  Thus the body is fighting 2 fronts.  An evaluation of each week will be done and compare any changes, if any.

3.  Meanwhile, they will be journaling everything.  We may loose a week on this while Cathy is on the cruise but she is such a great journal-er already I am sure it will be ok.

4.  Cathy has a whole list of phone calls and scheduling to do before we leave.  She is going to be busy.  Ben has blood work to be redone, like on lime disease, MRIs to schedule, etc.

After the diet and journaling for several weeks, then the IVIG routine will be started.

Here we glad, at last, actions are being taken!!

1. The one week of the special diet did not bring on any change...although he found he loves almond milk!

2. Ben saw Dr. F at Stanford the other day.  For insurance reasons (in order to have the insurance pay for treatments) He is to be re-evaluated by his phycologist and Stanford phycologist to have a base line for the insurance.

3. Then, he is to start IVIG treatments consisting of IV injections once of week of steroids.  Doctor F has warned them that he will either improve greatly or he may go into rages.

The doctor is hopeful about Ben being able to get a lot back eventually since he still has periods of lucidity.

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