More ?s from a clueless parent

[fiveam]

First ??

 

From what I understand, for most PANDAS kids, the symptoms tend to wane post puberty. Are there any parents here who choose not to go the abx/steroid/IVIG route and hope to ride the PANDAS symptoms out until they wane on their own? Maybe treating very conservatively w/abx and therapy but nothing more? Or is this unrealistic? I have also read that the symptoms only wane for those kids who have had some sort of treatment....would you agree w/this? How does treatment in childhood affect the outcome in adolescence?

 

Trying to figure out where to go.

 

 

Second ??

 

Is muscle mass loss or wasting common in PANDAS kids? Affecting creatinine levels?

 

Thanks!

[sf_mom]

Our family situation is that we know the cause... my girlfriend's son was in the Acute Rheumatic Fever Phase and her boyfriend's son had active strep (likely from each other) when all our kids got together for a playdate in November 2007. All children have been tested, ALL CHILDREN have elevated CaM Kinase and clinical presentation of PANDAS (some have more symptoms then others). Because one child had ARF it was probably one of the more resilient strains of strep. Many of the children involved also have deficient immune systems. We view our children as physically sick and along with that physical illness are psychiatric symptoms. I do not view this as a genetic predisposition because my children are not fully biologically related nor are the other children who attended playdate. I feel it is the age and state of immune system at time of exposure that creates susceptibility. For our family the risks were way to high not to treat knowing what we know. Not all children outgrow Tourette's, OCD (potentially PANDAS) and many children go on to suffer co-morbid illnesses like depression and bi-polar.

 

Our older son has had 3 IVIG treatments and is currently 98% well. We remain focused on 100% and continued remission. Our son just turned 6 and he was unknowingly sick since he was 3.75. IN many areas that we did not realize were related to PANDAS he is 130% better. He is happy. I will be forever grateful to the Dr.'s who have helped him get there.

 

Our younger twins have numerous abnormal labs with immune deficiencies but are thriving on antibiotics much better than they have been. We will consider IVIG for them in the next six months if things do not resolve with their immune system.

 

Our daughter went from the 40% to the 7% for weight... She eats normally and I believe the drop was due her system using all its energy to fight her current condition.

 

I would consult with a PANDAS expert, specifically Dr. K who has been treating the longest to discuss 'conservative route of treatment' for more specific outcomes.

 

-Wendy

 

 

 

 

First ??

 

From what I understand, for most PANDAS kids, the symptoms tend to wane post puberty. Are there any parents here who choose not to go the abx/steroid/IVIG route and hope to ride the PANDAS symptoms out until they wane on their own? Maybe treating very conservatively w/abx and therapy but nothing more? Or is this unrealistic? I have also read that the symptoms only wane for those kids who have had some sort of treatment....would you agree w/this? How does treatment in childhood affect the outcome in adolescence?

 

Trying to figure out where to go.

 

 

Second ??

 

Is muscle mass loss or wasting common in PANDAS kids? Affecting creatinine levels?

 

Thanks!

[Buster]

Hi FiveAm,

 

From what I understand, for most PANDAS kids, the symptoms tend to wane post puberty. Are there any parents here who choose not to go the abx/steroid/IVIG route and hope to ride the PANDAS symptoms out until they wane on their own? Maybe treating very conservatively w/abx and therapy but nothing more? Or is this unrealistic? I have also read that the symptoms only wane for those kids who have had some sort of treatment....would you agree w/this? How does treatment in childhood affect the outcome in adolescence?

On the post puberty, no one really knows. By puberty, most kids have strong immune responses to GABHS and other illnesses and the incidence of GABHS drop off significantly. Peak prevalence of GABHS in children is between 5 - 10 years of age. So one of the items being measured could just be less exposure.

 

Is muscle mass loss or wasting common in PANDAS kids? Affecting creatinine levels?

If you are having creatinine level changes, you should be paying very close attention to whether your child is eating appropriately. Anorexia Nervosa is associated with PANDAS and was the primary scary symptom in our case. Go after this really aggressively as this is absolutely life threatening if your child's body weight is dropping rapidly. Not kidding, this is nothing to mess around with.

 

Onset of Anorexia Nervosa and restrictive eating in children < 10 is extremely rare and almost always medical in cause. Whether Anorexia Nervosa in children between 10-17 is also medical in cause is unknown -- but AN is an OCD manifestation. The obsession can literally kill the child. I don't want to be alarmist and perhaps you were asking a more innocent question (or your child is older), but if this is Anorexia Nervosa or Bolemia get on it immediately.

 

Buster

Edited April 24, 2010 by Buster

[Buster]

empty

Edited April 24, 2010 by Buster

[fiveam]

Hi FiveAm,

 

From what I understand, for most PANDAS kids, the symptoms tend to wane post puberty. Are there any parents here who choose not to go the abx/steroid/IVIG route and hope to ride the PANDAS symptoms out until they wane on their own? Maybe treating very conservatively w/abx and therapy but nothing more? Or is this unrealistic? I have also read that the symptoms only wane for those kids who have had some sort of treatment....would you agree w/this? How does treatment in childhood affect the outcome in adolescence?

On the post puberty, no one really knows. By puberty, most kids have strong immune responses to GABHS and other illnesses and the incidence of GABHS drop off significantly. Peak prevalence of GABHS in children is between 5 - 10 years of age. So one of the items being measured could just be less exposure.

 

Is muscle mass loss or wasting common in PANDAS kids? Affecting creatinine levels?

If you are having creatinine level changes, you should be paying very close attention to whether your child is eating appropriately. Anorexia Nervosa is associated with PANDAS and was the primary scary symptom in our case. Go after this really aggressively as this is absolutely life threatening if your child's body weight is dropping rapidly. Not kidding, this is nothing to mess around with.

 

Onset of Anorexia Nervosa and restrictive eating in children < 10 is extremely rare and almost always medical in cause. Whether Anorexia Nervosa in children between 10-17 is also medical in cause is unknown -- but AN is an OCD manifestation. The obsession can literally kill the child. I don't want to be alarmist and perhaps you were asking a more innocent question (or your child is older), but if this is Anorexia Nervosa or Bolemia get on it immediately.

 

Buster

 

Buster,

 

We have an appt w/Dr. Latimer this coming thurs. Yes, I am worried sick about my son but his history is so tangled I am almost at a standstill as to whom to turn to. Ped says CBC and other bloodtests were normal even w/highs and lows. Creatinine was 0.43. normal range: 0.66-1.25 Ped said no big deal. Ped GI did these tests, saw my son at 13.5 bmi has not contacted me. We have a follow-up appt mid may.

 

My son has restricted his diet since he was about 18 mos. It used to be all sensory, smell, taste, appearance....texture made him gag. He's been seen by therapists, specialists of various kinds, feeding clinics etc etc.

 

More recently (last 2 yrs) it has been more a fear of swallowing objs, choking etc. He has been maintaining his growth height-wise 40th-50th percentile. For the past yr he's had a diarrhea/constipation cycle that wouldn't go away. His diet was largely cheese. It was making him feel sick....he's just about given up the cheese but hasn't replaced it w/anything. His weight went down. He caught a cold from the hospital when we went to get the bloodtests done....sort of a blessing because he couldn't smell the neocate I've added to his smoothie. He gets a multivit/min and the neocate, fats, protein, veggie juice, anything I can stuff into the smoothie w/out it being detected. This smoothie is his lifeline. He actually licked some vegetables yesterday because he liked their color. He does this occasionally but will never consent to putting these food items in his mouth and would certainly never ingest them. I gave up nagging long ago...4 yrs ago? He's 6.5 yrs now. I have never seen him look so thin. He cannot grip my hand w/any strength and there doesn't appear to be any strength in his arms. We will be going back to the ped next week. I'm thinking it has to be neuromuscular, autoimmune, PANDAS (?), something?

 

The reason I am asking about the treatments for PANDAS is that I keep reading how people need to keep putting their kids thru courses of abx, steroids, IVIG etc and yet PANDAS still returns w/a vengeance. My son does not tolerate abx well and I HATE steroids. So I guess I was hoping that once we hit a certain age maybe he will outgrow PANDAS (if he has this)...yes, I'm naive.

[EAMom]

which antibiotics has your son been on? Just b/c he doesn't tolerate one type (eg augmentin or amoxcillin) doesn't mean he won't do well on another (eg. azithromycin)

 

I know nobody wants to think about their child being on long term abs, but given the risks of not doing so (mental illness, anorexia) the decision to keep a PANDAS child on abs, it's a no brainer (ha--no pun intended) for the majority of parents. Think of PANDAS as "rheumatic fever of the brain" (that's what the rheumtologist we saw called it)...you wouldn't think twice about keeping a child on long term antibiotics to protect his heart, his brain shouldn't be any different.

 

I don't want to say that antibiotics alone is a cut and dry cure for PANDAS, b/c it's not, and many end up needing more (eg. IVIG, plasmapheresis)....but it's definitely a really important first step in treatment.

 

I can honestly say that my dd would be dead (or at least repeatedly hospitalized) b/c of malnutrition/anorexia if it were not for the Azithromycin she's been on for the past 2 years.

 

I should also add that Swedo once said these kids have a good prognosis (long term) if treated. The implication being, if there are not treated as children, they are less likely to do well post puberty.

Edited April 24, 2010 by EAMom

[fiveam]

which antibiotics has your son been on? Just b/c he doesn't tolerate one type (eg augmentin or amoxcillin) doesn't mean he won't do well on another (eg. azithromycin)

 

I know nobody wants to think about their child being on long term abs, but given the risks of not doing so (mental illness, anorexia) the decision to keep a PANDAS child on abs, it's a no brainer (ha--no pun intended) for the majority of parents. Think of PANDAS as "rheumatic fever of the brain" (that's what the rheumtologist we saw called it)...you wouldn't think twice about keeping a child on long term antibiotics to protect his heart, his brain shouldn't be any different.

 

I don't want to say that antibiotics alone is a cut and dry cure for PANDAS, b/c it's not, and many end up needing more (eg. IVIG, plasmapheresis)....but it's definitely a really important first step in treatment.

 

I can honestly say that my dd would be dead (or at least repeatedly hospitalized) b/c of malnutrition/anorexia if it were not for the Azithromycin she's been on for the past 2 years.

 

I should also add that Swedo once said these kids have a good prognosis (long term) if treated. The implication being, if there are not treated as children, they are less likely to do well post puberty.

 

Thank-you for your reply. I guess that's really what I'm curious about "The implication being, if there are not treated as children, they are less likely to do well post puberty." Let's say your child is dx'd w/PANDAS and goes through rounds of abx and IVIG and the symptoms still recur. Are these children partially improved or does the PANDAS comes back as if never treated....i.e. do parents find their children to be 75% improved and they want 100% or are they improved and then the symptoms recur as if never treated?? Then when the child gets older the symptoms become milder or cease (if this is possible)...my question is how did the treatment in early childhood have a bearing on what occurred at puberty?

 

I want to say I am not arguing w/the treatment...I certainly don't know enough to argue....I'm just trying to understand, so if my statements appear to be negative or argumentative they are NOT intended to be. Just trying to understand. I have a feeling that if my son is dx'd w/PANDAS he's going to be one of the recurring cases so I'm trying to prepare myself.

[T_Mom]

Good questions all--Here is the deal from where I sit--

My d had sudden onset OCD hit her and debilitate her life. The effect was devastating. It was termed an "OCD storm". (Think: Blizzard/Whiteout). No laughing matter-- affected her LIFE, her relationships, her schoolwork (A's to F's), etc. She was not the same child -- and for no obvious reason.

 

What to do? TRY something-- Try to fix it, to erradicate it from her life, to heal her up --

Searching for help--16+ doctors in one year, MRI, bloodwork, etc. etc.

 

Is it worthwhile to TRY to treat Pandas you ask? -- YOU BET! It is treatable, it may be complicated along the way, some kids may need ongoing treatment, re-treatment, expertise, but YES, Pandas can be treated--and it is worth it.

 

I entirely agree with EAMom -- Many of us have had to try different antibiotics-- before we found one that helped to get rid of the OCD/tics associated with Pandas.

 

I am so sorry you have encountered this difficult eating pattern with your son. I am sure you have seen numerous eating specialists with a focus on younger children, in the area?

 

Very scary, I know. Children's Hospital in DC has a team that saw our d who was 9 at the time, we saw the team there for sudden onset anorexia+obsessive exercising...I do not know if they deal with younger children as well--I hope you can get help for this soon--I hope Dr L can help. All the best to you--

Edited April 26, 2010 by T.Mom

[kimballot]

Hi Fiveam - BTW- I love your username! Wish I would have thought of that one!

 

It sounds like you are very concerned about the long term treatment for your child and not wanting to put your child through unnecessary treatments. I am SO with you on that one! How do we know what is right for our children and what the best course is. If we had known about PANDAS 50 years ago we would have some scientific studies of efficacy. We would know what percentage of children do well with augmentin vs. azith vs. no antibiotics. We would have patterns of children that would make up subgroups of PANDAS and we could give names to those subgroups and know the best ways to treat each subgroup. That the kind of evidence-based practice that families facing other disorders work with.

 

Unfortunately, I've come to accept that we do not have that luxury. We are creating the evidence. As I've followed people on this forum I've come to recognize some of the patterns, but I am far from an expert on PANDAS (other than my own son's). The PANDAS experts (Dr.L, Dr.B, Dr.K, Dr. T, etc) do seem to recognize the patterns, and Buster has posted a flowchart of how diagnosis and treatment are often made.

 

My son's PANDAS is very different from your child's. We do not deal with food refusal - in fact we deal with compulsive eating (which I never see others talking about). But I have worked with children with sensory issues with anorexia and it is very scary for the parents, so I can only imagine the fear and weight you must be feeling.

 

I can tell you that when my son was younger he lived on antibiotics and it was not something that we planned because we did not know he had PANDAS at that time. At the time we did not know that he was harboring bacteria in his tonsils (because he never had a positive strep test)- once we figured that out we had them removed at age 7. Now he has only 4 courses of high dose antibiotics and no prophylaxis in the last 6 years and has done fairly well (until H1N1 this year!).

 

I am telling you this because when my son was 6 1/2 he was at his lowest point ever. I was on the internet every night at 5 am searching for answers. I could not imagine that he would ever come off antibiotics or that he would ever have a meaningful life. He did not want to live. He tried to run into the street at school in hopes of being hit by a car. I was afraid to leave the house when he was home because I did not think my husband or anyone else would watch him closely enough. I thought we would have to start him on strong psychotropic medications just to keep him from hurting himself.

 

A friend of mine who had 5 children - all with special needs - told me to take a deep breath and just think about today. What did I need to do to help him today. She said that if she thought about the future for each of her kids, she would become depressed and anxious and be of no help to anyone. I must admit that I am not perfect at doing this - and I am still often googling at all hours of the night - but I try to focus on today and what I need to deal with today. Today my son is really a pretty typical, happy, funny kid most of the time and really is not on antibiotics all the time. We have some new problems since H1N1, but we are dealing with those, and he has some new immunodeficiencies so we are starting to think about IVIG. He has friends and likes to skateboard and is a great kid, with some problems that pop up from time to time.

 

Today you need to deal with your son's anorexia and today you are preparing for an appointment with a PANDAS expert. That is a good thing. I hope you will post and let us know how it goes. I wish you all the best -

Edited April 26, 2010 by kimballot

[fiveam]

Good questions all--Here is the deal from where I sit--

My d had sudden onset OCD hit her and debilitate her life. The effect was devastating. It was termed an "OCD storm". (Think: Blizzard/Whiteout). No laughing matter-- affected her LIFE, her relationships, her schoolwork (A's to F's), etc. She was not the same child -- and for no obvious reason.

 

What to do? TRY something-- Try to fix it, to erradicate it from her life, to heal her up --

Searching for help--16+ doctors in one year, MRI, bloodwork, etc. etc.

 

Is it worthwhile to TRY to treat Pandas you ask? -- YOU BET! It is treatable, it may be complicated along the way, some kids may need ongoing treatment, re-treatment, expertise, but YES, Pandas can be treated--and it is worth it.

 

I entirely agree with EAMom -- Many of us have had to try different antibiotics-- before we found one that helped to get rid of the OCD/tics associated with Pandas.

 

I am so sorry you have encountered this difficult eating pattern with your son. I am sure you have seen numerous eating specialists with a focus on younger children, in the area?

 

Very scary, I know. Children's Hospital in DC has a team that saw our d who was 9 at the time, we saw the team there for sudden onset anorexia+obsessive exercising...I do not know if they deal with younger children as well--I hope you can get help for this soon--I hope Dr L can help. All the best to you--

 

T. mom,

 

Thank-you for your input. My head is spinning. You see, most people seem to have these very easily discernible patterns...your daughter, one day A's the next day F's. and it's almost like day and night. IF my son has PANDAS it happened either somewhere around 18 mos-2 yrs when he was transitioning to table foods or he had a sensory integration disorder early on and PANDAS hit on top of this when OCD symptoms started showing up when he was 5. My son has had a feeding disorder since he was 18 mos but no one, not me, the therapists, the specialists who saw my son in the ER at CHOP (children's of Philly) ever saw OCD as part of it. "It" has morphed from a SID to OCD. We moved from NC to PA and we recently (last couple of months have moved to NOVA) . We were seen by therapists in NC and PA and while my son has overcome a LOT of sensory stuff, he can actually brush his teeth and swing on a swing, his eating has never improved. I am starting to think, odd as it may sound, that he doesn't need a feeding clinic but he needs some sort of anti-anxiety therapy....is there a name for this?

 

Also if he has PANDAS will he have an interest in eating following a course of abx (too easy)....how do children who have become anorexic (don't think this is the right term for my son but the results have been the same)fare w/eating after treating the PANDAS?

 

I am not really asking if PANDAS should be treated, treatment has worked for so many children, I'm just trying to get a handle on what exactly the treatment does.

 

Thanks again for your support!

[fiveam]

Hi Fiveam - BTW- I love your username! Wish I would have thought of that one!

 

It sounds like you are very concerned about the long term treatment for your child and not wanting to put your child through unnecessary treatments. I am SO with you on that one! How do we know what is right for our children and what the best course is. If we had known about PANDAS 50 years ago we would have some scientific studies of efficacy. We would know what percentage of children do well with augmentin vs. azith vs. no antibiotics. We would have patterns of children that would make up subgroups of PANDAS and we could give names to those subgroups and know the best ways to treat each subgroup. That the kind of evidence-based practice that families facing other disorders work with.

 

Unfortunately, I've come to accept that we do not have that luxury. We are creating the evidence. As I've followed people on this forum I've come to recognize some of the patterns, but I am far from an expert on PANDAS (other than my own son's). The PANDAS experts (Dr.L, Dr.B, Dr.K, Dr. T, etc) do seem to recognize the patterns, and Buster has posted a flowchart of how diagnosis and treatment are often made.

 

My son's PANDAS is very different from your child's. We do not deal with food refusal - in fact we deal with compulsive eating (which I never see others talking about). But I have worked with children with sensory issues with anorexia and it is very scary for the parents, so I can only imagine the fear and weight you must be feeling.

 

I can tell you that when my son was younger he lived on antibiotics and it was not something that we planned because we did not know he had PANDAS at that time. At the time we did not know that he was harboring bacteria in his tonsils (because he never had a positive strep test)- once we figured that out we had them removed at age 7. Now he has only 4 courses of high dose antibiotics and no prophylaxis in the last 6 years and has done fairly well (until H1N1 this year!).

 

I am telling you this because when my son was 6 1/2 he was at his lowest point ever. I was on the internet every night at 5 am searching for answers. I could not imagine that he would ever come off antibiotics or that he would ever have a meaningful life. He did not want to live. He tried to run into the street at school in hopes of being hit by a car. I was afraid to leave the house when he was home because I did not think my husband or anyone else would watch him closely enough. I thought we would have to start him on strong psychotropic medications just to keep him from hurting himself.

 

A friend of mine who had 5 children - all with special needs - told me to take a deep breath and just think about today. What did I need to do to help him today. She said that if she thought about the future for each of her kids, she would become depressed and anxious and be of no help to anyone. I must admit that I am not perfect at doing this - and I am still often googling at all hours of the night - but I try to focus on today and what I need to deal with today. Today my son is really a pretty typical, happy, funny kid most of the time and really is not on antibiotics all the time. We have some new problems since H1N1, but we are dealing with those, and he has some new immunodeficiencies so we are starting to think about IVIG. He has friends and likes to skateboard and is a great kid, with some problems that pop up from time to time.

 

Today you need to deal with your son's anorexia and today you are preparing for an appointment with a PANDAS expert. That is a good thing. I hope you will post and let us know how it goes. I wish you all the best -

 

Kim,

 

Thanks for your input and advice! I TRY to focus on the day ahead. I homeschool my 3 kids. My eldest has asperger's, my middlest (well, he's the one we're discussing here), and my youngest...oddly enough this little monster came into the world weighing 1.5lbs and she's the most "typical" of the 3...she eats everything, she sleeps by herself, she has tantrums but they don't last all day! Right now, however, I actually get up at 4am so I can mix up my son's smoothie...he still thinks he's drinking rice milk/hemp milk...if he thought any differently he wouldn't consume it!

 

I think I'm going to take myself off the computer til after thurs except for the weather channel I'm going to take your advice. Work on lists. Focus on teaching maths. Focus on one step at a time. Going to put the CBC results in a folder and not look at them til I hand them to Dr L.

 

Thank-you Kim, you've given me permission to shelf my worries for a few days!

[T_Mom]

Fiveam--with the eating issues she "got better" suddenly, the anorexia appeared to come suddenly and almost leave just as suddenly 3 months later--entirely weird. Then 6 months later the OCD storm hit--and THAT was alleviated by long term full strength antibiotics.

 

In our case, the use of antibiotics and steroids were a relatively BENIGN treatment considering the alternatives! (meds.)

thankful it worked.

 

Does your child have sensory integration issues and is he on the autism spectrum? Stanley Greenspan has done some incredible work with kids with sensory integration issues and has a clinic in the Washington DC area--pm me if you want to know a bit more.

Take care--

Edited April 27, 2010 by T.Mom