Frustrated after meeting "specialist"

[Kayanne]

My 6 yr old daughter started all-day kindergarten this year, and was doing very well. When I met with her teacher at the first marking period in November 2008 she said, “This conference is 100% positive.” As the year progressed, there was nothing to indicate that there were any problems.

Starting on March 11, 2009, she has had four rapid-strep tests come back as positive. She has been given OMNICEF, AMOXICILLIN, AUGMENTIN combined with RIFAMPIN, and finally CLINDAMYCIN.

We are awaiting the results of a throat culture taken on May 22—the doctor’s office opens on Tuesday—although I will try to call tomorrow.

We started to get "frustrated" with her sometime around the middle/end of March, beginning of April for the following behaviors (some were not new):
• She began to confess thoughts, and things that were very minor. She had excessive and unjustified guilt (this was not new, however it was more pronounced).
• She would be very emotional. She would have a crying "fit" over something very small, and refuse to tell us why. (This also was not a new behavior; however, in the past, we always knew what she was crying about. This time it was much more frequent...and actually, she hadn’t had a “fit” in a long time.)
• She couldn't make a decision--she wouldn't choose between two things, she wouldn't say "yes" or "no". She kept saying "maybe, I don't know" or "maybe, yes or maybe no." (completely new behavior)
• She began to take a really long time in the bathroom, and she would just frequently sit and cry...we needed to tell her to finish up. (Completely new behavior).
Because some of her behaviors were not new, and my husband and his family have a history of anxiety (and as a child he had a problem with excessive guilt), we were not alarmed right away.

April 21, 2009--I was approached by my daughter's teacher because she was concerned that ever since she came back from Easter Break (April 14, 2009) there has been a real change in her behavior.

That really got the ball rolling. We met with her doctor, teacher and school counselor. We met with and set up appointments with a cognitive behavioral therapist.

The pediatrician told us about PANDAS, and he believed some of her behavior could be thought of as obsessive thoughts. Blood tests were ordered, and she was found to have a high strep titer count.

We were referred to CHOP (Children’s Hospital of Philadelphia). The appointment was set up with the Infectious Diseases specialist. I called down to CHOP to be sure that this was the right department for PANDAS. I was assured that it was.

May 22, 2009—we went to CHOP. First we met with 2 female residents. We gave them her medical file, lab results and emails from her kindergarten teacher. We also spoke at length about her changes in behavior. However, they really kept steering us back to medical history. Then they examined her, and left to confer with the specialist. The doctor then came in with an additional resident (specialist and 3 residents) and did his own examination of my daughter. She passed with flying colors.

His professional opinion was that because she didn’t meet the criteria set out by Susan Swedo he doesn’t believe that she has PANDAS. He said to set her up with a pediatric psychiatrist.

He then began to explain that either way, there is no real treatment. IVIG and Plasmapheresis are very risky with side effects, and not really helpful. And the use of long term antibiotics has not been proven to be effective—based on some study that switched from antibiotics to a placebo, only to find no change in behavior.

Needless to say, my husband and I are beyond frustrated—we “wasted” time waiting for this appointment to see a specialist about PANDAS. Only to be told that even if she did have it, there is nothing he can do…Why would you even meet and examine a child with possible PANDAS, if you know that there is no course of treatment? I feel like she was used as a lab rat, and that we got nothing but a “brush off”.

What do I do from here? My heart is telling me that this is PANDAS!

I’m really scared. Her behaviors seem to have worsened. She is really jumpy/startles easily. She seems to have difficulty with short term memory. She needs to be prompted to do everything. She just stares into space. I tried to get her to draw or write, and she couldn’t do that unless I told her each word to write. She will run and laugh with her younger brother, but that is the extent of her playing.

Over the weekend, we met with my husband’s family at a campground for a few hours, and she wouldn’t play on the playground without a lot of coaxing. Many members of the family could easily see the changes in her.

Does anyone have any input? I would greatly appreciate it. I live North of Philadelphia, PA.

Thank you!!

 

- edited on to remove personal information

Edited August 8, 2013 by Kayanne

[T_Mom]

I am so sorry that your daughter has been going through this terrible spring. The first question that occurs to me is has she ever been "free" from strep during these 4 incidents in the spring?

 

Was there antibiotic effect?

 

If she is again showing positive this week would Azithromycin be considered? Many on this forum have found that long-term antibiotics (a month full strength) have had a positive effect, on resistant strep as well as OCD and "PANDAS" issues. I would assume full bloodwork has been run to rule out other issues?

 

My own opinion, with our daughter, is that when we saw a marked improvement with antibiotics (in our case Amoxicillan) weekly improvement in a diminishing of OCD "stuff" that it was NOT anxiety of some type. The fact that anxiety may "run in the family" as you say may be a reflection on familial inherited susceptibility to physical issues, though no reason to accept it.

 

If the teacher is commenting, other family members noticing, and you are concerned, you are right to be searching for some answers, keep going--

[michele]

It is not unusual to get turned away from Dr.'s on this diagnosis. I was dismissed on Fri. from a ped neuro who was suggested from TSA for specializing in OCD and Aspergers, but she doesn't believe in PANDAS. She told me to stick with the psychiatrist. I have seen probably 15 specialist and most of them didn't want to do a thing. The latest trend seems to be sending these cases to psychiatrist. I am taking him to two right now. However beware they will precribe meds for the moods and symptoms. Then they suggest CBT with a psychologist. The neurologist can help with tic meds but when things get complicated will pass you on to a psychiatrist. In all the Dr's I taken him to, only two would give the antibiotics and none the Azith lots of people here are using. The neuro on Fri was really against the antibiotics and the harm they could do. She had a full report from an immunologist we had seen at her hospital. She said he took a long time to research my son's case and had passed and he was one of the best on immune research. Baloney! He went to Case to study fulltime and he wrote me the script for antibiotics too. I probably could have gotten Azith from him.

Just document everything as you did here. It will most likely take more then one episode to get Dr's attention. My son has been having this for six years. Dr's are not on the same page. There are a few that believe in IVIG and plasma therapy and steroid bursts. Dr. K is a good consult at web pediatrics, Dr, Leckman at Yale, Dr. Latimer in Maryland. I pray you won't need them.

 

Your child's symptoms will probably last a few months until the antibodies go down. Each epsiode typically is 4-8 weeks for us. Maybe you'll be a one time episode. I have known some that have gotten better. As we have gone along with this illness things have progressed and gotten worse and more Aspergers/Tourettes like. Now they are daily behaviors. Our Dr's wanted to wait and see since my son was so young when he got this.

 

Dr. Leckman is doing research with Dr. K right now so maybe we will have more answers for Dr's on what works soon. Right now Dr's are desputing if it is a real diagnosis and many are not willing to put out their necks to help and few want to do what is not suggested by NIMH. Keep us posted. Stick with this board because it will keep you up to date on what is out there. By the way my son is 7 and the stress of school really made his symptoms worse in kindergarten coupled with strep exposures. Stress makes things wosen for these kiddos. Also, many of these PANDAS kids have a gentic history of anxiety disorders in their families.

 

Michele

My 6 yr old daughter, Becca, started all-day kindergarten this year, and was doing very well. When I met with her teacher at the first marking period in November 2008 she said, “This conference is 100% positive”. As the year progressed, there was nothing to indicate that there were any problems.

 

Starting on March 11, 2009, she has had four rapid-strep tests come back as positive. She has been given OMNICEF, AMOXICILLIN, AUGMENTIN combined with RIFAMPIN, and finally CLINDAMYCIN.

 

We are awaiting the results of a throat culture taken on May 22—the doctor’s office opens on Tuesday—although I will try to call tomorrow.

 

We started to get "frustrated" with her sometime around the middle/end of March, beginning of April for the following behaviors (some were not new):

• She began to confess thoughts, and things that were very minor. She had excessive and unjustified guilt (this was not new, however it was more pronounced).

• She would be very emotional. She would have a crying "fit" over something very small, and refuse to tell us why. (This also was not a new behavior; however, in the past, we always knew what she was crying about. This time it was much more frequent...and actually, she hadn’t had a “fit” in a long time.)

• She couldn't make a decision--she wouldn't choose between two things, she wouldn't say "yes" or "no". She kept saying "maybe, I don't know" or "maybe, yes or maybe no." (completely new behavior)

• She began to take a really long time in the bathroom, and she would just frequently sit and cry...we needed to tell her to finish up. (Completely new behavior).

Because some of her behaviors were not new, and my husband and his family have a history of anxiety (and as a child he had a problem with excessive guilt), we were not alarmed right away.

 

April 21, 2009--I was approached by her teacher because she was concerned that ever since Becca came back from Easter Break (April 14, 2009) there has been a real change in her behavior.

 

That really got the ball rolling. We met with her doctor, teacher and school counselor. We met with and set up appointments with a cognitive behavioral therapist.

 

The pediatrician told us about PANDAS, and he believed some of her behavior could be thought of as obsessive thoughts. Blood tests were ordered, and she was found to have a high strep titer count.

 

We were referred to CHOP (Children’s Hospital of Philadelphia). The appointment was set up with the Infectious Diseases specialist. I called down to CHOP to be sure that this was the right department for PANDAS. I was assured that it was.

 

May 22, 2009—we went to CHOP. First we met with 2 female residents. We gave them her medical file, lab results and emails from her kindergarten teacher. We also spoke at length about her changes in behavior. However, they really kept steering us back to medical history. Then they examined Becca, and left to confer with the specialist. The doctor then came in with an additional resident (specialist and 3 residents) and did his own examination of Rebecca. She passed with flying colors.

 

His professional opinion was that because she didn’t meet the criteria set out by Susan Swedo he doesn’t believe that she has PANDAS. He said to set her up with a pediatric psychiatrist.

 

He then began to explain that either way, there is no real treatment. IVIG and Plasmapheresis are very risky with side effects, and not really helpful. And the use of long term antibiotics has not been proven to be effective—based on some study that switched from antibiotics to a placebo, only to find no change in behavior.

 

Needless to say, my husband and I are beyond frustrated—we “wasted” time waiting for this appointment to see a specialist about PANDAS. Only to be told that even if she did have it, there is nothing he can do…Why would you even meet and examine a child with possible PANDAS, if you know that there is no course of treatment? I feel like Becca was used as a lab rat, and that we got nothing but a “brush off”.

 

What do I do from here? My heart is telling me that this is PANDAS!

 

I’m really scared. Her behaviors seem to have worsened. She is really jumpy/startles easily. She seems to have difficulty with short term memory. She needs to be prompted to do everything. She just stares into space. I tried to get her to draw or write, and she couldn’t do that unless I told her each word to write. She will run and laugh with her younger brother, but that is the extent of her playing.

 

Over the weekend, we met with my husband’s family at a campground for a few hours, and she wouldn’t play on the playground without a lot of coaxing. Many members of the family could easily see the changes in her.

 

Does anyone have any input? I would greatly appreciate it. I live North of Philadelphia, PA.

 

Thank you!!

[Kayanne]

I am so sorry that your daughter has been going through this terrible spring. The first question that occurs to me is has she ever been "free" from strep during these 4 incidents in the spring?

 

Was there antibiotic effect?

 

If she is again showing positive this week would Azithromycin be considered? Many on this forum have found that long-term antibiotics (a month full strength) have had a positive effect, on resistant strep as well as OCD and "PANDAS" issues. I would assume full bloodwork has been run to rule out other issues?

 

My own opinion, with our daughter, is that when we saw a marked improvement with antibiotics (in our case Amoxicillan) weekly improvement in a diminishing of OCD "stuff" that it was NOT anxiety of some type. The fact that anxiety may "run in the family" as you say may be a reflection on familial inherited susceptibility to physical issues, though no reason to accept it.

 

If the teacher is commenting, other family members noticing, and you are concerned, you are right to be searching for some answers, keep going--

I have 4 children, and 3 of them have tested positive for strep 3 times (rapid-strep test). She is the only one who tested positive a fouth time. After the second round of positive strep tests, I asked if I should return for a follow-up, and I was told no. By the third round, the kids were put on Rifampin, and I was told that would take care of it. I even had my sons (ages 4 & 1-1/2) in for their well visits after the my 4 year old finished the Rifampin, and the doctor said their throats looked "great", so he wouldn't do a rapid-strep test.

 

I then breathed a sigh of relief, and began to focus on my daughter's issues. Ironically, My Husband and I were in to see the same doctor for a "talk" consult about Becca earlier that day. I thought the "infection" part was over.

 

On the morning of Friday, May 8th, my daughter mentioned just once that her throat "maybe hurts a little". That afternoon, was the last time she tested positive. On the following Monday, I insisted that the doctor do a rapid-strep on my other three children, and when they were negative, I insisted that he also send out a culture. They also came back a negative. So it seems that the Rifampin did work for the other 2 (my baby never tested postive, but was perscribed a 5 day course of OMNICEF on March 11 because his throat also looked red).

 

But to answer your question simply, no, I have no evidence that she was ever free from the initial infection.

 

I do not know what you mean by "antibiotic effect". Could you please clarify this for me?

 

As far as blood tests, the doctor ordered CBC, C-reactive protein, strep titers and thyroid. When I asked if we should do a screening for any vitamin or mineral deficancies, he kind of "snorted"--I believe that I do want to find a Nautroupathic MD to run a nutritional anaylsis. (pardon my spelling)

 

Thanks for your words of encourgement!

 

- edited to remove personal information

Edited August 8, 2013 by Kayanne

[Kayanne]

 

It is not unusual to get turned away from Dr.'s on this diagnosis. I was dismissed on Fri. from a ped neuro who was suggested from TSA for specializing in OCD and Aspergers, but she doesn't believe in PANDAS. She told me to stick with the psychiatrist. I have seen probably 15 specialist and most of them didn't want to do a thing. The latest trend seems to be sending these cases to psychiatrist. I am taking him to two right now. However beware they will precribe meds for the moods and symptoms. Then they suggest CBT with a psychologist. The neurologist can help with tic meds but when things get complicated will pass you on to a psychiatrist. In all the Dr's I taken him to, only two would give the antibiotics and none the Azith lots of people here are using. The neuro on Fri was really against the antibiotics and the harm they could do. She had a full report from an immunologist we had seen at her hospital. She said he took a long time to research my son's case and had passed and he was one of the best on immune research. Baloney! He went to Case to study fulltime and he wrote me the script for antibiotics too. I probably could have gotten Azith from him.
Just document everything as you did here. It will most likely take more then one episode to get Dr's attention. My son has been having this for six years. Dr's are not on the same page. There are a few that believe in IVIG and plasma therapy and steroid bursts. Dr. K is a good consult at web pediatrics, Dr, Leckman at Yale, Dr. Latimer in Maryland. I pray you won't need them.

Your child's symptoms will probably last a few months until the antibodies go down. Each epsiode typically is 4-8 weeks for us. Maybe you'll be a one time episode. I have known some that have gotten better. As we have gone along with this illness things have progressed and gotten worse and more Aspergers/Tourettes like. Now they are daily behaviors. Our Dr's wanted to wait and see since my son was so young when he got this.

Dr. Leckman is doing research with Dr. K right now so maybe we will have more answers for Dr's on what works soon. Right now Dr's are desputing if it is a real diagnosis and many are not willing to put out their necks to help and few want to do what is not suggested by NIMH. Keep us posted. Stick with this board because it will keep you up to date on what is out there. By the way my son is 7 and the stress of school really made his symptoms worse in kindergarten coupled with strep exposures. Stress makes things wosen for these kiddos. Also, many of these PANDAS kids have a gentic history of anxiety disorders in their families.

Michele

Thank you so much for your advice. I do believe that it will be helpful. I am going to speak to my children's doctor when the weekend is over. I believe that because he was willing enough to make the link to PANDAS in the first place, he would be willing to consider the antibiotics, if I can give him some more information on it.

I had read somewhere else, that children with PANDAS many times have a family history and/or propensity toward anxiety, but I can't remember where. Do you know where you heard that?

 

- edited to remove personal information

Edited August 8, 2013 by Kayanne

[P_Mom]

Hi,

 

Sorry about your struggles. I wouldn't worry too much about what the docs said at CHOP, they apparently know little about PANDAS, most docs do. You will find it very difficult to find a doc who can help...most of us have looked for years, only to end up traveling to the few docs that can help. You are fortunate, you live in Philly, there is a PANDAS specialist there...Beth Latimer. Go see her, she can help.

 

Your daughter sounds like classic PANDAS to me...my son had all the behavior changes you mentioned, plus some. He withdrew and wouldn't play with anyone at the playground, he also couldn't make a simple decision, etc. Don't let them stick your daughter on psych meds...go see a PANDAS specialist first. Also, what criteria did she not meet? Sounds to me she meets them all.

 

Go to this site if you haven't already. www.webpediatrics.com Great site on PANDAS and great doc. He treats my kids (I have two boys with it)

 

You could even e-mail him with your daughters story, he will get back to you. When my son first presented with PANDAS, I found his site and e-mailed him. Very early on he told me it was PANDAS and he told me what I needed to do. I was hesitant and wasn't sure and spent months looking for help elsewhere, only to end up doing as he said and seeing results. I wasted precious time and now my younger son has lingering symptoms that we hope to clear with IVIG. When my older son presented, we did what dr. K said immediately (within 2 days of onset), and achieved basically 100% remission of symptoms with him.....he is doing fantastic with very minor bumps here and there with illness, like maybe a slight facial tic that lasts a week or so and is very infrequent and minor....... he HAD sudden onset frequent, multiple, motor tics with adhd behavior. Both my kids are on proph antibiotics and will be for a while....I believe that is crucial. Without a doubt, both my kids, especially my younger son, would have been diagnosed with Tourettes Syndrome by now......if you child tics consistently for more than a year, they stamp TS on them. Ask them the cause? No answer. Neither son can come close to the diagnosis now....with proper treatment for PANDAS...they can aviod the fate. PANDAS is progressive, just like TS, with each illness, exposure, strep, they get a bit worse if not treated.

 

Hope this helps.

 

Kelly

[Kayanne]

Hi,

 

Sorry about your struggles. I wouldn't worry too much about what the docs said at CHOP, they apparently know little about PANDAS, most docs do. You will find it very difficult to find a doc who can help...most of us have looked for years, only to end up traveling to the few docs that can help. You are fortunate, you live in Philly, there is a PANDAS specialist there...Beth Latimer. Go see her, she can help.

 

Your daughter sounds like classic PANDAS to me...my son had all the behavior changes you mentioned, plus some. He withdrew and wouldn't play with anyone at the playground, he also couldn't make a simple decision, etc. Don't let them stick your daughter on psych meds...go see a PANDAS specialist first. Also, what criteria did she not meet? Sounds to me she meets them all.

 

Go to this site if you haven't already. www.webpediatrics.com Great site on PANDAS and great doc. He treats my kids (I have two boys with it)

 

You could even e-mail him with your daughters story, he will get back to you. When my son first presented with PANDAS, I found his site and e-mailed him. Very early on he told me it was PANDAS and he told me what I needed to do. I was hesitant and wasn't sure and spent months looking for help elsewhere, only to end up doing as he said and seeing results. I wasted precious time and now my younger son has lingering symptoms that we hope to clear with IVIG. When my older son presented, we did what dr. K said immediately (within 2 days of onset), and achieved basically 100% remission of symptoms with him.....he is doing fantastic with very minor bumps here and there with illness, like maybe a slight facial tic that lasts a week or so and is very infrequent and minor....... he HAD sudden onset frequent, multiple, motor tics with adhd behavior. Both my kids are on proph antibiotics and will be for a while....I believe that is crucial. Without a doubt, both my kids, especially my younger son, would have been diagnosed with Tourettes Syndrome by now......if you child tics consistently for more than a year, they stamp TS on them. Ask them the cause? No answer. Neither son can come close to the diagnosis now....with proper treatment for PANDAS...they can aviod the fate. PANDAS is progressive, just like TS, with each illness, exposure, strep, they get a bit worse if not treated.

 

Hope this helps.

 

Kelly

 

THANK YOU! THANK YOU! I went to the website...it has only confirmed (in my mind) that my daughter is struggling with PANDAS.

 

The Infectious Disease Specialist at CHOP said that she didn't have OCD and/or a Tic disorder, and so far, there is no evidence of a "waxing and waning" pattern. If she gets better, and then gets strep again, and then presents the same symptoms...then he would change his diagnosis....very generous of him, don't you think?

 

I am going to contact the doctor from that website.

 

I would also like to get in touch with Beth Latimer, but a google search only came up with a doctor in VA. Are you sure she is in Philly, and if so, do you have contact info?

 

I agree that psych. drugs are not a road that I want to go down with a 6 yr. old child!

Thanks again!

 

~Karen

[EAMom]

Hi Kayanne,

 

your dd sounds like a classic case of PANDAS.

 

Ditto P.Mom's advice...e-mail Dr. K, get an appointment with Dr. Latimer.

 

Azith. worked well for us. That was the fourth antibiotic we tried. We're still on (55pounds) 250mg per day. We're working on getting IVIG in Northern CA (hopefully) in the near future. Otherwise we'll fly out to Chicago to see Dr. K.

 

Azith gets intracellular strep and is immune- modulating, anti-inflammatory....that is why we think it helped us. I would also try Advil. We give our dd 200mg daily (long term dose okayed by immunologist). Short term, you could give the advil 2-3 daily.

[T_Mom]

Dr. Josephine Elia is in Pennsylvania, and there are others there who parents have seen that were helpful--I just cannot remember them.

See the news broadcast where Dr Elia is interviewed re: PANDAS issues, MRI may be in order, as well as other bloodwork.

Best,

TMom

[P_Mom]

So sorry.....thanks T mom. I got my docs confused....Elia is the one in Philly....she can help.

 

Kelly

[P_Mom]

So sorry.....thanks T mom. I got my docs confused....Elia is the one in Philly....she can help.

 

Kelly

[T_Mom]

Hi Kayanne, I see you did see the post about the doctors in Marlton New Jersey, that are noted in connection with the "Saving Sammy" book coming out--

If they are close by to you I would go in a heartbeat to see them--asap.

 

Vitamin D and Pneumonia, Mycoplasma, as well as other levels can be checked for complicating factors.

Best,

TMom

[P_Mom]

Hi again,

 

More and more evidence is mounting and ocd/tics are in no way the only manifestations of PANDAs. Anorexia, adhd, anxiety, etc., are being included, among others. Also, your daughter confessing and not being able to make decisions are inded ocd symptoms. Confessing because she feels the need to because if not "something bad may happen," or because she feels so guilty about samll things..Same with the decisions...making a wrong one could mean disastor in a childs mind witth ocd. I could go on, but, you get the picture.

 

Anxiety is the "hallmark" symptom of PANDAs...nearly all of them have it.

 

By the way...there is a strong history of anxiety in my family.....including me.

 

Kelly

[T_Mom]

Absolutely, PMom has made the point that "confessing" and feeling guilty is not uncommon to OCD/PANDAS...one of the myriad of symptoms that may show up. Our daughter would write/pray incessantly when this first started...letters of feeling sorry, confessing over and over, etc We had the double puzzle of no positive strep...though no strep was initially checked for when our daughter first broke out with compulsive anorexia.

 

Thankfully, we were taking her to a psychiatrist (Hopkins trained) who kept saying he believed there must be a neurological basis for her OCD! He did not know much about PANDAS but felt the suddenness of the onset, coupled with the severity indicated more than the typical OCD. Though no strep with the second severe episode she did have sinusitus on an MRI

 

Making a "diagnosis" is like putting the puzzle together as it plays out. You may not know until more time passes and you see how she reacts to treatments, and if sudden onset episodes happen again--when sick, or exposed to illness (may or may not be strep in our experience.)

LISTEN to your heart on this one, and pursue all avenues the best you can and as quickly as possible. The "recovery" after a severe episode can be long and hard has been our experience.

Best,

TMom

[stacielynne]

My 6 yr old daughter, Becca, started all-day kindergarten this year, and was doing very well. When I met with her teacher at the first marking period in November 2008 she said, “This conference is 100% positive”. As the year progressed, there was nothing to indicate that there were any problems.

 

Starting on March 11, 2009, she has had four rapid-strep tests come back as positive. She has been given OMNICEF, AMOXICILLIN, AUGMENTIN combined with RIFAMPIN, and finally CLINDAMYCIN.

 

We are awaiting the results of a throat culture taken on May 22—the doctor’s office opens on Tuesday—although I will try to call tomorrow.

 

We started to get "frustrated" with her sometime around the middle/end of March, beginning of April for the following behaviors (some were not new):

• She began to confess thoughts, and things that were very minor. She had excessive and unjustified guilt (this was not new, however it was more pronounced).

• She would be very emotional. She would have a crying "fit" over something very small, and refuse to tell us why. (This also was not a new behavior; however, in the past, we always knew what she was crying about. This time it was much more frequent...and actually, she hadn’t had a “fit” in a long time.)

• She couldn't make a decision--she wouldn't choose between two things, she wouldn't say "yes" or "no". She kept saying "maybe, I don't know" or "maybe, yes or maybe no." (completely new behavior)

• She began to take a really long time in the bathroom, and she would just frequently sit and cry...we needed to tell her to finish up. (Completely new behavior).

Because some of her behaviors were not new, and my husband and his family have a history of anxiety (and as a child he had a problem with excessive guilt), we were not alarmed right away.

 

April 21, 2009--I was approached by her teacher because she was concerned that ever since Becca came back from Easter Break (April 14, 2009) there has been a real change in her behavior.

 

That really got the ball rolling. We met with her doctor, teacher and school counselor. We met with and set up appointments with a cognitive behavioral therapist.

 

The pediatrician told us about PANDAS, and he believed some of her behavior could be thought of as obsessive thoughts. Blood tests were ordered, and she was found to have a high strep titer count.

 

We were referred to CHOP (Children’s Hospital of Philadelphia). The appointment was set up with the Infectious Diseases specialist. I called down to CHOP to be sure that this was the right department for PANDAS. I was assured that it was.

 

May 22, 2009—we went to CHOP. First we met with 2 female residents. We gave them her medical file, lab results and emails from her kindergarten teacher. We also spoke at length about her changes in behavior. However, they really kept steering us back to medical history. Then they examined Becca, and left to confer with the specialist. The doctor then came in with an additional resident (specialist and 3 residents) and did his own examination of Rebecca. She passed with flying colors.

 

His professional opinion was that because she didn’t meet the criteria set out by Susan Swedo he doesn’t believe that she has PANDAS. He said to set her up with a pediatric psychiatrist.

 

He then began to explain that either way, there is no real treatment. IVIG and Plasmapheresis are very risky with side effects, and not really helpful. And the use of long term antibiotics has not been proven to be effective—based on some study that switched from antibiotics to a placebo, only to find no change in behavior.

 

Needless to say, my husband and I are beyond frustrated—we “wasted” time waiting for this appointment to see a specialist about PANDAS. Only to be told that even if she did have it, there is nothing he can do…Why would you even meet and examine a child with possible PANDAS, if you know that there is no course of treatment? I feel like Becca was used as a lab rat, and that we got nothing but a “brush off”.

 

What do I do from here? My heart is telling me that this is PANDAS!

 

I’m really scared. Her behaviors seem to have worsened. She is really jumpy/startles easily. She seems to have difficulty with short term memory. She needs to be prompted to do everything. She just stares into space. I tried to get her to draw or write, and she couldn’t do that unless I told her each word to write. She will run and laugh with her younger brother, but that is the extent of her playing.

 

Over the weekend, we met with my husband’s family at a campground for a few hours, and she wouldn’t play on the playground without a lot of coaxing. Many members of the family could easily see the changes in her.

 

Does anyone have any input? I would greatly appreciate it. I live North of Philadelphia, PA.

 

Thank you!!