Confused with diagnoses

[Tigger013]

I am writing in hopes someone has some experience with what I am writing about in hopes to cure or at least minimize my daughters diagnoses. My Daughter stated to experience simple motor tic movements when she was 7. They waxed and waned without most people identifying it. We brought her to a neurologist and diagnosed her with motor tics. Over the years, we never treated her medically as suggested by the doctor because they were so mild and she was highly functioning and healthy overall. Since the summer of 2009, age 12, she began to experience many motor movements. Now they were very noticeable and causing sadness. We brought her in to the doctors again and they said see another neurologist, so we did. This time they gave the diagnose of motor tics and OCD. She is doing about 8 - 10 different movements at once and starting to have intrusive thoughts. She needs to complete her movements without interruption or she has to start over. She whispers her name at the end of her sentence (nobody hears-was told tic is OCD, not a tic?), she touches things or wipes things a certain number of times. We started to bring her to a CBT to help her identify her movements and maybe teach her to change her tics to be less obvious. We have reached some success, but not nearly enough. Reading a lot of useful information online, we would like to treat with supplements, rather than SSRI's. I haven't read too many SSRI's without negative effects and am searching every other option first. I am not against SSRI's, just hoping for alternatives first. My daughter is very active, high honor roll student, fun and loving young girl. I would hate to make any rash decisions and make her life more complicated. I was told to look into PANDAS, but she does not have some of the criteria (immediate onset of behavior), seeing she has experienced motor tics since 7 years old that were mild. I would say she is moderate at times throughout the day. They are times, especially at night, or in church like situations, where she cannot control her tics at all. They are so complex, it saddens me so much as why she has to deal with this. Some students are making comments, I am sure they don't understand her diagnoses. We recently brought attention to all of her teachers and social workers. They were completely surprised with the information, never noticing any problems with her having tics in class. She obviously is compensating for it at school and maybe why she comes home and lets them out. As said, she has daily sports, which probably helps keep her mind focused on other things than tics. We try breathing techniques and relaxation methods which help a lot too. Over the holiday, for 2 weeks, rarely did we notice many motor tics. How is this possible, maybe too busy-a lot of entertainment on her mind instead. If anyone has any avenue to investigate to help my beautiful daughter, please post for me. Also, does she even sound like a PANDAS case, or let that one rest? No other medical conditions in her past, overall a very healthy young child. Sorry for such a long post, but wanted to give all of her life history to help in cure.

[momaine]

Hi,

Pandas does not ALWAYS come on over night. Sometimes, in some cases, it begins like with your dd, it begins with either mild tics or ocd and it worsens over time, possibly due to re-exposure to strep. (which she does not neccesarily have to have been diagnosed with, strep can be in the throat, gentials, skin, gut, etc.) Often with PANDAS there is a problem with changes in the frequency of urination. (more frequent, a feeling like the bladder is not empty) If I were you, I would not dismiss PANDAS yet. Read on this forum, esp. the posts by Buster and Dr. Trifiletti.

 

Before starting an SSRI, you could see if your doctor would be willing to read some information on PANDAS and try a month or two of antibiotics (specifically Augmentin XR or Azithromycin....tell us your dd's weight to compare the doses that other kids are on) to see if she responds to them. Good luck.

Angela

 

I am writing in hopes someone has some experience with what I am writing about in hopes to cure or at least minimize my daughters diagnoses. My Daughter stated to experience simple motor tic movements when she was 7. They waxed and waned without most people identifying it. We brought her to a neurologist and diagnosed her with motor tics. Over the years, we never treated her medically as suggested by the doctor because they were so mild and she was highly functioning and healthy overall. Since the summer of 2009, age 12, she began to experience many motor movements. Now they were very noticeable and causing sadness. We brought her in to the doctors again and they said see another neurologist, so we did. This time they gave the diagnose of motor tics and OCD. She is doing about 8 - 10 different movements at once and starting to have intrusive thoughts. She needs to complete her movements without interruption or she has to start over. She whispers her name at the end of her sentence (nobody hears-was told tic is OCD, not a tic?), she touches things or wipes things a certain number of times. We started to bring her to a CBT to help her identify her movements and maybe teach her to change her tics to be less obvious. We have reached some success, but not nearly enough. Reading a lot of useful information online, we would like to treat with supplements, rather than SSRI's. I haven't read too many SSRI's without negative effects and am searching every other option first. I am not against SSRI's, just hoping for alternatives first. My daughter is very active, high honor roll student, fun and loving young girl. I would hate to make any rash decisions and make her life more complicated. I was told to look into PANDAS, but she does not have some of the criteria (immediate onset of behavior), seeing she has experienced motor tics since 7 years old that were mild. I would say she is moderate at times throughout the day. They are times, especially at night, or in church like situations, where she cannot control her tics at all. They are so complex, it saddens me so much as why she has to deal with this. Some students are making comments, I am sure they don't understand her diagnoses. We recently brought attention to all of her teachers and social workers. They were completely surprised with the information, never noticing any problems with her having tics in class. She obviously is compensating for it at school and maybe why she comes home and lets them out. As said, she has daily sports, which probably helps keep her mind focused on other things than tics. We try breathing techniques and relaxation methods which help a lot too. Over the holiday, for 2 weeks, rarely did we notice many motor tics. How is this possible, maybe too busy-a lot of entertainment on her mind instead. If anyone has any avenue to investigate to help my beautiful daughter, please post for me. Also, does she even sound like a PANDAS case, or let that one rest? No other medical conditions in her past, overall a very healthy young child. Sorry for such a long post, but wanted to give all of her life history to help in cure.

[faith]

hello Tigger,

my son presents similar to what you are describing re onset, tics and ocd coming on, altho he is a bit younger, 10. I am also looking to see if PANDAS is a possibility, and my problem is that I don't have but one documented strep that I know of, but it is believed that subsequent illness and virals can also continue the cycle of exacerbations due to illness/infection.

 

If I were you, just go ahead and have some testing done, see if she has the high titers and hve her throat swabbed and cultured just to see where you stand, you never know. Did she get strep in the past that you are aware of? do you recall what kind of illness she may have had right prior to her starting her first tics? you could alway do a trial of antibiotics to see if it has any effect.

 

Also, what about vaccinations, you say that she is now 12? could I ask if she's had recent vaccine boosters that are required at this age? this could be a contributer, some have noted their kids getting worse after vaccinations.

 

Does she have now or in the past any other issues or symptoms, irritability, separation anxiety, sensory, temper tantrums, etc.?

 

Faith

[Tigger013]

hello Tigger,

my son presents similar to what you are describing re onset, tics and ocd coming on, altho he is a bit younger, 10. I am also looking to see if PANDAS is a possibility, and my problem is that I don't have but one documented strep that I know of, but it is believed that subsequent illness and virals can also continue the cycle of exacerbations due to illness/infection.

 

If I were you, just go ahead and have some testing done, see if she has the high titers and hve her throat swabbed and cultured just to see where you stand, you never know. Did she get strep in the past that you are aware of? do you recall what kind of illness she may have had right prior to her starting her first tics? you could alway do a trial of antibiotics to see if it has any effect.

 

Also, what about vaccinations, you say that she is now 12? could I ask if she's had recent vaccine boosters that are required at this age? this could be a contributer, some have noted their kids getting worse after vaccinations.

 

Does she have now or in the past any other issues or symptoms, irritability, separation anxiety, sensory, temper tantrums, etc.?

 

Faith

 

 

 

When asking the pediatrician, they tell me a blood test will not diagnose me-ugh She has had strep throat in her life and before the summer influx of tics, she had a sinus infection and was on antibiotics. Did not know of anything about antibiotics reducing tics, so never identified if they helped or not. She had a tetanus shot. No signs of irritability, bed wetting, temper tantrums, sensory, behavioral issues ever. Do you know of PANDAS doctors in Chicago, IL area? And as far as blood testing, any suggestions as to who and where? Does it have to be in a study to find results. Any help, thanks.

[Chemar]

Hi Tigger

 

one of the top PANDAS docs is in Chicago

 

parents on our PANDAS forum can tell you more about him..he is known as Dr K (Dr. Kovacevic)

http://www.latitudes.org/forums/index.php?showforum=17

 

here is his website

http://www.webpediatrics.com (phone consults are possible)

[Tigger013]

Hi Tigger

 

one of the top PANDAS docs is in Chicago

 

parents on our PANDAS forum can tell you more about him..he is known as Dr K (Dr. Kovacevic)

http://www.latitudes.org/forums/index.php?showforum=17

 

here is his website

http://www.webpediatrics.com (phone consults are possible)

 

 

 

Thank you for responding:) I actually contacted his office to make an appointment and was told that $350 needs to be sent before appointment date. This covers the consultation. I wonder if this is normal that no insurance will cover these visits. I want to save my child from suffering, but the cost is going to choke us. The fear we have we spend all this money to find nothing. This is a real thought, but will have to do it to rule out PANDAS. Sometimes I feel that we are reaching with this diagnoses, just to solve it. The feelings that go through my head daily makes me frustrated that the medical world would not help patients like my daughter. Please respond if you know that any treatment for PANDAS is or is not covered. Thanks again for any help.

[Chemar]

my goodness! no I had no idea that they ask for that much even before you have the appt

It really saddens me when $ seems to be a primary focus with Doctors dealing with desperate parents!

 

I would suggest you post on the PANDAS forum about finding help that would be covered by insurance, or if Dr K is covered, but that you have to claim back yourself. I honestly dont know but the many parents there would