PANDAS or ts/ocd

[momofgirls]

Well I am happy your daughter is doing better. So you have used antibiotics and steroids once. Is she a canidate for IVIG? If you continue with just antibiotics do children improve with that alone over time or is it just an ongoing battle forever?!

Tmom, where are you in treatment? How are things now?

 

 

Our d has been on full-strength Amoxicillan for 9 months and continues. She had a bad exacerbation (OCD and tics) last December and we could only "get" Amoxicillan at the time. So that is what we gave her and week to week we saw a steady improvement.

 

Slow and steady improvement for 3 months and then she seemed to plateau. She was about 85% herself and we tried a steroid burst to see if she would come back to 100%. She did. Last March, for the first time in over 5 months I saw my daughter again--I felt like all that time with her had been stolen from us.

 

Her personality came back, her academic abilities, even her mood was better. After the steroid burst her teacher called and said that for the first time all year they were seeing the child that we had been telling them about, it was April.

It had been a very bad year at school, many meetings. By the end of the year she was again getting A's and standardized testing indicated full potential again.

 

We had a few ups and downs this summer, but nothing like earlier.

During a mild exacerbation this summer (evident to only us and a perceptive doctor) she was having three to five compulsions a day and mild infrequent tics -- we had Cunningham's blood research done at that time and Cam Kinase was elevated (160.)

 

Three weeks later she was doing extremely well again--

As of yesterday, back at school and doing great...which means in her case: She said she felt only one compulsion to do something during the day, otherwise nothing to note, though I saw mild face-stretching or nose scrunching a few times in the car, which quite frankly concerns me, but overall we hope for the best, and continue the course--If it comes back we will continue upping the treatments to get rid of it.

All the best to all of our children.

[michele]

We have been dealing with this for 7 and a half years since my son was 1. Strep in the beginning followed by chorea, blinking, tics and emotional liability. Over the years with strep and virals and shots things have waxed and waned and lasted for about two months each episode.

Then at age five we started antibiotics pen vk and amoxcil when pen vk stopped working and then Omnicef longterm. He had urinary frequency and OCD by this point. Then we did the meds Abilify at age 6 when the ADHD and anger set in and supplements weren't cutting it. Motor skills were delayed and he acted younger then his age. He obsessed over things he wanted and liked and cried when he didn't get his way. So now we have several diagnosis over the years. Tic disorder, ADHD, OCD PANDAS and now Aspergers. I thought Dr. Latimer would help us this summer but she also thought it was anxiety related. We did the steroids and his moods were worse and impulse and anxiety seemed worse. In the end, even with the Cunningham test which said he was in the PANDAS range we know nothing. He could still be considered borderline according to Dr. Latimer. I have phone consulted Dr. K and went to DC for Latimer and Florida to Dr. Murphy. Now as of last week we are switching to Risperdal instead of Abilify. His moods are worse since the steroids last month. He gets so angry and just looses it and kicks holes in walls. We stopped the antibiotics since he now has bowel encopresis problems. I want to be hopeful and helpful to those of you who are new but I am still searching after 7 years. We haven't had IVIG or PEX yet. Dr. Latimer didn't seem interested in doing it for us, maybe Dr. K would if we went there. We thought Latimer would but she said his anxiety maybe the problem and suggested the NIMH study which is far away from home. Possibly it is the Aspergers and we have to turn our attention to the possibility that there is no cure and behavioral therapy will be all we can do with meds. I just don't want everyone to think they are PANDAS or tourettes and not consider an autism spectrum disorder. We may have been searching for the wrong diagnosis for years. Or maybe the PANDAS strep brought on the Aspergers from longterm damage. I just know we are sick of Dr's and not getting any true help or answers. I think we are like the family in Against Medical Advice, putting our son through alot of Dr's to get him little improvement. I hope we learn more in the future due to reseach.

 

Tmom, where are you in treatment? How are things now?

 

 

Our d has been on full-strength Amoxicillan for 9 months and continues. She had a bad exacerbation (OCD and tics) last December and we could only "get" Amoxicillan at the time. So that is what we gave her and week to week we saw a steady improvement.

 

Slow and steady improvement for 3 months and then she seemed to plateau. She was about 85% herself and we tried a steroid burst to see if she would come back to 100%. She did. Last March, for the first time in over 5 months I saw my daughter again--I felt like all that time with her had been stolen from us.

 

Her personality came back, her academic abilities, even her mood was better. After the steroid burst her teacher called and said that for the first time all year they were seeing the child that we had been telling them about, it was April.

It had been a very bad year at school, many meetings. By the end of the year she was again getting A's and standardized testing indicated full potential again.

 

We had a few ups and downs this summer, but nothing like earlier.

During a mild exacerbation this summer (evident to only us and a perceptive doctor) she was having three to five compulsions a day and mild infrequent tics -- we had Cunningham's blood research done at that time and Cam Kinase was elevated (160.)

 

Three weeks later she was doing extremely well again--

As of yesterday, back at school and doing great...which means in her case: She said she felt only one compulsion to do something during the day, otherwise nothing to note, though I saw mild face-stretching or nose scrunching a few times in the car, which quite frankly concerns me, but overall we hope for the best, and continue the course--If it comes back we will continue upping the treatments to get rid of it.

All the best to all of our children.

[sf_mom]

The following is taken from the log I keep of my son's health/behavior.

 

• July 2008: We believe that our son at 4 1/2 contracted strep but went undiagnosed. All I remember was, he was sick, had an ongoing cough/clearing of throat for 3 weeks so we finally took him to the Dr. Diagnosed with sinusitis prescribed Amoxicillian, one to two days after starting amoxicilian he had a full body rash, neck to ankle and was switched to Azithromycin. Cough/clearing of the throat continued to persist so we took him back to the Dr. and was told at that time the clearing of throat was psychosamatic and that it would eventually go away (no additional antibiotics were perscribed)… Cough/clearing of throat did eventually go away after another 8 weeks but cropped up occasionally throughout year.

 

• June 24th -27th, 2009: High Fever and Sore Throat. Had to sleep in his room to get him to settle. I thought he was restless due to fever.

 

• July 1st - 4th, 2009: Noticed Tic Behavior: Rapid eye blinking, clearing of throat/cough similar to prior episode, inability to sleep, moodiness. We had company this particular week so I might have missed some of his symptoms. He had a play date on the 1st with a friend who immediately took ill afterwards. His illness consisted of headaches, fever, full body rash but was never formly diagnosed of anything.

 

• July 2nd, 2009: I remember that our son was very moody this particular day – I took him to the Academy of Science Museum. On our way home, he slept the entire way which is very unusual for him to nap during the day.

 

• July 6th – 17th, 2009: Multiple-Tics: Shrugging of shoulders, heading tilting to left, flicking back of ears, clearing of throat/coughing, grunting, eye blinking, etc. OCD Behavior: sneeking off to wash hands (does not know why), insistant that he has to clean his hands prior to touching baby blanket (does not want to get germs on it), concerned about germs from a friend who spent the night. Other Symptoms: Moody/irratable, seperation issues at school, fearfull of a story about a snake, inability to fall asleep, extended bedtime routine, bad dreams, night waking, complaining of aches and pains every morning. I was so concerned I video taped his behavior at this time.

 

Dr. K specifically talks about the cough on web pediatrics as being present in many PANDAS children and it is considered to be a TIC......... From Dr. K's information: "Physical symptoms of PANDAS frequently include tics and a significant deterioration in fine motor skills. Tics can be isolated or may come in multiples and in bursts. They can be especially noticeable when child is tired, irritated, or left alone. Common tics include eye blinking, tapping, facial grimacing (motor tics), or coughing, throat clearing, uttering words for no apparent reason (vocal tics)"

 

Our son is has been on antibiotics for 24 days now and we've seen a huge improvement...... no notable OCD, occasional eye blinking and only a mild tic that increases when he is tired (blowing air through his nose like he is going to cough but doesn't). His symptoms declined along with his titers of: 244, 205 (after antibiotics), 206 (11 days after steroids). When he started his 5 day steroid burst we noticed an improvement in the cough within 1 hour. We are scheduled for IVIG with Dr. K on September 18th and 19th.

 

Wishing you all the best.

[momofgirls]

SF mom thanks for that detailed log. I know my daughter had strep a few years ago followed by a mysterious cough that lasted 6 months! After that she seemed fine until later the next year more tics. I am confused because she hasn't had strep since then. So I had her titers checked anyway and they were all negative. I don't know if we are dealing with ts or pandas. I am going to consult dr k that everyone keeps mentioning. I hope he can shed some light.

Kim

 

The following is taken from the log I keep of my son's health/behavior.

 

• July 2008: We believe that our son at 4 1/2 contracted strep but went undiagnosed. All I remember was, he was sick, had an ongoing cough/clearing of throat for 3 weeks so we finally took him to the Dr. Diagnosed with sinusitis prescribed Amoxicillian, one to two days after starting amoxicilian he had a full body rash, neck to ankle and was switched to Azithromycin. Cough/clearing of the throat continued to persist so we took him back to the Dr. and was told at that time the clearing of throat was psychosamatic and that it would eventually go away (no additional antibiotics were perscribed)… Cough/clearing of throat did eventually go away after another 8 weeks but cropped up occasionally throughout year.

 

• June 24th -27th, 2009: High Fever and Sore Throat. Had to sleep in his room to get him to settle. I thought he was restless due to fever.

 

• July 1st - 4th, 2009: Noticed Tic Behavior: Rapid eye blinking, clearing of throat/cough similar to prior episode, inability to sleep, moodiness. We had company this particular week so I might have missed some of his symptoms. He had a play date on the 1st with a friend who immediately took ill afterwards. His illness consisted of headaches, fever, full body rash but was never formly diagnosed of anything.

 

• July 2nd, 2009: I remember that our son was very moody this particular day – I took him to the Academy of Science Museum. On our way home, he slept the entire way which is very unusual for him to nap during the day.

 

• July 6th – 17th, 2009: Multiple-Tics: Shrugging of shoulders, heading tilting to left, flicking back of ears, clearing of throat/coughing, grunting, eye blinking, etc. OCD Behavior: sneeking off to wash hands (does not know why), insistant that he has to clean his hands prior to touching baby blanket (does not want to get germs on it), concerned about germs from a friend who spent the night. Other Symptoms: Moody/irratable, seperation issues at school, fearfull of a story about a snake, inability to fall asleep, extended bedtime routine, bad dreams, night waking, complaining of aches and pains every morning. I was so concerned I video taped his behavior at this time.

 

Dr. K specifically talks about the cough on web pediatrics as being present in many PANDAS children and it is considered to be a TIC......... From Dr. K's information: "qPhysical symptoms of PANDAS frequently include tics and a significant deterioration in fine motor skills. Tics can be isolated or may come in multiples and in bursts. They can be especially noticeable when child is tired, irritated, or left alone. Common tics include eye blinking, tapping, facial grimacing (motor tics), or coughing, throat clearing, uttering words for no apparent reason (vocal tics)"

 

Our son is has been on antibiotics for 24 days now and we've seen a huge improvement...... no notable OCD, occasional eye blinking and only a mild tic that increases when he is tired (blowing air through his nose like he is going to cough but doesn't). His symptoms declined along with his titers of: 244, 205 (after antibiotics), 206 (11 days after steroids). When he started his 5 day steroid burst we noticed an improvement in the cough within 1 hour. We are scheduled for IVIG with Dr. K on September 18th and 19th.

 

Wishing you all the best.

[Suzan]

Thanks so much for your reply. I am desperate for help. Do PANDAS kids always have a dramatic onset? Her symptoms after strep were mild and I didn't think of anything like this. They seem to have progressed more slowly over time.

 

My girls did not have a dramatic onset because it started when they were around 1 or 1 1/2 years old. Now that they are older, I have seen some dramatic increase in symptoms that seem more like an "episode" that have helped us get diagnosed. But before this year, we've been dealing with strange symptoms or intense issues but nothing that seemed like a dramatic onset. If I had known about PANDAS 7 years ago, I MAY have been able to recognize what what happening, but I still to this day am unsure about that.

 

Susan

[momofgirls]

Susan

 

Both your girls have it? Is this genetic? I am concerned about my younger daughter now too who is not showing symptoms. How are your girls now and what are you doing for them? Have their titers been elevated all along? I know my daughter had strep a couple of years ago but her titers were normal. This year when I realized something serious was wrong I had her checked.

I still don't know if she has PANDAS or TS/OCD. It sounds like a difficult thing to differentiate.

Kim

 

 

Thanks so much for your reply. I am desperate for help. Do PANDAS kids always have a dramatic onset? Her symptoms after strep were mild and I didn't think of anything like this. They seem to have progressed more slowly over time.

 

My girls did not have a dramatic onset because it started when they were around 1 or 1 1/2 years old. Now that they are older, I have seen some dramatic increase in symptoms that seem more like an "episode" that have helped us get diagnosed. But before this year, we've been dealing with strange symptoms or intense issues but nothing that seemed like a dramatic onset. If I had known about PANDAS 7 years ago, I MAY have been able to recognize what what happening, but I still to this day am unsure about that.

 

Susan

[Suzan]

Susan

 

Both your girls have it? Is this genetic? I am concerned about my younger daughter now too who is not showing symptoms. How are your girls now and what are you doing for them? Have their titers been elevated all along? I know my daughter had strep a couple of years ago but her titers were normal. This year when I realized something serious was wrong I had her checked.

I still don't know if she has PANDAS or TS/OCD. It sounds like a difficult thing to differentiate.

Kim

 

Hi Kim, yes, both girls! I hear it can have a genetic componet. We had the Dr. Cunningham test done and my 8 yr old is solid mid range and almost 7 yr old is on the lower range. Their symptoms present themselves in very different ways. If you are interested, I can send you their history. If so, PM me your email address. I would be happy to share it with you.

 

Younger dd - titers are not elevated and I've never seen them elevated. First strep infection before 12 months old. She's currently doing very well after a few years of doing very poorly.

 

Older dd - just had titers checked and am waiting on the results. First strep infection around 16 months old. She's not doing well right now. I guess they are taking turns!

 

They both have sensory processing disorder (much worse when they were younger). They are both gluten intolerant and possibly have Celiac.

 

Susan

[EAMom]

Hi Kim (momofgirls),

I just scanned this thread so maybe someone already suggested this? You should see James Leckman at the Yale Child Study Center. He is a MD (a psychiatrist). He knows about PANDAS (in addition to ts/ocd). http://www.med.yale.edu/chldstdy/faculty/leckman.htm

[T_Mom]

Well I am happy your daughter is doing better. So you have used antibiotics and steroids once. Is she a canidate for IVIG? If you continue with just antibiotics do children improve with that alone over time or is it just an ongoing battle forever?!

 

The short answer is we don't know.

Right now she is doing very well. Long term, she may at some point need IVIG or PEX if she has another exacerbation. It took her months to recover from the exacerbation in December, we won't let that happen again without trying something. I am anxious to read the "Saving Sammy" book by Beth Mahoney (sp?), coming out later this month--

 

Our d is 11 so puberty is around the corner. We know antibiotics did wonders, and we actually have had two steroid bursts. The first one last summer when she was essentially crippled by sudden onset OCD--

 

Dr. K uses steroids as essentially a "test" to see if a child responds, which would seem to indicate brain inflammation as the culprit causing OCD/tics. We bet on this hypothesis the first time we tried the burst, we were desperate, and she cleared dramatically.

BTW, if I lived anywhere near Dr. Leckman I'd be making an appointment asap--He is extremely knowledgeable and well respected in the field of OCD, we are fortunate he is also well respected re: his knowledge of PANDAS issues. All the best to you--

[Ellen]

Kim, I agree with EAMom about this suggestion. My son is 13 and has PANDAS and we also live in Connecticut. I strongly recommend seeing Dr. Leckman at Yale for a consult. He is an excellent doctor, who is not only knowledgeable about PANDAS, OCD, and Tourettes, but also very caring and compassionate and willing to give you a lot of his time. My son's case has been a complicated one, and Dr. Leckman has been a big help to us. We are also working with DAN doctors who have been very helpful too. I will send you a personal message some time soon and tell you more.

 

Ellen

 

 

 

 

Hi Kim (momofgirls),

I just scanned this thread so maybe someone already suggested this? You should see James Leckman at the Yale Child Study Center. He is a MD (a psychiatrist). He knows about PANDAS (in addition to ts/ocd). http://www.med.yale.edu/chldstdy/faculty/leckman.htm

[momofgirls]

Thanks guys. I will contact dr leckman next week. At this point I am not sure if we are dealing with PANDAS or TS but hope he can help.

Kim, I agree with EAMom about this suggestion. My son is 13 and has PANDAS and we also live in Connecticut. I strongly recommend seeing Dr. Leckman at Yale for a consult. He is an excellent doctor, who is not only knowledgeable about PANDAS, OCD, and Tourettes, but also very caring and compassionate and willing to give you a lot of his time. My son's case has been a complicated one, and Dr. Leckman has been a big help to us. We are also working with DAN doctors who have been very helpful too. I will send you a personal message some time soon and tell you more.

 

Ellen

 

 

 

 

Hi Kim (momofgirls),

I just scanned this thread so maybe someone already suggested this? You should see James Leckman at the Yale Child Study Center. He is a MD (a psychiatrist). He knows about PANDAS (in addition to ts/ocd). http://www.med.yale.edu/chldstdy/faculty/leckman.htm

[EAMom]

good luck! keep us updated on how things go.

[momofgirls]

Hi Suzan

Yes I would be interested in hearing your girls history if you don't mind sharing. My email is kim1031@comcast.net

Someone said it may be the strain of strep rather than being genetic but I can't remember where I read that. I don't know if my daughter has tourettes or pandas because after the strep infection she just had a mild tic (cough). Nothing dramatic until last year and I don't think she even has had strep since then. I wish there was a definate test to know for sure!

Kim

 

Susan

 

Both your girls have it? Is this genetic? I am concerned about my younger daughter now too who is not showing symptoms. How are your girls now and what are you doing for them? Have their titers been elevated all along? I know my daughter had strep a couple of years ago but her titers were normal. This year when I realized something serious was wrong I had her checked.

I still don't know if she has PANDAS or TS/OCD. It sounds like a difficult thing to differentiate.

Kim

 

Hi Kim, yes, both girls! I hear it can have a genetic componet. We had the Dr. Cunningham test done and my 8 yr old is solid mid range and almost 7 yr old is on the lower range. Their symptoms present themselves in very different ways. If you are interested, I can send you their history. If so, PM me your email address. I would be happy to share it with you.

 

Younger dd - titers are not elevated and I've never seen them elevated. First strep infection before 12 months old. She's currently doing very well after a few years of doing very poorly.

 

Older dd - just had titers checked and am waiting on the results. First strep infection around 16 months old. She's not doing well right now. I guess they are taking turns!

 

They both have sensory processing disorder (much worse when they were younger). They are both gluten intolerant and possibly have Celiac.

 

Susan

[Suzan]

Hi Suzan

Yes I would be interested in hearing your girls history if you don't mind sharing. My email is kim1031@comcast.net

Someone said it may be the strain of strep rather than being genetic but I can't remember where I read that. I don't know if my daughter has tourettes or pandas because after the strep infection she just had a mild tic (cough). Nothing dramatic until last year and I don't think she even has had strep since then. I wish there was a definate test to know for sure!

Kim

 

Thanks Kim, I just sent you an email...

[thereishope]

I know of a mom who has a girl who had her first dramatic onset this year. She has had strep in previous years but the mom never noticed any dramatic changes at the time. In hindsight, she realizes there were small changes. Like she would go through waves of her daughter keeping her room cleaner/ more organized than usual. In hindsight, she realizes it was probably PANDAS and OCD surfacing, but nothing so dramatic that she'd be concerned. This last time, though, it was dramatic and extreme. It seems w/ her, it built up over time.

 

 

 

Hi Suzan

Yes I would be interested in hearing your girls history if you don't mind sharing. My email is kim1031@comcast.net

Someone said it may be the strain of strep rather than being genetic but I can't remember where I read that. I don't know if my daughter has tourettes or pandas because after the strep infection she just had a mild tic (cough). Nothing dramatic until last year and I don't think she even has had strep since then. I wish there was a definate test to know for sure!

Kim

 

Susan

 

Both your girls have it? Is this genetic? I am concerned about my younger daughter now too who is not showing symptoms. How are your girls now and what are you doing for them? Have their titers been elevated all along? I know my daughter had strep a couple of years ago but her titers were normal. This year when I realized something serious was wrong I had her checked.

I still don't know if she has PANDAS or TS/OCD. It sounds like a difficult thing to differentiate.

Kim

 

Hi Kim, yes, both girls! I hear it can have a genetic componet. We had the Dr. Cunningham test done and my 8 yr old is solid mid range and almost 7 yr old is on the lower range. Their symptoms present themselves in very different ways. If you are interested, I can send you their history. If so, PM me your email address. I would be happy to share it with you.

 

Younger dd - titers are not elevated and I've never seen them elevated. First strep infection before 12 months old. She's currently doing very well after a few years of doing very poorly.

 

Older dd - just had titers checked and am waiting on the results. First strep infection around 16 months old. She's not doing well right now. I guess they are taking turns!

 

They both have sensory processing disorder (much worse when they were younger). They are both gluten intolerant and possibly have Celiac.

 

Susan