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[nicm930]

Hi, I have been lurking on this board for a while trying to find help for my 9 year old daughter. She had strep for the 1st time in January 08. The rapid test came back postive before the timer went off. They sent one out too and that one came back neg. They told me to stop the anti-biotic. So I did. 2 days later she refused to go to school saying she was still sick. back to the ped. we go. There she told me that strep can bring out depression. No help given. We fought everyday about going to school, she became engraged, ripping paper, throwing things screaming. her eyes would change too, her pupils enlarged. She stated to say she wanted to die. We were going to therapy at the time an that therapist sent us for a PESS eval at the local ER. There they said she was being sexually abused after the psycharist saw her for 2 minutes and she need to be put in a facility. I was so upset. I fought then tooth and nail. They then treatened me with going to get a court order. So she went to a pediatric psych ward for 2 days. There they kept asking who was hurting her a t school. She got mad and kept telling them no one. When we met with the psycharist there I told him that she was a straight A student who loved school, had many friends, never threw temper tantrums and changed right after getting strep. He mentioned PANDAS. He sent her home with us to go see another psycharist and put her on Zoloft.

At home she still gave me trouble about going to school. I wnet back to the ped. and pressed her for a strep titer test and she put her on anti-biotic for 10 days. The titer test came back neg. But after the anti-biotic she was alomst back to normal. She went to school no problem frome March until the 2nd week in June. She has allergies and they kicked in and I started getting the phone callls from the school again. Back to the ped. She keeps pushing me off to a psycharist. She refused to to anti-biotic. So off to another Ped. I go. Again no anti-biotic treatment. He sends me to a developmental pediatrician. Problem there I can't get in until January.

Right now my daughter is not in school. She is in 4 th grade. We tried starting school. She would go and sob uncontrolably and they would call me within 1 hour to come get her. She does get 1 hour of tutoring a day per dr's note. Still doesn't make up for school. I have an CST meeting on Tues. She needs to be back in school someway. Kids are starting to make fun of her. She has so much anxiety. Right now she is on Riperdal and Luvox. Neither is helping her. I hate that I can't get her any help. We have an app't with a psycharist on Friday, an app't with an immunologist in Nov. Are there any other suggestions of Dr's to go see. We just want our daughter back. Our lives are just turned upsided down. I don't know what else to dao. Any suggestions would be appreciated.

Nicole

[EAMom]

Nicole,

where do you live? Maybe somebody on this board can rec. a doc who'll get your antibiotics (preferably long term). It amazes me how free docs are with SSRI's and other psych. meds (eg. risperadel) but so stingey with the antibiotics (safer and more effective for PANDAs imo)! I'm so sorry you are having to go through this! I can't believe they hospitalized your dd against your will! That must have been so scary for both of you.

[Lacy]

Hi, I have been lurking on this board for a while trying to find help for my 9 year old daughter. She had strep for the 1st time in January 08. The rapid test came back postive before the timer went off. They sent one out too and that one came back neg. They told me to stop the anti-biotic. So I did. 2 days later she refused to go to school saying she was still sick. back to the ped. we go. There she told me that strep can bring out depression. No help given. We fought everyday about going to school, she became engraged, ripping paper, throwing things screaming. her eyes would change too, her pupils enlarged. She stated to say she wanted to die. We were going to therapy at the time an that therapist sent us for a PESS eval at the local ER. There they said she was being sexually abused after the psycharist saw her for 2 minutes and she need to be put in a facility. I was so upset. I fought then tooth and nail. They then treatened me with going to get a court order. So she went to a pediatric psych ward for 2 days. There they kept asking who was hurting her a t school. She got mad and kept telling them no one. When we met with the psycharist there I told him that she was a straight A student who loved school, had many friends, never threw temper tantrums and changed right after getting strep. He mentioned PANDAS. He sent her home with us to go see another psycharist and put her on Zoloft.

At home she still gave me trouble about going to school. I wnet back to the ped. and pressed her for a strep titer test and she put her on anti-biotic for 10 days. The titer test came back neg. But after the anti-biotic she was alomst back to normal. She went to school no problem frome March until the 2nd week in June. She has allergies and they kicked in and I started getting the phone callls from the school again. Back to the ped. She keeps pushing me off to a psycharist. She refused to to anti-biotic. So off to another Ped. I go. Again no anti-biotic treatment. He sends me to a developmental pediatrician. Problem there I can't get in until January.

Right now my daughter is not in school. She is in 4 th grade. We tried starting school. She would go and sob uncontrolably and they would call me within 1 hour to come get her. She does get 1 hour of tutoring a day per dr's note. Still doesn't make up for school. I have an CST meeting on Tues. She needs to be back in school someway. Kids are starting to make fun of her. She has so much anxiety. Right now she is on Riperdal and Luvox. Neither is helping her. I hate that I can't get her any help. We have an app't with a psycharist on Friday, an app't with an immunologist in Nov. Are there any other suggestions of Dr's to go see. We just want our daughter back. Our lives are just turned upsided down. I don't know what else to dao. Any suggestions would be appreciated.

Nicole

 

Hi Nicole... welcome, and I'm so sorry this has plagued you and your family! If all doctors aren't 'on board' with making your DD (dear daughter) better, then that just contributes to the all around stress.

 

Before I go into the list of doctors working with us (in hopes that it might help you find the right one), I will say that even though their appointments for new clients are way off in the distance, tell them that you want to be on a cancellation list so that you can grab up something sooner if it becomes available. Every time I have gotten my DD in sooner when doing this.

 

The doctors that have been involved in this nightmare have been...

 

Pediatrician - She's been very sympathetic and has helped me in thinking of new types of doctors that can help, but she has been very open about not knowing much about PANDAS. She was the first to suggest the strep test (when DD wasn't sick, but was behaviorally tanking), so I'll always be grateful to her for that.

 

Child Psychologist #1 - This lady was way too holisitc for me. I don't know how to explain it, but ultimately we didn't connect. She was of no help to us.

 

Child Psychologist #2 - This was the school's child psychologist. She was a GREAT help. She recommended the next step to be taken should be a pediatric neurologist. She also spearheaded the child studies meetings at school to make certain that everyone involved with our DD at school fully understood what was happening.

 

Child Psychiatrist - Believe it or not, this woman became an advocate for us not to put our DD on psychotrophic drugs. Her opinion saved us from the countless recommendations from various doctors to put our DD on meds. For us, we weren't ready to medicate our DD this way (and still aren't).

 

Guidance Counselor - School's GC kept close tabs on our DD and helped everytime she could. She assisted the teachers in implementing breaks scheduled throughout the day - a type of "Reboot" for our DD. These 10 minute reboots really seemed to help DD AND the teachers to take a break and get back on track.

 

Pediatric Neurologist - This guy was a no-nonsense approach doctor. He sat with us for about an hour talking about what to do. He recommended doing office scans of our DD's brain (I'm drawing a blank... it's not an EKG... shoot... sorry). DD did two and they found patterns in her 'sleeping' area of her brain that indicated she may be having seizures that we're not aware of. The P.Neurologist ordered a MRI. The MRI didn't show anything definitive and we haven't been back to the P.Neurologist since... he felt that he couldn't be of further help.

 

Pediatric Sleep Doctor - We didn't actually go through with this one, but decided that if DD relapsed we would consider it.

 

Pediatric Infectious Disease Specialist - This doctor by far was the most successful in helping us treat DD's symptoms. He did a bunch of blood tests and discovered that DD's ASO/Titers levels were completely off the charts. He wanted to start her on a 6 month course of antibiotics (that turned into 9 months). She's allergic to Penacilian, so he prescribed Cephlaxen (sp?). She was on that from Sept. 2007 through May 2008. He did checkpoint blood tests to see where her ASO/Titers levels were. They never dropped down to normal, but they were VERY SLOWLY dropping.

 

There were others involved in the school and her special needs arrangements. Unfortunately DD just relapsed and we are visiting the Pediatric ID specialist again tomorrow to see what our next steps should be. I was thinking about asking him about the IVIG therapy but I'm not certain we're at that point yet.

 

Side note.. we live in the Richmond, Virginia area and I would be happy to provide you with the names of the doctors if you're nearby?

[amy s]

Nicole,

I am so sorry you are going through this. This sounds horrible. I can't even put into words how much I hate it. My dd is going through very similiar issues as is many parents on here. I just can't even believe that we can't get help for our children. Myself, I finally decided to schedule a telephone consult with Dr. K, it is scheduled next week. Maybe you should consider that too. Email him first to see what he says (in case you haven't yet). I'm sure if you have been reading this board for a while you know his web site is www.webpediatrics.com Good luck with everything. My dd saw a ped Rheumatologist yesterday and although they don't want to treat her themselves, they did say that it sounded extremely suspicious that she has pandas and did order some labs and said they will help with guidance to my dd's pediatrician. Maybe you could try that too. I don't know.

Regards,

amy s

[nicm930]

Thanks for everybody's quick responses. We live in New Jersey. I was reading about Dr triffilitti the other day. I am going to see if he is seeing any new patients. I know that there was a dr in Children's Hosp in Philly that treated a kid with PANDAS but has left the hospital to start her own practice. This was only last week that she left and the hosp. hasn't got back to me about where she is . I hope when we go out to Philly in 2 weeks that they can be more help.

Amy S I did write to Dr K and he said he'd be happy to speak to me about my DD. I talked to my old ped. and she said that she wanted to first check him out. She said she agreed witht he steriod burst but not the anti-biotic. It is so frustrating.

I called a advocate for special ed on Friday and her niece has PANDAS. She was lucky enough to get into the NIMH last year. She is on amoxicillin and luvox and is doing fine. She said my DD needs to be on anti-biotic. I said Yeah I know! She tried to help me find a dr and told me to check out an MD that specalized in OCD. At this point I will try anything!

[EAMom]

Yes, try for Trifiletti (sp?). I would if I lived in NY or NJ.

 

Our psychiatrist (child psych. OCD specialist) was our biggest advocate for antibiotics. Technically, she preferred to have the ped. write the script though (a turf thing I think?). Also, we got a pediatric rheumatologist and a pediatric neurologist to agree that we should do the prophylactic abs. This helped convince our skeptical ped who is now pretty much obligated to give us the prophylactic ab script. The pediatric rheumatologist called PANDAS "rheumatic fever of the brain" and believes that prophylactic abs are important for PANDAS (to prevent mental illness and possible brain damage), just like they are for rheumatic fever (to prevent damage to the heart).

 

I don't understand these docs that won't rx out abs to pandas patients. They dispense all these (potentially more dangerous) psych. meds to treat the symptoms. But, then ignore preventing/treating the actual source of the problem...the strep! this makes no sense to me!

 

re Dr. K. several people on who post on this board (Pmoreno, diana, worried dad) have worked with Dr. K...they can testify that he is legit. and knows PANDAS.

[ajcire]

What part of NJ is Dr. Trifiletti located?

[EAMom]

Newark, if this link is still current.

 

http://pluto.umdnj.edu/NJMedPhysicians/doc...octor=102495263

 

Here's an article... http://www.umdnj.edu/umcweb/marketing_and_...fall2005/11.htm

[amy s]

EAMom, that is a good article. Thanks for sharing!

[ajcire]

Thanks, I will tuck that bit of info away as it's really only an hour from me if necessary.

[Dedee]

Nicole,

 

I just wanted to say how sorry I am for what your daughter and your family are going through. That is a horrible situation. I hope you will stick around here and allow the wonderful people on this board to help and support you. My biggest suggestion is to get to a physician who knows PANDAS ASAP! This will help you get some control over your situation and begin a plan for healing your precious daughter. Also I wanted to add that there was a time several years ago when my son (PANDAS) was taking SSRI's and his psychiatrist switched him to Luvox to try to help with a flare up. He actually got worse on Luvox. I'm not sure why, as he had taken Zoloft and Celexa with no problems, but the Luvox made him nuts. We ended up going back to Celexa and increasing the dose slightly and he did well. Since that time we have been fortunate enough to get antibiotic therapy for him and have gradually weaned him off of the Celexa. Sometimes the meds we give to help, don't always help. It is just so hard to tell when you have so many issues occuring at once. I hope that you soon find the right physician for you. Your family has suffered long enough.

 

Dedee