Need PANDAS doctor

[mack5mom]

Hello,I am desperate.My 9 rear old daughter has been diagnosed with PANDAS by a ped. neuroloigist.But the doctor didnt offer any help at all other than antidepressants and anti seizure meds.

I need a doctor that is familiar with the disorder.I live in east tennessee and I am close to sw virginia.

Any help is appreciated

[Chemar]

Hi and welcome

 

Dr Tanya Murphy is at Shands in Gainesville Florida and Dr Swedo in Maryland. They are considered experts in the field of PANDAS research

 

I hope others will be able to offer more pointers

 

I am boggled that you doctor knows enough to diagnose PANDAS yet would offer anti SEIZURE??? meds and anti- depressants

 

anti BIOTICS are the first stage of treatment for PANDAS usually with most reporting that azithromycin helps

 

I am not a PANDAS parent so will defer to those who are to offer more insight

[faith]

Hello Mack5mom,

If your pediatircian knows enough about PANDAS to diagnose, then he/she should know the next step to refer you to someone who can help in the treatment. Antidepressants are NOT the treatment, so I wonder if your doctor even knows what he is talking about, forgive me for saying. Did you have any titer testing or is his diagnosis based on symptoms?

 

Could I ask you to give a rundown of your child's history and sysmptoms that led to this diagnosis?

 

Also, if you have to find someone on your own, I would look up in the yellow pages for an Infectious Disease doctor in the biggest city near your home that you could travel to and start with that. Inquire over the phone if they are familiar with PANDAS and that your pediatrician has diagnosed and you are looking for further help/understanding/treatment.

 

I am also not a parent of a PANDAS child, but have had the titer testing to outrule and have seen an Infectious Disease doctor (who was recommended by our pediatrician).

 

Hope this helps, and if you could give more info about your child, it could help us to direct you a little better.

 

Thanks

Faith

[emma1]

Hi! Mack5mom, what are your child's symptoms? Antibiotics are the first line of treatment. However, antidepressants are sometimes prescribed for ocd symptoms. I have NOT tried them and would really like to find other avenues -- but I do believe that antidepressants are "routinely" used for ocd, which can, at times, be a part of PANDAS. The anti-seizure meds have me boggled though -- I have done a lot of reading and research and that has not come up.

[trubiano]

I also was offered anti-depressents for the OCD/emotional issues and my ped neuro wanted to give clonidine to help relax tics and basically mellow his moods. I didn't go with any of thoose routes. The infectious disease doc wanted to do the same. I can only tell you what has worked for us. I'm in GA and took my child to see Dr. Murphy who helped, but I already went in with so much knowledge from the wonderful people on this site that she really didn't have much more to offer me. Get the antibiotics, supplements, and for my child we learned great coping measures for the OCD/emotional outbursts by going to see a psychologist who taught him how to fight his urges. The PANDAS symptoms still come and go, but if I look back at how he was this time last year it is 100% better!

[mack5mom]

Hello Mack5mom,

If your pediatircian knows enough about PANDAS to diagnose, then he/she should know the next step to refer you to someone who can help in the treatment. Antidepressants are NOT the treatment, so I wonder if your doctor even knows what he is talking about, forgive me for saying. Did you have any titer testing or is his diagnosis based on symptoms?

 

Could I ask you to give a rundown of your child's history and sysmptoms that led to this diagnosis?

 

Also, if you have to find someone on your own, I would look up in the yellow pages for an Infectious Disease doctor in the biggest city near your home that you could travel to and start with that. Inquire over the phone if they are familiar with PANDAS and that your pediatrician has diagnosed and you are looking for further help/understanding/treatment.

 

I am also not a parent of a PANDAS child, but have had the titer testing to outrule and have seen an Infectious Disease doctor (who was recommended by our pediatrician).

 

Hope this helps, and if you could give more info about your child, it could help us to direct you a little better.

 

Thanks

Faith

 

 

 

Thanks for all the replys,sorry for the quick post last night.Her pediatrician didnt actually diagnose her.He referred her to a ped. neuroligist.We waited 2 months for that appointment.Not sure if she did the strep titers(sp?) she ordered lots of tests though.Some were retests.She is checking for Lupus,RA,and thyroid disese(which I have).These results should be back in 3 days.

In dec. my daughter started twitching her eyes.Then she started having extreme pressure behind her eyes along with headaches.In Jan. the numbness started.Her toes on her left foot,then the foot and leg.Next comes the other foot/leg.Next hands then arms.Sometimes her ears are numb too.She also got VERY weak.Her white blood count dropped from 5,000 to 1,000.Drs. said she had a viral infection.Took 2 weeks to get those back to normal.

She lost 8 pounds in 2 weeks.

Her handwriting has become awful.She does not want to be alone at night.Shes not afraid,just lonely.This child (in the past) has always been so independent and self sufficient.But the clingyness only happens at night.

She actually cries some nights b/c her legs are so stiff and painful.this from a little girl who has a very high tolerance for pain.

Now she has started obsessing about germs.She doesnt want anyone but me to touch her food or 'breathe" on it.

Four years ago she was diagnosed with Mitral Valve Prolapse.Im now wondering if PANDAS was already in her then,we just didnt know it yet.

 

The neuro mentioned Topamax for the migraines too.We decided against it,I had a bad experience with it.

 

I have been searching for info on supplements,all I have found is omega 3 but I cant even find the correct dosge.

 

Thank you all for your support.I dont feel so alone now.

[lurker]

Mack5mom,

 

This is probably a really stupid question, but did they test for and rule out Epstein-Bar virus? It was the first thing that came to my mind based on those symptoms. [Edit] Nevermind. I looked it up, and her white blood cell count would have escalated instead of dropping.

[mack5mom]

Mack5mom,

 

This is probably a really stupid question, but did they test for and rule out Epstein-Bar virus? It was the first thing that came to my mind based on those symptoms. [Edit] Nevermind. I looked it up, and her white blood cell count would have escalated instead of dropping.

 

They did actually check for EB and mono(twice).Thanks, any other ideas?I appreciate your help.

[faith]

I don't know but vitamin B12 deficiency was ringing a bell for me, (I have a cousin who had this as a child). Here is something you could read, it does mention some of the symptoms you describe, tingling of hands and feet, neurological symptoms, headaches, weight loss, night terror, etc. I would ask the doctor about it, you never know.

What is your daughter's diet like? Any other health problems when she was younger? Was last Dec. the first time she displayed tics of any kind, anything earlier than that? Is that her only tic symptom?

 

http://ezinearticles.com/?How-To-Treat-Vit...s&id=758040

 

 

 

 

Faith

[michele]

I don't think Dr. Sweedo is seeing patients and the PANDAS research is now closed at NIMH. I would recommend Dr. Murphy at Shands in Florida. We went to see her and she was the only Dr. we have seen who would write out a diagnosis of PANDAS on paper. It has helped alot for future treatment and school evaluations etc. Although she did not prescribe any meds though. I don't know if she did prescriptions for others here. However she did write up her opinions and recommendations for him for future treatment. I really learned from her and she was open to questions etc. However first you have to meet with an assistant Dr. there we saw Dr. Gaines. He was not as wonderful. He did not believe in the holistic approach and laughed at all the efforts I was doing on diet and blood tests for supplements etc. He does not believe in any correlation between diet, immunizations etc. and tics. He was close minded for a young Dr. I also think there is a Dr. on Webpediatrics.com, Dr. K who treats PANDAS out of Chicago. I don't know if anyone here has seen him? He seems to encourage the use of IVIG. We had to get prescriptions for antibiotics from immunologists and ID Dr's. The neurologists will prescribe drugs for tics or ADD. I have not found a neurologist yet who will diagnose PANDAS just will use the general heading of tics related to immune issues. Dr. Murphy can take months to get into there is a screening process first. I would be happy to answer any questions for you.

 

Michele

Hello,I am desperate.My 9 rear old daughter has been diagnosed with PANDAS by a ped. neuroloigist.But the doctor didnt offer any help at all other than antidepressants and anti seizure meds.

I need a doctor that is familiar with the disorder.I live in east tennessee and I am close to sw virginia.

Any help is appreciated

[kim]

mack5mom,

 

She is checking for Lupus,RA,and thyroid disese(which I have).These results should be back in 3 days.

 

 

I'm wondering if you meant thyroid disease or all 3 conditions?

 

I'm so sorry your daughter is going thru all of this and wanted to say welcome to the forum.

 

kim

[mack5mom]

mack5mom,

 

She is checking for Lupus,RA,and thyroid disese(which I have).These results should be back in 3 days.

 

 

I'm wondering if you meant thyroid disease or all 3 conditions?

 

I'm so sorry your daughter is going thru all of this and wanted to say welcome to the forum.

 

kim

 

Thanks for the welcome Kim.The Neuroligist is checking for all 3 conditions.Its actually a recheck,her ped. already checked her for these and also checked her b12,potassium,menengitis, and so many other things I cant name them.

[emma1]

mack5mom, I noticed you said you have thyroid disease. I have hypothyroidism due to Hashimoto's (which is autoimminue) and I know at least one other mom here with a PANDAS child has an autoimmune issue (Michele?). Since PANDAS is an autoimmune issue, it does make me wonder if there is some kind of genetic component here.

 

I am not sure how this helps us help our kids, but I do keep wondering about this.

[mack5mom]

mack5mom, I noticed you said you have thyroid disease. I have hypothyroidism due to Hashimoto's (which is autoimminue) and I know at least one other mom here with a PANDAS child has an autoimmune issue (Michele?). Since PANDAS is an autoimmune issue, it does make me wonder if there is some kind of genetic component here.

 

I am not sure how this helps us help our kids, but I do keep wondering about this.

 

/quote]

 

 

I also have Hashimotos,and my sister has alopecia which is also autoimmune.Makes me wonder...

[kim]

My husband had an episode of alopecia arieta (sp?) and my sister in law has Hashimoto's. I believe their aunt (husband and sister in law's...which would be my boys great aunt) was supposed to have lupus antibodies. I think one other aunt on that side of the family was supposed to have had the alopecia problem too. My boys don't have classic PANDAS symptoms. I dismissed PANDAS as we never saw an explosive onset. I'm starting to look at this whole syndrome a little differently right now though.