new member, no help in philadelphia

[cfamily]

Hi all,

I am new to the forum. We have been dealing with pandas and untrained, unknowledgable doctors in the philadelphia area since 2007. After 3 rounds of strep, 2 psychologists (one at chopp) they still only thought it might be pandas. Her symptom let up after about 8 months though not completely. Now we are past the explosive panick attacks, but dealing with the others. Her ped at kids first haverford, have no clue again and have referred us to Dr. Elia at chopp who won't return our calls.

 

Looking for help and a path. I feel like all the stuff on the web points to this ivig before 10 to prevent permanent damage.

 

Worried Mom

[dcmom]

Hi Worried Mom,

 

We are all with you. Pandas is a difficult disorder to deal with, as it is hard enough to watch the changes and struggles in your child, but then not have a doctor who believes you adds insult to injury.

 

Dr. Elia, apparently, is not seeing patients until mid summer. She is a psychiatrist, and I think her medical interventions may be minimal. She is very expensive if she does not take your insurance. There are a few newer families in Philadelphia, but I haven't heard of any doctor recommendations.

 

I would consider contacting a DAN doctor, and asking on the phone if they will treat pandas. Maybe they are a little more used to thinking outside the box.

 

What are your child's symptoms now? Is she/ has she been on antibiotics? My 5 yr old dd had her first episode this year. She is MUCH improved after a month on full strenght zithromax- but she still has low level anxiety, ocd, sensory issues, that were not there before. If you haven't tried zithromax- I think that is your first step. If her symptoms are causing great difficulty, you may want to consider a steroid burst (we have not done that, yet, but considering in the summer).

 

There is a great dr in DC (neurologist Dr Latimer), and one in NJ I also like (neurologist Dr Trifiletti)- if you don't find anyone locally.

 

The frustrating thing is, there is no answer at this point. All of the parents on this board are struggling to find solutions, and will be of such a help to you.

 

What we have decided (for now): My dd first episode was in Feb. She was treated with about a month of zithromax, and has been on prophylactic zithromax since then. Next week she is having her tonsils out. By august- if we still see pandas behaviors, we will try a steroid burst- to see if we can get her to 100%. Unfortunately at this point I think we will continue prophylactic antibiotics indefinately (may switch to a more narrow spectrum at some pt). If she has another episode we will pursue IVIG.

 

All the best, feel free to pm me, and post as often as you need support/ advice.

[cfamily]

Hi Worried Mom,

 

We are all with you. Pandas is a difficult disorder to deal with, as it is hard enough to watch the changes and struggles in your child, but then not have a doctor who believes you adds insult to injury.

 

Dr. Elia, apparently, is not seeing patients until mid summer. She is a psychiatrist, and I think her medical interventions may be minimal. She is very expensive if she does not take your insurance. There are a few newer families in Philadelphia, but I haven't heard of any doctor recommendations.

 

I would consider contacting a DAN doctor, and asking on the phone if they will treat pandas. Maybe they are a little more used to thinking outside the box.

 

What are your child's symptoms now? Is she/ has she been on antibiotics? My 5 yr old dd had her first episode this year. She is MUCH improved after a month on full strenght zithromax- but she still has low level anxiety, ocd, sensory issues, that were not there before. If you haven't tried zithromax- I think that is your first step. If her symptoms are causing great difficulty, you may want to consider a steroid burst (we have not done that, yet, but considering in the summer).

 

There is a great dr in DC (neurologist Dr Latimer), and one in NJ I also like (neurologist Dr Trifiletti)- if you don't find anyone locally.

 

Hi there,

 

Thank you for reaching out. After 2 years of dealing with this we are about at our wits end! The first episode happened in 07 and her symptoms were, food contamination, dying, natural disaster, feeling like she was going to throw-up which they diagnosed as acid reflux and put her on prevacid for a time. She had full blown panic attacks where she said she couldn't breathe. She also developed two tics. One was a very quiet burping and the other was a humming sound. She would not eat in the early stages. We did have her on antibiotics but i have to check the type. After a long process with 2 pschy. she slowly began getting more relaxed. The tics seemed to subside but there has always been low level anxiety, and worries about certain things.

 

This most recent bout in 09 she had the "acid reflux" symptom, fear of contamination, dying, hurricanes, tornados, tumors and the tics were back along with a new symptom, she wet her pants two times while she was awake and didn't know it and then one time at night. She still has interupted sleep.

 

Thank you for the information on Dr. Latimer and Dr. Trifiletti. I will keep you posted.

 

The frustrating thing is, there is no answer at this point. All of the parents on this board are struggling to find solutions, and will be of such a help to you.

 

What we have decided (for now): My dd first episode was in Feb. She was treated with about a month of zithromax, and has been on prophylactic zithromax since then. Next week she is having her tonsils out. By august- if we still see pandas behaviors, we will try a steroid burst- to see if we can get her to 100%. Unfortunately at this point I think we will continue prophylactic antibiotics indefinately (may switch to a more narrow spectrum at some pt). If she has another episode we will pursue IVIG.

 

All the best, feel free to pm me, and post as often as you need support/ advice.

[Kayanne]

I'm so sorry that you are in this boat with all of us!

 

PANDAS is so new to me and my family....I only found a direction after I found this message board at the end of May. The people who participate here are wonderful!

 

I was desparate after a frustrating meeting with and infectious disease specialist at CHOP--seveal posts have said that CHOP was not very helpful!

 

On Friday, we drove down to see Dr. Latimer. She was AWESOME! We live and hour and a half north of Philadelphia, and it took us 2 hours and 45 minutes to get to Bethesda, Maryland.

 

She is a pediatric neurologist who really understands PANDAS.

 

See the post "found a specialist--Jackpot!" by mommd. I would have to diddo everything that she posted!

 

Dr. Latimer's office number is (301) 530-9200. Her website is www.washingtonheadaches.com

 

I wish you the best of luck!

 

~Karen