Jump to content
ACN Latitudes Forums

Memphis PANDAS Pediatrician


Recommended Posts

So, we finally got in to see the ONLY Pandas pediatrician in Memphis this week and were so glad just to be in the room with a doctor that wasn't looking at all of us like we were green slimy aliens! Our daughter has been seeing two doctors, one a therapist, and the other a psychiatrist, since I first started posting here in April 2012. SOME things have gotten better, but most things have just morphed from one symptom to another, with the new one often times worse than the previous one. The doctor, Elisa Benaim, wasn't taking any new PANDAS patients, but she finally agreed to see our daughter. She spent a long time with us and really dug into DDs history. She said we are almost definitely dealing with PANDAS, although she could not say 100% positive just yet. The first thing she did was give her the flu mist and a 30-day round of augmentin which she begins taking on Monday. She's taking Zoloft and Trileptal, which is supposed to boost the Zoloft. It's given for seizures and BiPolar disorder as well. DD's birthmother was bipolar. I pray that isn't what we are dealing with, but as it might be, I suppose the Trileptal is good to have in her system.

 

Life has been just awful, really-really hard, these past few months. Her OCD symptoms are escalating. I am her primary trigger, and therefore the target of most of her rage. All the tics are gone now, but we are having rage issues in their place. PANDAS is a disease with which you cannot become comfortable. It is constantly changing so you just never know what you might see next.

 

On top of everything, our family unit is crumbling under the strain of me being in school and not having an income, my partner's mother being in the hospice stage of cancer, and our DD having PANDAS. I probably don't need to tell you THAT is NOT helping DD! She HATES HATES HATES change of any kind. She was always like that even before we noticed the tics. She thinks she can "fix" it, but, of course, she cannot. I personally think we should just hang on and see how it all washes out, but I am not the one making the push, so it is what it is. I cry myself to sleep almost every night. Surely there is a silver lining somewhere!

 

Hopefully the Augmentin will do the trick. I can say that we have both noticed that she really is much more like the little girl we remember when she is on antibiotics. We are supposed to keep a daily log of what we witness with the Augmentin and Dr. Benaim will take it from there. She mentioned other protocols, but this is where she starts, and it'll be just fine with me if I never have to find out what the other ones are!

 

Here's to 2013 being the year things go back to some type of normalcy in our household!!!!

 

Cindy in Mississippi

Daughter 11

Link to comment
Share on other sites

I am also a little concerned about the flu mist. Giving the flu mist to my daughter was what put her on the downward spiral we are still pulling ourselves out of two years later. Many PANS children have reacted poorly to the mist. Hopefully you won't experience the same thing. Many have had good reaponse with Augmentin. Keep us updated.

Link to comment
Share on other sites

Dr. Benaim explained the Flu Mist this way: When a PANDAS child gets the flu it is "10 times worse" than when a non-PANDAS child gets it. Because of that, she believes the good outweighs the bad. She has apparently seen nightmare situations. Anyway, so far, so good. Tomorrow we begin Augmentin 875 mgs for one month. If it works well, we get a script for one year. If not she has other options. There does not seem to have been any negative repercussions from the Flu Mist. She does not give the shot to PANDAS patients. I didn't ask why that was. It was a big day and that question just didn't get asked.

 

I have only been on this forum since April 2012 (I think). It just makes sense to me that there will be many protocols from the doctors chasing this disease. They learn from our children. Dr. Benaim seems sincerely concerned about the PANDAS children. I think unless the protocol is overtly strange, we owe it to her and DD to listen to her and try it. Honestly, in this case it couldn't get much worse. We are already pulling our hair out and hanging by our fingernails off the PANDAS cliff. Any movement in the forward direction is welcome at this point. I'm just so tired!

 

So, for now, we are praying for the best possible results from Augmentin! I will try to keep up with this forum even after I go back to nursing school in a couple of weeks. It's a good place to bounce ideas around.

 

Cindy in Mississippi

DD 11

Link to comment
Share on other sites

  • 2 weeks later...

My dd 7 sees Benaim as well. I am grateful for her. Our dd went undiagnosed from the age of 3. Last October marks our 1 year anniversary in treatment. The initial diagnosis came from Dr. Greg Hennessien (sp?), our allergist. Currently we are appealling for IVIG w/ Dr. McVicar, neurologist, that was turned down by insurance in the fall.

 

I am sending you a pm with my contact info.

Link to comment
Share on other sites

Cindy, I am so sorry -- I read your post and completely understand the feelings you are going through --

We had the same, OCD (severe) that morphed into severe ODD, hating, yelling, etc. very bad -- the year before last during a PANS episode.

 

We let it linger in our d for about 5 months as we fought insurance for pex, finally did IVIG out of pocket as (pex was never approved) and with the IVIG she started to literally change back to herself within 48 hours -- and continued (with ups and down) for a long slow, but in the right direction (!) obvious recovery.

 

I can tell you that within three weeks it was so much better after IVIG that we were amazed.

 

It is a long haul for recovery, but essential that you get the help you need as soon as possible, as things can get worse. How long are you willing to wait if you don't see improvements with the Augmentin? Is IVIG an option you might consider after a month? I wonder about the zoloft issue, as that can be a trigger for some kids if the dose becomes too much --

 

We lost essentially a whole year of my daughter's life to one exacerbation -- we never would have waited if we had known IVIG would have affected her so positively.

 

I hope you find an effective treatment, and soon -- hang in there.

Link to comment
Share on other sites

How much does the IVIG cost and where did you have it done? Was Dr. Benaim involved in that in any way?

 

 

We see Dr L and the costs for IVIG are dependent on whether or not your insurance company will cover it.

Lots of info on this on the forum, search for IVIG and insurance. Even today there is a thread on it--

 

http://www.latitudes.org/forums/index.php?showtopic=19365&pid=152280&st=0entry152280

 

Best to you--

Edited by T.Mom
Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share

×
×
  • Create New...