Hang on to Your Hat...We Have Already Done IVIG

[SurfMom]

As some of you know, DD15 had a her first exacerbation that started around Halloween, bounced back beautifully with a high dose amoxicillin course, and then started an exacerbation at the end of November that as of two weeks ago still had not broken. Took her to Rothman to see a non-plussed ped psych who put us on yet another antibiotic and sent us home. We called again as she deteriorated and we tried another (call us back in two weeks, blah, blah, blah...). A call to the nurse told us that no only is Remfer leaving (no great loss) but Dr. M is not seeing new patients.

 

With a gut instinct that this was more than PANDAS and worried about her still deteriorating state, we pressed and got DD15 into her ped, neuro on the 23rd. Very concerned about her increasing catatonia, flat effect and chorea (for the first time) with tics, she made calls to Duke where she did her residency and we were seen there last Monday. This recommendation came with the understanding that no nearby hospitals are autoimmune centers with the ability to do IVIG if necessary.

 

A quick exam and the ped. neuro and ped, rheumatologist had her admitted and DD had a grueling three days of tests including PET scan, echocardiogram, a lumbar puncture dozens of blood tests (for pathogens, allergies, toxins, cbc, anitboidies, viruses, immunoglobulin, etc.) ultrasound for possible teratomas, and antibody tests sent to Mayo. In the thoroughness of her diagnosis we have seen neurology, psychiatry, rheumatology, a dietician, speech therapy, physical therapy and immunology.

 

By Thursday all the major concerns had been eliminated and we were looking at a diagnosis of autoimmune encephalitis (a broad category that would include PANDAS) with a recommendation for steroids and IVIG last Thurs the 31st with a second round of pred yesterday. The prep for the IVIG left her with no side effects and we already have a date for her second IVIG in late Feb.

 

We are now in a hotel near the hospital waiting for her to have some neuropsych testing before we leave town on Monday and we already have a date for her next IVIG at the end of February.

 

I realize that we had the good fortune of having a neurologist who had an excellent reputation as a resident at Duke where they have recently started an autoimmune center but we are stunned at how fast the diagnostic and treatment phases have taken place.

 

What we wish we had done and what we learned:

 

1. Don't hesitate to move beyond a pediatrician and get seen by a pediatric neurologist early on.

2. If your child does not improve with antibiotics soon like ours did, do not waste months moving from one desperate course of antibiotics to another for months and get on with step one. This is, after all...her BRAIN, joints and possibly heart. Unfortunately, for us and others, the symptoms could also be degenerative conditions, cancer or other causes in which time means everything.

3. Do not rest with a diagnosis with PANDAS. Step back and consider ruling out every other possible condition

4. Get your child to an autoimmune center like Mayo or Duke. There are several others around the country.

5. In marriage with four above, do NOT just seek out a ped neuropsychiatry program like USF and Rothman without a complete physiological workup. Deal with the psychiatry AND the physiology of what is going on. These two are tied together but they do not stand alone.

6. Be educated when you go in but do not be married to any name of the diagnosis. The reality is that every single autoimmune presentation and cause can be unique there are hundred and hundreds of antibodies and there are more being discovered every day. Treatments like IVIG cover a broad spectrum of diseases. Again, there could also be co-morbidity.

7. Be educated on your insurance and if your child is as sick as mine was/is you may want to push for admission to speed diagnosis and treatment if your coverage will allow it.

 

DD15 is already showing some signs of improvement and now after a grueling week she is sleeping off the effects of the diagnostics and treatment in one WEEK. We are not going to be Pollyanna-ish about her recovery and how long the pred and IVIG will hold, but we feel like we have a direction, some home and an gratitude for the speed in which she was diagnosed and treated. For the first time in almost three months yesterday, I saw my daughter SMILE with nary a tic in sight.

 

If you have questions, fire them off or PM. I am still out of town as we have neurpsych testing and travel home, but I will get to all of them.

Edited February 2, 2013 by SurfMom

[T_Mom]

Hi Surfmom, I am SO happy for you, your daughter sounded very severe and sinking, as mine did when we first "ran into" PANS...4 years ago.

We see Dr Latimer, is that who sent you to Duke???

 

You said the tests included: a lumbar puncture dozens of blood tests (for pathogens, allergies, toxins, cbc, anitboidies, viruses, immunoglobulin, etc.) ultrasound for possible teratomas, and antibody tests sent to Mayo. Was there one test that came back high or positive? Was there a blood result that sent you to IVIG?

 

We have done IVIG twice for our youngest d and she is again, REALLY struggling, and we need help.

 

Was there one doctor at Duke that you would recommend organize the intake/oversee the situation/tests?

 

Way to go -- you have done a great thing in getting the tests done and treatments going--I will pray they are effective very quickly.

My home email is tpv@umd.edu if you would rather respond there--

safe travels--

Tori

[T_Anna]

Wow!! I am so happy for you. Ok and yes and a bit jealous too. But you've given me hope too.

 

Hugs!

T.Anna

DS 14.5

[PowPow]

how is your daughter, Surfmom?

[beeskneesmommy]

I live near Duke and have not had good experiences with it regarding PANDAS. I am curious to know who the treating physician is? Please email me if you choose not to disclose on the forum. jleyba6465@msn.com I am very happy for you and your family!