New---with questions!

[sjh]

Hi-- I am the mother of an 8 year old girl whom I adopted at 18 months of age from Kazakhstan. I have no past medical history except that she was abandoned at birth, reared in an orphanage and had chicken pox in the orphanage ? age and tested positive for maternal antibodies for Hep C (she was negative when tested at the appropriate age). My daughter was always a perfectionist and was comforted by orderliness..but approximately 1 year ago, she experienced a sudden onset of acute separation anxiety and 'checking', regression, handwriting changes, fear of urinating on herself, and worry about everything that I associated with the loss of a good friend (moved away) and our temporary relocation from Hurricane Gustav (we live in South Louisiana) and the trauma resulting from the family disruption, fear and anxiety. Unfortunately, her symptoms have waxed and waned and her "Mr. Bossy" tells her to perform rituals, check, seek MUCH reassurance and meltdown due to the frustration and fear associated with her actions. I am a psychiatric nurse and recognized these symptoms as OCD behavior which I thought related to the trauma/anxiety that she was experiencing. It was not until I began researching pediatric OCD and sat down and linked her frequent strept infections with the onset of the behaviors that I became aware of the link and possible diagnosis of PANDAS. She sees a child psych in New Orleans who prescribed Zoloft for the severe separation anxiety (it has helped) and she has taken a battery of tests at LSU in Baton Rouge and is going thru ERP behavior therapy with some positive (although slow) results. She was diagnosed with Separation Anxiety and OCD--and to monitor for correlation with strept infections for possible PANDAS diagnosis (ASO titer was WNL and rapid strept screen were negative when her pediatrician first prescribed the Zoloft for the anxiety).

 

Approximately 4 weeks ago, my daughter began an exacerbation of symptoms while we were on vacation and approximately 2 days later, began complaining of an ear ache and sinus congestion and was treated by her ENT with ear drops for swimmers ear. Her OCD behaviors began morphing into more rituals and meltdowns but seemed to level off until 3 days ago when she completely lost it and went into a full blown rage, complex rituals then broke out with a rash on her chest and a white coated ‘strawberry’ tongue which I associated with a throat infection. I brought her to her pediatrician hoping to get some antibiotics to help her and thru a LONG discussion, was told he thought it was viral and she would not get antibiotics. I practically begged and cited (although I did not bring) reports detailing the need for antibiotics even though it might not be strept but he would not buy it—he is VERY conservative—always has been.

Long story short, I acquired some Augmentin and started her on it last night. I do not promote self-medication and am somewhat uncomfortable with my choice but feel it is my only recourse until I find someone who is willing to listen and understand this issue. I will watch her closely for any symptom changes and am cautiously optimistic and anxious to see the results.

 

In the meantime, I am looking for a pediatrician or another provider in Louisiana who can and does understand this horrible illness. It has been a year of ups and downs and my dear child is so brave but exhausted in her battle--Does anyone have any suggestions? I am at the end of my rope!

[ShaesMom]

sjh,

 

Sorry to hear you are going thru this. There are many people here who understand exactly what you are experiencing so know you are not alone. I would suggest you take the time to read through some of the old posts. You will find a lot of good info.

 

the rash on her chest automatically makes me think of scarlet fever. Many kids have a negative rapid test strep test and ASO titers but do indeed have the infection. Was it sent off for culture? If it is Pandas, you will likely notice a big improvement over the first 24 hours on Augmentin.

 

I personally don't have any experience with it but many parents have said that their kids symptoms' have actually gotten worse when put on OCD/anxiety meds.

 

Many parents have said they see an improvement with a daily dose of Ibuprofen, some kids respond better only to the dye free brand. this is one of the things I do for my dd7.

 

If you haven't already, start keeping a journal, it can be very crude. Include her symptoms and behaviors on any given day and possible triggers. Rate her anxiety on a scale of 1-10 on a daily basis. Ask daycare providers or teachers to do this as well. Also include meds that have been given. Keep copies of her handwriting before an episode and after you believe she starts one. Make a list of all the symptoms she has had in the last year. Make sure you included any improvements you see on abx. Send a copy of all this info to every new doctor you see along with a letter stating why you are coming and what you expect out of the appt (this saves time and gives them a chance to research Pandas if they have never heard of it.). Also, get a copy of all lab results to keep and start a three ring binder with all her medical records. Some docs charge for these-some don't. Once you get these, read them all. Start looking for red flags or a pattern that someone may have missed.

 

In my dd's records, I have found that about every time I've taken her in I told them that one of her symptoms was a "change in behavior" That's a big one with Pandas so I'm really glad I always mentioned it.

 

Go to Dr. K's website, webpediatrics, and consider contacting him after you have complied all your info.

 

We have had good luck here in nebraska with our Ped, GI, and now we have a Allergist/Immunologist on board as well. With the exception of the Allergy doc, they are all younger--probably graduated within the last ten years.

 

Welcome to this wonderful journey called PANDAS!

 

Sam

[Mustang Carole]

HI,

 

Try...Stephanie Cave, M.D.

 

cypressintegrativemedicine.com

 

10562 S Glenstone Pl

Baton Rouge, LA 70810-2875

(225) 767-7433

 

 

She GETS it!! DAN Dr...met her on her lecture circuit..

 

M.C.

[sjh]

Thank you so much! I can't wait to schedule an appointment.

sarah

[sjh]

Thanks for the info-- I have been steadily plowing thru many of the posts here. Although it is overwhelming, I do find comfort knowing that others are 'out there' too.

sarah

[colleenrn]

SJH-

The behavioral symptoms sound just like PANDAS and the physical symptoms sound like scarlet fever. The rash and the strawberry tongue are classic symptoms. Did your doctor do a throat culture? I really hope so given her symptoms, but if not, I would insist on a 72 hour throat culture ASAP. That is good that you obtained Augmentin, just make sure she is getting a high enough dose of it.

 

Children weighing 40 kg (88 pounds) or more are given the same dose as adults. The usual dose is one 500-mg tablet of Augmentin every 12 hours or one 250-mg tablet every 8 hours.

 

For more severe infections, one Augmentin 875 mg tablet every 12 hours or one Augmentin 500 mg tablet every 8 hours may be recommended. It is important to note that two 250-mg Augmentin tablets are not equivalent to one 500-mg Augmentin tablet (they contain the same amount of amoxicillin, but not the same amount of clavulanate potassium).

 

 

Hang in thre!

Colleen