Question about blood tests

[Momto2]

My daughter has had tics on and off for 6 years or so, never officially diagnosed with tourettes, just a tic disorder. We initially had her see a ped. nuerologist and she did an MRI and lots of bloodwork. Everything checked out fine. I was told part of the bloodwork was to check for strep. I never really asked about the details of the test, since they said it was negative. So anyway....she has been having a lot of strange behavior lately, very hyper and told me about these "thoughts" in her head. Clearly OCD type thoughts. I called the original neurologist, but can't get her in until the middle of February. I also talked to her ped. and she ordered bloodwork for her - seemed very open to the idea of PANDAS. Well, the nurse just called and said the strep test was negative, but they are also checking on the titres and this will take up to 2 weeks. Apparently, they had to send the bloodwork to the Mayo Clinic, they don't do it around here.

 

Even though they said she was negative for strep, could the titres still indicate PANDAS? I am really worried about her, especially the OCD issues. I don't know how to help her in the meantime.

 

Amy

[T_Mom]

My daughter has had tics on and off for 6 years or so, never officially diagnosed with tourettes, just a tic disorder. We initially had her see a ped. nuerologist and she did an MRI and lots of bloodwork. Everything checked out fine. I was told part of the bloodwork was to check for strep. I never really asked about the details of the test, since they said it was negative. So anyway....she has been having a lot of strange behavior lately, very hyper and told me about these "thoughts" in her head. Clearly OCD type thoughts. I called the original neurologist, but can't get her in until the middle of February. I also talked to her ped. and she ordered bloodwork for her - seemed very open to the idea of PANDAS. Well, the nurse just called and said the strep test was negative, but they are also checking on the titres and this will take up to 2 weeks. Apparently, they had to send the bloodwork to the Mayo Clinic, they don't do it around here.

 

Even though they said she was negative for strep, could the titres still indicate PANDAS? I am really worried about her, especially the OCD issues. I don't know how to help her in the meantime.

 

Amy

 

 

Hi Amy-- I am sorry, perhaps no one saw your post on the 9th, but after reading it I can understand why you are looking at PANDAS possibilities, certainly I think it is worth checking.

 

Sadly, the only way that most of us have determined our child has this autoimmune reaction causing OCD/etc. is by treatment effect!

 

The blood tests may or may not come back positive, many of us did not "have" a positive strep test come back, in other words, if I had it to do over again....I would beg, borrow, or steal (OK maybe not steal:) antibiotics for a month long trial--If there is sudden onset OCD, intrusive thoughts, movement issues, and the doctor does not have a diagnosis....I would ask them for a trial of antibiotics, to just "see" if it possibly could be PANDAS related.

 

At the top of the forum is a Helpful Threads post which has Buster's (a PANDAS Dad) FLOWCHART, of possible steps to treat.

 

If it is Ps -- as in the case of my two children, I only wish I had treated right away and aggressively, before they suffered needlessly.