Can someone enlighten me please?

[kimballot]

MRI was ordered b/c of the "seizure like" activity she was presenting. EEG showed no seizures, MRI showed right side of brain inflammed? Also showed retention cyst on right maxillary. They then did more bloodwork and after her results came in and it showed her ASO to be 768, he then ordered DNASEB. I will find out the results Monday on that test. She has just been exhibiting alot of these symptoms for years now? I'm new to this so I asm still trying to gather all the information and advice that I can and I thank yall.

 

Destiny - It sounds like you have good doctors who are really looking to help you. Who gave you the diagnosis of PANDAS? I think you are moving down the right path here. I really think your ENT appointment will be fruitful - as well as the rheumatology appointment. Hopefully ENT will order antibiotics at the very least. I would ask ENT about getting her immune system tested. They might order the bloodwork or they may refer you to an immunologist. Many of our children have immune deficiencies and these are underlying their infections.

 

Be sure to bring this article to the ENT appointment. http://www.partnerstx.org/Resources/TS/ImmunobiologyofTDandPANDAS.pdf It is very current and really talks about how strep can trigger PANDAS symptoms, but so can other things, (including sinusitis). In fact, it even starts off with:

 

Dr. Laurence Selling made one of the earliest reported cases of

this potential correlation between the onset of tics and infectious

disease in 1929 when he described three cases of tics associated

with sinusitis (Selling 1929).

 

Your daughter has elevated strep titers - which will help to lend some credibility to the PANDAS diagnosis. I am not from your part of the country, but I think there are some folks on her who have had good luck with some PANDAS docs in Texas and some in Florida. You may find that you need someone who understands PANDAS specifically - down the road.

 

The nighttime problems you talk about are not uncommon for our kids. I think we've all experienced them. Have you looked at the pinned threads on the top of here and at the other PANDAS websites like PANDAS resource network and PANDAS network?

 

You can try using ibuprofen around the clock for a few days (if she does not have any reason to NOT use it). It may reduce inflammation and bring the symptoms down a bit. There are many other supplements that folks on this forum use and you will come to learn about them as you navigate through this site.

 

Let us know if you have questions!

[Destinys_Mom]

I can;t tell yall how much I appreciate all your advice. I have a numbing feeling that my 9 yr old son has this too bc of his symptoms. I am planning to have his bloodwork done Monday if all goes well. This week is crazy as I go for Pre-Op on Monday and surgery prob Friday. So I have to "heal fast" as we have a Pediatric Cardiologist appt Monday at 8:30.

[EAMom]

I can;t tell yall how much I appreciate all your advice. I have a numbing feeling that my 9 yr old son has this too bc of his symptoms. I am planning to have his bloodwork done Monday if all goes well. This week is crazy as I go for Pre-Op on Monday and surgery prob Friday. So I have to "heal fast" as we have a Pediatric Cardiologist appt Monday at 8:30.

 

Oh dear! I hope you have an easy recovery!