S.O.S UGH.

[qannie47]

If you have followed, 3 weeks into an episode. I can safely say that this time around, it has had new symptoms. School called for me to pick him up. Nice, but at a loss. Short term memory loss in a big way. He seems unable to remember 5 minutes ago...Really????? High anger, high agitation. Picked him up and went straight to ped's office. He ordered an MRI. Called neurologist.(who could not see him until January..wt..) He ordered Tenex to calm him...gave 2 hours ago..NO EFFECT. I am losing my child. He looks and acts like the junkie that you see on the 6 o'clock news. MRI on Thursday morning. Might admit him to Children's Memorial Chicago, if Neurologist can't see him..have to get something going...OMG.

[qannie47]

p.s. aso titers NORMAL. but im not surprised

[PowPow]

Have you tried steroids? High dose? I cant remember.

Are you in Midwest?

[MomWithOCDSon]

Qannie --

 

I would be wary of Children's; their head of infectious disease (to whom we were initially referred in our PANDAS journey) is a very vocal PANDAS/PANS naysayer, and you will likely be quite quickly shuffled off to the psychiatric wing.

 

I'll admit that it has been 4 years, and perhaps other departments there (neurology or immunology) are more "with it" now; however, the same doctor remains head of the infectious disease department, so you definitely want to steer clear of that.

 

Perhaps some other locals can weigh in here with more recent experiences than ours, or with referrals for specific doctors at Children's who will treat you and your child with respect.

[MomWithOCDSon]

Also wanted to add that loss of short-term memory is fairly frequently seen among PANDAS kids in flare. My son once likened himself to his grandpa (who had Alzheimers) because he couldn't remember what he'd eaten for a meal just an hour earlier. He would also lose track of steps in typical, multi-step tasks, such as showering (did I wash my hair already? I can't remember if I washed my hair! What about my arms? Did I wash them yet?). It seems to be an executive functioning thing, and might be part of the "glutamate storm" that accompanies some of the inflammation and an open blood brain barrier. It does abate eventually, but I think it contributes to them feeling "out of control" and can feed the anxiety, as well.

 

Have you tried taurine as a supplement? It will likely not be instantaneous, but within a few days of taking it, our DS seemed to be able to hang on to thoughts and memories a bit longer . . . he could make it through a multi-step task like dressing or showering without losing track. Might be worth a try.

[PowPow]

The memory thing happened here, too. My daughter even forgot her baby sister had been born !

It has mostly resolved qfter lots of immune tx and longterm high dose augmentin.

Sorry I cannot offer short term help. can you get into to dr latimer?

[qannie47]

momwocdson, your description of short term memory, executive functioning is dead on..while my DS has been on the weak side of the fence regarding short term recall, it has never been this bad.....

[kc35]

I wish I could help but I am new to all this. But I just wanted to send out a hug. Take one day at a time and with the help of those here and the doctors you will get your son healthy again. I appreciate you responding to my questions considering all you are going through.

[Agnes26]

I'm so sorry. My DD's worst episode was as you described. She alternated between being feral and catatonia. She has absolutely no memory of those three months. I'm fairly certain it was strep for my DD even though she was culturing negative. There were many cases at her school. I have no idea what brought her out of it because we hit her with mega abx, ivig and finally, when she was ready, CBT. For us, the crisis --where she was totally non-functional-- lasted about a month. I relied heavily on family, who took turns coming from out of town to help.

[LNN]

CamK II is involved in the creation of memories. If it's high, it can interfere with recall and/or the formation of memory. I used to explain to teachers - "it's like all his knowledge was on index cards and stored in a card catalog. This disease came in the middle of the night and tipped all the trays upside down. Now all the cards are scattered on the floor. The knowledge is in there somewhere, but he can't find the right index card."

 

Anti-inflammatories helped with rages, as does niacinamide (vitamin B3). From your posts, it sounds like there's another infection. Not bashing your doctor, but he isn't reknowned for his willingness to consider a wide range of infections. I'd personally be asking him to order an Igenex test for you, but I don't know if he'd be willing. Maybe he'll order mycoplasma test? You could also ask about a C3d immune complex test. This test measures how activated the immune system is. It doesn't tell you what infection is there, but it can tell you "hey, the immune system is very busy in there - some enemy must be lurking."

 

I know how terrified you must feel. But try not to despair. Just keep digging.

[Dedee]

I agree with LLM, push your physician for more testing. Look through the archives and get a good list of baseline labs. You need some immune studies and some testing for bacterial and viral infections. At least if you get that done you will be ahead for the next step which is.............. Find a good PANS / PANDAS specialist or an LLMD to treat your child. You need to do this right away. Your appointment will most likely be a couple of months out so get on it right away. There aren't any regular physicians who can figure this out. Don't waste your time or energy there.

 

I know this is a very difficult time. Get through it one day at a time and accept help and support from family if they are helpful. Those who are not supportive, should just be avoided. You will get lots of information and support from everyone here. Educate yourself with everything you can find on PANS / PANDAS. Stay determined. You will beat this.

 

Dedee