Extreme exacerbation

[Mary M]

Our dd12 asked us to take her to jail or the hospital tonight. She is in such extreme exacerbation. Dh and I both had the flu today so we assume our germs have sent her into a downward spiral. Our reprieve from the steroid burst literally lasted through one great night and a couple of decent moments for a day or two. The burst ended Monday. We did take her to Children's Hospital of Michigan tonight. They listened attentively, believed every word about PANDAS, reassured us that the abx she is on are the right course of action and discharged us. DD12 said she was fine when asked, her behavior was guarded, she did show some mild anger but nothing to cause them to worry. She didn't want to leave when they discharged us. She wants to be admitted to psych. Right now we are home...She is absolutely raging, throwing things, ripping things, screaming at the top of her lungs, ranting, ocd-ing, she's naked, naming rules over and over, lashing out at us...what can we do? IVIg was supposed to be June 14-15 or 16 but when I spoke to Diana at Dr K's he was already booked so she said last week of June--still don't have an exact date, though. Appt with neuro here in Detroit in a week or so mostly because I think we need a local specialist beyond our ped. The rage is so intense...what can we do? She's angry that no one is seemingly helping her...she has a right to feel that way. She's angry she has a disease that's making everything so hard...she has a right to feel that way, too. I know there are no answers....just needed to say it to someone who would care...

[peglem]

Have you tried valerian root? It has a calming effect similar to valium. It may at least take the edge off. It does help to calm my daughters rages. I'm sorry to hear things are so rough...and so sad to hear that your daughter is so desperate for help.

[EAMom]

 

What antibiotic is she on and dose? (How much does she weigh?)

 

I would also start Advil. I think 400mg 3-4x daily would be okay for a 12 year old, but this probably depends on her size as well. Make sure she takes it with some food.

[KeithandElizabeth]

I am so sorry.... I can relate to the pain your whole family is experiencing right now.

 

I can say that our son always reacted to anyone else in the household who had the flu or even a cold.

 

I would recommend using motrin as often as you can to help reduce inflammation. During our worst episodes, bentonite clay and/or charcoal pills really helped bring our son back. We would try to give him a cup of bentonite clay (you can mix it with frozen strawberries in the blender so you cannot taste it) or ten 260 mg. charcoal pills.

 

Is your dose of antibiotics high enough?

 

 

 

elizabeth

[Mary M]

She was on 1440 mg aug xr twice a day but Dr K switched her to aug 875 twice per day May 26.

 

I asked Dr K about ibuprofen and he said it's not a long term solution but I'll start it now...something has to work. This is so awful.

 

I'll get valerian tomorrow.

 

Thank you all for offering help...we are so desparate at the moment.

[Mary M]

She's 75 pounds.

[LNN]

Has your daughter been using any CBT or ERP? It won't necessarily stop the rages, but it can make them a lot more manageable. Therapy starts with the concept of "naming" the OCD and the anger and helping your daughter realize the disease is something she has, not something she is. Then she has an "external" enemy to fight. If you haven't read it yet, you might find some help in John March's "Talking Back to OCD". Since you are unfortunately weeks away from more aggressive medical treatment, therapy might make it easier to get thru the month. Fighting this disease is a two front battle - medical and therapeutic weapons used together can really help the family get thru the worst of times. It really helped keep my family together on many occasions.

 

I would also make sure Dr K's office has you on a waiting list, just in case something opens up sooner.

[bgbarnes]

Our dd12 asked us to take her to jail or the hospital tonight. She is in such extreme exacerbation. Dh and I both had the flu today so we assume our germs have sent her into a downward spiral. Our reprieve from the steroid burst literally lasted through one great night and a couple of decent moments for a day or two. The burst ended Monday. We did take her to Children's Hospital of Michigan tonight. They listened attentively, believed every word about PANDAS, reassured us that the abx she is on are the right course of action and discharged us. DD12 said she was fine when asked, her behavior was guarded, she did show some mild anger but nothing to cause them to worry. She didn't want to leave when they discharged us. She wants to be admitted to psych. Right now we are home...She is absolutely raging, throwing things, ripping things, screaming at the top of her lungs, ranting, ocd-ing, she's naked, naming rules over and over, lashing out at us...what can we do? IVIg was supposed to be June 14-15 or 16 but when I spoke to Diana at Dr K's he was already booked so she said last week of June--still don't have an exact date, though. Appt with neuro here in Detroit in a week or so mostly because I think we need a local specialist beyond our ped. The rage is so intense...what can we do? She's angry that no one is seemingly helping her...she has a right to feel that way. She's angry she has a disease that's making everything so hard...she has a right to feel that way, too. I know there are no answers....just needed to say it to someone who would care...

I don't have any solutions- I just wanted to let you know you are not alone! It was an episode like that where I ended up in the parking lot of a hospital and then ds started coming out of it so we drove home that led me to PANDAS so I know the pain, and fear you are going through. I pray she comes down soon. Can you do another steroid burst?

Brandy

[tpotter]

Mary...I agree with trying to start another steroid burst.

 

Also, we found...purely by chance, that 1-2 T of peanut butter (a small handful of peanuts works, too), stops my son from raging within minutes! Most doctors laughed us off, but Dr. K. believed it. We found (researching "why?") that it is full of tryptophan (a precursor to seratonin) and fat (which takes it right to the brain.) Dr. K. said that PANDAS uses a lot of seratonin, because of the stress it causes), and even recommends 5-HPT (which is basically, seratonin.) So, we always have peanuts in my purse, so when mood starts to change, I force him to take the "peanut medicine." For the record, he hates peanuts, so it is not a placebo in our case.

 

Give it a try, as long as she's not allergic to peanuts. It can't hurt, and you might just have the great results we got. I'd love to know the results (if anyone else tries it, too.) When he's really having major mood swings, I just start giving him peanuts every 1/2 hour to 1 hour to stave it all off. Please PM me directly if you'd like, with results.

[wornoutmom]

Mary -

 

I PM'd you with my phone number. Call me!!!!!!!!!!!!!

 

-Rachel

[Worried_Dad]

Why did Dr. K reduce the augmentin dose and switch from XR to regular? For our son (14), the higher dose of XR has been a lifesaver!

 

Per EAMom, ibuprofen also seemed to help moderate our son's symptoms during exacerbations.

 

So sorry for your ds and family. Our son was similarly despondent and suicidal at several points when no treatment seemed to be working. Hang on - with the right abx and IVIG, things will get better!

 

 

She was on 1440 mg aug xr twice a day but Dr K switched her to aug 875 twice per day May 26.

 

I asked Dr K about ibuprofen and he said it's not a long term solution but I'll start it now...something has to work. This is so awful.

 

I'll get valerian tomorrow.

 

Thank you all for offering help...we are so desparate at the moment.

[EAMom]

Is there any way to up/change back the antibiotics? I don't know how high you can go with the XR (I've heard 4000/day for an adult)? I also wonder if Azith. would be better...500mg/day.

[Tenacity]

Boy, does this sound familiar! I wish I had a quick fix -- and, of course, I don't!

 

My advice, as a fellow parent of a kid very sick with post-infectious neuro-psychiatric autoimmune disease: stay brave; be confident that this horrific episode will pass; yes, let Dr. K know that, should there be a cancellation, you want the open slot; and, yes, ask Dr. K whether there's anything you can do (such as a short administration of steroids?) to tide you over til you can get more help.

 

GOOD LUCK! -- AND NEVER GIVE UP! (I give myself the same trite, and nonetheless IMPORTANT, advice every day!)

 

Tenacity

[mama2alex]

Mary,

 

I didn't read all the replies, so maybe someone else already suggested this. Email Dr. K and let him know what's happening. MKovacevic@aol.com.

[Mary M]

Has your daughter been using any CBT or ERP? It won't necessarily stop the rages, but it can make them a lot more manageable. Therapy starts with the concept of "naming" the OCD and the anger and helping your daughter realize the disease is something she has, not something she is. Then she has an "external" enemy to fight. If you haven't read it yet, you might find some help in John March's "Talking Back to OCD". Since you are unfortunately weeks away from more aggressive medical treatment, therapy might make it easier to get thru the month. Fighting this disease is a two front battle - medical and therapeutic weapons used together can really help the family get thru the worst of times. It really helped keep my family together on many occasions.

 

I would also make sure Dr K's office has you on a waiting list, just in case something opens up sooner.

 

We've been seeing a psychologist who specialized in CBT with children for over 3 months. She discontinued services this week as she felt it was more detrimental to continue without any success. Citing that future success of therapy after the medical piece is resolved would depend on our dd's opinion of how the therapy went now. Everything is pretty much on hold right now.