ER again today ...

[rockytop]

May not be the approach you are looking for(or maybe you already tried it??)is risperdal. I described it as if my child's brain was on fire. risperdal really helped. we gave it for over 7 months (it comes in a liquid form) and we put it in drinks, food- as one of the OCD things we deal with is refusal to take medication (after a year of very large amounts of meds and supplements for lyme and babesia.) treating those did obviously not take care of the PANDAS/PITANDS- my child even had IV anitbiotics for many months.. but I digress...

 

we tried many other meds and had disastrous results and some had zero effect.. but risperdal- that stuff worked!

Edited May 26, 2011 by rockytop

[EmersonAilidh]

May not be the approach you are looking for(or maybe you already tried it??)is risperdal. It REALLY took away the rages we were all suffering through! I described it as if my child's brain was on fire. risperdal really helped. we gave it for over 7 months (it comes in a liquid form) and we put it covertly in drinks, food- as one of the OCD things we deal with is refusal to take medication (after a year of very large amounts of meds and supplements for lyme and babesia.) treating those did obviously not take care of the PANDAS/PITANDS- my child even had IV anitbiotics for many months.. but I digress...

 

we tried prozac, luvox, clomipramine, abilify, seroquel, valium, ativan, more probably and some had disastrous results and some had zero effect.. but risperdal- that stuff worked!

 

I was on way too many meds when I was taking Risperdal/Risperidone to really attest to its effectiveness, but I do remember not having any rages that whole time. It's normally for Schizophrenia, but doctors aren't very scared to prescribe it, especially for tics.

[browneyesmom]

Hi Colleen... nice to see you again... or sorry you are still here... not sure which. I haven't talked with you since I was here about a year ago; how are your kids doing now?

 

Yes, in the middle of the 3 weeks of Augmentin 500 mg TID, she tested + for strep throat & our PED added a Z pack. I think what is causing these recent horrific episodes is that once she completed all of those, he dropped her (despite my concern) to 500 mg Augmentin QD... within a few days, we were into these exacerbations, which have been much worse. I would like to see her on the Augmentin XR and if they will add in the z-pac for a while, that would be great also! How long did you have them on it and what dose, if you don't mind me asking?

 

I worry what might be happening in her brain every time she has one... as with seizures, there can be more damage and I just don't know.

 

Yes, an EEG is another test I'd like run... seems to be an endless list at the moment... I'm hoping Dr. B will be able to help with diagnosis & treatment.

[browneyesmom]

Sigh... yes, she is on way too many meds! However, I'm open to considering and discussing anything that will help her get better and reclaim her life, so thanks for the input on Risperdal!

 

EmersonAilidh... did you see my post about your episodes and if they are similar to my daughters? It's in this thread - page one. I'd really appreciate your input on that if you have a moment. Thanks!

Edited December 21, 2010 by browneyesmom

[colleenrn]

Nice to see yo here too, or not, too.

 

My kids are doing sorta OK with flareups here and there. The boys are mostly adhd type symptoms and irrtitability with occasional minor tics also. It is my oldest (14 year old daughter)who has the ocd/anxiety/tics/fear symptoms who is in a flareup now. My oldest 3 have been on 2 years of daily zithromax 250mg and doing much better than 2 years ago. The 3 oldest had T & A, and the youngest will most likely oinnext year. He is on daily augmentin 250mg BID since May. he was very very sick in May and it all started with strep. Before May, he had strep multiple times. Since daily Augmentin he has been much bettter- still flareups, but bettter than without Augmentin. My 14 year old was not doing well on only daily zithromax and responded to about 40 days of Augmentin xr 1000mg BID (Saving Sammy dose). Two weeks after discontinuing the aug xr but stilll on daily zithromax, she decompensated. Today we put her back on the aug XR 1000mg BID and see what happens. We will most likely wait a week and if not good results, do a month long steroid taper. She had good results this summer when we did a five day steroid burst. On a scale from 1-10 with 10 the worst, she is an 8, which is bad for her.

 

I am just going to give you my unsolicited advise on zithromax. I think perhaps your daugher has an active strep infection now due to only 5 days on zith and only QD augmentin. This has happened with my children. If it were me, I would get her on a daily good dose of zithromax for an extended time- at least 3-4 weeks. It can take that long, at a treatment dose, to get to the strep. If it is intracellular right now, the augmentin will not take care of it. Yo could present it to your physycican that you want to try this based on other PANDAS kid's experiences and also you want to try that before going to any neuroleptics. How much does she weigh? I ask this b/c even though the "standard" dose of zith is 250, that is not always enough depending on their weight. My daughter has responded very well in the past during a flareup when she has been exposed to strep-not sure if she had it but think so, to an increased dose of 750mg of zithromax for a week.

 

Good luck. thinking of you.

Colleen

[Stephanie2]

Just wanted to share with you that back in Sept my 2yo went into sudden onset pandas symptoms, very severe. 36 hours later I took him in to have a throat culture done and the rapid came back with a faint line. Then 2 days later the culture came back negative. We went ahead and treated with augmentin and he got much better. Also at that time ds6 was exhiboting fears and other pandas symptoms (which remitted with augmentin), and I had a sore throat (which remitted with azith). I am very confident that faint line was the explanation to all that.

[browneyesmom]

Stephanie! Thank you for sharing that... gosh, I know the doc in the ER thought I was wacko for insisting she still has strep, but I didn't care! I talked with a follow-up nurse today (who was doing a routine call about our visit to the hospital) and told her that while everyone had great bedside manner with her and seemed to want to help, they simply do not know enough about this condition and I want them to know more. She agreed. She asked me to get back to her when I learn more information from our specialist as she would like to see an in-service done - yay!! Me too!!!

 

Colleen, she is 70 lbs. She was on Aug 500 TID for about 3.5 weeks when he added the z-pac for the standard 5 days. Once she completed all of those, he dropped her (even with my questioning it with the nurse) to 500 Aug QD... only lasted maybe 3-4 days as she declined rapidly and has had 2 ER visits, so he bumped her back up to the Aug 500 TID. I expect he will call me either today or tomorrow and I will ask about the change in antibiotics. She has also never tried the Aug XR, far less 2000 mg total QD.

 

This evening, she did have another exacerbation, but only mildly aggressive for a short period of time and is on the way back out now, playing Life with my ex, who is here for his visitation with her. Usually, they go see his dad, but just wasn't happening for her this evening. She still seems very fixated on things, but he's managing her well with minimal intervention from me to help.

[browneyesmom]

Oh, forgot one other thing... because of her immune deficiency, I suspect that if she does not improve with the weekly SQ infusions, that we really need to address getting that bumped up via IVIg instead of SQ. I know that they should be able to do them as often as every 21 days, from what I have read.... our immunologist offered monthly... these are the reasons we really need a specialist in PANDAS. I'm looking forward to hearing back about what Dr. B has to say about all of this and how to help her.

[EmersonAilidh]

Thanks EmersonAilidh... do the episodes you experience follow a similar pattern to my daughters? Are you able to talk in the midst of them? Do you have the limpness/lack of responsiveness at the end of them as well? Do you remember them afterward? I hope things are going better for you and thank you for the prayer... we covet them these days!

 

Sorry, just now saw this! I'm bad at checking replies. :/

I imagine that the limpness would be common, I know it's a part of my rages, even though I haven't seen it talked about much. I think it's just because, for me at least, I can tense all of my muscles & lock all of my joints for however long the rage lasts. I don't think the limpness is really a symptom in & of itself so much as just a result of how physically (not to mention mentally) exhausting a rage can be. I know that after a bad rage, the ones full of crying & screaming & general chaos, I just... lay there. Not really feeling anything in my head & not very able to move. I imagine my body's just mad at me, haha. I hate saying it so bluntly because it sounds so odd since I normally come off as pretty well rounded on here, but my rages are only taken out on myself. They start with digging my fingernails into my skin, pulling out my hair (head hair, eyelashes, & eyebrows), then get to the joint locking, which is normally in my knees, elbows, & fingers. I can do "finger locking", which is really weird. The joint locking is normally accompanied with really bad neck stiffness. The rage normally ends with hitting my legs. I wasn't able to wear skirts for a while because my legs were so bad off. I've bought fake nails (they're duller & can't do any damage when I rage), draw my eyebrows on, wear fake eyelashes & hair now to try to balance everything out, if that makes sense. & no, I can't talk. Well, I can't like, have a coherent conversation. I normally just run up to my room & whimper/cry/yell. Sometimes it'll be an actual sentence or something, but more often than not it's just mumbojumbo. :/

 

About to go add a better description to Amanda's "What does a rage look like?" discussion.

[browneyesmom]

Thank you very much for responding about what I know is intimate information & yes, it does make sense; I appreciate you so much. It is so helpful to know that what I am seeing is rather typical. Please do not ever be concerned about how you come off here... every single one of us here realizes that PANDAS is a monster and it tears apart lives. It is not your fault you are battling this medical condition. I hope things improve for you soon, hon & thank you again. Hugs ♥