ER again today ...

[browneyesmom]

Headed off one episode this am where she was insisting on painting my toenails to the point of shoving the spacers between my toes and hurting me, then grabbing for my feet when I pulled them away. Suggested we do hers instead and the diversion worked. Later today though, went into a full blown rage, attacking me: biting, hitting, kicking, pulling my hair (some of it literally out of my head). It was the first time I thought she might actually overpower me... she is a 70 lb, 11 year old child... strong as an ox when she has these episodes! I had to call 911 ... again. I was near tears this time - first time I couldn't maintain my demeanor for a while; really shaken - first time she bit me (twice) and pulled hair out of my head. Calmed down enough to help the paramedics... before they could give her the Valium IM (I hate this!!!!), she moved into the flailing stage and I told them that she was past the combative stage and once she passed this flailing stage, she would become limp & remain unresponsive for a while, then she would start to respond and slowly come out of it. That is exactly what happened - was in the ER when it ended - she had eye blinking for a while after - same pattern for the one when we got home - see below. She never got the valium, thankfully... frankly, was flailing too much for them to administer safely. Interesting, today they told us that Saturday's strep test was negative - her dad and I clearly remember being told it was positive. ??? Culture was negative. Today's strep rapid test was negative & chem panel WNL. I asked about titers... they didn't draw them. She remains on the Augmentin 500 mg TID for now.

 

So, we have appt with Dr. B in CT on Feb 3 - got it this am. Her pediatrician called us back while we were in the ER. Suggested Ativan for the next few days while he tries to reach Dr. B and gets back to us with a plan... dear Lord, I hope it is to see Dr. B soon!!! Also gave him Dr. Latimer's name - let them all consult and get her well - no more bandaids - someone stop this hemorrhage!!!

 

Got home, gave the Ativan & 300 mg Ibuprofen and she STILL had another episode this evening.

 

I am scared that every time this happens... something is happening in her brain and we may not be able to bring her back in one piece to a place of stability. I feel so totally helpless to help her.

[browneyesmom]

... and I forgot to ask... is anyone else doing SubQ Ig? Is this typical for them to get worse for a while before they improve???

 

I realize we may be better off switching to the IVIg or PES... that is why I am trying to work with Dr. B...

[emmalily]

Hi, I just wanted to say that Augmentin 500 2x daily actually made my symptoms worse. About two hours after I took it I would have a little PANDAS "spell" which I think is actually a some sort of seizure where I would feel very ill and the OCD would get very, very bad. Are you noticing a pattern with her attacks? Is it a certain amount of time after taking the Augmentin? A stronger dose worked fine for me. Maybe nothing, but I wanted to give you the info.

[browneyesmom]

Hmm... thank you - had never thought to track that before - want to get a speadsheet together to track all of this better, but can't seem to get a moment to make one. She is on 500 mg TID, so a total of 1500 mg a day. I will watch for that - thanks!

[EmersonAilidh]

Don't have any antibiotics or dosage advice, but just wanted to offer my condolences!!! If nothing else, I'd try some Valerian root to help her chill out. I used to drink it in a drink so I don't know about the dosage on that one. If the Ativan's not doing the trick though, then I dunno. :/

 

Feel free to message me anytime you need to vent! I understand rages & following limp stages pretty well, if I do say so myself. I'll pray for you tonight.

[tpotter]

I so totally feel for you. We've been through very similar stuff, but were able to control the rages without calling EMT (barely several times, and for some reason when I would start to cry, the attack would stop long enough for him to run to his room.

 

I'm SO glad your pediatrician is actively involved. That is fantastic that he is calling Dr. B. and Dr. L (although he might not hear back from Dr. L, but at least he's trying.) Dr. B. will call back.

 

Here's another suggestion in the meantime. Dr. K. suggested that we use 5-HTP, and we still use it religiously. When I try to decrease the amount I give each of my boys, they get worse. 5-HTP is tryptophan, which is a precursor to seratonin. We give my 17 yo (oh lord...he'll be 18 on Thursday!) 4 each night, and my 15 yo gets 3 (I can't remember what happened when I gave him 4.) But, it also helps them sleep.

 

Alternatively, I've suggested this before, and I'm still waiting to hear back from parents who tried it (PM me with results, because I'm really curious if it works for you guys, too.) Peanut butter is full of tryptophan, and I have found tremendous success with 1 - 2 T of peanut butter or 1 small handful (enough to fit in his mouth) of peanuts as he's going into a rage. My 15 yo HATES peanuts, so there's no way this is placebo for him. When he's already in a rage, I have to wait until he calms down...even for a few seconds, and I threaten to take away something important if he doesn't take it immediately. I swear, he's back to normal within 3-5 minutes. If he's not 100%, I give him a 2nd "dose."

 

 

After my 15 yo got PEX last year, he was able to discern between his rages and extreme anger (the latter he can control.) He can now tell us when he's going into a rage, and runs to his room. He said it is a huge adrenaline rush, which is what I totally suspected (especially since he is able to lift both my husband and me off the floor simultaneously, and remember nothing about it.)

 

But, there's also probably one more thing you have to check out. These could be seizures, too. Fronto-temporal lobe seizures can cause this kind of behavior. My son was found to have abnormal brain waves repeatedly, but the behaviors never showed up during the abnormal brain waves. PANDAS affects the frontal lobe of the brain, so there's some suspicion that these may not be true seizures, but never-the-less, seizure meds have helped decrease (even slightly was better than nothing) the intensity of the rages.) At least now he's aware of when he's having one, where as before the seizure meds, he sometime didn't remember.

 

So, even if Dr. L can't see you, you probably should have an eeg done (I would recommend possibly in the hospital for a few days, because of the risk involved, and you also want to make sure you catch the events.)

 

Good luck, and I will very much pray for you.

[tpotter]

Oh...one more thing. Dr. L uses Augmentin XR 1000 mg BID. I would mention it to your doctor. Augmentin XR worked so much better on my kids than straight Augmentin, and we also used the higher dose (I think it's the Saving Sammy dose.)

 

We don't currently use it, because we're using so many other meds for Lyme, MycoP, etc, but I just thought I'd mention that.

[browneyesmom]

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!

 

Thank you, tpotter... my daughter likes peanuts & peanut butter just fine! I'm delighted to learn of something else I might try. She usually refuses all food & meds when in an episode, but maybe... if I can get her to eat it if I catch it early in the episode, it will help her.

 

Yes, I've wondered about seizures... and no, they are not like "true seizures"... the paramedics yesterday also commented that they are different. I talked with our pediatrician on the phone at the ER about Depakote or something similar for her... gosh, I just hate all the meds she has to take already! I expect I will hear more from him when he calls me back today after reaching Dr. B... Dear Lord, I pray he can help her.

[browneyesmom]

Yes, I want to find out about the Augmentin XR too.... I have Saving Sammy, but am having trouble with all these episodes finding the "Sammy dose"... I'll keep looking...

[KaraM]

Have they tested her for Myco Plasma Pneumonia? It is proving to be a huge culprit for a lot of others. Dr. B just had us test our son and daughter for that as well as strep. It is also on the original panel of tests he asks to run. I know Dr. T tests for it, too.

If they are doing the blood draw for the strep titers, you may as well get some for that, too.

 

Kara

[browneyesmom]

Hi Kara, nope, she has never been tested for that. I asked our pediatrician to get the list of labs from Dr. B when he contacts him today, so I'll watch to see if that's there. Thanks!

Edited December 21, 2010 by browneyesmom

[Megs_Mom]

Have they tested her for Myco Plasma Pneumonia? It is proving to be a huge culprit for a lot of others. Dr. B just had us test our son and daughter for that as well as strep. It is also on the original panel of tests he asks to run. I know Dr. T tests for it, too.

If they are doing the blood draw for the strep titers, you may as well get some for that, too.

 

Kara

 

I agree with that reco. Some of the worst "rage" cases on this forum have turned out to be Myco. And the comments above about Aug XR are right on track. We found our success with Azithromyacin.

 

Also, while I am not a lyme mom, but often when I hear the worst stories, with some odd little differences from the "typical" PANDAS story, I read a year or so later, that they test positive for Lyme. Lyme is a creapy thing, in my opinion. Lyme & myco are often co-morbid. And if you misdiagnosis Lyme when it is PANDAS, the Lyme treatment often seems to help the PANDAS. But if you are diagnosed Pandas, and it is really Lyme, often pretty major issues continue to happen. My husband has a tic illness (Babesia) and it is nasty on a lot of levels. Worth the rule in/out. Some stories really stick with you over the years, and you remind me of Pixiesmommy. You might want to consider PM'ing her - she has found a ton of issues in her daughter including food alleries.

 

So sorry to hear about all this - you will find answers for her! It's so tough to be a mom and a "case worker" and a detective, but wow, you are doing an amazing job right now. Be sure to find tiny ways to be kind to yourself, you are going to need all the strength you can gather in this fight - but it will be the most worthwhile thing you have ever done.

 

I am NOT saying that your child does not have PANDAS, by the way. But all I ever care about it curing the child, and yours seems to have some unique issues, so some really good testing might be well worth every penny. And I really don't see why a child cannot have Lyme and PANDAS. Given what I know about how Lyme affects the immune system, I would think a Lyme child would be very susceptible to PANDAS.

[NancyD]

Hi Browneyesmom,

 

My DD14, who has had PANDAS since age 2 or earlier, had similar pattern with her violent rages for years. All psyche meds had paradoxical effect and made her much worse, including Atavan. What helped her the most was eliminating ALL dyes from food and medication (especially red and blue!), changing her abx to Augmentin XR 1000 mg BID, high-dose IVIg (1.5 g/kg), and high-dose anti-inflammatory (I like using quercitin, which is a natural supplement, but also use dye-free ibuprofen when it's really bad). The longest DD stayed in remission was 1 year and after her last exacerbation, we tested her for Lyme and Myco P, and sure enough, she came out positive. Now that we are treating the underlying infections (and there may be other co-infections that show up down the road), DD is doing SO MUCH better. One other thing that really helped...getting her D levels up. We discovered they were catastrophically low at 7. You'll be in great hands with either Dr. L or Dr. B. Just make sure you test for Lyme and other co-infections to rule them out. Dr. B will automatically do this.

 

Nancy

[browneyesmom]

Thanks for the input, everyone... because we know that she has an immune deficiency, I would not be surprised at all if she has co-infections. At this point, all I care about is helping her & restoring her health & life; whatever it takes! Once our PED has the list of labs, we can run all of them and see where we are and how to proceed from here...

 

I have been a proponent of no dyes in meds since she was an infant. I always get the dye-free ibuprofen and Diphenhydramine as well.

[colleenrn]

Browneyesmom-

Have you tried her on zithromax? If the strep is intracellular, Augmentin may not be able to reach it. In the worst of flareups in my kids, putting them on both zithromax and augmentin has helped. Could you add zithromax in for a few weeks along with the augmentin and see if that helps? Have you tried steroids to decrease the inflammation? Can you get an EEG on her and seee if there is any seizure activity?

I am sorry for what you are going through. Hang in there.

Colleen