In ER right now! :(

[browneyesmom]

Our hospital has wireless, so I'm able to connect while waiting for the doc to come see DD11, who had episode that we thought was resolving, but she suddenly got worse, grabbing the dog and yanking her paws, scratching, biting and kicking us if we came near her.

 

Refused to take her meds; called 911 for help to transport her as she has tried to get out of moving vehicle in the past & was still so combative.

 

Somewhat calming when they arrived; transported ok, a little more responsive as we got closer to hospital. By now, personality is returning.

 

Has had 2 SCIg infusions for Immunoglobulin deficiency of IgA & IgG; was told it would be 3 before she achieves steady state, so that will be this Wednesday. Her Ped reduced her Augmentin dose from 500 mg TID to 500 mg QD a few days ago... not sure why - questioned it, but this is what we are going with for now... I strongly suspect the strep is getting worse on this prophylactic dose.

 

Got as far as getting Dr.'s direct page number to consult with ER doc, who I'm confident is going to say she is not familiar with PANDAS....

 

We have been dealing with this in severe episodic form for the last 2 years; I want her well and for her to have her life back, instead of spending so much time dealing with all these episodes and can't even attend school at this point! This has got to stop!! I think we are going to have to check for a list of docs who are familiar with PANDAS, Immune deficiency and DO know how to help her... Any input while we are here waiting to be seen??? Thank you all so much!!

[lynn2]

I'm so sorry you are having to deal with this. I know that scary feeling that your child has gone away and can't be reached or helped. My main input is that I agree with your plan to find a PANDAS doctor to help you. The relief of having someone who understands what the problem is and can help you plan and understand the treatment is nothing short of awesome. It can be so draining having to be an expert in an area where you have no training or experience!! I hope things are resolving for you now and that you will be able to go home soon. My thoughts are with you!

 

Lynn

[thenmama]

xx

Edited March 26, 2013 by thenmama

[momto2pandas]

So sorry your DD, and you, are having a rough day. Sounds like you did exactly what you needed to do, though I'm sure it was hard.

 

I don't know where you live, but our pediatric immunologist in LA has been doing a very good job of managing my boys' immune deficiencies and PANDAS. We've discussed SCIg with him a few times, because we like the idea of the convenience, but he's kind of against it for kids with immune deficiencies and PANDAS because he says that with SC, you can't get the peak levels that you need to "turn off" the autoimmune response. Even with the ordinary doses of IVIG used to treat immune deficiency (typically around 0.5 g/kg), it's hard to hit these levels, so we do 1 g/kg. SCIg can sometimes be better for keeping Ig levels consistent over time to better fight infection, but he feels that the best solution to that problem is to increase the frequency of IVIG, instead of moving to SCIg, if PANDAS kids are still getting/keeping infections. So when my kids have been actively fighting infections we've done it every 3 weeks. Lately we've been able to back off to monthly. He likes to keep them on penicillin prophylaxis because it's got a relatively narrow spectrum, so that we can save the bigger guns (Augmentin) for if/when we need them, but if they actually get sick we switch temporarily to Augmentin, and we switch temporarily to clindamycin for dental issues (tooth loss/dental work).

 

I hope that things turn up for you quickly!

[forjpj]

So sorry...had to do the same thing about a month ago!! It is heartbreaking!! About a week after our visit, and a few days in a treatment center, we figured out the problem was yeast. No signs except the raging...even though the er doc said in a boy a yeast infection would be very obvious. My ds was on high-dose augmentin, and after playing around with different things, diet, etc.,it seems the augmentin in particular is much more likely to cause the yeast build-up in my ds.

 

And I agree a pandas specialist sounds like the best plan!! Good Luck and Prayers!!

[thereishope]

I know this sound like an odd request for the ER team, but try to get her some Ibuprofen. It helps with some kids. Keep us updated!

[browneyesmom]

Gosh, thanks so very much for the responses... my head is kind of spinning... let me see what I can answer...

 

We are in Virginia.

 

She is past the episode now and her personality has returned. The reason we brought her though, IS because she was refusing the Ibuprofen & Benadryl. The Ibu is 300 mg BID - TID (prn). The Benadryl is for rough flares... we have an Rx for Valium, but have never used it - she refuses all meds when she is in a severe state.

 

Oh, how I hate this! I want her life back, our life back, thinks back to normal!! I feel like I'm being a whiny baby today, but honestly, I'm exhausted and not sure how much longer my stam will hold with these constant daily flare-ups and my heart is breaking for my bright, happy child who has vanished and I KNOW she is in there! She just needs help! ... and YES, it is exhausting being the one to do all the research and all the care and all the note-taking for record keeping of how she is doing. I no longer work as a nurse due to having this full time patient at home... how those of you with 2-3 kids and more with this are able to manage this is truly stunning to me... you are truly heros!!!

 

Thank you all again... and thanks for the IVIG input... I needed that and I will look into having her switched. If anyone has any link to research that supports that, I would so appreciate it as I know I'm going to need it.

 

They are going to let her eat now, so my ex is on the way to the cafeteria to get her some food - nurse brought her a snack in the meantime - she has reactive hypoglycemia also, so I don't want her blood glucose to spike, then drop and she crashes yet again! Ugh...

[browneyesmom]

That is BID standard daily dose - up to TID prn if needed with Ibu.

[browneyesmom]

Ok, so sorry about that little rant - I'm done now.

 

I just mentioned Yeast to the RN, so she will tell her doc.

[momto2pandas]

One other thing. I'm not getting a 100% clear picture, but it sounds like your dd's episodes are sudden and cataclysmic and resolve pretty rapidly too, if she was really "coming back" by the time you got to the ER. Could she be having some sort of seizure activity? I had episodes like that when I was around 20, and it turned out that my thyroid was super duper low at that time - so low that I needed to be titrated up to a full replacement dose to get it back to the normal range. Maybe they'll check that in the ER. In the meantime, Depakote put a speedy end to the episodes. I was able to use it almost like aspirin for a headache, to deal with it just when it happened.

[tpotter]

I noticed you mentioned that her meds were decreased. Maybe she has an infection. Dr. K told us in the past to increase meds if symptoms returned. And, I agreed with possibly trying the ibuprofin that Vickie suggested.

 

Also, if you're in VA, what about Dr. L? There's also an immunologist in Charlotte that I've heard mentioned.

 

Good luck.

[wornoutmom]

I just wanted to add a cyber hug!!!! I have been in your position countless times and felt those feelings of utter exhaustion and wanted you to know my thoughts are with you!!!!!!!!!!!!!!!

[browneyesmom]

We are home now, but she went right into another episode as we got close to home. She seems to be coming out of it somewhat, but was crawling around on the floor, teasing the dog, untying hubby's shoelaces & mine, and then went into a state where she was crawling on the floor with an almost silent scream at times & other times, stopping as if she was hallucinating again and dropping into a fetal position. Finally took meds... sigh... a very long day and possibly night.

 

She is sitting calmly now, watching a movie, but still seems in this sort of toddler stage of discovering everything anew and being rather non-responsive or one word answers.

 

Yes, the strep test was positive. Anyone surprised??? I'm not. The ER doc seemed to be b/c she has no tonsils or adenoids. I tried to tell her that because of her immune deficiency, she can't clear the strep, even with antibiotics... for months now. All she knew about PANDAS is that it has something to do with strep... a med student was there who is studying to be a pediatrician and she knew a little about it... good to know they are teaching it in med school. At least she was exposed to a patient with it and got to discuss with our ped, so I hope she and the ER doc both learn more.

 

But anyway... Augmentin back up to 500 mg TID, so total of 1500 mg daily, even though I asked for 2000 mg daily. At this point, I am so totally drained. Next plan is to find a PED Immunologist and/or Neurologist who specializes in PANDAS... not one who has treated a case or two - I want one to end this nightmare and restore my dau's life!

 

Beth Maloney sent us a list of docs recently - has been so awful here lately, that I have not had a chance to review the list - I'll try to do so now and see if I can find anyone... thank you again!!

[browneyesmom]

... and thank you for the cyber hug... I'll take all of those right now!

[RNmom]

Hi browneyesmom,

I'm in Virginia too. I think you are a really smart mom to handle the ER situation so well. I hope your daughter is stable now and that the family is "recovering" too.

 

We take our ds14 (who came down with severe PANDAS last January) to Dr. L in Bethesda, Maryland. She is a great doctor for PANDAS. Also wanted to mention that it would be wise to get the Igenex test for Lyme. Dr. L will order that. Or, if you can find a LLMD before you see Dr. L, you could have Igenex results back by the time you saw Dr. L (it takes w while to get an appointment with her).

 

My DS14 ended up diagnosed with PANDAS and Lyme. He had every treatment Dr. L could give (including plasmapheresis) and his PANDAS got 65% better. But, the Lyme prevented a full recovery. Dr. L is on Beth Maloney's list. I wish your dd11 a full recovery very soon.