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Update... finally some better news!

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I haven't posted here in a long time. Most of the last several months, I have been in the fight of my life to save my daughter, who just turned 12 years old, end of May. Many of you who have been here a while will remember that she was diagnosed about 2.5 years ago, remitted for several months after T/A, then crashed again when she caught strep again in Spring 2010. By Christmas 2010, I had to call 911 five times in 2 weeks.


Had to call? Yes, had to call. Why?


She was having daily rage episodes lasting up to about 3 hours (attacking me (hitting, kicking, biting, spitting, scratching, pulling hair... you name it, she did it... and yes, sometimes with that guttural "I'm going to kill you." voice) the entire time and strong as an ox - I honestly thought this petite 70 pound girl might actually overpower me, the adult - paramedics who arrived on the scene were shocked at her strength and it took 3 of them to restrain her, to give an idea). Frightening thrashing followed the rages, then she would go limp for a while before coming out of it... sort of - she often had hallucinations after and sometimes went into another episode. In other episodes, she did not seem to hear us as she repeated one word over and over again, sometimes grabbing at wires or staring out the window or crawling under furniture, seemingly unaware of our presence. Another time, after a rage episode where she did not seem to hear me, she laid down on the floor and silently wept.


So many painful images are burned in my memory... thankfully, not in hers. She does not remember most episodes. I see that as a blessing. It was very scary to see what had been a previously healthy, intelligent, happy and loving child in this condition and it has been the fight of my life to save her. Around Christmas, I honestly did not know if we'd get her back. I would have to describe her condition at that time as psychotic much of the time and I did start to wonder if this disease had claimed my beautiful, precious child.


Would it be bragging to share that as sick as she was, I didn't think there was any way she would complete the school year; however, she not only finished (core classes only - we had to exempt her from the electives), she made straight A's the final quarter, completing the year with a 3.7 GPA... I'm still trying to get my head around that. She pushed through so many times when she wanted so much to go back to bed, but worked hard to complete her work and she did it.


In many ways, I think I'm just starting to feel the brunt of it and sometimes when she is not clinging to me now as she did constantly for so many months, falling apart in tears now that she is finally improving; yet, I am bracing for another school year and dreading more strep. I'm sure many of you can relate to that... getting some things in order here before that strikes again.


I wish I could say she is 100% now. I can't. She is probably about 85% now though and for that, I am deeply thankful and feel hopeful again as her brain takes it's time to heal. I haven't seen one of those rages or psychotic episodes in several weeks. Sensory issues remain, as do physical stamina issues, contamination fears and a few others. We'll be attending the IOCDF Conference that I hope will give her some tools for those things and she remains in counseling and under the care of doctors. God has been so good to us on numerous levels through this and I believe He will use this for good, in some way.


I want to encourage others who are just coming into this battle and are still in so much shock, especially when you read about those of us who have been off the cliff, back again and off the cliff some more with new strep infections. I remember those early days and endless nights, days when I was so certain antibiotics would be all my child would ever need, that we would NEVER get to the point of needing IVIG (she's had 6 high dose infusions at this point), that we never wind up in the hospital for this (haha... so naive, I was - 5 times to ER and a hospital admission of nearly a week at Christmas), that we would never have to pull her out of school (she was on Home-bound Ed from mid-December through the end of the year).


I remember... my denial. I don't write that to discourage you... but to encourage you to be aggressive in seeking treatment early whenever possible. For those who are fighting insurance, doubting doctors and other monsters, hold on. We've been there.


There is hope. Your child is still in there and your efforts to save them are not in vain, even if you don't see it yet. Don't ever forget that.

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All I can say is that I am so happy for you. If the symptoms come back, keep searching for answers. We did 6 HD IVIGs on one of my kids and 5 on the other, plus PEX 2 years ago on both. We doubted it was anything more than strep, ,because it was so classic, but to date we have found (in addition to strep), mycoP, Lyme, Bartonella, Babesia, Erlichiosis, and now mold (yes the black horrible, terrible kind.)


One thing I have found is that there are no easy answers, and we have to keep looking and looking if we are going to help our children in the end. I am now convinced that no 2 are exactly alike, but when it comes to the immune system...anything goes.


I am so happy for you, because I remember how desperate you were.


Thanks for updating us, Denise.

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SO HAPPY for your family....A WIN for the team!! That's how I feel when I read about one of "our" children doing well!!!


I remember your dark days...they were sad and hard to read! When I read posts of despair with any of these sweet children, it brings back memories of our experience and I actually feel my heart beat faster and begin to have anxiety. It is so great to hear! I think it is strange that we both stepped away from the forum and then back again at the same time. You must have taken a break from here, as I did, after we met at Dr. B's. Hunter still asks about your DD, and how she is doing. (To tell you the truth, I think he was actually flirting with her a bit when they were at the pool) Normal behavior---yea! Please keep me posted and I will let you know how our first IVIG goes next week. Also, thank you again for hanging out with the other 2 knuckle heads.... ;)




Edited by 3boysmom
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So glad to hear you have improvement, I remember your frantic posts. We are also seeing great progress... 100% most of the time. We discovered it was lyme. I think I remember you being along the east coast. I don't want to seem pushy, but I am also a RN, and what I have learned about Lyme, and the results I have seen in my daughter in last 6 mos since getting a pos lyme test make me passionate about promoting awareness about lyme. I was sooooo skeptical and still have a hard time believing it at times, but like I said, the improvement is dramatic. I pretty much have my girl back, and actually she is even better than before! I see now I haven't truly had her since she was about 3 yrs old, and now she is 9. We treated for PANDAS for almost a year, even doing 4 hd ivig. We saw some serious regression with a little improvement until the lyme dx. I have been brought to tears thanking Jesus for where we are today. This time last year I was also being attacked daily, in the ER, dd was suicidal and homicidal, possesion like rages daily. I was constantly covered in scratches over my face, arms and chest- even have a few scars to remind me. She now showers me with love, kisses, kindness. She has a very mild flare every 4-6 weeks which progressively becomes milder. If you haven't already, please research lyme and read cure unknown. I wish you continue on your road to healing.

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Oh my... where to begin? Thank you all for your posts and comments. It was hard for me to write that post and brings me to tears just to open this thread again, remember how very ill she was and how far she has come against huge challenges. It was important to write it though, as I remember I would have given almost anything for some hope a few months ago! Without the lifeline of other parents, I don't know where we'd be right now. No one else really 'gets it'.


tpotter & Priscilla... thanks so much for the input. I know these diseases can have an eerily similar presentation to PANDAS and agree it is so important to check for it. She has been tested several times now for Lyme & related diseases. She only once showed anything at all to Ehrlichiosis... it showed exposure; but that one was after her IVIG infusions and her docs believe that's what caused that bump. We are clearly seeing her improve and you know how you have a sense in your "Mommy gut"... I really don't think she has Lyme stuff... the PANDAS (and immune deficiency... which keeps me ever vigilant to any new issues) has been a severe & complex case for her though.


After such a fight, it's honestly a little bit odd to see her continuing to improve... it reminds me of working your tail off planning some huge event, working day and night to the point of extreme exhaustion... then, the event is over and you almost don't know what to do with yourself. Your old life has been forever changed and you're not sure where to begin. Maybe that's just me and some PTSD, but it's an odd feeling. Anyway, I'm throwing my energy into trying to reclaim the house I've let go all this time and raising awareness & research support, which I believe is SO important!!!


Linda... puh-leeze - I love kids and enjoyed all three of 'em! hehe... I suspect that normal behavior might have been mutual. ;)

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I am thrilled to hear your daughter is doing so well. Congratulations on the long hard fought battle and getting her to this point. I remember your posts all too well!!!!!


Not to push the Lyme thing either... but if she continues at the 85% recovery and never quite makes it back to 100% I would consider reinvestigating Lyme. It is quite possible with the IV Rocephin and all the hdIVIGs you have sent to the Lyme et all off into hiding and suppressed immune response. There any many that this has happened and not until they've been treated aggressively for Lyme with combo'd antibiotics do those blood results convert back over to highly positive. For example: a little boy originally from CT had positive Lyme results over 3 years ago. He was treated for PANDAS unsuccessfully. Last year, he had negative Lyme antibody results but positive via provocation/Dot Blot testing... Now 8 months into Lyme treatment with combo'd antibiotics he is positive for Lyme via antibody testing again plus several co-infections. For them it was a huge piece of the puzzle in their hope for recovery.


Wishing you all the best on your way to 100% for DD. As such a strong advocate for PANDAS, I hope you continue to advocate for Lyme testing as well..... It is a huge problem for many of us and with proper testing on the front end it could save a lot of time and money for those individuals truly suffering from Lyme/co-infections.



Edited by SF Mom
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