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Brain Damage?


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the crisis is not ending because i am trying to stay the course and give each treatment time, since some people keep telling me it could be herxing. i am seeing two of the best doctors in nj. we had a horrid experience on steroids. all of our doctors agree she needs to be on the lamictal for abnormal eeg...we were on our way to ny presbyterian. she was going to be admitted and then we stumbled about the bartonella diagnosis. i don't want to give up on this treatment after just trying 3 months of bactrim and minocycine. her behaviors are not learned and all of the bad behaviors go away when treatment works for short periods of time. she is the most well behaved kid you will ever want to meet. she is wonderful, but then meds. stop working and she falls back into her confused agitated world. tried brain stimulation as well as dozens of other treatments, doctors, supplements, psych drugs, alternative doctors, western doctors, voodoo doctors, major hospitals, mayo clinic and the list goes on. nothing has worked thus far. so i guess i am just kind of venting in a place where i know all of you understand. i really have no place else to sound completely crazy and say whatever is on my mind. it's kind of nice, since i can't get out of the house for therapy, because of her anxiety of me leaving. so from time to time, i am going to come back on the board and sound like a crazy, depressed, fed up, and scared mom!!! .... thank god after i do that... i always get the energy from some of the nicest people, to go a few steps forward and keep fighting for this very very sick child.

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Wilma,

I don't remember if you have already said but how old is your daughter? I just want to remind you that Sammy Maloney was I think 11 when diagnosed with PANDAS. He seems to be doing really great now. I don't think there is an easy fix to this illness and we can all make suggetions and talk about what has helped our children but I resist the idea that she is brain damaged and that these behaviors are permanent. None of us can say for sure of course, but I would not give up. You've seen glimpses of improvement. Hold on to that and keep researching. That is my only advice. For us there were multiple infections at play and it was definately a case of peeling away at the layers of the onion. We had to address bacteria and viral infections. Detox, herbal remedies, and other natural support were important too. I wish for all of us that it were easy but its not. At the very least you know your daughter has bartonella. Maybe there are other co-infections, detox issues etc. that need to be addressed. Just my thoughts, hope it helps.

Edited by momofgirls
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Wilma, you are a true mother warrior, and I support you across the computer lines.

I am glad you have a place to 'get it out.'

I have wondered about a high dose IVIG helping your daughter, too-

might see what your treating Dr. says?

Stay strong, PV's------

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Hi Wilma,

 

Hang in there! If the current treatment isn't working, or is causing behavior that isn't tolerable, you need to discuss with your doctors and have them try something else. I would also ask about detox if they haven't given you a protocol. If they don't provide this, you can go to a DAN doctor or naturopath for this. You still have lots of options and I strongly believe you will get there!

 

My son didn't recognize my husband and me at certain times. He believed a robber was in our house 24 hours a day. He thought there were bombs strapped to his body or hidden in his dresser drawer. He hit me. He came after me with a fireplace tool. He got out knives and threatened to kill himself. He ran into the street. He dropped out of AYSO soccer and other sports due to anxiety. Normally a very social kid, he was losing friends, becoming a loner. NOW, after 14 months of Lyme/Bartonella treatment, he is happy, social, back in sports and trying out for club soccer (more difficult level). He is not 100% well, no, but vast improvement shouldn't be minimized. He is a different kid, and we are a different family, than 14 months ago.

 

There were times when I worried he had brain damage, that he would never get better. But that wasn't the case and I think it hasn't been the case for most, if not all, of these kids with PANDAS/Lyme. Try not to think about that - just stay positive.

 

Give it a few more months, and if your LLMD's aren't getting her well, find one who can.

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I wonder if Ivig would settle down some of the autoimmune response. For DS, it worked wonderfully for about six weeks, but I know other people have been able to get ivig on an ongoing basis. I am just spitballing here, so don't take this as the Gospel according to Cobbie.

 

 

I was also going to suggest IVIG. I know you have seen Dr. B. Both my DS's are also being treated for Lyme, and one clearly has bartonella, probable babesia, definite erlichiosis. We are definitely staying the course, but honestly, we also have been doing ongoing IVIG, and it has certainly helped substantially. DS18 had massive improvement that has mostly lasted (although we do repeat the IVIG on a regular basis, as long as insurance will allow it. His social skills jumped 7 years overnight! DS15 sounds an awful lot like your DD, but his started at 8 years old. He has abnormal eeg (takes lamictal), plus all the lyme, bart, etc. He gets high titers, and when in crisis, he can't stand (crashes to the floor), loses the ability to speak for short periods, anxiety through the roof, etc, etc. But, IVIG and abx cocktails for lyme and co- have made all the difference. There's no question in my mind that treating the immune system while treating for lyme has made the difference between functional and non-functional (DS15 is stable, but still having a lot of trouble every 3 weeks, and we are working on trying to figure out why, and what to do about it, but he's stable, and not in crisis.)

 

Now, that being said, both my boys do get flares, and they aren't pretty. But, they are typically tolerable. Really think about doing IVIG or PEX if you can get it (we've done both.)

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  • 10 months later...

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