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Desperate for help in NY!


DebCap
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Hello, I am a new member and my daughter was diagnosed 2 years ago with Pandas confirmed by elevated strep titers. Before diagnosis she previously had a severe case of impetigo head to toe and then sudden overnight changes of SEVERE anxiety, OCD, fear of choking and wouldn't eat, incontinence, social and academic changes and separation anxiety by my side 24/7. She had 50 per cent improvement after 2 months of antibiotics and was given zoloft 50 mg. She recently got her first period (12 years old now) and along with school starting again, her symptoms were so severe she was acting psychotic with screaming, panic, anger, fear of hurting herself, hitting, cursing (never does) running out of the house and worse, picking up a knife and staring at it. Her doctor admitted her to a pscyh hospital which made it worse because of separation anxiety. After they ruled out bipolar and mood disorder I took her out (they didnt know much about Pandas except what I told them. ) She is home now and the only think that keeps her somewhat able to function is the rx they gave for Klonopin 1mg 3x a day and zoloft was increased to 100 mg but all this doesnt even help much except that she is not screaming. I called a Dr T who is in NJ and he had her do blood work and when it comes in I will go to NJ for the appt. She has not even home tutored yet because of anxiety. ONLY thing that calms her and that she will go in the car for is to visit horse farms because they have a very calming effect on her. Lastly, the severity of the panic gets so bad that she actually seems to almost pass out with her eyes going back and falling flat on her back. We are awaiting b/w results. Also, all she wants ( even as a baby) is to only eat sweets and white flour carbs which I keep out of the house. I would appreciate any help and suggestions. Could I get any help through my Bc/bs for theraputic horse therapy which truly helps and why does such strong medication as Klonopin not work unless I double what they tell me to give her just to get her to function! Thank u all.

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I would highly recommend dr o in Connecticut who is about 60 minutes from NYC. She is an amazing pediatric integrative md who specializes in pandas and similar disorders and uses a combo of medical and supplemental treatment. From what others have posted dr t is amazing but very hard to reach/unavailable after the first visit and does not have Lyme and other related infection experience especially the cravings you describe, that's right up dr o's alley. She has really helped my kids and a number of others on this board. She went to a very good medical school :) and does both conventional and alternatives medicine. I will pm you her info if I can get my mall and login working properly

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Hi DebCap,

I feel your pain, and I can tell you that many of us have been there. You will find a lot of great support and also knowledgeable folks on this forum. Indeed, these folks saved my daughter's life. I spent hours a day here learning, grieving, picking myself back up, and moving on. Your daughter can and will get better, even though it may seem hard to believe now.

Stay strong, hugs your way!

I also live in NY, I sent you a PM.

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If your blood work comes back without any obvious triggers, you may want to read up on a topic called methylation. It's the process the body uses to turn raw ingredients of vitamins/minerals into bio-chemicals that fuel energy and makes neurotransmitters. You say she just started her period, which could mean her body has new needs for certain "raw ingredients" and her growing body is having trouble making enough calming neurotransmitters. I'm not explaining it well, but I'm very familiar with the sudden madness you're describing. My DD was unbelievably bi-polarish but has done a complete 180 by treating her methylation issues.

 

See if this gives you some things to consider http://www.easytolovebut.com/?p=2782

 

I second HopesNY's suggestion of Dr O. She understands methylation and how to help kids with a variety of symptoms.

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You may not be dealing with PANDAS (caused by strep) but a PANS reaction, caused by other things including lyme, bartonella, mycoplasma, babesia, viruses etc.. Our daughter's reactions were caused by bartonella, which can, in and of itself, produce major psychological issues. Search the forum for information on:

 

1) methylation and MTHFR genetic deletions - many of our children have these deletions which slow the body's ability to get rid of environmental and bacterial toxins. These can usually be addressed with methylated versions of B vitamins and omission of offending food from the diet, allowing the methylation pathways to run more efficiently.

 

2) herxheimer responses - a reaction caused by the die-off of gram negative bacteria (lyme, bartonella, but not strep) and the resulting release of endotoxins. This can result from abx treatment or an increased immune response and resulting bacterial die-off. If the body's methylation pathways are blocked by MTHFR deletions the toxins from these reactions are excreted more slowly than usual.

 

3) inflammation - many children find relief with the use of anti-inflammatories including ibuprophen and curcumin and Japanese knotweed. The raging you see is caused by brain inflammation, produced either by autoimmune reaction or direct bacterial infection and die-off.

 

4) detoxing - when toxins are released you can help the body remove them by increasing BMs using psyllium husk or chia seeds; try to bind the toxins in the gut so they remain there for removal (and not resorbed back through the intestinal lining); help the function of methylation pathways by drinking lemon (citric acid) water and taking magnesium supplements.

 

You have come to a good place - this forum has saved my daughter's life as well. Most of our children have improved, many significantly, when all of these issues are addressed.

Edited by rowingmom
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