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all is falling apart

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Hi all,


We are having a hard time right now, dd11 has had 5 monthly ivig's, lyme treatment, and is still struggling. My plan is to take her out of public school-she misses so much for her appointments, and sometimes is too stressed out to function, so she is waaay behind and they would not tutor her. The plan for middle-school was to give her a resource room and the slow classes, (eventhough she is of average/above average abilities in her testing). I just cant send her to that when it is the environment that causes so much anxiety. The problem is, i dont want her home either. she drives everyone crazy, is destructive when she has bad thoughts or is bored. sure the social stress etc. would be gone, so maybe it ould work. I dont have a clue anymore.


same with doctors, they all are so far (i am too sick to drive to most, so it takes 2 adults to get to them), and I cant find a decent lyme doc that accepts harvard pilgrim. cant keep putting it on the card, almost no room left. i dont know what to do.


i am afraid pandas/lyme stress is really shortening the lives of the adults in the house (me, my husband, my mom and dad).


any ideas? on anything, or just positive thoughts?



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When my Pans/lyme DS wasn't "following the script" and improving on treatments that "should have" worked, we needed to dig deeper, to something more genetic/nutritional than infections. For him, we found pyroluria - a genetic zinc/B6 deficiency. When we started treating that, we were all dumbfounded at how he improved. The progress he made in a very short time was amazing - and it stuck. No regressions. From there, the lyme and Pandas that had kicked his butt became a much lower hurdle.


For my DD, we ultimately found an MTHFR methylation issue and now a yeast issue. Treating the methylation gave her a nice period of "normal" and calm and joy. At the moment, she might be fighting some wicked yeast. We tend to think of yeast in terms of physical symptoms. But in our kids, it seems to look just like Pans and a neuropsych explosion.


So my advice is to consider a genetic barrier or yeast or some other thing that's getting in the way of progress. As for doctors, the ones who spend more time with you trying to get to the bottom of things tend to not take insurance because insurance will only pay for drive-thru type service. It might be worthwhile to read up on some of these topics and see if any strike a chord. Then see if you can find someone in-network who could pursue some ideas with you. Perhaps your pedi would consider an rx of diflucan or nystatin for yeast at the very least?

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I have felt hopeless many times, but then somehow found a way to think of non traditional solutions. I absolutely allow myself time to wallow about it, and then I limit it and make myself move on. I try to think of good times when I was pregnant and when DD was a baby. And to imagine good future times like walking her down the aisle etc.

I took out a second loan on my 401K today and a few weeks ago we took a very substantial credit card loan, I really understand.

I am not sure how it works by lymeaid4kids does give some help with medical costs for kids.

I have a colleague at work whose older child (17) has behavioral and psychiatric issues. She sucessfully sued the school district to pay for psychiatric boarding school (10k per month, wow!), while your situation is different as I understand it the school district is required to provide schooling, so I am wondering if there is another option that could be available to you. I don't know all of the details but perhaps there is some way to explore other schooling options.

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When my DD stopped going to school to be in her "resource room" the school started sending home a tutor. we had a dr note so it made it easier. it became less stressful for everyone. when they are in a flare do what ever makes life easy.

Perhaps you can post what part of the country you are in, someone may have a dr suggestion.

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Homeschooling really helps with lowering the stress for everyone in our house. When things were really bad going to school just became too hard for DD and truly made everything worse for her (and the rest of us). Lowering the stress level/pressure and limiting some of the illnesses helped us. However, homeschooling isn't for everyone. Depending on your state there may be a public/hybrid program.


Hang in there. You are not alone. We took a loan out on our house to cover medical expenses and asked family for help too. Worth it for our kids, but hard to swallow.


Will pray for your family.

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