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we are losing the battle


wornoutmom
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WornOutMom ~ I am SO sorry, I'm horrible remembering which kid goes with which Mom. I will certainly send a message Carter's way once I get the chance. We chatted a bit about how his freshman year was going but he didn't let on that it was going so badly. :/ I'll do my best to help!

 

Emerson, it is the little things like this that go a very long way in the road to overcoming an exacerbation, thank you very much even for thinking about doing this! Well Mr. C made it to Algebra this morning without having a panic attack!!!! He did get anxious but being in the moment for a hour and a half was a huge step forward, every day is a whole new adventure however, all of my fingers, toes, arms and legs are crossed hoping for slow steady recovery.

 

I described this situation to a co-worker this morning in that every time he falls flat from a PANDAS bear attack it is kind of like rehabilitating him from a brain injury after an accident, his entire thought process is stunted and needs gradual coaching and conditioning to get it back to where it was before.

 

I agree with the many comments regarding finding and ridding him of the current infection. He had blood work done two weeks ago and the Myco P level was still elevated.

 

It's always refreshing to see Dads on here. :D

 

I sent your son a message a little earlier today, just assuring him that while although I could never say that I knew how he felt because I wasn't him, I had been through the second worst exacerbation of my life in my first semester of freshman year. If stress kicks open the BBB just like an active infection, freshman year must just break it down. Not to mention if you ALSO have an infection!! I got strep more than once that semester & swineflu as well, & you say C might have come down with something.. As if ninth grade isn't already full of enough anxiety & nervousness.. Adding P.A.N.D.A.S. & possible infection on top of that certainly does NOT help any. The only thing that I can recommend for now is just to try to get him to relax, as impossible as that sounds. If you want me to send you the message that I sent him I will. He hasn't replied yet.

 

Thanks again, we will let him know there is a message for him on FB later today.

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I think I might try to home school for a while, maybe try to hire a tutor. He wants to try a few classes a day, but I don't see how that is going to be possible. Have you thought about another IVIG? I think we are going to try at least 2 more.

Just started an on-line public school with my ds12 and it seems to work great so far. Just dealing with his school and teachers was so stressful that this seems to be working better until he is well again. It is K12.com and is offered in some states and is free (they do have pay courses as well). You can go part time or full time and start/stop when you want. It is my understanding that for the high school about 75% of the work is on-line (compared to my son's which is 25%). There is a teacher for your geographical area that oversees progress, answers questions etc.

 

Best wishes for some answers in the near future.

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We've had a very similar recent course except we've not done ivig. Healing summer after a horrific winter. 3 weeks back to school after seeing pretty impressive results with Truehope protocol (which I still believe has significant merit) then a huge crash out of nowhere 4 wks ago. Hasn't been back to school since. In the last 10 months we've tried everything but ivig (homeopathy, TCM, diets...everything). I started reexamining the pieces of the DAN! protocol he was on in middle school (that turned things around steadily) and found all elements we used supported methylation. Have you considered that this kid may be a low methylator with some heavy metal issues complicating things further. My ds16 isn't autistic but boy does he respond quickly to supps to support methylation which, coincidentally, are supps also used to chelate heavy metals. Not that you don't have enough to think about, but I'll just throw it out there to consider. Mine's not back in school yet but much better than 4 wks ago and I saw the change, literally, 3 days after starting him on the supps. Otherwise, my prayers are with you, I know exactly how it feels to see hard won gains gone in a day and a high school age kid lose hope in his life.

 

Gat's mom

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  • 2 weeks later...

Hi. I was wondering how you and your family had been. Where did you end up going for IVIG? Did he do better for awhile? Sorry things have gotten worse. Please keep me posted. I hope things improve for you all soon.

 

Michele

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thanks to all for the words of support. It really does help to cry with someone. He has turned away from me and is leaning on his dad, which is a first, but good - takes some of the pressure off of me and probably makes dad feel less helpless. He wouldn't go into the school with me to talk with his counselor, but was willing to go with dad. Dad is gonna see if he can get him to his therapist later today too. The school wants him to go back tomorrow but he is sick and I think its setting him up for failure. But the longer he's out the worse going back gets.. catch 22

 

Joan - I am so sorry to hear about your son. I have been wondering if the program you had him in this summer had helped. Have you tried getting him to write? It seems like a different function of the brain is being used and you could see the relief on ds after he finally got it all out. Can I ask - what did the school say about you taking him out? It feels like there's so much at stake now that it is high school.. I agree that the exposure is just too high. That's why we're trying for the half day. He said that was a 5 on his anxiety scale, and might be able to manage that.

 

Iowa Dawn - numb...I get that feeling entirely...scared and feeling like you can't live this way much longer - i get that too. we're going for the Igenex test as soon as he is physically better. I am very interested to hear what your lyme doc has to say. Can you keep me posted?

 

On an interesting note, I had a conversation this morning with his former therapist, who is an amazing OCD expert and running a hospital clinic in IL. He definitely thought he could help, but knows this has been going on for ds 8 years+ despite all our intervention, and started to talk about the new brain surgeries they have developed for intractable OCD. In one of them they actually go in and burn a small hole through the basil ganglia!! Scared the crap out of me, but he said he was just telling me this so I wouldn't lose hope that nothing else was left to try...

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