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white-knuckled school jitters


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Hello, all.

My daughter starts 3rd grade tomorrow. To fill everyone in (I haven't posted in a bit) she had strep, (tonsils out) mycoplasma (last winter - still high antibodies) and tested for Lyme in February. Biaxin worked wonders for her, but, as most of you know, it is not a long term solution. However, this summer, without much structure or stress, and with NO antibiotics or other meds, she did GREAT - at about 85-90% - some days, there were rage issues, but, overall, her behavior was really noticably good.

Of course, with the approach of school, her rages increased over the past few weeks, and some of her tactile issues returned.

Today, though, today, I am brought back into the realities of this whole thing. She was not even paying attention to the clothes I picked out for her while we were shopping - her ADHD like symptoms returned - she kept saying "what the ######!" in the store, became increasingly agitated the longer we were there - you know how it goes.

Now, tonite, as I tried to pick out clothes with her, nothing fits, or she hates the tags, or the seams in the jumper are picky, and she is inconsolable. Her father is trying now to put her to bed. I honestly dread tomorrow. I really do. I know once she is there and the stress dissipates, she will be great there (how this is possible I still don't know) but then I'll be the target once she is home.

So the cycle starts again.

I am left to wonder - how much does stress affect these kids? Is there a surge of negative chemical warfare happening when stress comes into play? How could a child who did so well for a few months be roped right back into this behavior? Her Lyme test, after being on Biaxin a few months, came back negative - does this mean it is or am I missing something? I NEVER seem to get anywhere with the docs - I HATE that there isn't a more specific definitive way to treat this thing.

I'm still at odds with my husband over the use of Tenex.

Right now, I honestly don't know what to do next. She's good alot of the time, with the surge of rages or hyperactivity happening sporadically - does that warrant Tenex? Have any of you had any luck with it? Does it even make sense to consider?

 

Wishing you all the best with the start of the school year, and hoping and praying for all our kids!!

Noelle

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Hi Noelle

 

I don't know about Tenex, so I can't respond to that, but I certainly share your belief that stress is a major problem with our PANDAS kids, and that the very highest stress (for both us and them) is school. Someone said on this board that just reducing stress in the home can calm down some of these symptoms (as opposed, I suppose, to what I am inclined to do which is to load the poor kid up with advice and expectations and concerns....) I am really planning to do that this year. The problem is that the homework needs to be done (and increasingly, grades are important as kids get into the jr. high and high school year), and that is really hard when you are struggling with the combination of rage, ADHD, and just plain adolescent snootiness.

 

I hope once your daughter gets through the first day things will have calmed down!

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Stress is a huge problem, as all the PANDAS experts will tell you. And school is probably one of the worst. If homework, and school work causes a lot of stress for her, I would go to the school, and ask them to either evaluate for an IEP or ask them for a 504 plan. This will allow her to not do some of the homework or school work, get out of classes if necessary, not worry if she has to miss school because of extended illness, etc. It is important to decrease some of that work, because as bad as it is on us at home, it's even worse for our poor kids.

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Well it sounds like you are talking about my dd 8, starting 3rd grade too. I absolutely KNOW that stress is very hard on them. The less my dd is rushed, the better she is. We have stopped all extra curricular activities and I have to say, just that, has decreased my stress, so she is positively affected. I spend so much time wanting to give her all these opportunities I didn't have, swimming, dance, gymnastics... That I wasn't focusing on what is really important, our time together. I truly believe that God has plan for my dd, and she will be well one day. My lesson in all of this suffering is to slow down and enjoy our time together, not rushing around, but doing things on our time. I understand the school and homework thing, and I am afraid too. My plan of attack is to be present as much as possible and help to make her homework fun (will be harder than it sounds, and I work full time too) but in the end, the blueprint for our precious little ones is already written, we need just love and support to make them the best they can be, if they aren't scholars, so be it, they may just suprise us without a perfect education. God knows they will have strength and courage beyond their years! I wish you all the best. God bless.

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Hi, I don't know about Tenex, but if your d has Pandas most on the forum have had good results with the Pandas treatments, (increasing as necessary.)

 

Have you tried them? (Buster's flow chart?)

Long term antibiotics and steroid bursts have really helped our daughters.

The recent meeting at NIH there was much discussion on the good effects that doctors have seen with such treatments--on Pandas related OCD/tics.

 

Stress, exposure to illness, yes these all effect Pandas kids, most would agree certainly...

It took me a while to get to the point that I was willing to try Pandas "treatments" per se, but the pain and struggles necessitate it for our kids, so they have a childhood. I hope you find relief in treatments soon--I know we have had to try one thing and then another, before we saw improvements.

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Thanks to everyone.

 

My best wishes to you as well with school.

 

My daughter is actually so well behaved in school, it's almost unbelievable. Yesterday, after school, we went in the pool along with her little sister. She did everything she possibly could to annoy me, until I got really angry with her. I swear, she WANTS to get me upset. It's such a bizarre illness.

 

My husband (who has a medical background in his education) is now in complete discord with me about PANDAS, saying there is no way a bacteria is causing this. He believes it's Tourette's or ADHD. WE HAVE treated her with many antibiotics, and with success, most especially Biaxin. However, most definitely, there are high risks to long term antibiotic use.

Without a doubt, my daughter meets the criteria for PANDAS, without a doubt. But I'm exhausted from trying to prove it to the person closest to me! He thinks I'm ignoring the problem. To reiterate something I talked about early on, my niece (same symptoms) lived here while her tonsils were severely infected, and my daughter's symptoms began about 6 months into my niece staying here. Both have since had their tonsils out, both have had a bout with mycoplasm with symptom flare ups, and both are more prone than the average person to illness. My daughter's immune system, after bloodwork, seems a bit more compromised than my niece's, and she also did test + for Lyme, and my niece did not.

 

I find the symptom similarities too noticeable to ignore - we did take both to Dr. T for an evaluation. I loved him, but he has gone missing on us for months now. I need a solid dependable doctor to take hold of this situation, even if it means a different approach to treatment.

I HATE that more doctors aren't educated about this illness. It's obvious from the many cases out there that it is, in fact, VERY real and very active in so many children.

 

Thanks for the words of encouragement.

Noelle

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If your daughter tested positive for lyme, the Biaxin alone would not be enough to fully eradicate the lyme. I am not surprised she has slid back some after stopping antibiotics since she still has lyme and possibly other stuff. I would see an ILADS doctor to help treat all microbes completely.

 

Hello, all.

My daughter starts 3rd grade tomorrow. To fill everyone in (I haven't posted in a bit) she had strep, (tonsils out) mycoplasma (last winter - still high antibodies) and tested for Lyme in February. Biaxin worked wonders for her, but, as most of you know, it is not a long term solution. However, this summer, without much structure or stress, and with NO antibiotics or other meds, she did GREAT - at about 85-90% - some days, there were rage issues, but, overall, her behavior was really noticably good.

Of course, with the approach of school, her rages increased over the past few weeks, and some of her tactile issues returned.

Today, though, today, I am brought back into the realities of this whole thing. She was not even paying attention to the clothes I picked out for her while we were shopping - her ADHD like symptoms returned - she kept saying "what the ######!" in the store, became increasingly agitated the longer we were there - you know how it goes.

Now, tonite, as I tried to pick out clothes with her, nothing fits, or she hates the tags, or the seams in the jumper are picky, and she is inconsolable. Her father is trying now to put her to bed. I honestly dread tomorrow. I really do. I know once she is there and the stress dissipates, she will be great there (how this is possible I still don't know) but then I'll be the target once she is home.

So the cycle starts again.

I am left to wonder - how much does stress affect these kids? Is there a surge of negative chemical warfare happening when stress comes into play? How could a child who did so well for a few months be roped right back into this behavior? Her Lyme test, after being on Biaxin a few months, came back negative - does this mean it is or am I missing something? I NEVER seem to get anywhere with the docs - I HATE that there isn't a more specific definitive way to treat this thing.

I'm still at odds with my husband over the use of Tenex.

Right now, I honestly don't know what to do next. She's good alot of the time, with the surge of rages or hyperactivity happening sporadically - does that warrant Tenex? Have any of you had any luck with it? Does it even make sense to consider?

 

Wishing you all the best with the start of the school year, and hoping and praying for all our kids!!

Noelle

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