calling all PANS/LYMES children's caretakers.

[HopeinHIM]

Our DS 10 has been suffering for several months now with flare after flare. I have received so much helpful responses along the way but this one is different. Caretakers (mostly moms I assume) know what I am talking about when I speak of the odd mental/neurological behaviors that follow the Lyme's/Bart /Babs children. There r weeks that just getting dressed and teeth brushed with supplements and meds down has been considered a success. He is good for a few weeks and going to his tutor and then weeks where he can hardly sit for a 5 minute lesson. There are times he plays hours of video games with perfect clarity and then in the evenings he falls apart before bedtime with "i am sad" and baby talk. Please! My partner has such a difficult time not seeing that this is typical behavior. He believes that the child is manipulating because he plays with his friends for a while but stays in bed complaining from pain or whatever really. Our DS can be ok for a few hours and then very fragile the next minute. I spend so much time defending our sick child that I feel it drain's me more than the Illness itself. Our child is bright and other than being a strong willed boy he was always a good boy. My husband is a mess because many of the household rules are not working because our son is not well and not always able to follow them. (cleaning up after himself and not going to bed before midnight)My husband feels that if he can play complex video games then he should be able to go to school at least half days. Heck I am happy if he brushes his teeth. He doesn't get it I!!!!!t. He also doesn't want him in our room every night because he want his bed back but our DS is frightened to sleep alone. He is a loving father but this is such out of the ordinary behavior so it's a huge stretch for him. I try and explain that this is temporary and the child (these children need love and great compassion not critism) Share please if you see similar dynamics as well in your home or set me straight and tell me I am enabling!!! Does this disease wreak havoc on families or what?? My husband and I are constantly at odds . Thank you all and God bless. I hope to share some of your stories with my husband!!

[BeeRae22]

I think this is a very common scenario with families of Pandas & Pans children.

 

Our family was nearly torn apart by pans. Our dd's symptoms began last October and she was in severe distress for about 8 months. One of the hardest things to distinguish is behaviors vs. symptoms, at least until you've lived with it long enough to know- if that makes sense! My daughter "held it together" all day at school, and when playing with friends (although she did have a few episodes with close friends at home a few times when things were really bad) but as soon as she got home from school it was a complete nightmare. When you have that amount of anxiety, your behaviors are completely reliant on how you're feeling at that moment-- so it often appears as if the child is only okay when they're "getting their way". My husband would constantly say that "this was behavioral" and that "she could control it", which was very frustrating.

If you can get your husband to read as much as he can about this (%]{%<|{^>-ing!) disease, I would encourage that most of all.... If you can understand how it works, than you can "see" what's happening more clearly.

Our daughter had a great few months, virtually no behaviors and no raging at all, and then about 3 weeks ago she came down sick with a cough and congestion. Along with the cough immediately came oppositional behaviors and full blown raging. As soon as her illness cleared up, so did her behaviors. No doubt about it, her brain was under attack. This episode showed even my (stubborn) husband very clearly how this works.

Try your best to explain to your husband that your son is incapable of controlling his fears. I'm sorry to say that a lot of times men just don't get it. I wish my husband had been more willing to research the disease like I have, than maybe he would understand. I wish I had some advise to offer, but maybe it helps just knowing that your situation sounds really familiar. I can imagine that many families are torn apart by this disease.... The stress is overwhelming sometimes. But the good news is, it will get better. Maybe not today, or tomorrow, but your son will get there eventually.

Wishing you and your family the best.

[ktdommer]

You are in a tough spot and one. I relate to very well. I too spent years explaining my son's behavior and illness. You two will have to set some rules sort of speak. For us, it isn't over despite my son being kicked out of the house. Now we battle over rent, lost phones, smoking, stolen bikes, meds and treatment and finances. We sort of stopped speaking too much about it. Easier. I knew he didn't get it and that in his brain he couldn't get it. He did not see what I saw nor did he hear everything our son would say. I've stopped expecting anyone to get it.

Chronic illness is hard on any family, but a misunderstood, chronic disease is worse.

For us we had to calm the reacting to the behaviors part. We had to, for sake of sanity agree that we wouldn't deal with the illness the same way and accept it and respect it.

I've often wondered if it would have been easier on my own. Things are getting better I think. Hang in there!

K

[awilliams74]

One of my biggest "guilts" with this disease is becoming frustrated with DS before we knew what we were dealing with, before we knew of PANDAS. We could not understand why he could be perfectly fine and happy to play video games for hours, but could not get into the car, could not flush a toilet, could let this new OCD completely control him so quickly. We tried offering rewards, taking away things he enjoyed, talking through episodes, all of course to no avail. Now we understand so much more. I will always feel bad that in the beginning we thought he had some control over this and he does not. Hang in there and know you are doing what is best for your child above all else.

[nicklemama]

Very common. Our son started sleeping in our bed and it lasted two years. His behaviors were normal one minute and off the wall the next. It's a very hard disorder to understand, let alone cope with. My husband finally got on the band wagon and when he did, things were much better. Our son followed the rules when he could and did his daily chores when he could and when he couldn't they all went out the window for the sake of everyone's sanity. You'll get there. I've been at this five years. It gets better. It really does. Our lives have returned to normal and our son just got back from 5th grade camp where he spent the first three nights ever away from family. He had a wonderful time at an outdoor education center with every fifth grader in his school sleeping in a dorm full of bunk beds and being responsible for all his own stuff. Unthinkable just a year or two ago.

[SSS]

We have also been at this about 5 years, and I (me, the know it all, ha ha)

can still fall into 'this is behavioral' and 'my God where is the common sense?!'

 

I also had the child who never, ever had a behavioral problem at school, but could lose it big time with me and little sis as soon as the car door closed at pickup.

I have said, more than once when completely exacerbated at being verbally abused:

'You would never, ever speak to your teacher like this, so why me? Pretend I am your teacher!'

 

Rough stuff parenting PANS. On one hand, I do think holding her accountable, being tough, not allowing if I can, may have prevented it from getting worse.

On the other hand, when the child is gone and crossed the line, fighting it can make it worse.

Finding that line is sooo tiring. And sometimes impossible.

Hang in there- I am 'lucky', I guess, that my husband truly gets it- we don't judge each other- it's about survival at times. Maybe he gets it, because if he has a better way, hey man help yourself, YOU handle it then, ha ha. But seriously, he has seen the ups and downs, I do the research, I explain it, see what he thinks. He lives here, he sees first hand what's working and what is not. Things are better here-

I no longer try to get other people (re: family members) to try and get it. I don't have to justify to them.