inattentive, non-cooperative, in a fog

[smartyjones]

ds 9 has been on homeopathic treatment for all TBI, strep and CMV for about 2.5 months. we've seen good results -- no more complaints of joint and ankle pain, no more stomach complaints, cessation of separation anxiety and 'bad thoughts' at bedtime. he is still having exercise shortness of breath (helped with an inhaler before exercise) and poor endurance.

 

what's new in about the past 3 weeks or so is brain fog. he's horribly inattentive -- although he's doing much reading -- he's always been an avid reader but now is almost to a inappropriate level -- it seems to be the only thing he can focus on. he is quite non-cooperative. he is doing much complaining -- about everything. he's not so happy with what we're doing in the moment but dreaming about what else we could be doing. much sloughing around and stomping if things don't go exactly his way immediately.

 

last night, he missed baseball practice b/c he couldn't get it together to get ready -- like get his pants from the closet and put them on his body. dh was upset b/c he's an asst coach and head coach just asked yesterday about ds's fittness to play -- not on observation but on knowledge of lyme. dh said he's improving and will be fine. i'm confident in his physical ability to play but mentally, he's a bit out to lunch. this year is a step up and the team will depend on him to be there and be in the game. we discussed with ds that he doesn't have to play if he's not into it. he claims strongly he very much wants to play but then just can't seem to pull it off -- he's 'okay' at practice but not as into it as the past or as he should be.

 

any suggestions for coping with my 9 yo that i think would be much easier to treat like a 3 yo? i don't mean that as rude as it sounds, it would just be so much easier.

as far as baseball, should i get all all together like i did when he was 4 and played sports? it's hard for me to absolve him of any responsibility. is that what he needs?

[Orion]

 

what's new in about the past 3 weeks or so is brain fog. he's horribly inattentive -- although he's doing much reading -- he's always been an avid reader but now is almost to a inappropriate level -- it seems to be the only thing he can focus on.

 

The inattentiveness, non-cooperativeness and especially brain fog, are indicators that Lyme may still be an issue. My daughter's executive functioning skills plummeted down to the 1%ile in a relatively short period of time. Fortunately for her, she never lost her ability to read, but sustained attention even in this area was hard.

 

Mentally she knew what needed to be done, but physically putting thoughts into actions completely flummoxed her. We thought she was being difficult, the tasks at hand weren't that hard. She knew what to do- just couldn't get it together enough to get it done. Her short term memory (especially when it involved auditory processing) was shot, due to Lyme & Co., adding to the problems.

 

Also, we always thought she had exercise induced asthma. It turned out she had Babesia.

 

Not sure if any of this applies to your situation, but maybe it will give you more avenues to investigate.

[smartyjones]

Not sure if any of this applies to your situation, but maybe it will give you more avenues to investigate.

 

 

yes - orion - it all applies. is your dd still having trouble? how long did it last for your dd? did you have any 'tricks" etc to help cope? what was her diagnosis and treatment?

 

i'm confident in our treatment and that this is a type of phase to go through on the road to getting well -- it's just very frustrating and i'm looking for coping ideas while we're treating.

 

i'm happy we're using other avenues than traditional med -- we're walking the line btwn both -- traditional med basically gives a shoulder shrug and suggestion to use inhaler -- which we are as short term help -- and eyebrow raise to me with inappropriate expectations or him being lazy that he drops off at center field and can't keep up with the other kids although he loves sports and is strong muscularly. he shows high RBC, low MCH and MCV -- although only slightly - which i believe is due to babesia. traditional med thinks iron-deficient anemia -- yeah, why? answer = shoulder shrug. i think they'd wait a few years for him to be untreated and quite sick when he's showing signs right now. i'm happy we're on it but makes me wonder for all the other kids who show signs and just get a shoulder shrug.

[pixiesmommy]

I don't have much advice, because we are very much there. I just wanted to say I know what you mean about treating them like a 3 yr old. My PANDAS/Lyme dd is 10 and I have a another daughter who is actually 3. Guess who is easier to deal with, more attentive, more flexible, and can communicate? It's really sad and frustrating

 

FWIW, we don't let my 10 yr old get involved in anything like that where someone depends on her, because it's totally unrealistic. We never know how she will feel on any given day.

[Orion]

Not sure if any of this applies to your situation, but maybe it will give you more avenues to investigate.

 

 

yes - orion - it all applies. is your dd still having trouble? how long did it last for your dd? did you have any 'tricks" etc to help cope? what was her diagnosis and treatment?

 

 

As her docs would say, DD got bit by a "very dirty tick" and got "wholloped". This happened almost 9 years ago.

 

Her original pediatrician passed off the expanding (non-bullseye)rash as a spider bite, and told us to come back if she developed any other symptoms. Several months later it was in her nervous system and was started on some oral abx. Several weeks later she was taken off of the amoxicillin.The ID doc said she had more than enough treatment. Her symptoms were resolving, but not quite all gone at the time. Her WB was still off-the-chart positive.

 

Her LLMD's later would say that was when the damage was done - not that she wasn't treated right away, but what treatment she was given was too little and for too short a time. This just set her up for autoimmune issues, and the co-infections to take hold, as well as develop a Lyme chronicity.

 

Over the past 9 years she's had several relapses. The first one started 2 years after the original infection. She was about 70% better, and still under treatment, when the next one hit. Co-infections were finally identified, and tackled- although there are signs that Babesia is back in play.

 

She is currently on IVIg for autoimmune issues. IV abx and some oral abx for Lyme, other Rx's for hormone dysfunction (hypothalamic hypopituitarism), supplements to protect the myelin sheath and of course! probiotics.

 

She still has a ways to go...currently on medical leave from school.

 

As far as brain fog goes, we play to her strengths (visual). She is more apt to remember something if she sees it...from writing things down for her, to using hand signals. If she's given a verbal reminder- it is a crap-shoot that it even makes it into one ear, much less passes through to go out the other ear.

[LNN]

he is doing much complaining -- about everything. he's not so happy with what we're doing in the moment but dreaming about what else we could be doing. much sloughing around and stomping if things don't go exactly his way immediately.

 

last night, he missed baseball practice b/c he couldn't get it together to get ready -- like get his pants from the closet and put them on his body. dh was upset b/c he's an asst coach and head coach just asked yesterday about ds's fittness to play -- not on observation but on knowledge of lyme. dh said he's improving and will be fine. i'm confident in his physical ability to play but mentally, he's a bit out to lunch. this year is a step up and the team will depend on him to be there and be in the game. we discussed with ds that he doesn't have to play if he's not into it. he claims strongly he very much wants to play but then just can't seem to pull it off -- he's 'okay' at practice but not as into it as the past or as he should be.

 

any suggestions for coping with my 9 yo that i think would be much easier to treat like a 3 yo? i don't mean that as rude as it sounds, it would just be so much easier.

as far as baseball, should i get all all together like i did when he was 4 and played sports? it's hard for me to absolve him of any responsibility. is that what he needs?

If you substituted the word "concussion" for "lyme" would it make your decisions easier? If a teacher told you he was complaining but you knew he had just suffered a concussion, you'd probably tell the teacher to go easy on him. His brain has healing to do. If the coach told you he wasn't performing at his best in baseball and was were worried he would let the team down, but you knew he'd just suffered a concussion, you'd ask the coach to maybe expect less of DS at the moment, but to not give up on him or throw away the rest of the season.

 

I think that yes, I would get his gear together for him like you did when he was 4. I would try not to focus on letting the team down - that's the head coach's responsibility. I think it will mean a lot to your son to have you support him and not up the ante on his needing to be at a higher level than he is right now. Let him play (or sit on the bench) and make sure he knows you believe in him. If he screws up, so what? Granted, I'm not a sports person, so maybe I don't get it. But in the long run, it will matter more to your son that he had your support than whether he dropped a ball or spaced out. He has a disease and no one wants his old self to return more than he does. Try to accept him as he is - fight for more, but don't make him feel as if his current best isn't good enough.

 

I struggled with this for a very long time. It got easier once I was finally able to let go of my own expectations and instead just wanted him to feel joy. I am still a work in progress. I'm not sure we adults always understand just how much our kids are dealing with. Your support will mean everything to him.

[momaine]

 

I struggled with this for a very long time. It got easier once I was finally able to let go of my own expectations and instead just wanted him to feel joy. I am still a work in progress. I'm not sure we adults always understand just how much our kids are dealing with. Your support will mean everything to him.

I just wanted to "like" this post. I also think we cannot begin to understand how much these kids are going through that we can't see. Do what you can to support his efforts.

[LNN]

Thanks for the reassurance. I was worried it might come across wrong - like some sort of "holier than thou" tone that I didn't mean. My son just finished two weeks of state-wide assessment testing and his brain fog was as bad as it was just before we started lyme treatment. So now his fog will be "immortalized" in his scores and I worry how much his scores will impact teachers' expectations of him. So I really do sympathize with Smarty's concerns. It's been a real test for me to try to focus on my son's needs and let go of my own "mourning". I've been dreading these tests for the past two years of Pandas (this is his first year - of many - of taking mastery tests).

 

We also switched meds yesterday (waited until tests were over) and today saw an increase in symptoms similar to what we endured post-ivig last summer, including a lovely rage over a Club Penguin Wii game that left both my son and daughter in tears. So I tried my best to remember my own post and treat them both with kid gloves instead of seeing it as a case of spoiled brat being a sore loser. Wasn't entirely successful, but did much better than last summer, so that's something. I think the biggest difference between Pandas world and lyme land is that in Pandas world, I was always terrified that an episode could spring up out of nowhere and might take months to wind down, only to be followed by another right after it. In lyme land, we call it a herx and have an expectation that it will get better, and eventually stay better. I pray we're right.

[Suzan]

My dd8 right now is demanding, bossy, annoyed, self centered, complaining, and not cooperative. She can't control her responses, can't do her homework, won't let go of an idea... It's so awful because she was doing so well. It's got to be herxing and stirring everything up from starting the lyme meds a month ago. We just have to keep plugging through and hope it gets better. Maybe the neuro/chiropractor stirred things up too. And we are on vacation and having very busy days. I feel bad for dd9 who is ready to really have a nice vacation and it's like we are trapped by this negative, controlling, unhappy person.

 

Anyway, I didn't mean to get into all that but I can understand what you are going through.

 

Susan

[philamom]

 

I struggled with this for a very long time. It got easier once I was finally able to let go of my own expectations and instead just wanted him to feel joy. I am still a work in progress. I'm not sure we adults always understand just how much our kids are dealing with. Your support will mean everything to him.

I just wanted to "like" this post. I also think we cannot begin to understand how much these kids are going through that we can't see. Do what you can to support his efforts.

LLM- I love your posts! This was a great reminder for me today -- just what I needed...Thank you!

[kmom]

Ditto! LLM--so true...all of it. Thanks!

[smartyjones]

If you substituted the word "concussion" for "lyme" would it make your decisions easier?

 

I think that yes, I would get his gear together for him like you did when he was 4.. Try to accept him as he is - fight for more, but don't make him feel as if his current best isn't good enough.

 

 

thank everyone for your thoughts! very good advice LLM about subsituting another word/condition for lyme. we don't get frustrated with the actual sports performance, it's the cooperation and motivation.

 

so this morning, dh put baseball clothes in the hallway, moved his batbag from one car to the other, filled his water bottle -- all things ds would have been responsible for previously. things went much smoother and he was happy to go to practice. after, he said, 'did you see how quickly i got into my clothes today after getting up?" "yes, i did. that was very impressive."

[LNN]

after, he said, 'did you see how quickly i got into my clothes today after getting up?" "yes, i did. that was very impressive."

 

Isn't that too funny! You do 90% of the work and they glow just from being able to accomplish the 10%, with hardly any notice of all the load you just carried for them

 

But we have the same experience, which is actually encouraging. I sometimes get on DS, making sure that his disease(s) don't become an excuse for turning into a lazy, spoiled kid. But then there are times when he genuinely can't function like a normal 8 yo and really would do more if he could. You can see it when they beam with pride just for doing that 10%. That's when you know you did the right thing by lightening up.

 

The trick is knowing when to push and when to lighten up. It's ever-changing, even throughout the same day or week sometimes. I'm happy if I get it right more than half the time.

 

BTW - loved your post on the Pandas forum about Pandas not being an incorrect, but rather an incomplete, dx. You described our story to a tee. Thank God for those "lyme fanatics" who crossed and re-crossed our paths.