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Is it just part of PANS/LYMES that the children refuse to out much?


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Hello,

We are now on zith and Minocycline in an attempt to stop one long low grade fever flare. Reacting to so many meds now with odd side effects so we must be very careful. His feet burned with Valtrex and his feet went numb on ramifican. FEET?? Diagnosed with Bart/PANS and treated for 5 months. We stopped bc med reactions. Within a week, attempted to regroup and it all returned. (lymes/PANS symptoms)

 

Tell me something, are we alone? I mean does anybody else see this? I read that so many kids go to school. NO way here. How do ypu get your children up and out the door to school each day???? DS can up and get dressed but it's very slow and fragile. Our DS rarely wants to leave the house. If he does, it's for a short time and then he refuses for the next few days following bc he feels overwhelmed with his outing. Also.....please tell me what do these children do all day??? Mine can't go out or read or play much.... so he only watches TV and waits for video time to kick in. NO friends bc rarely goes out. He was only aloud on Vgames during weekends pre PANS , but it seems to be the only thing to calm him down and he is now up to 5 hours a day. It's become an addiction. It's all he thinks about!!!! What do we do to passs the time with him??

Love to hear if I am alone or others see similar pattern as well?

Thank you all for your kindness and knowledge.

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I am on a roll now, almost a month with the violent rages etc of a flare that's been going a couple months. In these times we could care less about school or any other normal childhood interest or pursuit. Videos and games are soothing and keep them out of trouble. They could be obsessing over their body fat or picking at their scalp and nails.

 

Anyways I guess if the kids are happy so are we. They can get back to normal life after the flare. It's a medical problem and healing is the first priority. If they had got sick with chicken pox, I wouldn't complain if they sat around and watched videos or played games. Why should this be different?

Edited by dasu
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DS19- immune deficient/PANS/Lyme late stage, is mostly housebound except for treatment days- 2 IV's a week and 1 therapist apt per week. Other than that he is online in his room. We are allowing him to do what he needs to do at this point to feel safe, conserve energy, and heal. He is very gradually improving.

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DS 14 was 11 when PANDAS hit. He was in 6th grade, what, 3.5 months in? He missed all of middle school, no home school, no online school, no tutoring. He didnt' have 'flares' per se, he just had 1 non-stop long 'flare' that stopped him in his tracks. There was no way he could do any type of schooling and all his social interaction also ceased completely.

Video Games saved his life, period. He's just now gone back to school, into 9th grade, started w/ 1 class and is up to 3 now, will add another next semester. He's begun to swim for his old private club and just was asked by the HS coach to join the boys team (3 weeks into season, he's so flattered) so our new normal is amazing.

Where he's been, I can't hardly believe he's where he is now. He also has been extremely sensitive to all typed of meds, paradoxical reactions all over the place. I wish you the best, it's so hard, hang in and do what you have to do. If it means he plays excessive VG...well, there are worse things. My son is getting an A in Algebra after missing ALL of Middle School math. They didn't warp his brain, I think it saved him actually and there were times when I can say he was completely obsessed, in fact he obsessed about obsessing....but somehow he's made it out the other side.

Wishing you strength, you can get through this and so can he.

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DS19- immune deficient/PANS/Lyme late stage, is mostly housebound except for treatment days- 2 IV's a week and 1 therapist apt per week. Other than that he is online in his room. We are allowing him to do what he needs to do at this point to feel safe, conserve energy, and heal. He is very gradually improving.

Thank you for sharing. Thank you all for sharing. It's been one year this Dec. 6 months searching and 6 months treatment. When I hear these stories my heart breaks for these children. It also makes me stronger for my child so God bless you all for taking time to tell your story. It helps my family members especially!!

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The mac computer was the best investment I ever made! It is the only thing that calms my child. If it were not around I would be hospitalized for a nervous break down. She needs it. Poor kids. No, my child can not attend school. With all confusion and racing thoughts it's impossible. All I can do at this time is to keep trying to get her some help while keeping her safe. Hang in there. Your certainly not alone!!!

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  • 3 weeks later...

The reactions to meds is herxing. Bart is notorious for the herx and the foot symptoms. Detoxing is very important when treating Lyme and coinfections. It helps the herxing.

I just got this response from Dec and not sure why! Ok if it's herxing than why are the docs (llmd) simply assuring us of this and requesting us to push thru. I call the offices to share the reactions and they immediately say stop med!! The burning feet? I know that's Bart right? But the docs say you cant be sure so stop that one too. We just had him on 2 weeks of Minocycline and he was clear thinking the first time in weeks (months actually) and he broke out in hives!! Dr T says again "stop" meds and we will find new meds. How can we gain any ground like this? I don't know what is herx or serious reaction from drugs and I guess neither do Docs. As far as Detox I have him on Charcoal at night and lots of lemon water. Plus calendula drops and Kudzu for lymph drainage. Also Beyond Balance neuro detoxer. Our LLDO is very experienced supposedly and we just don't get why they don't tell us calmly "this is to be expected" Instead they say stop and we will try something new!!!! I specifically ask "is this herx?" They respond by saying it may or may not be but let's not take a chance. I don't want to keep my child on something that can potentially cause a threat to his health. But we also want to try and give the treatments a chance. :( Thanks for answering me and have a nice New Year!

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I have to say I've never hung my hat on 'it's a Herx' so let's power through. If I've given it a week or 10 days and the negative side effects are still there we pull back. I support Dr.T and your LLDO actually, but you as the parent have to do what you feel is right for your child in the end.

Take care~

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Hang in there. My son is 14 and has not been in a public school for 3 years. He does online schooling and does play on the computer and X-box online with other kids. He does have at least some social life.

 

Due to his current treatment, he cannot be out in crowds. However, he was not out in crowds before he started treatment because he would catch virues and infections so easily. Please don't feel bad if you must do this situation for your child. For my son, home schooling was the best choice.

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