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Symptoms I am questioning


mar

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Ds lips are causing much pain. I had him do the chamomile tea bag on lips to sooth. This is very ironic . This is the first time I had to do this since he was 7. He has been using aquaphor also. anyway we are in basement and tell him to go get pajamas on and he fears to go upstairs. Doesn't show it but I know from his questions and stalling. Goes finally and acts Like he went through ww2. He admits he was scared of who knows what. I feel Like a broken record but what the heck. He just got tested for strep . He is scared but tries not to show it, his lips are killing him and he is just all over. This is actually his first semester of doing horrible in some grades. I am not watching everything he does and kind of left everything up to him and he is struggling in many areas. I have not been really paying attention to hw and what not and leaving him to figure it out. Meaning this is what you have but more Like what do you have to do today and show me and are you sure this is all u have. I will ask to make sure he does what needs to be done. He is somewhat disorganized this year. Forgot to turn in assignment and did not do well on several tests. I think that maybe I am not as involved bc I want him to see him handle it. So don't know if his stress is do to this or what!!

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Mar --

 

Many of the things you describe are familiar to us and our DS's journey. Yes, I do think this is PANDAS-related, either because the stress/anxiety is tied to an auto-immune/inflammatory reaction to exposure and/or microbe, or because, having had PANDAS and learned some "coping mechanisms" during illness, your DS reverts back/resorts to some of those learned mechanisms in times of even more typical stress induced by school, expectations, etc.

 

My DS does many of the same things at times . . . engages in avoidance and distraction in the face of school work that intimidates him or "scares" him. When he begins to get a little behind in his schoolwork, especially, his anxiety ramps up and then it can take on a life of its own, feeding itself because he tries to avoid some of the work because it causes him anxiety, but then because he's avoided it, it starts to stack up, creating even more anxiety because now there's just MORE of it to either tackle or avoid, and I bet you can guess which one of those two he tends toward, left to his own devices. <_<

 

We, too, are trying to leave DS more to handle things on his own, especially given as he has both an IEP and a case manager at school that he can turn to in the event he needs help navigating a particular assignment or teacher. At times he seems to do well, and at other times he gets overwhelmed and then we have these long, drawn-out discussions about how he needs to just "move on" and tackle something, even if that "something" is only a drop in the bucket in his eyes. And, frankly, because of the OCD side of his behavioral tendencies (scrupulosity and perfectionism), he's not always the best judge of how well he is or isn't doing, and how much is or isn't on his plate. He tends to overstate.

 

When you talk about his lips are killing him, you mean dry and cracked? My DS has had a similar issue in the past, as well; always thought it was part and parcel of his eczema and general dry skin issues. As a baby and toddler, we would literally rub him down with Aquaphor or Eucerin every night after his bath. As an older kid, we've experimented with a lot of things because, especially in winter, his skin can get very dry and even inflamed with eczema, especially if he's in a flare and he's washing his hands more than usual, etc. The eczema has largely retreated with Pepcid and some good emollients like cocoa butter.

 

When it comes to lips, though, DS is very particular about how the lip ointment feels and tastes. We've tried a ton of them, always with the requirement that it goes on 1) before he goes to bed and 2) before he walks out the door on cold mornings. Our best luck in terms of product and DS's willingness to use it has been LypSyl Intense Protection LypMoisturizer. It's made with Swedish beeswax, coconut oil, Vitamins A & E and organic shea butter and comes in a plastic tube with a push-up lever that allows him to slide it up and the product out and onto his lips without him having to dip a finger into the stuff or whatever.

 

Hang in there, and use what you have at your disposal to help your DS contend with whatever exposure and/or inflammation he's encountered, as well as the behaviors he's exhibiting. He'll get through this and so willyou.

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Thank u so much for the reply. I think his grades and just school in general is causing his axiety. I have to keep reminding him to get started on homework but it's always I'm hungry ( which is fine I make sure he eats ). And he is getting a couple of c's this year which he has never had before and he asks me will u be made and is it bad If I get a c? The thing is I tell him it's not bad but if you are not studying and not putting effort into the subject then u should nt be satisfied with that. I am trying to teach him study habbits and to let him know that getting a C is not bad but if don't study and try then you shouldn't be proud of that. So yes me stepping back this year and letting him handle things and his grades are suffering is causes him stress. But I really need him to learn that it's his responsibility and not mine. I told him I am their if he needs help with understanding something or anything of that nature but he is in charge. He has been bringing his reading book home and is trying. The sad part is I want to take over and hope his stress goes down but I can't! He needs to figure this out on his own without moms help. So he has a bad quarter which I'm not worried about as long as he learns how to improve himself. Just kids now a days in general need to learn and realize that mom can't take care of everything. They need to realize that sometimes you fall down but it's ok wipe your knees and get back up. He was dependent on me for so many years I just want him to realize that he could do it on his own with some work. Yes it's harder on him bc he has the stress of tics and allergies and axiety and OCD but if he is always looking to me as he gets older that is not good for him. Don't get me wrong I am still here but this year it's more of what do u have to do and what do u think u need help with and could u do better. It's no longer well u need to do this and you need this signed and let me pack up your things and put it in book pack . He is a strong kid and I think he could do it. He has shown great results with different issues when I left it in his hands. Like when he was younger he always depended on me picking out his clothes and he would stress about it. I said you could handle it and wear whatever you like. Yes it was several months of mismatched and really should I sent him to school like this but he would ask is this okay and I said if that's what u want to wear then it looks good. Two years later he is helping dd what to wear bc she was going through the same thing. I think we as parents need to step back some times which is very hard when you see your child struggling and of course it depends on the situation. We all know our children and know what they can handle. Now his lips are bad and DH is doing full blown mouth tics bc of the redness. We use aquaphor and he is okay with it and puts it around his lips. I am interested in the LypSyl? Where do you purchase it? I am looking to throw something in his bookbag for school. It's sad bc I was downloading some iTunes games for him and as I looked at him he did his eye rolling and lips and he saids I'm sorry! I can't stop. I tell him never be sorry. He says I can't stop and I grab him and hug him and say I know And I understand. He looks at me and just nuzzles his head by me and wants that big hug!! At these times he always just wants to hug and he says u dont understand how much i love u. I tell him I understand and it's ok. Now the tears are flowing bc he is apologizing to me out of all people for something he can't control. The tears are flowing now of course and not in front of him. This is why I know these kids are strong.!! They amaze me with all they have to deal with. But it's really sad that they feel like they are doing something wrong!!

Mar

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That LypSyl sounds lovely. We use coconut oil on the lips but that product sounds much more convenient. I found the Aquaphor to be neither natural nor healing. My DS is often apologizing just like that. I feel awful for him and like you marvel at how much he manages everyday. I agree we need to step back at times, and I find I have to be very deliberate about doing so. But that space allows me to see a lot of success I might have otherwise missed. :)

Emily

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