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Just came back from shopping and eating with a friend. She knows son is sick, but she keeps insisting that his anger and moodiness is a choice. She keeps saying that if I am just firmer with him, he will stop. I have seen huge gains in son's mood and temperment since we started antibiotics. I also get to see the herxing, the huge quantities of snot, mucus, diarrhea, rashes, and hear about the ringing in his ears. No one could make up physical symptoms.

 

Do you just give up on these people? If this were not happening to my family, I don't know if I would believe it either. I tried to explain that this is pretty typical for Lyme patients and that as treatment goes along he will get better and better. She seems to think I am in denial.

 

How have you dealt with this with your friends and family? Any great one liners? No one would expect a cancer patient to be upbeat all the time, but yet my son if just supposed to "suck it up"?!?! I'd like to see her suck it up as they stick the Bicillin shot in her rump!!

 

I feel really p***** right now. Must go take a walk and calm down....

 

Cobbie

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Write this person a nasty letter. Put in every feeling and swear word you know. Save it for a week, then burn it.

Or ask her to write down her impressions and make a date for lunch one year from today. Ask her to re-read her impressions one year and one day from now and see if she doesn't eat crow.

 

On a more serious note, my answers have depended on how important the relationship is. If it's important, then maybe just put some space between you for awhile. I'm not sure anyone can understand if they haven't lived with something similar. Try not to be hurt too badly. As you said, you yourself might not understand if the shoe were on the other foot. It doesn't make this person "bad" just inexperienced.

 

The most important thing is for your son to know that you believe in him and the wonderful things inside him. Everything else is just noise.

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When I'm speaking women to women. I always respond with you know what its like to PMS right? You are tired, you have a headache, you are irritable, you are angry, its is everyone elses fault, you are right no matter the consequence but you swear to the world you are not PMSing. Well my kid has that feeling almost everyday.

 

When I'm speaking women to man. I always say you know what its like to have your wife/girlfriend PMSing right? AND they respond with OH I KNOW... I get it.

 

Otherwise I'd go with LLM first two suggestions.... I like them!

Edited by SF Mom
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When I realize that this is how someone continues to respond, I just make a mental note to stop talking about anything that is really going on. I end up saying "everything is good" or "the usual" and leave it at that. If we have enough to keep the relationship going without talking about pandas or lyme then it works. Otherwise there's not much reason to continue the relationship. Often after doing this for a while, I find that the dynamics change and it ends up working OK.

 

I know the emotion that it brings up. The other day someone was giving me strong advice about what I should do that I knew was not going to work. I finally said "until you are sick with lyme, and have have had a sick kid for the past 8 years, you won't really understand what it's like."

 

I really like the other suggestions too.

 

Susan

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Thank you all for your wonderful advice. I think I am just going to go with the distancing thing for right now. The hardest part is her son is my son's best friend and her daughter is one of my daughter's best friends. Maybe most of the boys activities will be at my house. (Probably work best since DS has to take so many meds anyway.)

 

This disease is so hard on everyone involved. I think I am a pretty sensitive person and I am trying to maintain a hard shell so that people's comments don't hurt me, but today was just not very successful with that!

 

Again, thank you for all of your wonderful insights. This forum truly is a lifesaver.

 

Have a wonderful weekend.

 

Cobbie

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Thank you all for your wonderful advice. I think I am just going to go with the distancing thing for right now. The hardest part is her son is my son's best friend and her daughter is one of my daughter's best friends. Maybe most of the boys activities will be at my house. (Probably work best since DS has to take so many meds anyway.)

 

This disease is so hard on everyone involved. I think I am a pretty sensitive person and I am trying to maintain a hard shell so that people's comments don't hurt me, but today was just not very successful with that!

 

Again, thank you for all of your wonderful insights. This forum truly is a lifesaver.

 

Have a wonderful weekend.

 

Cobbie

 

I am so sorry that you had to deal with that. I know how you feel b/c similar things happened to me during our lyme treatment. Some family members did not get it and made comments that were not supportive. It caught me by surprise b/c everyone was supportive when my son was developed Bells Palsy and was diagnosed wit lyme but as time went on and was struggling with lyme six months into it some family members made comments that indicated their doubts about the llmds and the course of treatment. They did not understand that it takes a long time to treat a bad case of lyme and coinfections. After doing all the research on lyme it was clear to me that no one in their right mind would seek treatment from a doctor who is not a lyme expert but others who do not have a sick child with lyme have the luxury of not doing any research and offering strong opinions. One person close to me made the comment "aren't you worried about antibiotic resistance?" Huh???? That took me by surprise. How else are we going to kill the lyme? If they don't think he should be on antibiotics then they must not believe he has lyme. What choice did I have? I was not happy about months of antibiotics but I didn't want the lyme to go to my son's brain or kill him (it was in his cns we believe b/c of the palsy).

Other times I was frustrated that some in my family did not understand how sick I was and that I could not keep up with all the family events-birthdays, baptisms, etc. It was too much and I found it hard enough to get through the day taking care of my kids when I was so sick. I was really sick for a few months and I was taking several mini naps a day to get through til bedtime dealing with my kids. The hard part is that you do not look sick when you have lyme but inside you can feel like you are 100 years old. If you had cancer you would get understanding but not with lyme. So I just stopped talking about lyme with certain people b/c you don't want to expend energy dealing with them on that subject. If they don't have the interest to watch the movie and read a little about lyme then they really should not offer such strong opinions. I had some neighbors who I would run into pretty often who never asked how my son was doing and they knew he had a picc line. I just don't think some people understand how serious lyme is. But we had others who were amazing and really surprised us with their concern. One new neighbor we didn't even know very well brought my son a teddy bear and a card when he got home from the hospital with his picc line. I think they were more in tune with what we were going through b/c they had dealt with a serious health crisis with one of their kids years before. IT certainly makes you more aware. Another kid in the neighborhood brought him some balloons when he was stuck at home during the summer with a picc line. It was so kind of them and so appreciated. So you also discover some really sweet people too during this. I do think that after dealing with a serious illness we are much more in tune to helping others with a health crisis. One of my sisters was diagnosed with lyme during our lyme treatment and it we supported each other and had a lot of laughs about lyme ignorance, etc. Its great to have someone you can talk to about it who gets it. I also have a neighbor who learned that she has lyme and we have a lot of fun talking about it and joking about it-you know diagnosing people :-) and reading about different treatments for lyme. We joke that we are practicing without a license. Laughter is great for dealing with the stress of it all :-). THats why this forum is so great- you know everyone gets it.

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This topic hits home for me and in our case distance was the only thing that worked. DD's father insisted her anger, rages, and behavioral problems could be "fixed" with better disipline. Nothing I said or gave him to read helped. I even tried bringing him to speak with her doctors and to counseling. Nothing worked. He felt he could "break her" from these behavioral problems. This was ultimately what destroyed our marriage. I used to play referee between the two any time one pushed the other's buttons. It was a horrible way to live. Once we got divorced and DD went to visit on weekends she would come back so distraught. She didn't want to go back there. I feel awful that I made her go back because now I realize he was emotionally very abusive to her. For so many years I tried to get him to understand her medical condition but he still thinks it's bad parenting on my part. DD has not seen nor spoken to her father in many months (not even at Christmas!) and although it's difficult for her to reconcile why he is that way, her counselors feel she is better off not being subjected to his abuse.

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Cobbie,

 

You've gotten lots of good advice from others here. It is simply just a sad fact that there are people who can't imagine how a physical illness might make a person (especially a child!) behave "worse" than they might otherwise. I don't know why... because pretty much everyone has at least had a headache and been snappy. As lymemom said, lyme is "invisible", and so people can't see the disability.

 

I have to say, I would have always thought of myself as a caring / sympathetic person. But having the experience of having a sick child who sometimes just behaved badly in public -- this has made me a much more humbled person. When I see some child throwing a tantrum, I just say to myself "who knows what that chld may be dealing with". Maybe before, I sometimes might have thought "poor parenting".

 

You just need to tell her that with all due respect, she just doesn't know what it's like. And you hope she never has to experience it. But right now you are handling things exactly as you should -- with the kindness and understanding that your child needs.

 

Mary

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So sorry you are dealing with this junk from your friend... on top of everything else! I would guess your friend is not such a good friend after all. If she knew you well she would know you are trying your hardest to do what is best for your child.

 

I like the bicillin shot part! I am a sucker for that! I got braces (as an adult) when my son got braces... I could understand his pain. Now my kids are getting bicillin shots, and I'm getting them too! LOL! Last time it was one on each side! Believe me, I would not be giving it to them (and I've actually "done the honors" myself to save on the trauma of having to go do the hospital weekly for shots) if it was just a matter of better parenting.

 

Plus, we treat all our kids the same, how come these two (I have two PANDAS/Lyme/Bartonella kids) can't seem to get over their fears (which they did not have a couple of years ago)?

 

What parent would be putting their child through that, plus all the meds and supplements, if we could just "discipline" them into "feeling happy?"

 

I think your friend will realize in time this is a physical illness with psychological ramifications. But this is new for most people out there. A couple of years ago, I would have thought just like your friend. Then I got hit with depression (I know believe I got Lyme and then depression stemming from the Lyme), and I truly could NOT help my self. It was like PMS for weeks on end. They put me on Celexa and it totally helped. I just could not get over it. If it was "all in my mind", how could this tiny pill actually MAKE ME FEEL BETTER? That experience really prepared me in a weird way to understand my son when he started going downhill. He really CANNOT help it sometimes.

 

I think some things you just cannot understand until you live through them. Give your friend a break, give her some time and maybe one day she will understand (although I hope she never has to go through what the parents here have gone through).

Edited by mati's mom
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