How do we keep it together

[Lori Ann]

I know that I am not the only person going through this right now which is why I am on here typing this. How do we keep from going insane with the crazy things that are happening to our children and the lack of care from the medical community. I am sitting here in tears this morning because my ds 7 has just called me an idiot for the fifth time this morning and refuses to do anything I ask. He has just told me that I should be dead and I don't think I can do this anymore. He is the most important thing in my life and I will do anything for him, but right now, I can not stand to be around him. The doctors we have seen so far do not care that this is happening in our home and refuse to treat for PANDAS with anything other than antibiotics. Matter of fact, they do not seem to care about the behavior side of things at all, only the tics and other movements. They don't seem to care that he is scared to death of school and it is a struggle to get him to let go of me in the morning. They don't seem to care that I am bleeding right now because of the scratches on my arm (I asked him to turn off the video game he was playing). They don't seem to care that I am spending countless hours balled up on the floor crying, grieving terribly for the wonderful son that I lost in February. If my neurologist had this happen to his child, I bet he would not hesitate to do everything possible to treat them. Why does he make me feel like a horrible mother when I ask for something more than abx? He says that his case is not severe enough to put him through such invasive procedures such as PEX or IVIG. What does he expect me to do when the abx don't work (which they are not!). It would be one thing if I was a terrible mom and raised a terrible child. I would not be concerned about his future. But the truth is, I am not a bad mom. I have done a wonderful job raising my son. He was always friendly, smart, funny, and very helpful. He turned into something else over night and I do not think that I should accept this change. It is not right! Sorry for the rant, but I just had to vent to my cyber family. You can all understand the frustration and fear I am feeling right now.

[pixiesmommy]

I will try to post more later, but seeing a PANDAS specialist is probably the only way to get IVIG if no other doctors are taking you seriously. We had a very dire situation with my daughter and no one would take us seriously until we found Dr.K.

[EmersonAilidh]

I know that I am not the only person going through this right now which is why I am on here typing this. How do we keep from going insane with the crazy things that are happening to our children and the lack of care from the medical community.

 

Because we know we're right & we have something to fight for. I feel a bit odd saying "we" when we're in different positions, but we're both on the same side of this battle so I feel like I'm fighting with you guys.

I can't speak for your son but I can say that I hate it when I talk like that. We have the flash "rages" but with me I am just ALWAYS ANGRY no matter what's going on, & that oftentimes gets taken out on my poor Mom. We are stressed out, frazzled, frustrated, enraged, annoyed, furious, irritated, & every other angry adjective you can think of at our own stupid bodies more than anything else. I don't like knowing all of the trouble that I cause my parentals as well as every doctor that doesn't know what to do with me, & oddly enough that more often than not gets channeled right back into the very people that I don't want to hurt. We LOVE our parents but on most days I, personally, just hate everything. This sounds negative but it's really not.. All I'm trying to say is that I can't imagine how much it hurts to have your child say things like that to you, but it's not because we honestly think that. I hate myself for all of the stress that I have brought into my Mom's life, & when I do take it out on her it's because I'm angry at myself because there's nothing I can do to make it any easier on her & I know that it's my fault.

 

As far as your neurologist goes.. Don't listen to him. You know your child better than anyone else, & if he's not understanding & not giving you what you both need, find someone who does. I hope you feel better!!!

[tired mom]

I know that I am not the only person going through this right now which is why I am on here typing this. How do we keep from going insane with the crazy things that are happening to our children and the lack of care from the medical community.

 

Because we know we're right & we have something to fight for. I feel a bit odd saying "we" when we're in different positions, but we're both on the same side of this battle so I feel like I'm fighting with you guys.

I can't speak for your son but I can say that I hate it when I talk like that. We have the flash "rages" but with me I am just ALWAYS ANGRY no matter what's going on, & that oftentimes gets taken out on my poor Mom. We are stressed out, frazzled, frustrated, enraged, annoyed, furious, irritated, & every other angry adjective you can think of at our own stupid bodies more than anything else. I don't like knowing all of the trouble that I cause my parentals as well as every doctor that doesn't know what to do with me, & oddly enough that more often than not gets channeled right back into the very people that I don't want to hurt. We LOVE our parents but on most days I, personally, just hate everything. This sounds negative but it's really not.. All I'm trying to say is that I can't imagine how much it hurts to have your child say things like that to you, but it's not because we honestly think that. I hate myself for all of the stress that I have brought into my Mom's life, & when I do take it out on her it's because I'm angry at myself because there's nothing I can do to make it any easier on her & I know that it's my fault.

 

As far as your neurologist goes.. Don't listen to him. You know your child better than anyone else, & if he's not understanding & not giving you what you both need, find someone who does. I hope you feel better!!!

Emerson..You just made me cry because you explained from your heart how it feels. I have always and continue to be my daughter's "trigger". I always felt that the verbal abuse I take is all those feelings she has bottled up inside. I HATE that you guys have to go through this. Know that you are a beautiful person inside and out..

[tired mom]

Yes,I understand everything you said and I have been there many a time. Mine wished I was dead and would say things to me that would bring me to tears. I too have been failed many times by the ignorance of the medical field. Keep moving forward and see one of the Pandas Dr. if that is possible. Hopefully that white paper should be out soon. Has anyone heard anything yet??????

[Lori Ann]

Thank you so much Emerson, you just explained to me how my son feels. He can not express his feelings in words, but you can do so eloquently. You just made things a little bit better knowing that it is not so much me, but the PANDAS.

[peglem]

I know that I am not the only person going through this right now which is why I am on here typing this. How do we keep from going insane with the crazy things that are happening to our children and the lack of care from the medical community. I am sitting here in tears this morning because my ds 7 has just called me an idiot for the fifth time this morning and refuses to do anything I ask. He has just told me that I should be dead and I don't think I can do this anymore. He is the most important thing in my life and I will do anything for him, but right now, I can not stand to be around him. The doctors we have seen so far do not care that this is happening in our home and refuse to treat for PANDAS with anything other than antibiotics. Matter of fact, they do not seem to care about the behavior side of things at all, only the tics and other movements. They don't seem to care that he is scared to death of school and it is a struggle to get him to let go of me in the morning. They don't seem to care that I am bleeding right now because of the scratches on my arm (I asked him to turn off the video game he was playing). They don't seem to care that I am spending countless hours balled up on the floor crying, grieving terribly for the wonderful son that I lost in February. If my neurologist had this happen to his child, I bet he would not hesitate to do everything possible to treat them. Why does he make me feel like a horrible mother when I ask for something more than abx? He says that his case is not severe enough to put him through such invasive procedures such as PEX or IVIG. What does he expect me to do when the abx don't work (which they are not!). It would be one thing if I was a terrible mom and raised a terrible child. I would not be concerned about his future. But the truth is, I am not a bad mom. I have done a wonderful job raising my son. He was always friendly, smart, funny, and very helpful. He turned into something else over night and I do not think that I should accept this change. It is not right! Sorry for the rant, but I just had to vent to my cyber family. You can all understand the frustration and fear I am feeling right now.

We have to constantly remind ourselves that its the PANDAS treating us that way, not the child. Mother's seem to continually get the worst of the behavior because, I think, it has to come out and our kids know we are good parents, who will not stop loving them no matter what they do. They only feel safe (well, safer- alot of that anger is fear based) doing that with us.

Is there any way you can travel to Dr.L? She'll take you seriously, and knows the devastation those PANDAS behaviors can have on the whole family. I'm just suggesting Dr.L because I believe she is the closest for you.

[EmersonAilidh]

I have my reasons for how I feel towards my Mom, but nine times out of ten when I say things like that it has nothing to do with any of those reasons. I can't help being sick but I cannot stand seeing the toll that it takes on other people, namely my Mom (who admittedly only recently really started showing that she cared). It's frustrating to know that you're causing someone that you care about a great deal of pain & there's nothing you can do to stop it.

 

& that's what I'm on this forum to do. <3 I know that a lot of kids can't share like I do, so I'd like to think that I'm helping share for them.

Oddly enough, literally the ONLY time that i talk like this is on here. One mom once said to me "Just remember, every moment we're on here is a moment we're not with our kids". As a general rule of thumb, if I'm on here, I'm feeling better than usual. Above baseline, hah. I have my meltdowns & freakouts & compulsions just like everyone else's kids but I try my best to do my part in helping all of us. Being alone in this for as long as I have has made me all too eager just to contribute my experiences to help all of you guys.

 

I hope you are feeling better!!!

[T_Mom]

Wow--I can relate this morning. The yelling, screaming "I hate you" and "You are the worst..." from a 10 year old can be devastating.

 

Peglem said it so well--We do have to constantly remind ourselves that it is the Pandas treating us that way, not the child.

 

This is NOT easy.

The only thing I can think to add is to ask if you have ever tried a steroid burst? Dr. K (via phone consult) was a huge help as we worked with a local neurologist who implemented it for us. Dr. K's idea of using it as an "indicator of Pandas" is enticing as IF it makes a big difference then you have some back-up to the fact that it is inflammation that is at the root of the behaviors. Dr. K. would say that it also indicates that the child may be a good candidate for further treatments. It sounds like you may need to explore new doctors as well--

 

Steroid burst was a life-saver for us twice.

[michele]

Did yours get worse on the steroids initially? At what point/day did you see improvements? When we did the three week burst my son seemed to get very angry/agressive during. Afterwards he improved. We now are in anoher exacerbation since beg Aug and I am not sure to try the steroids again or not? \

Wow--I can relate this morning. The yelling, screaming "I hate you" and "You are the worst..." from a 10 year old can be devastating.

 

Peglem said it so well--We do have to constantly remind ourselves that it is the Pandas treating us that way, not the child.

 

This is NOT easy.

The only thing I can think to add is to ask if you have ever tried a steroid burst? Dr. K (via phone consult) was a huge help as we worked with a local neurologist who implemented it for us. Dr. K's idea of using it as an "indicator of Pandas" is enticing as IF it makes a big difference then you have some back-up to the fact that it is inflammation that is at the root of the behaviors. Dr. K. would say that it also indicates that the child may be a good candidate for further treatments. It sounds like you may need to explore new doctors as well--

 

Steroid burst was a life-saver for us twice.

[amyjoy]

I SO hear your frustration. I have a 14 year old son who has had PANDAS for 5 years, and now that we know what it is and know what to do about it, we can't yet afford the IVIG treatment. The other day i felt so desperate and frustrated that it occurred to me i finally understood those movies about some poor person thinking about jumping off a bridge or whatever so that their family could have the life insurance, you know, like that airplane movie?? It is so wrong, and its wrong that we parents have to be put in this position of parenting and diagnosing and fighting for treatment for our children. It is true that the only way to find treatment for your child is to travel to one of the PANDAS MD's. BUT if you live on the west coast we will treat your kids in our office www.hillparkmedicalcenter.com. I don't mean to advertise and i guess this is advertising, BUT we need to make care accessible for our children so that we don't all end up thinking about jumping off a bridge from sheer frustration and, like you said, anger at a system that is so limited and so closed to new thought. I pray the information from the recent NIMH meeting about PANDAS is published SOON and finds its way through our stymied and dense medical system. Best of luck with your child.

[T_Mom]

Did yours get worse on the steroids initially? At what point/day did you see improvements? When we did the three week burst my son seemed to get very angry/agressive during. Afterwards he improved. We now are in anoher exacerbation since beg Aug and I am not sure to try the steroids again or not? \

Wow--I can relate this morning. The yelling, screaming "I hate you" and "You are the worst..." from a 10 year old can be devastating.

 

Peglem said it so well--We do have to constantly remind ourselves that it is the Pandas treating us that way, not the child.

 

This is NOT easy.

The only thing I can think to add is to ask if you have ever tried a steroid burst? Dr. K (via phone consult) was a huge help as we worked with a local neurologist who implemented it for us. Dr. K's idea of using it as an "indicator of Pandas" is enticing as IF it makes a big difference then you have some back-up to the fact that it is inflammation that is at the root of the behaviors. Dr. K. would say that it also indicates that the child may be a good candidate for further treatments. It sounds like you may need to explore new doctors as well--

 

Steroid burst was a life-saver for us twice.

 

 

Our d had ups and downs while on the steroids but when she cleared with the steroids it was just as Dr K says: a sudden and obvious reaction. There was no doubt it was like a jump-start that helped in the long term.