TO THE SKEPTICS...

[saidie10]

thanks for letting me vent. just writing and saying this to myself helps me cope right now.

 

"do not doubt the perseverance of a mother to fight for her child. i will not sit idle and assume that ANYTHING is just regular childhood antics or behavior when I believe in my heart there are underlying issues. I WILL NOT DISCIPLINE MY CHILDREN for something I am not sure they can control. I WILL SHOW SYMPATHY AND LOVE until i have the answers." ME - MOM, the one who gave birth to them, the PARENT, the one in charge of discipline and everything else! the one who does not stop thinking about the two loving boys who are just struggling right now.

[MomWithOCDSon]

thanks for letting me vent. just writing and saying this to myself helps me cope right now.

 

"do not doubt the perseverance of a mother to fight for her child. i will not sit idle and assume that ANYTHING is just regular childhood antics or behavior when I believe in my heart there are underlying issues. I WILL NOT DISCIPLINE MY CHILDREN for something I am not sure they can control. I WILL SHOW SYMPATHY AND LOVE until i have the answers." ME - MOM, the one who gave birth to them, the PARENT, the one in charge of discipline and everything else! the one who does not stop thinking about the two loving boys who are just struggling right now.

Brava, Saidie!

 

Dr. K. made an interesting observation in this regard when we saw him last week. He said the mom tends to "just know something isn't right," and then she keeps an eye open for symptoms to support her intuition. The dad, meanwhile, needs to see the symptoms first, and then he'll agree that something isn't right.

 

For what it's worth, I had a 3-month term of not being on speaking terms with my own mom because she lashed out at DS once when he was 4 and was having an anxiety reaction that he lacked the verbal capacity at the time to explain. Frankly, I didn't know what was up at the time either; they only thing I "knew" was that he wasn't behaving as he was in order to be willful or problematic; he just couldn't help himself. So, I think even "Grandmas," despite being mothers themselves, don't usually get it, either. It's like the intuition just can't make the leap to skip the generation!

[airial95]

We need a "Like" button on here just like Facebook! LIKE LIKE LIKE!!!

 

My PANDAS son is only 2 1/2, so I've gone through this repeatedly with my mom who insists he's just 2 and this is how all 2 year olds behave. She'd roll her eyes at me whenever I'd mention a trying day or Dr. appt. or the like. It wasn't until a couple of weeks ago when they had the kids overnight and took them to the park that she finally conceded that something was wrong.

 

One of my son's OCD habits involves rocks - if he sees rocks, he has to pick them up and put them "back". At home, it means taking them from the french drain at the back of the house to the front yard and throwing them in the trash. At a neighbors house - who's garden has all rocks, it's a matter of moving them from one area to another until they're "fixed". He'll even pick up rocks in random parking lots and make you hold on to them until he tells you where to put them.

 

When they took him to the park, he spent the entire time very upset because the rocks were "broken" and "lost" and we have to "save them". They were there for over an hour and he didn't go on the playground equipment once, the entire time was spent searching for and saving rocks. When it was time to go - he obviously wasn't finished and they took him from the park kicking and screaming, which didn't stop until he finally cried himself to sleep at nap time a while later.

 

I got a very quick phone call from my mom at that point that said - "I'm sorry - you're right - that's not normal." As much as I hated to hear about how my little man suffered, I couldn't help but smile when I said "TOLD YOU SO!"

 

Mommies know their kids the best, and if mom says something is wrong - 99% chance she's right.

[Fixit]

I like to type the AMEN!!! button...more spiritual, with flavor

[peglem]

Another way to look at it is that your parents see THEIR child struggling and think they have something to offer that will help their child.

[thereishope]

Family giving you grief, huh? Been there. Now I learn to share on a need to know basis. Too many insults have come my way.

[bgbarnes]

BRAVO!!! I just feel like screaming right now after yesterday...My SIL is a F*****G B***H!!! My Mother's Day sucked!

When i said something about my ds stomach pains and we found out he can't digest milk proteins- she said my sisters stomach hurt her whole life and she is fine- first off her sister is NOT fine and I am a better mother than her parents are- MY SON CAN"T DIGEST MILK proteins. She says he can probably have some milk without it being a problem- when exactly did she get her M.D.?

I don't even want to get into what she said about me petitioning to hold my kids back in school next year- Pandas Ds is academically gifted but missed too much school this year and we don't know what our year is going to look like with PANDAS treatment etc... we want a less stresssful year for him. - my dd is just too young and needs a little more time to mature even though she is REALLY tall. I know in my heart just like you said that it is the right thing for my children. They are both summer birthday and most parents in the district start their kids ( especially boys ) late to give them advantage so they are both in class with kids a full year older than them.

 

 

Then when talking about PANDAS- she said my kids are just so healthy because they were in day care since they were 6 weeks old- first that is not even true ( my Mom watched her oldest until school got out and she went to daycare at 6 months...) not to my kids were in daycare exposed to everything too! We explained PANDAS is an autoimmune issue and that we know that my ds already had an autoimmune marker- he has some vitiligo and she just said well- my kids are healthy and we don't have any of those problems. But went on talking about how seriously ill her nephew is etc...like PANDAS isn't a big deal that we found out- she has not called or asked about it once since the diagnosis.

here is the kicker- Yesterday one week into my kids being dairy free- the rest of the family started eating ice cream in front of my kids. My DD is really a dairy addict and a Dr muscled tested her and said she can't tolerate it either- I have had my suspicions but we will run the peptide test on her too- for confirmation. She was hysterical- did any of the adults stop eating the ice cream in front of her- NO they just kept on while she was crying at the table. I ran to whole foods grabbed every milk alternative ice cream there is and let the kids have an ice cream tasting party- I can't believe how insensitive they are...I am still sad, upset angry and just plain old pissed off about it.

Sorry to hijack your post but I was going to vent at some point today too.

Brandy

[saidie10]

thank you guys so much for cheering me up this morning. this board is my new lifeline! i am waiting to hear from the neurologist about at least doing initial ASO and Anti-DNase B on my younger son who I am now worried about. i think she thinks I am crazy too we are also waiting to hear from Dr. T about a phone consult.

 

anyway, this was like writing that email or letter and being able to get it out without having to battle it out with the person who really needs to hear it. i also posted on my Facebook status something along the lines of this as well so I know my SIL will see it and she tells my MIL everything so I am confident it will get relayed! LOL my parents are very supportive, but DH's parents who are very supportive and amazing are definitely struggling with my new concerns over younger DS. he has always been my temper tantrum thrower but this is DIFFERENT AND SOMETHING IS NOT RIGHT! as you guys said so perfectly, MOM KNOWS BEST!!!!!

 

Family giving you grief, huh? Been there. Now I learn to share on a need to know basis. Too many insults have come my way.

[thereishope]

Don't let your kids stay overnight at her house. She'll feed them ice cream to try to prove you wrong. When I'm at family things, I just change the subject if they hint at strep or PANDAS or his "personality changes" or being "Monk". I just can't do it with them anymore.

 

 

BRAVO!!! I just feel like screaming right now after yesterday...My SIL is a F*****G B***H!!! My Mother's Day sucked!

When i said something about my ds stomach pains and we found out he can't digest milk proteins- she said my sisters stomach hurt her whole life and she is fine- first off her sister is NOT fine and I am a better mother than her parents are- MY SON CAN"T DIGEST MILK proteins. She says he can probably have some milk without it being a problem- when exactly did she get her M.D.?

I don't even want to get into what she said about me petitioning to hold my kids back in school next year- Pandas Ds is academically gifted but missed too much school this year and we don't know what our year is going to look like with PANDAS treatment etc... we want a less stresssful year for him. - my dd is just too young and needs a little more time to mature even though she is REALLY tall. I know in my heart just like you said that it is the right thing for my children. They are both summer birthday and most parents in the district start their kids ( especially boys ) late to give them advantage so they are both in class with kids a full year older than them.

 

 

Then when talking about PANDAS- she said my kids are just so healthy because they were in day care since they were 6 weeks old- first that is not even true ( my Mom watched her oldest until school got out and she went to daycare at 6 months...) not to my kids were in daycare exposed to everything too! We explained PANDAS is an autoimmune issue and that we know that my ds already had an autoimmune marker- he has some vitiligo and she just said well- my kids are healthy and we don't have any of those problems. But went on talking about how seriously ill her nephew is etc...like PANDAS isn't a big deal that we found out- she has not called or asked about it once since the diagnosis.

here is the kicker- Yesterday one week into my kids being dairy free- the rest of the family started eating ice cream in front of my kids. My DD is really a dairy addict and a Dr muscled tested her and said she can't tolerate it either- I have had my suspicions but we will run the peptide test on her too- for confirmation. She was hysterical- did any of the adults stop eating the ice cream in front of her- NO they just kept on while she was crying at the table. I ran to whole foods grabbed every milk alternative ice cream there is and let the kids have an ice cream tasting party- I can't believe how insensitive they are...I am still sad, upset angry and just plain old pissed off about it.

Sorry to hijack your post but I was going to vent at some point today too.

Brandy

Edited May 10, 2010 by Vickie

[saidie10]

you didn't hijack my post girl! i appreciate the input and glad i am not alone!!!! glad you had an opportunity to vent and so sorry your Mothers Day was crappy, and VERY sorry for why it was. people can be extremely insensitive!!!

 

BRAVO!!! I just feel like screaming right now after yesterday...My SIL is a F*****G B***H!!! My Mother's Day sucked!

When i said something about my ds stomach pains and we found out he can't digest milk proteins- she said my sisters stomach hurt her whole life and she is fine- first off her sister is NOT fine and I am a better mother than her parents are- MY SON CAN"T DIGEST MILK proteins. She says he can probably have some milk without it being a problem- when exactly did she get her M.D.?

I don't even want to get into what she said about me petitioning to hold my kids back in school next year- Pandas Ds is academically gifted but missed too much school this year and we don't know what our year is going to look like with PANDAS treatment etc... we want a less stresssful year for him. - my dd is just too young and needs a little more time to mature even though she is REALLY tall. I know in my heart just like you said that it is the right thing for my children. They are both summer birthday and most parents in the district start their kids ( especially boys ) late to give them advantage so they are both in class with kids a full year older than them.

 

 

Then when talking about PANDAS- she said my kids are just so healthy because they were in day care since they were 6 weeks old- first that is not even true ( my Mom watched her oldest until school got out and she went to daycare at 6 months...) not to my kids were in daycare exposed to everything too! We explained PANDAS is an autoimmune issue and that we know that my ds already had an autoimmune marker- he has some vitiligo and she just said well- my kids are healthy and we don't have any of those problems. But went on talking about how seriously ill her nephew is etc...like PANDAS isn't a big deal that we found out- she has not called or asked about it once since the diagnosis.

here is the kicker- Yesterday one week into my kids being dairy free- the rest of the family started eating ice cream in front of my kids. My DD is really a dairy addict and a Dr muscled tested her and said she can't tolerate it either- I have had my suspicions but we will run the peptide test on her too- for confirmation. She was hysterical- did any of the adults stop eating the ice cream in front of her- NO they just kept on while she was crying at the table. I ran to whole foods grabbed every milk alternative ice cream there is and let the kids have an ice cream tasting party- I can't believe how insensitive they are...I am still sad, upset angry and just plain old pissed off about it.

Sorry to hijack your post but I was going to vent at some point today too.

Brandy

[matis_mom]

Since we are venting about extended family... My situation is a bit different in that they do accept the fact that he is sick. But, I'm starting to get the "you are not doing enough" feel around here. We keep getting strep!!! I am doing all I can, we consulted an infectious disease doctor, we put everyone on abxs when we get it, etc, but it just keeps happening. I am walking such a fine line between being proactive and driving myself (and my kids) crazy over this!!!

I think I will adopt "share only on an as-needed basis" strategy too, as I'm getting no sympathy. Even my friends are starting to roll their eyes every time I tell them how worried I am about this whole thing.

At least you guys understand

 

Isabel

[poetmom]

oh yeah... oh yeah.... vent, vent, vent

and then your kid gets better - actually goes into remission... and then they REALLY start looking at you like you're nuts...like you made it all up. If it's easy for me to want to believe it was all a bad dream how much easier it must be for people who never wanted to believe it in the first place.

Surely, he was just shy and has grown out of it.

Surely, he was just ill-behaved and I FINALLY have him under control.

Surely, my sweet, happy, successful little boy - the one I nursed and co-slept with for 9 months who'd snuggle up next to me like an angel - was never a screaming, biting, insomniac who refused to be hugged...

the same 4yr child who spent 45 min of soccer practice never touching the ball, never stepping on the field, screaming like a banshee and refusing to leave... and as we walked to the car said, "Mom, I did good today, huh?" What could I do but ask, "Did you have fun today?" ... "Yeah! I played soccer!" ... so I told him with a broken heart, "You did great today."

 

But surely, I'm nuts. There was never anything wrong with my kid. Just because you look at him now and he seems perfectly normal, I am TOTALLY OVERREACTING when some random kid offers to let him drink after them and I leap a tall building to knock that drink to the ground before it touches his lips! I am TOTALLY OVERREACTING when his sister gets strep, his pediatrician is out of town, and I don't ask but TELL the acute care workers (who've never heard of PANDAS) they ARE going to put him on antibiotics too and "I don't care if his strep test if negative. Here's your choice: put him on antibiotics or sign a letter saying you're taking full responsibility for the neurological ramifications of an eventual positive test tomorrow."

I don't play nice anymore.

I am TOTALLY OVERREACTING when they announce on the news there is a rise in the number of strep cases in our area and I groan and my aunt rolls her eyes.

 

OR: I could be the best defense God gave my little boy ... just the mother bear he needs, because an ounce of prevention is worth... well, everything we stand to lose.

 

Wow. I didn't even know that was inside me. ;-) I feel so much better, ladies...

[Tenacity]

PANDAS parents understand the simple fact that the brain is a part of the body -- and therefore physically vulnerable to all kinds of injury and illness, just like the rest of the body. Society at large -- and this often includes friends and family, and even pediatric doctors with "brain" specialties in psychiatry and neurology -- just hasn't caught on yet. People accept that a child might need eye glasses, hearing aids, inhalers, insulin injections, wheel chairs, heart surgery, you name it -- but medical help for a kid with a disease of the brain, they can't seem to grasp. It is automatically assumed that "good" people should be able to control their brains. The reality is that our brains control us, and when they get sick, it is a frightening and dangerous business -- particularly since such illness is typically misinterpreted as "bad behavior," which is met with blame and rejection instead of understanding and assistance.

 

My experiences as the mother of a child suffering from a serious and debilitating brain disease have hurt me, enraged me, exhausted me, and scared me nearly to death -- but at the same time, they have intensified the love and the learning in my life. I dedicate myself to that love and learning -- and hope and pray with all my might that my child will get well. (And if I should take a little pleasure some day in a dose of vindication along with the healing -- well, surely there are worse sins!... Sometimes survival is the best revenge.)

[saidie10]

awesome, awesome, awesome!!!!!!!!!! you definitely needed that! these stories are so heartbreaking and my heart goes out to each of you

 

oh yeah... oh yeah.... vent, vent, vent

and then your kid gets better - actually goes into remission... and then they REALLY start looking at you like you're nuts...like you made it all up. If it's easy for me to want to believe it was all a bad dream how much easier it must be for people who never wanted to believe it in the first place.

Surely, he was just shy and has grown out of it.

Surely, he was just ill-behaved and I FINALLY have him under control.

Surely, my sweet, happy, successful little boy - the one I nursed and co-slept with for 9 months who'd snuggle up next to me like an angel - was never a screaming, biting, insomniac who refused to be hugged...

the same 4yr child who spent 45 min of soccer practice never touching the ball, never stepping on the field, screaming like a banshee and refusing to leave... and as we walked to the car said, "Mom, I did good today, huh?" What could I do but ask, "Did you have fun today?" ... "Yeah! I played soccer!" ... so I told him with a broken heart, "You did great today."

 

But surely, I'm nuts. There was never anything wrong with my kid. Just because you look at him now and he seems perfectly normal, I am TOTALLY OVERREACTING when some random kid offers to let him drink after them and I leap a tall building to knock that drink to the ground before it touches his lips! I am TOTALLY OVERREACTING when his sister gets strep, his pediatrician is out of town, and I don't ask but TELL the acute care workers (who've never heard of PANDAS) they ARE going to put him on antibiotics too and "I don't care if his strep test if negative. Here's your choice: put him on antibiotics or sign a letter saying you're taking full responsibility for the neurological ramifications of an eventual positive test tomorrow."

I don't play nice anymore.

I am TOTALLY OVERREACTING when they announce on the news there is a rise in the number of strep cases in our area and I groan and my aunt rolls her eyes.

 

OR: I could be the best defense God gave my little boy ... just the mother bear he needs, because an ounce of prevention is worth... well, everything we stand to lose.

 

Wow. I didn't even know that was inside me. ;-) I feel so much better, ladies...

[Stephanie2]

AMEN sister!! Why are family members so doubtful of our God-given motherly instincts. And not to mention they have no problem kicking a dog while she is down (meaning they blame us for the dysfunction of our children!). There is no more devoted mother than me (and all of you) yet I am treated like I am a failure as a mother. My only failure was walking into the pediatrician's office with blinders on and offering up my kids to be injected with multiple poisons. Now I pay the price...

 

Listen, you are a better woman than me. I was so pissed one night I typed out an email to my whole family (aunts, cousins, grandparents, you name it) and I vehemently defended myself, my children and my husband for all the judgement that is passed our way. I let them know that I will not put up with it and that if I have to choose between them and my children, well it is obvious who comes first...I know I made a name for myself and they are all going behind my back and saying that I have lost it. Well, I can not argue with that!!! Problem is they think that my kids have lost it b/c I have lost it, not the other way around. Some things will never change, unfortunately. My husband and I feel very isolated from our families right now. I'm not sure the damage can ever fully be undone. Just another side effect of this awful illness.

 

Stephanie

thanks for letting me vent. just writing and saying this to myself helps me cope right now.

 

"do not doubt the perseverance of a mother to fight for her child. i will not sit idle and assume that ANYTHING is just regular childhood antics or behavior when I believe in my heart there are underlying issues. I WILL NOT DISCIPLINE MY CHILDREN for something I am not sure they can control. I WILL SHOW SYMPATHY AND LOVE until i have the answers." ME - MOM, the one who gave birth to them, the PARENT, the one in charge of discipline and everything else! the one who does not stop thinking about the two loving boys who are just struggling right now.