Step difficult child's diagnosis
- Thread starter Hound dog
- Start date
dreamer
New Member
Im very sorry to hear of this diagnosis, yes, I am also familiar with it, my son had it as a rule out and it was due to symptom that becuz of difficult child, all our medical professionals kept insisting were in my head or due to my parenting---until we went to shriners.and due to several risk factors (Agent Orange exposure in dad, among a few other things) - that was the only reason I was FINALLY able to get Shriners to see my son.....and only reason they found my sons heterotopia.
Then when we were at RMH for my sons eye, several of the kids at RMH at that time were thre dure to chiari. And another friend of mine from interent, her child turned out to have chiari - found only as a young adult and only after years of asssorted diagnosis'es ranging from ADD, ADHD, bipolar, schizophrenia....go figure, when all was said and done her neuro decided ALL those previous symptoms were related to the chiari, due to the part of her brain that was entrapped in the bony opening.I believe the big chiari surgeons are in Wash State and Univ of Chicago? Nasty diagnosis. Im so sorry, and yes, there is something wrong to have 2 terminal kids. Many many hugs to you. and extending to stepdau and her family. Her and her family sound like troupers. I will keep all in my prayers.
Then when we were at RMH for my sons eye, several of the kids at RMH at that time were thre dure to chiari. And another friend of mine from interent, her child turned out to have chiari - found only as a young adult and only after years of asssorted diagnosis'es ranging from ADD, ADHD, bipolar, schizophrenia....go figure, when all was said and done her neuro decided ALL those previous symptoms were related to the chiari, due to the part of her brain that was entrapped in the bony opening.I believe the big chiari surgeons are in Wash State and Univ of Chicago? Nasty diagnosis. Im so sorry, and yes, there is something wrong to have 2 terminal kids. Many many hugs to you. and extending to stepdau and her family. Her and her family sound like troupers. I will keep all in my prayers.
dreamer
New Member
Please do not be hard on yourself....whether you could have seen whatever differently or not- it may not have mattered anyway.
Becuz my husband is so ill.....and he was ill here first...all our docs just insistsed difficult child was simply only the product of crummy parenting, parenting poor due to DHs illness. and DHs illness was at first considered mostly just that he was a lazy jerk. In the very end, husband illness wound up to be many many things.delayed onset combat PTSD with catatonia, early onset Alzheimers, lesions on all body organs due to Agent Orange....atherosclerosis etc etc etc and add in his deteriating spine etc and emphysema etc....in hindsight now his docs say "oh this all explains all that" Ha! That did us as new parents no good at all. SO we were dismissed, accused, blamed. we were crummy parents. No, we were bad parents, imagining things, seeking flaws, not adjusting to not haveing "Perfect child" sidetracked in our parenting becuz of husband......Munchausens.....and for a long time, even tho I knew, and even tho the signs were very obvios, noone would take us seriously re difficult child. By the time we had son...all our docs were so positive EVEYTHING here was bad parenting, and a lil ADHD thrown in etc.....the docs excused ALL my sons neuro symptoms, as a "bad child" It never made sense to me, his symptoms.....being called "bad child" He could not wallk, could not write or read or handle a ball, had NO fine motor control- and it was said that was becuz I ignored him or other stupid things. To compensate for "my bad parenting" WRAP sent PCAs, mentors, respite, instituted an in home daily behav mod program to be administered not by ME but by PCAs etc in our home.....and even THEN my son did not "get better" and then it was said I was sabotaging the program? And then it was said my son had bipolar like my difficult child.....and it was said both kids had learned their behaviors from my "lazy jerk husband"
When VA FINALLY truly began to examine and assess husband.....and they had concrete tangible proof of all his true medical issues, I ramped up my quest to FIND a doctor to seriously examine MY kids.....with their very obvious to me symptoms. Even then it was nearly impossible.....even with the very physical issues my son exhibited. Even with the very real risk factors present to support a variety of diagnosis'es in my kids.
And even after Shriners found my sons true health issues......4 neuros and 2 psychiatrists still fought and argued re the ramifications and consequences of his diagnosis, and even then STILL refused to do ANY objective tests or exams on my difficult child. Even with tangible hard evidence and strong family history.....to this day, no doctor would order any objective tests for my difficult child. The world was just so set on believing ALL my kids difficulties could be explained by crummy parenting, and they refused constantly to take any of the symptoms serious.
And even once we did know what we were really dealing with, so many of these things have not been being treated for a long time......treatment for so many of the issues is still often trial and error......and has good results and mixed results and..not so good results.
YOU are onnly human, your plate was full......and chiari is something that is very often NOT found.
But even if it was found earlier, sooner, it does not mean things would necessarily be better now.different, maybe, but - maybe not better. Hard to know for sure. Life IS a roll of the dice, and it is a cold sad hard fact. and yeah, it stinks. sometimes it stinks really really bad. And sure motherly people and mothers often do place undue blame on themself. WHew. My son and his eye? I blame myself still everytime I look at my sons beautiful face and see that awful ugly thing where his eye should be. "If only I....." "Why didn't I...." Well, the truth is.....there was no outward showing injury, no pain, and yes I DID take him to ER and ER told me he was FINE. A couple weeks ago difficult child was upset and she hurt me.....blamed me for the damage done to her by some of the psychiatric medications she was put on, way back before all the dangers were available for public knowledge. Yes, my difficult child does have some of the nastier, irreversible ugly ramifications from some of the psychiatric medications her docs put her on. *I* know I made observations, voiced concerns re side effects, BUT becuz my difficult child is older than some here.....our docs tended to not believe our complaints re some of the negative reactions to some of these medications, and instead of reducing doses or stopping medications, they INCREASED doses. - and when THAT did not work, then accused us of not giving her those medications.
Life is a roll of the dice. SOmetimes things do just happen. Even when our intentions are good, even when we are doing everything we can to be on top of things.
Timerlady posted about her recent trip to Mayo. She spoke of being a poster child for chicken pox vaccine, becuz SHE managed to get an extreme complicated complication from a bout with shingles? On the opposite end, I wound up nearly dead and quadriplegic for over 3 years BECUZ I DID get MY vaccinations. Sure, MY experience is also rare, as is TImerladys reaction to shingles.
Even if you had had some bizarre lightening bolt hit you telling you whatever about stepdau? It does not necessarily mean things would be better now than they are.
And even if YOU knew-----there is a possibillity you might not have been able to DO a lot about it, anyway.
PLEASE.do not go backwards and put undue blame on yourself. I have a very strong feeling you did fine then......
Im sure it all hurts inside your heart so much, ALL of it........but please do not stack more awful feelings on top that very likely do not belong on your plate.
Many many hugs to you. Some people sure do seem to get more than their share of hard times, difficult things.
THose kids sound so sweet! I bet you are so excited about the idea of seeing them!
Becuz my husband is so ill.....and he was ill here first...all our docs just insistsed difficult child was simply only the product of crummy parenting, parenting poor due to DHs illness. and DHs illness was at first considered mostly just that he was a lazy jerk. In the very end, husband illness wound up to be many many things.delayed onset combat PTSD with catatonia, early onset Alzheimers, lesions on all body organs due to Agent Orange....atherosclerosis etc etc etc and add in his deteriating spine etc and emphysema etc....in hindsight now his docs say "oh this all explains all that" Ha! That did us as new parents no good at all. SO we were dismissed, accused, blamed. we were crummy parents. No, we were bad parents, imagining things, seeking flaws, not adjusting to not haveing "Perfect child" sidetracked in our parenting becuz of husband......Munchausens.....and for a long time, even tho I knew, and even tho the signs were very obvios, noone would take us seriously re difficult child. By the time we had son...all our docs were so positive EVEYTHING here was bad parenting, and a lil ADHD thrown in etc.....the docs excused ALL my sons neuro symptoms, as a "bad child" It never made sense to me, his symptoms.....being called "bad child" He could not wallk, could not write or read or handle a ball, had NO fine motor control- and it was said that was becuz I ignored him or other stupid things. To compensate for "my bad parenting" WRAP sent PCAs, mentors, respite, instituted an in home daily behav mod program to be administered not by ME but by PCAs etc in our home.....and even THEN my son did not "get better" and then it was said I was sabotaging the program? And then it was said my son had bipolar like my difficult child.....and it was said both kids had learned their behaviors from my "lazy jerk husband"
When VA FINALLY truly began to examine and assess husband.....and they had concrete tangible proof of all his true medical issues, I ramped up my quest to FIND a doctor to seriously examine MY kids.....with their very obvious to me symptoms. Even then it was nearly impossible.....even with the very physical issues my son exhibited. Even with the very real risk factors present to support a variety of diagnosis'es in my kids.
And even after Shriners found my sons true health issues......4 neuros and 2 psychiatrists still fought and argued re the ramifications and consequences of his diagnosis, and even then STILL refused to do ANY objective tests or exams on my difficult child. Even with tangible hard evidence and strong family history.....to this day, no doctor would order any objective tests for my difficult child. The world was just so set on believing ALL my kids difficulties could be explained by crummy parenting, and they refused constantly to take any of the symptoms serious.
And even once we did know what we were really dealing with, so many of these things have not been being treated for a long time......treatment for so many of the issues is still often trial and error......and has good results and mixed results and..not so good results.
YOU are onnly human, your plate was full......and chiari is something that is very often NOT found.
But even if it was found earlier, sooner, it does not mean things would necessarily be better now.different, maybe, but - maybe not better. Hard to know for sure. Life IS a roll of the dice, and it is a cold sad hard fact. and yeah, it stinks. sometimes it stinks really really bad. And sure motherly people and mothers often do place undue blame on themself. WHew. My son and his eye? I blame myself still everytime I look at my sons beautiful face and see that awful ugly thing where his eye should be. "If only I....." "Why didn't I...." Well, the truth is.....there was no outward showing injury, no pain, and yes I DID take him to ER and ER told me he was FINE. A couple weeks ago difficult child was upset and she hurt me.....blamed me for the damage done to her by some of the psychiatric medications she was put on, way back before all the dangers were available for public knowledge. Yes, my difficult child does have some of the nastier, irreversible ugly ramifications from some of the psychiatric medications her docs put her on. *I* know I made observations, voiced concerns re side effects, BUT becuz my difficult child is older than some here.....our docs tended to not believe our complaints re some of the negative reactions to some of these medications, and instead of reducing doses or stopping medications, they INCREASED doses. - and when THAT did not work, then accused us of not giving her those medications.
Life is a roll of the dice. SOmetimes things do just happen. Even when our intentions are good, even when we are doing everything we can to be on top of things.
Timerlady posted about her recent trip to Mayo. She spoke of being a poster child for chicken pox vaccine, becuz SHE managed to get an extreme complicated complication from a bout with shingles? On the opposite end, I wound up nearly dead and quadriplegic for over 3 years BECUZ I DID get MY vaccinations. Sure, MY experience is also rare, as is TImerladys reaction to shingles.
Even if you had had some bizarre lightening bolt hit you telling you whatever about stepdau? It does not necessarily mean things would be better now than they are.
And even if YOU knew-----there is a possibillity you might not have been able to DO a lot about it, anyway.
PLEASE.do not go backwards and put undue blame on yourself. I have a very strong feeling you did fine then......
Im sure it all hurts inside your heart so much, ALL of it........but please do not stack more awful feelings on top that very likely do not belong on your plate.
Many many hugs to you. Some people sure do seem to get more than their share of hard times, difficult things.
THose kids sound so sweet! I bet you are so excited about the idea of seeing them!
Hound dog
Nana's are Beautiful
(((((hugs))))) dreamer. Thank you my friend for sharing your struggles with me. It truely means alot. And in my head I know all you said is true. I've let go of the guilt because it does no one any good. My Mom heart aches, still, for those 6 unecessarily wasted years. Nothing can be done about that either, except to make sure it doesn't happen again.
Interesting you mentioned the agent orange. husband swears he was exposed to it. I've never taken him seriously as husband also tends to make things up. But lately I've been wondering if perhaps he was......
Interesting you mentioned the agent orange. husband swears he was exposed to it. I've never taken him seriously as husband also tends to make things up. But lately I've been wondering if perhaps he was......
dreamer
New Member
Oh Daiseylover........HUGS.
I know the 6 lost years hurt...I wound up estranged from my family due to my family buying into the my husband was simply a lazy jerk.....and I stood beside my husband becuz prior to everything blowing up in our face with husband, he WAS absolutely the most wonderful man I have even still ever met. Then my mom got sick, (same time my sons eye injury occured) and mom was SO sick, and I was so devastated......I finally ignored my family protests of me being there. And yes, the lost years hurt so very bad. Yes, now you can do whatever you can to not permit such a thing from happening again.....but, you did not have a crystal ball......and it is so possible it was this chiari that caused some of those symptoms and problems etc 6 yrs ago etc. It IS sad...but go forward from now.
As for the Agent Orange? Whew, had I had ANY inkling BEFORE we had the kids and my 14 miscarriages along the way? Hmmmm.....certainly might have changed things. I had NO clue until AFTER our 3 kids were born. And of course there was so much coverup involved re AO. And.there still is. BUT spina bifida is one documented and compensable health issue in offspring of those exposed to AO. I do not think it takes a huge leap to wonder about chiari.....or......Travis' health issues of my difficult children health issues. ANd if you can access reports and observations etc from other countries and AO effects? It seems to me that AO can be a cause for a huge variety of problems. And becuz of how docs etc handled first my husband illnesses....and then my difficult children and then my sons......irregardless of tangible concrete evidences etc.......whew. People seem to prefer to simply blame all kinds of things on willful behaviors....or crummy parenting or whatever- and people want a quick fix cure for everything.....and then to get to the cure faster, will just make this jump from oh this kids behavior is a tad different--- toss some pills.and blame the parents and or kids......
OK, I am cynical. Yeah. I know I am. 20+ years of struggling all by myelf, coping day to day minute to minute with DHs issues, difficult children issues, sons issues, haveing a normal middle child (¿what's normal?) and my own health issues? Being blamed for so many weird things every step of the way....being dismissed, brushed off, ignored, etc..yeah, it has made me cynical. and it just never ceases to blow me away that here my husband was a Marine doing solo recon, 13 YEARS in Nam......and when his symptoms began docs tried to call it lazy jerk? Or when my son was haveing atypical seizures, and even PCAs could not get him to walk or toilet train, it was "crummy parenting"? and their "fix" for it was to want to give my son antipsychotics?? - it made me so cynical.
And then to LATER find more articles re AO? whew. it was hard, rough, caused me great anguish. Did the AO really destroy my husband mind, emotions body and soul? Cause us extreme severe financial hardship- cause my kids to grow with basically only a drooling psychotic dad? Cause me to lose MY family? Cause brain defects in my kids that caused THEM to no longer be able to be in public school education system? Overstress me and cause my Lupus and RA to take such a strong hold? Truth is due to my research, I DO now blame Agent Orange for most of these things. MY strong healthy intelligent husband was a healthy 18 yr old, and went to Nam and.......this is what we get back. Along with all those heartbreaking miscarriages, too.
BUT.......
The last couple years........I have been trying so hard........
Life has no gurantees and we cannot change the past. Life can be brutally unfair.......but, we have right now, today.
You have RIGHT NOW. Seize it. Make the best of it. Treasure it. I am so very very very happy you have this reconnection. If your husband cannot reconnect, well....might not be a lot you can do about it. My heart aches for you for all the difficulties..but my heart sings for joy for this reconnection.
I know the 6 lost years hurt...I wound up estranged from my family due to my family buying into the my husband was simply a lazy jerk.....and I stood beside my husband becuz prior to everything blowing up in our face with husband, he WAS absolutely the most wonderful man I have even still ever met. Then my mom got sick, (same time my sons eye injury occured) and mom was SO sick, and I was so devastated......I finally ignored my family protests of me being there. And yes, the lost years hurt so very bad. Yes, now you can do whatever you can to not permit such a thing from happening again.....but, you did not have a crystal ball......and it is so possible it was this chiari that caused some of those symptoms and problems etc 6 yrs ago etc. It IS sad...but go forward from now.
As for the Agent Orange? Whew, had I had ANY inkling BEFORE we had the kids and my 14 miscarriages along the way? Hmmmm.....certainly might have changed things. I had NO clue until AFTER our 3 kids were born. And of course there was so much coverup involved re AO. And.there still is. BUT spina bifida is one documented and compensable health issue in offspring of those exposed to AO. I do not think it takes a huge leap to wonder about chiari.....or......Travis' health issues of my difficult children health issues. ANd if you can access reports and observations etc from other countries and AO effects? It seems to me that AO can be a cause for a huge variety of problems. And becuz of how docs etc handled first my husband illnesses....and then my difficult children and then my sons......irregardless of tangible concrete evidences etc.......whew. People seem to prefer to simply blame all kinds of things on willful behaviors....or crummy parenting or whatever- and people want a quick fix cure for everything.....and then to get to the cure faster, will just make this jump from oh this kids behavior is a tad different--- toss some pills.and blame the parents and or kids......
OK, I am cynical. Yeah. I know I am. 20+ years of struggling all by myelf, coping day to day minute to minute with DHs issues, difficult children issues, sons issues, haveing a normal middle child (¿what's normal?) and my own health issues? Being blamed for so many weird things every step of the way....being dismissed, brushed off, ignored, etc..yeah, it has made me cynical. and it just never ceases to blow me away that here my husband was a Marine doing solo recon, 13 YEARS in Nam......and when his symptoms began docs tried to call it lazy jerk? Or when my son was haveing atypical seizures, and even PCAs could not get him to walk or toilet train, it was "crummy parenting"? and their "fix" for it was to want to give my son antipsychotics?? - it made me so cynical.
And then to LATER find more articles re AO? whew. it was hard, rough, caused me great anguish. Did the AO really destroy my husband mind, emotions body and soul? Cause us extreme severe financial hardship- cause my kids to grow with basically only a drooling psychotic dad? Cause me to lose MY family? Cause brain defects in my kids that caused THEM to no longer be able to be in public school education system? Overstress me and cause my Lupus and RA to take such a strong hold? Truth is due to my research, I DO now blame Agent Orange for most of these things. MY strong healthy intelligent husband was a healthy 18 yr old, and went to Nam and.......this is what we get back. Along with all those heartbreaking miscarriages, too.
BUT.......
The last couple years........I have been trying so hard........
Life has no gurantees and we cannot change the past. Life can be brutally unfair.......but, we have right now, today.
You have RIGHT NOW. Seize it. Make the best of it. Treasure it. I am so very very very happy you have this reconnection. If your husband cannot reconnect, well....might not be a lot you can do about it. My heart aches for you for all the difficulties..but my heart sings for joy for this reconnection.
