I'm so upset
-
Shane's Dad
- Posts: 26
- Joined: Tue Apr 30, 2002 5:38 pm
Re: I'm so upset
Hi Diane!
What part of Michigan are you from? I have a 3 year old son with right BPI, and we live in Macomb County, MI.
Thanks................Dave
What part of Michigan are you from? I have a 3 year old son with right BPI, and we live in Macomb County, MI.
Thanks................Dave
-
PinkFlamingo
- Posts: 30
- Joined: Wed Apr 13, 2005 5:10 pm
Re: I'm so upset
I'm 13 and have a moderate injury! I couldn't move my arm at all until I was four months old! I have had no surguries and have pretty good movement. I did therapy until age seven and I had a great time doing the therapy!(I stopped when we moved from Louisianna to Texas because I switched to sports)
Everything will be ok! I have tons of friends, play sports, and play the clairinet. I have never been teased about my arm (probably because I won't put up with it =)!) Having an injury doesn't stop me from having fun or doing anything that I want to do!
Brittney, 13 LOBPI
Everything will be ok! I have tons of friends, play sports, and play the clairinet. I have never been teased about my arm (probably because I won't put up with it =)!) Having an injury doesn't stop me from having fun or doing anything that I want to do!
Brittney, 13 LOBPI
where we got help
my daughter had absolutely no use of her right arm at birth then after 18 months of OT and PT her recovery was fantastic! Easter Seals and BCMH (bureau of children with medical Handicaps) paid for everything!!!
Check with your local Easter Seals chapter.
Best of luck
Keri
Check with your local Easter Seals chapter.
Best of luck
Keri
Re: I'm so upset
Hi, Tess. Well, I don't know if you can assume that the injury is permanent as early as 9 days old. I would think it might take 1-2 months to really determine that, but I don't know. Please keep in mind though that "permanent" does not necessarily mean severe. I don't know if you saw this reply from "PeggyUBPN" on another thread, so I'll copy it here: "That was the same--finger movement only-- for my son, Joel (he's 21 months older than Emma). His function did return within a months time, however. He does have slight residual affects in supination and slight winging." -- there you have it, it took a month for Joel's function to return. Is his BPI severe? No, but it could be classified as permanent b/c as Peggy mentioned, he does have slight residual effects. So, even if you are looking at a permanent injury (which isn't a prognosis I think that a Pediatrician can make with certainty at this point), it could still be mild and have very little impact on Tess.
I'll tell you though what you have to be grateful for -- I think that most parents are given the opposite information. Since most BPIs spontaneously recover, most drs. initially downplay the injury to parents telling them it'll likely heal, most recover spontaneously, etc. Most drs. give new parents false hope and then they discover reality at some point. Most drs. don't seem to want to acknowledge the minority of BPIs that don't recover. We were given false hope and it wasn't even by a Ped.; it was by a Ped. Neurologist and it was even after we'd had an MRI done.
I read that you've contacted early intervention, but are waiting. Do you have an appt. set for an initial eval. and are just waiting for that date to arrive or are they not even at that point yet? Since your dr. feels that Tess' injury is permanent, then maybe you could use that to your advantage and get him to call early intervention and get things moving quicker. I've found that appts. suddenly open up amazingly when a dr. calls to make an appt.
About the financial situation, did you print out the list on the link I posted earlier? (http://www.nichcy.org/stateshe/mi.htm) I see various contacts you can try (besides the EI b/c I assume that's the number you called):
"Special Education Funding for Children with Disabilities: Ages Birth Through 26"
"Programs for Children with Special Health Care Needs"
"State CHIP Program"
"Parent Training and Information Center (PTI)"
"Parent-To-Parent "
"John Cocciolone, CEO/President -- Easter Seals Michigan" (under "Other Disability Organizations")
I also found a couple other websites for Easter Seals in MI: http://mi.easterseals.com/site/PageServ ... E_homepage (Easter Seals MI) and http://mi.easterseals.com/ (Eastern Seals southeastern MI).
The key is to call all of these places and keep calling again and again if necessary, if you're not getting the results you want. Help is out there, but it usually takes some diligent effort to get it.
Regarding Shriners, I know that someone posted a link for you for the Chicago location. I would just like to suggest that before you go there, I'd post here asking if anyone has gone to that place and ask for their opinion. I'm not saying there's anything wrong with them, just that I don't recall ever reading about anyone here going there. I have read about a lot of experiences with Dr. Kozin at Shriner's in Philadephia. I know that's far from you, but there are programs out there for free airfare to medical appts.
About finding a pediatric therapist who accepts medicaid, have you tried he local children's hospital? Usually they accept medicaid. We didn't qualify for state medicaid / title XIX due to income, but we were able to get medicaid benefits another way. I went through Nicole's EI PT / service coordinator. She got me an application for medicaid, but I submitted it through our state DMR (Dept. of Mental Retardation) rather than through the DSS (Dept. of Social Svcs.). The reason we went through the DMR is b/c in our state, that's the organization that provides medical waiver. Basically what the medical waiver does is waives the income / assets requirement for obtaining medicaid. So we were able to get the state mediaid w/o having to meet the income / assets requirement. I'm quite sure you'd have to at least have done an initial evaluation for the EI program to determine if she qualifies for EI, then you could start the process of trying to get state medicaid / title XIX with an income waiver.
Try not to worry too much about what the future will bring. I know that's difficult.
~Tina, bpmom@comcast.net, Mom to Nicole (6 y.o. w/LBPI) & Joshua (1 y.o. w/NOBPI)
I'll tell you though what you have to be grateful for -- I think that most parents are given the opposite information. Since most BPIs spontaneously recover, most drs. initially downplay the injury to parents telling them it'll likely heal, most recover spontaneously, etc. Most drs. give new parents false hope and then they discover reality at some point. Most drs. don't seem to want to acknowledge the minority of BPIs that don't recover. We were given false hope and it wasn't even by a Ped.; it was by a Ped. Neurologist and it was even after we'd had an MRI done.
I read that you've contacted early intervention, but are waiting. Do you have an appt. set for an initial eval. and are just waiting for that date to arrive or are they not even at that point yet? Since your dr. feels that Tess' injury is permanent, then maybe you could use that to your advantage and get him to call early intervention and get things moving quicker. I've found that appts. suddenly open up amazingly when a dr. calls to make an appt.
About the financial situation, did you print out the list on the link I posted earlier? (http://www.nichcy.org/stateshe/mi.htm) I see various contacts you can try (besides the EI b/c I assume that's the number you called):
"Special Education Funding for Children with Disabilities: Ages Birth Through 26"
"Programs for Children with Special Health Care Needs"
"State CHIP Program"
"Parent Training and Information Center (PTI)"
"Parent-To-Parent "
"John Cocciolone, CEO/President -- Easter Seals Michigan" (under "Other Disability Organizations")
I also found a couple other websites for Easter Seals in MI: http://mi.easterseals.com/site/PageServ ... E_homepage (Easter Seals MI) and http://mi.easterseals.com/ (Eastern Seals southeastern MI).
The key is to call all of these places and keep calling again and again if necessary, if you're not getting the results you want. Help is out there, but it usually takes some diligent effort to get it.
Regarding Shriners, I know that someone posted a link for you for the Chicago location. I would just like to suggest that before you go there, I'd post here asking if anyone has gone to that place and ask for their opinion. I'm not saying there's anything wrong with them, just that I don't recall ever reading about anyone here going there. I have read about a lot of experiences with Dr. Kozin at Shriner's in Philadephia. I know that's far from you, but there are programs out there for free airfare to medical appts.
About finding a pediatric therapist who accepts medicaid, have you tried he local children's hospital? Usually they accept medicaid. We didn't qualify for state medicaid / title XIX due to income, but we were able to get medicaid benefits another way. I went through Nicole's EI PT / service coordinator. She got me an application for medicaid, but I submitted it through our state DMR (Dept. of Mental Retardation) rather than through the DSS (Dept. of Social Svcs.). The reason we went through the DMR is b/c in our state, that's the organization that provides medical waiver. Basically what the medical waiver does is waives the income / assets requirement for obtaining medicaid. So we were able to get the state mediaid w/o having to meet the income / assets requirement. I'm quite sure you'd have to at least have done an initial evaluation for the EI program to determine if she qualifies for EI, then you could start the process of trying to get state medicaid / title XIX with an income waiver.
Try not to worry too much about what the future will bring. I know that's difficult.
~Tina, bpmom@comcast.net, Mom to Nicole (6 y.o. w/LBPI) & Joshua (1 y.o. w/NOBPI)
Re: I'm so upset
Oops, I mean, Hi, Diane! -- well hi, to Tess too :O)
~Tina
~Tina
Re: I'm so upset
Diane, I hope you don't mind, but I sent you an email.
Mandie
Mandie
-
JessicasMom
- Posts: 214
- Joined: Thu Sep 18, 2003 4:59 pm
- Injury Description, Date, extent, surgical intervention etc: 10 year old Jessica born on 9/6/03 with a LOBPI.
Mostly recovered, no surgery, still has remaining functional deficits
including no active external rotation. - Location: The Woodlands, TX
Re: I'm so upset
Tess, pediatricians or family doctors just don't see this injury that often and are often under-educated about it. Don't be too upset by your doctor's statements, you need to see a BPI specialist AND keep in mind that you do have time! My Jessica did not have movement at 9 days old, she didn't move her arm at all (other than the wrist and finger movement she had at birth) until she was about 2 months old. Her neurologist (very experienced with BPI) called her injury "substantial" and was not that optomistic about her recovery. Even he was surprised at the recovery she made. Today, I have a happy, nearly fully recovered 22 month old with an almost unnoticeable injury. Even our pediatrician recently told us that he wouldn't know she had an injury unless he was specifically looking for it. Every child is different of course and every child's recovery is different, but there is hope so don't be so discouraged when your baby is so, so young! As you've heard, there are lots of state services for therapy and hospitals that even do the surgeries at no charge.
Email me if I can answer any questions for you! shellie1@patmedia.net
Hang in there!
Michelle
Email me if I can answer any questions for you! shellie1@patmedia.net
Hang in there!
Michelle
Re: I'm so upset
Tess's mom--hang in there. I know its fustrating. I didnt even know what my son had till he was 6 weeks old. My son (now almost 8 has a LOBPI) and the drs kept telling me his arm wasnt moving because of the broken collar bone, but I knew better and kept pressing them. My daughter (older than my son)had a broken collar bone as well and her arm moved so me and my husband kept pressing the drs and finally when he was six weeks old they put a label to it "erbs Palsy" and after that it was just research and therapy. We started into the Early intervention when he was 6 weeks old. They came to my house. You need to get into the early intervention and if that doesnt pan out, look into the free health coverage for kids. I think most states offer it. Ask you pediatrician or call your local Social Services office. Its a law I think that ALL children be offered health coverage. good luck.
Re: I'm so upset
Diane,
You are in such a terrible place... I remember those early days so well. Your doctor could still be wrong, but at this stage it's a matter of "hope for the best, but plan for the worst". If "assuming it is a permanent injury" means getting referred to a specialist then by all means that is the best way to go.
THE most horrible thing about this injury is the waiting. Your doctor is partly right... most completely temporary injuries would have recovered by now. You are moving beyond the recovery "time frame" for a pure "conduction block" injury - meaning that the nerve was only temporary disrupted but sustained no structural damage. But there are different degrees of structural damage... some recover fully and some do not. The improvements in function over the first month will tell you a lot about how serious the injury is. You are going to want someone knowledgeable tracking these improvements as they will help a lot in determining whether or not nerve graft surgery should be considered.
If finances are a consideration (or even if they aren't) I highly recommend Shriners Hospitals. We see Dr. Kozin in Philadelphia, but there are a few across the country. Shriners will also pay for travel expenses in cases of financial need, so please don't let the distance scare you. Also, Dr. Kozin is a very responsive and caring doctor, who responds to email very quickly. I also know that they (along with many other clinics) hold appointment spaces for cases of emergency. If you have access to a video camera, many doctors will also look at a video and give some feedback.
This waiting period is so hard. Please know that we all feel for you and we all understand what you are going through. Try to take care of your family and perhaps set aside some time each day where you just aren't going to think about the injury. A little denial every once in awhile can be a healthy thing...
Kate
You are in such a terrible place... I remember those early days so well. Your doctor could still be wrong, but at this stage it's a matter of "hope for the best, but plan for the worst". If "assuming it is a permanent injury" means getting referred to a specialist then by all means that is the best way to go.
THE most horrible thing about this injury is the waiting. Your doctor is partly right... most completely temporary injuries would have recovered by now. You are moving beyond the recovery "time frame" for a pure "conduction block" injury - meaning that the nerve was only temporary disrupted but sustained no structural damage. But there are different degrees of structural damage... some recover fully and some do not. The improvements in function over the first month will tell you a lot about how serious the injury is. You are going to want someone knowledgeable tracking these improvements as they will help a lot in determining whether or not nerve graft surgery should be considered.
If finances are a consideration (or even if they aren't) I highly recommend Shriners Hospitals. We see Dr. Kozin in Philadelphia, but there are a few across the country. Shriners will also pay for travel expenses in cases of financial need, so please don't let the distance scare you. Also, Dr. Kozin is a very responsive and caring doctor, who responds to email very quickly. I also know that they (along with many other clinics) hold appointment spaces for cases of emergency. If you have access to a video camera, many doctors will also look at a video and give some feedback.
This waiting period is so hard. Please know that we all feel for you and we all understand what you are going through. Try to take care of your family and perhaps set aside some time each day where you just aren't going to think about the injury. A little denial every once in awhile can be a healthy thing...
Kate
-
admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: I'm so upset
Hi Diane,
I think everyone has pretty much covered it with very good info here, but I still wanted to share my (long-winded) story.
My son Jason (lobpi, 1 year old this weekend!) had no movement at all at birth (although some of the nurses and doctors in the NICU and my very sweet, optimistic husband) swore there was some finger movement within the first week (but I didn't see it). By 5 weeks, we did see some tiny finger movement and luckily we were able to see Dr. Nath at a BPI picnic at that time and he confirmed it. Of course, I had been a wreck thinking/worrying about my baby's injury just like you.
Also, at the picnic I met a family with a baby a few months older than Jason. Their baby was recovering pretty well, but hadn't had any shoulder movement until 11 weeks. We also knew that the first critical point for surgery is 3-4 months (if no hand-to-mouth movement). Somehow these two "facts" gave me the "permission" for a little denial and relief from the constant staring at Jason's poor little arm looking for movement. Although I kept researching and learning about the injury, for the next 6 weeks, I just didn't worry so much about the daily movement (or not). I just focused on enjoying my new baby (really I was totally overwhelmed just with all the regular newborn stuff!).
Anyway, although all these injuries are different, amazingly, Jason also moved his arm at 11 weeks.
Anyway, a long story just to hope to help you relax a bit for the next few weeks. You are in the "wait and see" time and you just won't know yet the extent of the injury. So, do the ROM, keep researching, keep coming here for support, but don't obsess...just enjoy these precious early weeks. Looking back, I can't believe my little newborn is already a year old this weekend!
All the best to you,
Lexi
I think everyone has pretty much covered it with very good info here, but I still wanted to share my (long-winded) story.
My son Jason (lobpi, 1 year old this weekend!) had no movement at all at birth (although some of the nurses and doctors in the NICU and my very sweet, optimistic husband) swore there was some finger movement within the first week (but I didn't see it). By 5 weeks, we did see some tiny finger movement and luckily we were able to see Dr. Nath at a BPI picnic at that time and he confirmed it. Of course, I had been a wreck thinking/worrying about my baby's injury just like you.
Also, at the picnic I met a family with a baby a few months older than Jason. Their baby was recovering pretty well, but hadn't had any shoulder movement until 11 weeks. We also knew that the first critical point for surgery is 3-4 months (if no hand-to-mouth movement). Somehow these two "facts" gave me the "permission" for a little denial and relief from the constant staring at Jason's poor little arm looking for movement. Although I kept researching and learning about the injury, for the next 6 weeks, I just didn't worry so much about the daily movement (or not). I just focused on enjoying my new baby (really I was totally overwhelmed just with all the regular newborn stuff!).
Anyway, although all these injuries are different, amazingly, Jason also moved his arm at 11 weeks.
Anyway, a long story just to hope to help you relax a bit for the next few weeks. You are in the "wait and see" time and you just won't know yet the extent of the injury. So, do the ROM, keep researching, keep coming here for support, but don't obsess...just enjoy these precious early weeks. Looking back, I can't believe my little newborn is already a year old this weekend!
All the best to you,
Lexi
