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Vent about BM and her inability to follow through with medical stuff

Posted by on Mar. 31, 2013 at 1:29 AM
  • 11 Replies

SD is 12, she has a birth disorder that causes a slew of issues. BM walked out when SD was born, saw SD here and there, but never had visitation or was part of SD's life in a parental role. When SD was 2 1/2 BM took off with her, since there was no CO (yes, very dumb of DH) it was legal. After a long nasty custody battle BM was given majority residential time so long as she kept SD in therapy (the judge didn't want to disrupt SD's therapy again since it was already disrupted when BM took off with her).

Anyways, DH has contacted BM several times over the years with concerns about SD, and more specifically about things that are related to SD's disorder that would pop up and BM wouldn't know about. DH is very involved in the online community of other parents with the same disorder as SD (only about 70 people worldwide have the disorder).

DH now has custody (and has since June). He's been able to get a LOT of the issues he's originally tried to discuss with BM attended to. At this point we have proof that BM ignored at least 4 things that DH brought up to BM about SD. SD has skeletal issues related to her disorder (which casues skeletal defects). SD eyes were not being taken care of as they are supposed to. SD was not in regular physical therapy (she's now in weekly physical therapy), SD was not in occupational therapy (she's now in bi-weekly occupational therapy).

Now it appears that BM has messed up another area of SD's medical care all because she didn't want to take advice from DH or listen to/acknowledge DH's concerns about SD. This one could also turn into a pretty major situation. Apparently people with the same disorder as SD are WAY more likely to have spina bifida occulta (which can result in a tethered spinal cord). SD appears to have 4 of the 5 most common symptoms of tethered spinal cord. The only treatment is surgery on the lowest part of the spinal cord.

It's SO frustrating that a majority of the things DH and I have been doing for SD could (and really SHOULD) have been done YEARS before which would have been amazingly benficial for SD. Instead we are trying to make up for 7 years of medical and educational neglect... It just pisses me off and breaks my heart.

by on Mar. 31, 2013 at 1:29 AM
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Replies (1-10):
momof2ex1
by Ruby Member on Mar. 31, 2013 at 1:43 AM
Why does she have so much control over her medical if she doesn't have custody? I understand the frustration. I deal with someone that just ignores me to spite me and will allow my child to suffer just because he hates me that much. It really is ridiculous.
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Tinkerbellmama
by Platinum Member on Mar. 31, 2013 at 1:59 AM

She doesn't have the control anymore. But, she did up until June of last year. So, we've been playing catch up since them. And there's only so many things you can cram into a doctor's appointment, so we keep going back with questions about something or another. We are continuously finding out that this or that or another thing wasn't looked into, treated, or even acknowledged. 

Technically at this point she has joint legal custody, but she has ignored all of DH's attempts to contact her about anything. He sends an email with doctor's appointment dates and times and what will be discussed and then she can decide if she wants to reply to the email or show up to the appointment. Then DH sends another email after the appointment updating her to what was discussed. She's not once voiced her opinion about anything that DH and I are doing, other than to give her permission for me to take SD to appointments because it's hard for DH to get the time off (SD has about 7-8 appointments a month).


Quoting momof2ex1:

Why does she have so much control over her medical if she doesn't have custody? I understand the frustration. I deal with someone that just ignores me to spite me and will allow my child to suffer just because he hates me that much. It really is ridiculous.



lnr187
by on Mar. 31, 2013 at 11:51 AM

 that's awful! and will only hurt sd in the end. im glad you and dh are able to get the issues taken care of, even if it is later than it should have been.

bascha
by Member on Mar. 31, 2013 at 11:56 AM
Just because I'm kinda nosey, what is the name of her disorder? It sounds a lot like what my former MIL and SIL have, and I know that it's also one of those extremely rare ones. I truly hope that you're able to get your SD all the help she needs. You and your husband deserve a big digital hi five for fighting so hard and for so long for her!
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ramita
by Silver Member on Mar. 31, 2013 at 12:00 PM
This makes me thrilled for your SD that y'all have custody. Its really hard when a parent doesn't take something serious with the child just because that parent doesn't like the other parent. Its very immature!! My SS has health issues (nit nearly as serious as your SD) and he's mom never brought him to the dr. In fact when he was a baby she wouldn't even keep him on the right formula and when he was a little bigger she would feed him jalenpanos because she didn't 'want him to grow up like his dad'. Now we're dealing with drs and getting the process started for IBS (stepson is 7). All because she was trying to make sure he was nothing like his dad. I don't get how a parent can disregard what their child is dealing with just because of the other parent.
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Tinkerbellmama
by Platinum Member on Mar. 31, 2013 at 12:57 PM

Peters Plus Synrome

It presents at birth with clouded corneas, at birth she was legally blind (they guess she could see shadows). She had bi-lateral corneal transplants at 2 and 4 weeks of age. She had a feeding tube place (a g tube that goes into the stomach) around 1 month of age and she was on that until she was a year old. She started therapy for developmental delays at 5 months old. She was in therapy from 5 months to a little after 2, then BM took off with her (I came into her life at a year and a half old). Then she was out of therapy for about 6 months. Once she got back into therapy it was only for about 4 1/2 months. Then it was another 4 months or so before therapy was re-established. She had really inconsistent therapy from the time BM took off with her until DH finally was given custody (last June). SD has been in regular therapy since then.

Anyways, Peters Plus Syndrome also causes: Short limbed dwarfism, developmental delays, hydrocephalus, skeletal defects, kidney defects, low muscle tone, and heart defects.

SD has shortened arms (her legs are quite long), developmental delays (she's in 5th grade but will be 13 in June, she gets 160 minutes of one-on-one special education instruction each week, and she's in physical and occupational therapies), skeletal defects (her hips, femurs, fibula, and tibia are all turned outwards), heart defects (she has a slight heart murmur however it's very minor and her cardiologist isn't concerned, she'll see him again around 15/16 just to double check), and possible kidney issues (which is the current issue we're working on). We also just found out that several children with Peter's Plus Syndrome have also been diagnosed with Spina Bifida Occulta (which is a form of spina bifida where there is no exposed spinal sac, but still minor issues including tethered spinal cord, which SD has symptoms of).

DH has asked BM to look into the kidney issues, the skeletal issues, the educational issues, fine and gross motor skill issues, low muscle tone issues, and life skills issues and to monitor SD's eyes better (SD will always be at risk of the corneal transplants failing, she's also at a SUPER high risk of glaucoma and requires pressure checks every 3-6 months to monitor that, none of it was ever followed through on). BM has refused each step of the way. She's also refused to read any new information on Peter's Plus Syndrome. All of the information BM has is at least 10 years old. In the last 6 years there has been a TON of new research and information, which DH and I have stayed on top of. We've even contacted two leading experts in Peter's Plus Syndrome (one in Canada and one in England). We've also been able to contact several other parents of children with Peter's Plus Syndrome to get an idea of issues they've faced. The more we know, the scarier it is that BM didn't follow up with anything. There have been several children who have had to have an eye removed due to severe glaucoma, several are legally blind and had to be taught braile and to walk with a white cane.

SD's academic/educational issue were never addressed. She had 3 years of Kindergarten with no supportive services. BM then put her in a private school which is not required to have special education services (as they aren't federally funded) and again SD had NO supportive services. SD has a full IEP currently with accommodations for state testing, large projects, PE, and allows her 160 minutes a week of one on one special education support. At this point if she has issues and has to repeat a grade she will be unable to graduate high school regularly, she'll have to graduate with a special education diploma.

So, we're playing catch up with all of that, while also trying to plan out her future. As well, DD6 has special needs. Between SD and DD we have about 14 appointments a month. And we have to call SD's doctor Monday to schedule ANOTHER appointment to get a referral to a urologist and a neurologist to check her kidneys and check for the possibility of Spina Bifida Occulta.

Quoting bascha:

Just because I'm kinda nosey, what is the name of her disorder? It sounds a lot like what my former MIL and SIL have, and I know that it's also one of those extremely rare ones. I truly hope that you're able to get your SD all the help she needs. You and your husband deserve a big digital hi five for fighting so hard and for so long for her!



Tinkerbellmama
by Platinum Member on Mar. 31, 2013 at 1:00 PM

And to round it all off, because SD isn't a young child, there's a good chance that if it IS spinda bifida occulta that the nerve damage we're concerned about is permanate and will always be an issue.

bascha
by Member on Mar. 31, 2013 at 5:37 PM
Nope. That's a totally different condition. They have cleidocranial dysplasia. I'm pretty sure that was the name of it. Sounds like you've got your hands full. But, I suspect that you and your DH have what it takes to see it through. ;)


Quoting Tinkerbellmama:

Peters Plus Synrome

It presents at birth with clouded corneas, at birth she was legally blind (they guess she could see shadows). She had bi-lateral corneal transplants at 2 and 4 weeks of age. She had a feeding tube place (a g tube that goes into the stomach) around 1 month of age and she was on that until she was a year old. She started therapy for developmental delays at 5 months old. She was in therapy from 5 months to a little after 2, then BM took off with her (I came into her life at a year and a half old). Then she was out of therapy for about 6 months. Once she got back into therapy it was only for about 4 1/2 months. Then it was another 4 months or so before therapy was re-established. She had really inconsistent therapy from the time BM took off with her until DH finally was given custody (last June). SD has been in regular therapy since then.

Anyways, Peters Plus Syndrome also causes: Short limbed dwarfism, developmental delays, hydrocephalus, skeletal defects, kidney defects, low muscle tone, and heart defects.

SD has shortened arms (her legs are quite long), developmental delays (she's in 5th grade but will be 13 in June, she gets 160 minutes of one-on-one special education instruction each week, and she's in physical and occupational therapies), skeletal defects (her hips, femurs, fibula, and tibia are all turned outwards), heart defects (she has a slight heart murmur however it's very minor and her cardiologist isn't concerned, she'll see him again around 15/16 just to double check), and possible kidney issues (which is the current issue we're working on). We also just found out that several children with Peter's Plus Syndrome have also been diagnosed with Spina Bifida Occulta (which is a form of spina bifida where there is no exposed spinal sac, but still minor issues including tethered spinal cord, which SD has symptoms of).

DH has asked BM to look into the kidney issues, the skeletal issues, the educational issues, fine and gross motor skill issues, low muscle tone issues, and life skills issues and to monitor SD's eyes better (SD will always be at risk of the corneal transplants failing, she's also at a SUPER high risk of glaucoma and requires pressure checks every 3-6 months to monitor that, none of it was ever followed through on). BM has refused each step of the way. She's also refused to read any new information on Peter's Plus Syndrome. All of the information BM has is at least 10 years old. In the last 6 years there has been a TON of new research and information, which DH and I have stayed on top of. We've even contacted two leading experts in Peter's Plus Syndrome (one in Canada and one in England). We've also been able to contact several other parents of children with Peter's Plus Syndrome to get an idea of issues they've faced. The more we know, the scarier it is that BM didn't follow up with anything. There have been several children who have had to have an eye removed due to severe glaucoma, several are legally blind and had to be taught braile and to walk with a white cane.

SD's academic/educational issue were never addressed. She had 3 years of Kindergarten with no supportive services. BM then put her in a private school which is not required to have special education services (as they aren't federally funded) and again SD had NO supportive services. SD has a full IEP currently with accommodations for state testing, large projects, PE, and allows her 160 minutes a week of one on one special education support. At this point if she has issues and has to repeat a grade she will be unable to graduate high school regularly, she'll have to graduate with a special education diploma.

So, we're playing catch up with all of that, while also trying to plan out her future. As well, DD6 has special needs. Between SD and DD we have about 14 appointments a month. And we have to call SD's doctor Monday to schedule ANOTHER appointment to get a referral to a urologist and a neurologist to check her kidneys and check for the possibility of Spina Bifida Occulta.


Quoting bascha:

Just because I'm kinda nosey, what is the name of her disorder? It sounds a lot like what my former MIL and SIL have, and I know that it's also one of those extremely rare ones. I truly hope that you're able to get your SD all the help she needs. You and your husband deserve a big digital hi five for fighting so hard and for so long for her!





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Mommyof5247
by on Mar. 31, 2013 at 6:00 PM
2 moms liked this
Your SD's situation has made me sad & angry for you from the first time I read about it. I can understand how scary & stressful that would be as a parent, but to avoid treatment is appalling. To think some issues could have been avoided or at least delayed if she had kept up the treatment. :(

Also, only being mom when it suits her schedule is sad. Picking her up & leaving her with others because having a child with disabilities doesn't work for her. Ugh. I suppose it's easy for me to say for having healthy children, but you & your DH work hard & found support...SD is fortunate to have parents who love her & do what you can for her. No wonder she texts you whenever she's somewhere else!
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runmaryrun
by on Mar. 31, 2013 at 8:40 PM
2 moms liked this

Kudos to you and Dad!!  Putting the child first.  Hang in there!

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