My daughter is 14 months old born at 31 weeks. On the second day she was born a NICU nurse made a mistake and flushed her iv line with verconium(paralyzing agent) instead of saline solution and caused her to flatline and be brought back. She seemed fine after a few days(breathing on her own but still in hospital for 2 months) and the doctors said she would have no harmful effects so we didn't pursue any action. She is now 14 months and just started crawling(very stiff in hips), she will not bring herself to standing and when I try to put her in a standing posistion her legs stiffen and she will not bend them when supporting her weight. She also only puts her feet down in a tip toe or curled posistion and seems in pain. She cannot get herself into a sitting posistion from any other posistion(lying or crawling) unless I put her in one. Her twin brother is walking and very mobile. She is growing and eating well, but seems to have problems with her lower extremities, she never brought her feet up when lying on her back when she was an infant and had extreme back arching.

She has been diagnosed with a neurological condidtion, but they are unsure if it is cp. Do you think she sounds as if she might have it and so do you think the lack of oxygen she suffered during the incident with the nurse could be the reason?

I am very happy that she has been approved for the medical therapy program, I guess I just would like to know what the outcome may be so that I can be prepared. In input would be great.

Thanks,
Cristin

If I were you I would find a Shriner's Hospital or Cerbral Palsey Clinic close to you and take her there. You can't afford a misdiagnosis at this point. Go to someone who specializes in Cerbral Palsey and see what they think.
She is growing and needs some kind of therapy to help her now.
The cause is not as important as the treatment. Of course it will be nice to know what happened but what you need is help with a plan now to prevent further damage and to help her grow and be as functional as she can. Good Luck to you and feel free to ask me anything.
I raised a son who is now 34 years old with Cerbral Palsy so I have been around the block a few times.

My daughter is 14 months old born at 31 weeks. On the second day she was born a NICU nurse made a mistake and flushed her iv line with verconium(paralyzing agent) instead of saline solution and caused her to flatline and be brought back. She seemed fine after a few days(breathing on her own but still in hospital for 2 months) and the doctors said she would have no harmful effects so we didn't pursue any action. She is now 14 months and just started crawling(very stiff in hips), she will not bring herself to standing and when I try to put her in a standing posistion her legs stiffen and she will not bend them when supporting her weight. She also only puts her feet down in a tip toe or curled posistion and seems in pain. She cannot get herself into a sitting posistion from any other posistion(lying or crawling) unless I put her in one. Her twin brother is walking and very mobile. She is growing and eating well, but seems to have problems with her lower extremities, she never brought her feet up when lying on her back when she was an infant and had extreme back arching.

She has been diagnosed with a neurological condidtion, but they are unsure if it is cp. Do you think she sounds as if she might have it and so do you think the lack of oxygen she suffered during the incident with the nurse could be the reason?

I am very happy that she has been approved for the medical therapy program, I guess I just would like to know what the outcome may be so that I can be prepared. In input would be great.

Thanks,
Cristin

Cristin,

you know, you may still take legal action against the hospital. You can use all the resources you can get, to help with the future needs of your child. Too much oxygen was the cause of my CP...

edited a serious typo here... too much oxygen, not "lack of oxygen" was my cause. Either way, it's very serious to a newborn! Also, no matter what, don't leave your daughter out of your daily lives no matter what you do or, what her difficulties might be... Don't "wharehouse" her in any way, shape or form. I hope you never know what wharehousing means really!

I'd certainly be thinking about legal action too. Cerebral palsy is a funny term -- it refers to a very large pattern of symptoms that result from neurological problems. It's kind of difficult to define, I think. It's as much a description as a condition. I say this because no matter what the final clinical description is, you are dealing with serious health issues -- even if they don't apply the term CP to the condition. I'd take Musicmaker's point very seriously. If the hospital's mistake could have contributed to your child's condition, the hospital should try to make that right financially. Find an attorney and discuss the question with her or him.

I'd certainly be thinking about legal action too. Cerebral palsy is a funny term -- it refers to a very large pattern of symptoms that result from neurological problems. It's kind of difficult to define, I think. It's as much a description as a condition. I say this because no matter what the final clinical description is, you are dealing with serious health issues -- even if they don't apply the term CP to the condition. I'd take Musicmaker's point very seriously. If the hospital's mistake could have contributed to your child's condition, the hospital should try to make that right financially. Find an attorney and discuss the question with her or him.

I'm in the process of posting what CP is and what conditions are associated with it. I am not comfortable with CP becoming associated with conditions like MS or Muscular Distrophy. CP is a very different "animal", to be sure ;)

Thank you all for your help....Sierra is now 17 months old and still not walking. She is in therapy and we are currently investigating her "mishap" in the hospital with a lawyer. Her twin brother is so cute and already protective of her. He has been walking for some time now, but everytime he plays with her....he crawls with her on the ground...so cute. I am just taking it day by day and trying to get her all the help I can.

Cristin

Thank you all for your help....Sierra is now 17 months old and still not walking. She is in therapy and we are currently investigating her "mishap" in the hospital with a lawyer. Her twin brother is so cute and already protective of her. He has been walking for some time now, but everytime he plays with her....he crawls with her on the ground...so cute. I am just taking it day by day and trying to get her all the help I can.

Cristin

Hello Cristin,
I was doing the same thing at Sierra's age. A great crawler, but my legs just couldn't support me. I was 2 months early, and I was put in an incubator with pure oxygen for 6 weeks. I have Spastic Diplegia CP. I was diagnosed with CP at age 5. I'll be 54 in June. Sierra will be just fine. Just love her and encourage her to be herself...

cristin,
My name is Tammy and I have CP. The same thing happend to me when I was born. I spent my childhood at Shriners hospital if it wasn't for them I would not be walking. It took me 5 years to learn to walk, so don't give up.

Tammy

My daughter is 14 months old born at 31 weeks. On the second day she was born a NICU nurse made a mistake and flushed her iv line with verconium(paralyzing agent) instead of saline solution and caused her to flatline and be brought back. She seemed fine after a few days(breathing on her own but still in hospital for 2 months) and the doctors said she would have no harmful effects so we didn't pursue any action. She is now 14 months and just started crawling(very stiff in hips), she will not bring herself to standing and when I try to put her in a standing posistion her legs stiffen and she will not bend them when supporting her weight. She also only puts her feet down in a tip toe or curled posistion and seems in pain. She cannot get herself into a sitting posistion from any other posistion(lying or crawling) unless I put her in one. Her twin brother is walking and very mobile. She is growing and eating well, but seems to have problems with her lower extremities, she never brought her feet up when lying on her back when she was an infant and had extreme back arching.

She has been diagnosed with a neurological condidtion, but they are unsure if it is cp. Do you think she sounds as if she might have it and so do you think the lack of oxygen she suffered during the incident with the nurse could be the reason?

I am very happy that she has been approved for the medical therapy program, I guess I just would like to know what the outcome may be so that I can be prepared. In input would be great.

Thanks,
Cristin




Cristin:


In case you still check in here: I was wondering when your daughter started crawling? I still don't know if Alex has CP or not (or if I am just dealing w/delays due to his being a 25-weeker). He is 11 months old actual age and still cannot hold his trunk up off the floor. His gross motor skills seems to have stopped developing months ago even with physical therapy (that does not apply to fine motor, speech skills, language skills, etc). I am dying for him to turn 1, so we can just get the mri done, so his neuro can give me a better picture of what to expect.

Just curious. And we are already talking to a lawyer.

Angie

My son now 7 has the same thing and he is excelling in school, get going on the birth to three program, ask your local cp. clinic where it is. Also start with streaches which i know you are proberbly doing already.
Keep to a regular secdual sleeping the most important. My son just this week started having seizures and I believe it was due to a couple of late nights he was not able to sleep and he would not nap for me. I was also told instead of using tylanol for colds and feavers to use advil or motrin as they let the liver work on the body normaly but tylanol is hard on the liver. So I truly believe your child may live sizure free just try and stick to a a scedual. A night or two should not matter as it did not in the past for my son.
Good luck

My son now 7 has the same thing and he is excelling in school, get going on the birth to three program, ask your local cp. clinic where it is. Also start with streaches which i know you are proberbly doing already.
Keep to a regular secdual sleeping the most important. My son just this week started having seizures and I believe it was due to a couple of late nights he was not able to sleep and he would not nap for me. I was also told instead of using tylanol for colds and feavers to use advil or motrin as they let the liver work on the body normaly but tylanol is hard on the liver. So I truly believe your child may live sizure free just try and stick to a a scedual. A night or two should not matter as it did not in the past for my son.
Good luck

I will bring the tylemol vs motrin issue w/Alex's neuro the next time we see her, as that is news to me. I know about tylenol being hard on the liver if given too often (or too much), but the link to seizures is where I am confused. Alex is alredy getting PT 1x per week for "tone issues" through early intervention, on top of what we do with him the rest of the week. He has been seizure free, at least since he came home from the NICU, even w/being weaned from phenobarbitol. Now, I am just waiting for the mri we are supposed to have after he turns 1.
\
Angie

Ditto for the attorney...if this was the cause they need to provide financially for your child.
Otherwise take all the others advice and get the correct diagnosis if possible.