10 week baby with SB ( lots of questions)

[NTapia222]

Hi,

My son was born 12/22/09 moving from head to toe after a week he was relase from NICU we started seen that he was loosing movement on his right leg we called the neurosurgeon (who didn't want to do closure surgery when he was born) and she sent us for a MRI and told us to go back to see her, but I didn't felt right so I called another neurosurgeon for a second opinion.

Well, when we where at the appt. she told us that she had to do surgery right away because the longer she waited the more movement he was going to be loosing so she did surgery next next morning and put a shunt at the same time (looong surgery almost 7 hours) she told us that it the surgery was a succes and that she didn't cut any nerves or roots but at this point I don't know what she meant with success, because he is not moving his legs much and his left foot is very week which before the surgery it was the strong and (normal movement) leg.

questions:

1. is normal if you loose movement after surgery?
2. if it is, how long it will take to get it back?
3. Can a T12/L1 be able to walk if they had full movement before surgery?
4. Does having a shunt mean they will have learing problems?
5. if his brain was/is normal he should have any problems with learning?
6. Can I have hope to see my son walk and be independent?
7. Should I expect more health problem/orthopedic problems because of his lever?
8. If he had/has no problem with his bladder can he have it later?
9. according to early intervention he is right on track with everything else, his legs are the only problem so far.
10. can scoliosis be treated with bracing or he will have to have surgery?
11. is the scoliosis going to affect the change of him walking? ( for the balance thing)

Sorry for all the questions,

Noemi

[smoop]

What type of surgery was done on your child?

I'll try to answer some of your questions:
Yes, a child with SB can certainly have learning disabilities due to brain abnormalities. Common areas of weakness: attention, abstract reasoning, visual-perceptual, poor eye-hand coordination, poor visual motor integration, writing, and math. Yes, you should always have hope that your child will walk! When my daughter was born I was under the impression that her lesion was L1. However, around 8 months of age I was hearing from her specialists that it was probably lower (more like L3-4ish). No two people with SB are exactly alike so really it's a wait and see situation. My daughter, Analise, walks with long braces and crutches but she tires very easily and is quite slow. She will probably always use crutches and need a wheelchair for long distances. At some point in her life she may decide that she prefers to be a full-time wheelchair user. Only time can tell. I don't ever lose hope but I am realistic.

My daughter's urodynamics looked pretty good right from the get-go, all things considered. We didn't start cathing until she was 18 months old simply because she started getting recurrent UTIs. The cathing helped tremendously plus it keeps her dry in between cathing. There would be no way to get her out of diapers if she weren't cathed because she was always leaking urine. I do know of some SB children that aren't cathed but to me, that seems like the exception.

My daughter also has scoliosis at 26 degrees. She's pretty much had this since birth. The ortho said he does not like to do bracing. I asked what generally happens and he said that he's seen curves worsen, flip to the opposite side, and get better on it's own. So he was not able to give me any sort of prediction. For right now we're just monitoring it. Yes, I would think that scoliosis could affect walking but I'm not certain on that. Who knows, maybe she'll eventually need surgery for this.

Hope this helps. My daughter is only 3.5 years old so I'm not claiming to be a SB expert by any means.

[LisaJoy]

Hi, Noemi, welcome aboard!

I'm really shocked that your son's neurosurgeon didn't close his lesion right away -- immediate closure has been standard practice for about 25 years and was strongly advocated as early as the 1960s. Did s/he give you a reason?

There's no way to know just how your son is going to develop, but with a T12/L1 lesion, it is unlikely that he will be fully ambulatory or free from bladder & bowel problems. (Regarding bladder & bowel, almost everyone with sb has those problems, even those with the lowest lesions). HOWEVER, this does not mean that he will not be independent! If you raise him to be independent, he will be independent -- even if he is a wheelchair user.

As he gets older you'll need to have him checked for learning disabilities. Most kids with chiari & hydro are of normal intelligence, but even people with exceptional intelligence can have learning disabilities. As long as they are diagnosed early most kids can learn to compensate.

I know it is hard in these early days when you are just coming to terms wth things -- but the best thing you can do for your son is focus on the ways he is like all other babies and children and to focus on his abilities, not his disabilities. It will help him, and it will help you by taking your focus off of things that make you anxious.

Enjoy your baby!

[dahliafaolan]

1. is normal if you loose movement after surgery? Considering your doctor just mucked around with nerves and various other things of neurological importance, it's possible. I used to have some movement in my left leg, but I've lost it over the years.
2. if it is, how long it will take to get it back? It really depends on what happened. It may come back within a year, it may never come back. It all depends.
3. Can a T12/L1 be able to walk if they had full movement before surgery? It's possible. Spina Bifida is a very individualized defect. Two people who might have the same lesion level will have two very different levels of ability. I myself am a T-11 or T-12 and I have never been able to walk, but there are T-12/L-1s on here that can walk.
4. Does having a shunt mean they will have learing problems? No, it won't necessarily mean they will have learning problems. They are common with shunted children, but there are plenty with shunts that have no learning disabilities.
5. if his brain was/is normal he should have any problems with learning? That goes for everybody. A perfectly "normal" child can have learning disabilities.
6. Can I have hope to see my son walk and be independent? You can always have hope, but even if your son doesn't walk, he can still be independent. Walking is not the be all end all. A child in a wheelchair or with braces can do everything a walking child can do. They just have to do it a little bit differently.
7. Should I expect more health problem/orthopedic problems because of his lever? Well Spina Bifida kids do tend to have orthopedic problems, but if they haven't made themselves apparent yet, he probably won't. The only orthopedic problems I can think he would have later would be scoliosis or osteoporosis if he does not walk or stand later in life. As for other health problems, the only things I think you would have to concern yourself with would be bladder or bowel issues.
8. If he had/has no problem with his bladder can he have it later? Anything is possible, but just make sure you keep your doctors informed of any changes in his urinary behavior.
9. according to early intervention he is right on track with everything else, his legs are the only problem so far.
10. can scoliosis be treated with bracing or he will have to have surgery? I have heard different schools on this one. My doctors tried bracing for years with me, but it never worked. But with some kids, the bracing can work.
11. is the scoliosis going to affect the change of him walking? ( for the balance thing)
If severe scoliosis is left untreated, it can affect a lot more than his walking, but a doctor would definitely recommend surgery before it involved anything truly life threatening. But a child with scoliosis can walk. My aunt has had scoliosis all her life and she walks, but she has a slight limp because of it.

[Summer25]

Hi,

My son was born 12/22/09 moving from head to toe after a week he was relase from NICU we started seen that he was loosing movement on his right leg we called the neurosurgeon (who didn't want to do closure surgery when he was born) and she sent us for a MRI and told us to go back to see her, but I didn't felt right so I called another neurosurgeon for a second opinion.

Well, when we where at the appt. she told us that she had to do surgery right away because the longer she waited the more movement he was going to be loosing so she did surgery next next morning and put a shunt at the same time (looong surgery almost 7 hours) she told us that it the surgery was a succes and that she didn't cut any nerves or roots but at this point I don't know what she meant with success, because he is not moving his legs much and his left foot is very week which before the surgery it was the strong and (normal movement) leg.

questions:

1. is normal if you loose movement after surgery?
2. if it is, how long it will take to get it back?
3. Can a T12/L1 be able to walk if they had full movement before surgery?
4. Does having a shunt mean they will have learing problems?
5. if his brain was/is normal he should have any problems with learning?
6. Can I have hope to see my son walk and be independent?
7. Should I expect more health problem/orthopedic problems because of his lever?
8. If he had/has no problem with his bladder can he have it later?
9. according to early intervention he is right on track with everything else, his legs are the only problem so far.
10. can scoliosis be treated with bracing or he will have to have surgery?
11. is the scoliosis going to affect the change of him walking? ( for the balance thing)

Sorry for all the questions,

Noemi

1. A lot of us lose function at some point in life. So, it is very normal.
2. I never regainded any of it back from my tether cord surgery. So, it just depends on if the nerves were damaged. It can take up to a year for everything to come back anyways. So, you just never know what will happen.
3. Full movement is possible, but at that high not likely. I was a T10 at birth and had feeling from about the waist down. I walked with long leg braces, but only up until I was 12.
4. Having a shunt does not mean he will have learning problems. I graduated high school and I am now in college. A lot of us do just fine. Some people with sb have non verbal learning disorder.
5. Only time will tell.
6. He can be independent even if he doesn't walk. Independence is what you make it and is all about how you teach him.
7. Again only time will tell. No 2 of us with the same lesion are the same.
8. It sure can come later on. Some don't start cathing until they are in their teen years. I just got over kidney problems. So anything can happen.
9. Again only time will tell.
10. He can be treated with bracing. I had surgery at the age of 3. My friend had surgery at the age of 16. So, it just depends how bad it is and if it gets worse. The sooner the bracing starts the better.
11. It might. I'm not sure on that though.

I also don't get why the doctor waited to close his lesion. I am 25 and mine was closed as soon as I was born. A shunt was also placed. I don't see why a doctor now a days would want to risk infection and other complications.

[Dodger67]

Hi,

My son was born 12/22/09 moving from head to toe after a week he was relase from NICU we started seen that he was loosing movement on his right leg we called the neurosurgeon (who didn't want to do closure surgery when he was born) and she sent us for a MRI and told us to go back to see her, but I didn't felt right so I called another neurosurgeon for a second opinion.

Well, when we where at the appt. she told us that she had to do surgery right away because the longer she waited the more movement he was going to be loosing so she did surgery next next morning and put a shunt at the same time (looong surgery almost 7 hours) she told us that it the surgery was a succes and that she didn't cut any nerves or roots but at this point I don't know what she meant with success, because he is not moving his legs much and his left foot is very week which before the surgery it was the strong and (normal movement) leg.

questions:

1. is normal if you loose movement after surgery?
2. if it is, how long it will take to get it back?
3. Can a T12/L1 be able to walk if they had full movement before surgery?
4. Does having a shunt mean they will have learing problems?
5. if his brain was/is normal he should have any problems with learning?
6. Can I have hope to see my son walk and be independent?
7. Should I expect more health problem/orthopedic problems because of his lever?
8. If he had/has no problem with his bladder can he have it later?
9. according to early intervention he is right on track with everything else, his legs are the only problem so far.
10. can scoliosis be treated with bracing or he will have to have surgery?
11. is the scoliosis going to affect the change of him walking? ( for the balance thing)

Sorry for all the questions,

Noemi

Welcome :happy065:
Here's my take on your questions:

1. Yes.
2. Weeks, Months, Years, Never - its impossible to predict so you might as well just stop worrying about it.
3. Maybe - just wait & see.
4. No - Its not a necessary result but it is possible. Most people with learning problems don't have shunts.
5. Don't know - just wait & see.
6 This is actually two separate and unrelated questions so I'm going to answer them separately:
A. He might be a walker, though with his lesion level the odds are against him being a walker for life. Walking or not walking is not a big deal, wheelchairs have been around for about 500 years. (I stopped walking in my early teens - it became more effort than its worth - my lesion is at L1-2) There is one expression that makes me totally visciously angry - "wheelchair bound". Nobody is ever "bound" by their wheelchair. A wheelchair is an instrument of freedom - not bondage. Just try not having a wheelchair when you need it!
B. Will he be able to live independently - Yes! Yes! Yes! and making it happen is the most important duty you have as a parent of a child with a disability. You have to see to it that everything he needs to exist independently is made available to him; that his medical status is as good as possible at all times; that he gets the best possible education so that he can have the carreer he desires; that he is socialised to the fullest extent possible so that he may have a happy full life.
7. Yes - orthopeadic issues will be a part of his life. It is extremely rare for someone with a lesion at that level to not have issues.
8. At his age all babies are by definition incontinent - his condition will only become clearer later. Incontinence to some extent is practically the only thing all people with SB have in common. His condition can/will change throughout his life. There are many ways to manage incontinence - just take a look at the many threads on the topic here.
9. OK thats good.
10. Yes, maybe, it depends on the exact details of his scoliosis and how it changes as he grows/ages. Its just another wait & see.
11. Maybe - wait & see.

Why are you sorry about your questions?
Without questions like yours what would be the point of this forum?

Now take some time and read everything on this forum, it will give you a good look at what life with SB is like. (Short answer: Its pretty good overall)

Please try not to worry too much, particularly about stuff you can't do anything about.

[Theresa]

Read, read, and read some more! And everything is going to be okay...

[valmarie]

I was just browsing as I have a child with SB who is 8 weeks old. Our situations sound completely different...but from what I have been learning it's great to seek out realistic expectations but NOTHING can replace having hope. There are exceptions to EVERY rule and what the doctors and even other good intentioned people tell you is not set in stone. Not only that, but medical technology is always advancing and who knows what might be available for our kiddos 5-10 yrs from today! So much is wait and see...so take it day by day and deal with only what you see right now. Hear the doctors, take their advice but remember they are people basing their prognosis off the "norm" which takes the average of the ones that excel and the ones that don't. Don't ever lose your hope..and enjoy that babe of yours. :):happy065:

[Gymp]

I was just browsing as I have a child with SB who is 8 weeks old. Our situations sound completely different...but from what I have been learning it's great to seek out realistic expectations but NOTHING can replace having hope. There are exceptions to EVERY rule and what the doctors and even other good intentioned people tell you is not set in stone. Not only that, but medical technology is always advancing and who knows what might be available for our kiddos 5-10 yrs from today! So much is wait and see...so take it day by day and deal with only what you see right now. Hear the doctors, take their advice but remember they are people basing their prognosis off the "norm" which takes the average of the ones that excel and the ones that don't. Don't ever lose your hope..and enjoy that babe of yours.

Well said...

Gymp

[monica]

That was said beautifully!!!