family sb war advice

[Aundrea]

Both my brother and i have children with Spina Bifida and hydrocephalus. My nephew is 7 and my daughter is 6 months. My sister n law and i seem to be at war on how to care for my daughter she thinks i should take a hands off approach with Emily like she did with Gaige but i am a very involved person. I dont like the idea of waiting for Emily to show developmental delays to get help and my sister in law thinks im crazy for having a physical therapist come to my house and work with my 6 month old who at this point has no delays. I keep saying maybe she is not delayed because of the therapy and my sister in law thinks if its not broke dont fix it. So my question is which approach did you take. Were you very proactive on therapy and developmental milestones or did you just wait to see what happened before getting help.

[mg357]

i would chose the physical therapy

[Kari]

I'm the very proactive type as well.

[Makennasmom]

We started pt and ot at around 5 months. (I was already doing the massages that the pt had tought us in the hospital) They did pt and ot in the NICU so I wanted to get started as soon as we could get it set up. She has been going to pt one hour each week and going to ot one hour each week also. I believe in being proactive as well.

[jellolegs23]

As an adult with Spina bifida, I would say to the mothers on this site to be proactive with your kids in helping them to become more independent but also back off a little bit as they become independent themselves whether its with walking, cathing, bowel management, making small decisions, etc. I believe a healthy balance like that is necessary in cultivating independence, making safe decisions for themselves as they get older, self-esteem, and happy children/adults.

You want to show love and support but also balance it with letting them do it themselves when they are toddlers or older. You sound like you are doing a great job with your daughter! Keep up the great work! :sign0021:

[janjanwhit]

proactive before he met his milestones and after he did i encouraged him but let him do it himself. As long as the therapy is not really painful or anything i would keep up with it. there is no negatives with doing therapy so why wouldnt you do it!

[babybsmom]

I would say go with the PT. I am very much like you, I do not want to wait for the delay. As long as it is not hurting her and you allow her to develop her own independence, then I would say KEEP IT UP! Good luck!

[Ziggy]

keep it up, and tell her that that's the beauty of being a mom. You get to make decisions about your own kids and she can make decisions about hers.

[laurabeth]

Caleb has had a PT since he was born and will be getting an OT soon, and he has hit all of his milestones so far :) We are very proactive as well

[jveprek]

You should absolutely be proactive. You would be doing your child a diservice if you were not. Helping them achieve the most they can and helping them be the strongest they can will help so much in life.

[dahliafaolan]

My mom started me off with PT for sure from the age of 6 months.

[LillyPie]

My daughter started PT soon after she left the hospital, so about 4 weeks old I would say. I'm with you. Why wait until there is a delay to get help. If a PT has done an eval and thinks it's beneficial then you're doing the right thing. You are the parent and know what's best for your baby. Someone else might not agree but OH WELL!

[angel]

I am not the over protective type at all and neither was my mother. I never had therapy other than when we went to SB clinics. It wasn't because of my mother since i was "mobile" with my crutches and could get around so well it was determined that i didn't need it.
The therapy may or may not be helping but that doesn't matter. It is definatly not hurting anything so why not continue with it if that is what you want to do.
When my son was younger i was told (for years) i was waisting my time encouraging my son to potty train (he has SBO and a neurogenic bladder) I know because i have SB myself what it is all about. The reason i started with my son is because he knew when he had to go potty some of the time. I didn't see any reason not to take it as far as possible and see what happened. I didn't force him but he didn't know he wasnt' supposed to be able to so he just tried anyway. It took years and years of accidents but he is now a teenager and does not have them anymore. He still has a neurogenic bladder and always will but in his case he had just enough control that he could do it. The only thing now is he has to go more often than most kids his age and there is no such word as wait because he can't wait much more than a few minutes his bladder just won't allow it.
What I am trying to say is I did what I felt i was doing the right thing for my child and that is what matters.

Angel

[bcain]

My SB clinic thought she was doing so great that it was left up to me to decide if I wanted early intervention or not. My neighbor is a PT she had shown me particular way to massage her feet and legs, and she encouraged me to do EI, because during infancy the nerves are still growing and more intervention is better to develop these connections. I wish I had started earlier. Most of the EI therapists were surprised that we weren't referred immediately after discharge from the hospital. I was advised by a clinic therapist to stretch her feet so she could point her toes, but my neighbor PT, said no. It is a problem to have foot drop, better to stimulate an upward movement for walking. She had me rub the toes on top up towards the ankle. It would cause a reflex of the toes moving. She didn't have much movement in her feet at first, but she slowly developed it more and more over time. She can wiggle her toes all at once together. No individual movement of big toe yet. She's 3. Go for it I say. No regrets here, and the therapists are so good at sharing their knowledge.

[hilmom]

When you have a child with a diagnosis like Spina Bifida, you don't wait to see if there will be issues with gross motor development. You must intervene early on, the earlier the better. It only gets harder if you wait. Fine Motor and Speech would be things you can "wait and see" about but not gross motor! My daughter was moving her legs and ankles and even her toes at a month old but at 10 months old now still can't bear weight at all. She isn't rolling on her own. She is sitting pretty well, though needs support when tired and will occasionally fall over. She receives PT 2x a week. - You are absolutely doing the right thing. Beyond that, no one should tell you how to raise your child, even family, when you are CLEARLY raising her well. Stand your ground and just smile when she questions you. :)

[hilmom]

Also, like "bcain" I started my daughter in PT later than I wanted. Hannah didn't start till 5 months old. Our Myelo clinic PT told us at 2 months old that she didn't need therapy and that we'd see her back there in 4 months. At the time, I was relieved that she thought Hannah looked so good and I was so overwhelmed with everything else (we were having trouble nursing at the time, and I was still nervous about all the cathing, etc). At about 3 months old I knew that she need PT regardless of what the therapist said so I called and they had a waiting list. Nice. Then Hannah developed a bad case of acid reflux that took us weeks to realize what it was (we had shunt scans done and were scheduled for MRI worried about tethered cord but then we tried reflux meds on a hunch and she was back to normal.) Long story short, we got started much later than I wanted. So - again, getting started as early as you can is best in my opinion.

[n3rdchik]

Get the PT! (At least in the US, it is covered by the State.) Our PT has come 1 every two weeks since Saga was 6 months. Mostly, she has given us great advice and ideas to encourage movements and discourage bad habits in the form of fun games.

My husband and I are very hippocratic about the SB - "First do no harm" and what are the worst/best case scenarios:

For PT - It doesn't hurt, and worst case, you and your daughter are out a few hours a week. Best case, you won't be behind and you'll have great resources.

[excitedmom]

I am very proactive as well. My daughter has her physical and developmental therapy every week. She is 6 months old. It isn't like her getting therapy can hurt your child any, so I don't know why your SIL would be so opposed to the idea. After all, if anything it would just help your child :)

[cadon's mum]

Anything you can do to help your child be the best that they can be, can only be a positive thing, keep it up!!