Anyone with a child with Down Syndrome or "similar" issue?

[Pamela H in Texas]

I was hoping someone could give us some links and information.

 

We are being sent to a specialist in Dallas. I just want to be sure to be informed as well as I'm scared of Monkey getting hurt. I'm hoping some information will help us balance treating her as a porcelain doll vs as a typical rough and tumble 11month old.

 

Our main concern at this point (because it is the one thing we really know) is her joints. For example, is it safe to start physical therapy (there is an opening the beginning of June)? What about diaper changes, holding her on our hips, encouraging weight bearing?

 

Thanks for any help you can give.

[Ottakee]

I would also post on the special needs board. There are some parents there that could really help but they might not have the time to visit this board.

 

I don't know much about the joints with DS other than they had to be x-rayed and cleared by a doctor before horse back riding--not much help at 11 months old though.

 

I think a specialist would be great though to tell you what to do, not to do, etc. My gut feeling though as the parent of 3 special needs kids is to treat her as normally as possible. She might have DS but first and foremost, she is an 11 month old baby. Unless there are medical reasons for doing/not doing certain things, I would continue on as you would with any other child.

 

My son has an amazing friend with DS. She reads and writes very well, works in a day care center, etc. We know quite a few people with DS through Special Olympics and my kids' school programs. The ones that were challenged the most and treated as normally as possible have done the best.

[Pamela H in Texas]

I'm just worried in the inbetween. No doubt the specialist will be able to tell us what exactly Monkey has as well as what to do (and what not to do). I just didn't think it was going to take us two weeks to get the referral. And in the meantime, we are doing some things I know are no-nos (but don't know what to do otherwise) and probably don't know many more things we shouldn't do.

 

But we absolutely will give her our best and expect her best. We love her so much. She is absolutely awesome. We did get speech therapy started and the physical therapy should start in June. I just want the best for her. I wish we already had so many answers and knew exactly what we're supposed to be doing (and not doing).

[Pamela H in Texas]

I'm just worried in the inbetween. No doubt the specialist will be able to tell us what exactly Monkey has as well as what to do (and what not to do). I just didn't think it was going to take us two weeks to get the referral. And in the meantime, we are doing some things I know are no-nos (but don't know what to do otherwise) and probably don't know many more things we shouldn't do.

 

But we absolutely will give her our best and expect her best. We love her so much. She is absolutely awesome. We did get speech therapy started and the physical therapy should start in June. I just want the best for her. I wish we already had so many answers and knew exactly what we're supposed to be doing (and not doing).

[dtsmamtj]

We treat our daughter just like the rest of our children. I had been warned about the hips of DS children but the activity she liked most was one that was not recommended - the Johnny Jump-Up. This activity made her legs stronger making walking easier. I used the Woodbine books and no other outside therapy. We also carried her in a backpack and on our hips. Our daughter is very physically active.

[Ali in OR]

My special needs kid was in Early Intervention starting at 6 months old. She does not have DS, but another little baby the same age was in EI with her and he did have Downs. The EI sessions included PT and OT. I don't think there would be any problem with going to a physical therapist. They will know just what to do with her. The only warning I have heard is to not let her attempt forward rolls until her neck has been checked for the instability (can't remember the exact name) that some DS kids have--at 11 months old, I don't think you need to worry about that yet! I would go ahead with the things you've mentioned like weight bearing.

[celticmom]

I think that there is some information about down's syndrome babies in the Sears' Baby Book but I do not remember how in depth it is. I do know that one of their children has Down's.

[Cortana]

Our oldest does have down syndrome and we didn't do anything differently with him than we did with our other two kiddos. He did have very flexible joints (he could sit on the floor and bend at the waist and lay his chest flat on the floor). I carried him on my hips, he played in an exersaucer, when he wanted to push up and stand we let him go for it. :) As for diaper changes, didn't do anything special, just wiped his bum and put him in a clean diaper. ;)

 

I would not hesitate to start physical therapy, our son started somewhere between 4 and 6 mos. The therapist will know what areas to be careful in and such, that's their job to be aware of the different limitations of different conditions. They will also teach what exercises to do to encourage proper muscle development and such.

 

Our son does have the neck instability issue (and I wish I could remember what it's called but I can't). He does have some restrictions from his dr at Shriner's (no trampoline, no tackle football, no gymnastics, no riding dirt bikes, no excessively rough play, always wear a bike helmet, no jumping off his bed) but his dr did say he's a typical boy and he's going to be rough and tumble and there's only so much you can do about that. The neck instability issue is actually very common in all kids, the problem is that the traditional treatment for it doesn't work for kids with down syndrome (typically if the issue doesn't resolve itself by a certain age then neck fusion surgery would be done, but in kids with down syndrome for some reason the surgery doesn't work). Special Olympics does require a form from a dr stating whether the child has the neck instability issue and if they are clear to participate before they are allowed to compete.

 

Bottom line, she's really no different than any other 11mo if she does have down syndrome, she'll just be a bit slower reaching her milestones. :) That's been our experience anyway.

[MyLittleWonders]

Echoing what everyone else has said ... we treat our daughter just like the boys. She's pretty "rough and tumble" with them (or anyone sitting on the ground - watch out and cover your hair!). She has loose joints (can also sit in splits and put her head flat on the floor), but they have tightened up a bit as she has gotten older. Here's a small post with pictures of one of her therapy days when she was 11 months old (well, almost 11 months). We have an OT who comes 2x a month; everything else we do ourselves. (That's all our state pays for.) We have always held her at the hip (some say no because it splays the hips). She goes in an exersaucer for short stints each day (well, not very much at all anymore; mostly between the age of about 8 and 13ish months, once she had good head/trunk control until she became pretty fairly mobile), and has always spent a lot of time on the floor or in our arms (and not much in between).

[Momof3littles]

Agree on atlanto axial instability being a concern for some children w/ DS but you would likely not encounter too many situations where that would apply at her age. It may be more of an issue as she gets older.

 

A pediatric physical therapist is going to be very well aware of joint issues and so forth. Not an issue at all. If you have concerns and think she'll qualify for an EI eval, I'd start that ASAP.

 

I would avoid saucers, walkers, jumpers, particularly for any child at risk of developmental delays.

[Donna]

As a pediatric physical therapist, I have worked with a number of children diagnosed with DS many from as early as 2-4 months depending on when they are sent to Early Intervention. We are trained to know about joint and other issues and a good therapist will be able to provide you with a wealth of information, activities, and suggestions for helping a baby reach their potential.

[Ottakee]

I'm just worried in the inbetween. No doubt the specialist will be able to tell us what exactly Monkey has as well as what to do (and what not to do). ).

 

Is it unsure if she has DS or not?

 

Is this a foster baby? Just curious as we have done foster care and got many special needs babies in over the years.