[rbear4]

My friend just gave birth on Saturday to a little girl with downs. We knew in advance it was a possibility. She also has other children with special needs (2 with ADHD, 1 ADHD, gifted and learning disabled, and 1 bipolar, severe learning disabled, tourettes, etc) but this is a new experience having a child born with a diagnosis right away and the medical issues that go with. They are still doing all the tests. She didn't do well on her hearing screening but that may be because it has been a rough couple days on the baby. They are having a hard time getting a blood sample because the blood is clotting too fast and she has to go for a heart test.

I am trying to do some research to help her out so anything you can tell me about the newborn experiences with DS would be great.

I know she will likely get early intervention started up soon. I used to work EI with toddlers and most of it was done in the home. I am assuming that is still the case and she was relieved to hear that. She thought she would be carting the baby to lots of appointments.

About when do they start with those types of services? Do they wait a few months or start right away? Is there extra medical concerns and lots of doctor appointments she will have to go to? Typically what types of specialists are involved (for example with my ASD kids we see neurologist, developmental ped, clinical psychologist, etc). Also, any good references to websites or books would be appreciated.

She is doing really well. She says on one hand it is a real relief knowing what she has to deal with right away rather than the constant worry she had with her son with the BP, LD's, etc. She is also glad for the supports that are being put in place right away, but needless to say she is concerned.

Also, welcome to the world baby E., She is sweet, wonderful, sleepyhead with chubby cheeks and the cutest tuft of hair. I got to hold her for an hour this morning and babysit while mom took a shower. I am already in love. But that happens with me with every newborn, lol.

 

[Individuation]

Your friend should get in touch with the National Down Syndrome Society (NDSS) as soon as possible--they're great.

We have a close friend who has a daughter with Downs, and I worked with Down Syndrome children and adolescents when I was a teenager. Apparently EI is making a big difference in cognitive skills.

Welcome to the little one, and best wishes to your friend!

 

[rbear4]

Thank you Hala.

I went to the website and got loads of great info to take to the mom. The baby ended up with a significant heart defect that will need to be repaired and that website answered alot of questions about medical issues they are seeing with the baby already.

 

[perstephone]

I have a 4 month old son with Down syndrome- we found out prenatally. Our EI services are in our home, and we had the opportunity to start immediately, although we really only got into the system last month. I'd suggest calling to set up the initial evaluation relatively quickly so they're set up for any services they need when they're ready (but at the same time, we put it off for a while because I wasn't quite ready to be 'in the system' yet)
A site that I just love is DownSyn- they have pretty active forums, which are helpful (to me, at least).
We see a regular pedi, and he's able to handle our needs. If we had other specialists involved, I'd probably just have all the records sent to our pedi, and let him kind of 'captain' the herd of doctors.
Here's a list of screening guidelines, just to have an idea of what extra testing is recommended: http://www.ds-health.com/recordsheet1.htm
The heart defect is common (I think around 50% of babies with DS have some form of cardio issue), but still scary. Lots of parents over at DownSyn have gone through the heart surgery, so that's probably a good place to ask about that- we didn't go down that path.
My son was sleepy in those early days- he was happier to sleep through feeds, so we had to be a little aggressive in making sure he was eating every 2 hours instead of letting him tell us when he was hungry. We were able to breastfeed successfully, so it IS possible, but sometimes with the heart issues and the mouth traits (high palate, small mouth/large tongue, weak suck, low muscle tone in the jaw, etc) it's extra hard. La Leche League has a FAQ.
I hope some of this is helpful, and I'm happy to tell you more, if you're interested! Just ask!
Congrats to the family-
stephanie

 

[mama2graham]

The pps have given you/your friend a lot of great stuff to go on! You had asked about books, and I would recommend _Babies with Down Syndrome_. It's a good general reference.

Our services for our 7 mo ds are also in our home, and I do think that's more the trend these days. The OT kinds of activities are pretty simple to start, but it's great having someone else help you take notice of things along the way (esp. for a first-time mom like me!).

I second the downsyn.com rec. Nice folks there, and lots of great kids.

I'm happy to email with anyone about this. Just pm if interested. All good wishes and my congrats to the family too!

Sara

 

[rbear4]

Thank you both.

Mom and baby were coming home today. I plan on going by hopefully tomorrow and check in on them. I will ask if she would like an email and give her the references. I don't want to overwhelm her too quickly though so I am collecting info.

However, this is one tough mama already. Like I mentioned earlier (I think) she has other children with special needs so this road is not a new one too her. I think she will be ready to jump on the band wagon soon.

Thanks for the book reference. I may pick it up for her as a gift.

 

[jondee0]

The other posters have already given you some good links and suggestions. A couple I would add are the breastfeeding links at kellymom.com( http://www.kellymom.com/babyconcerns/down-syndrome.html ), and the forums at the Trisomy 21 online website ( http://www.trisomy21-online.com ).

We started EI with my son within a couple of months of his birth. Services are mandated to be provided in "natural environments" (any environment in which children without disabilities would normally be, so for a wee baby, this would be the home), and may include physical, occupational, speech, and feeding therapies. As far as specialists go, I think it may depend on what is available to your friend in her region (some places have Down syndrome clinics; too cool), and what issues are thought to be affecting her baby. My son originally saw just his pediatrician, then an audiologist to monitor his ears and hearing, then a neurologist when we thought he might be having seizures. He's never seen a cardiologist, pulmonologist, or other specialist, because he's not had health issues in these areas. We only saw a pedi psychiatrist recently because Gabe was diagnosed with autism a bit over a year ago.

Your friend sounds like she's already well-prepared to meet the unique needs of her new little guy. Wish her well for me, and offer her a huge congratulations!

Joni

: and kids, incl. Gabriel, 7, Ds and autism

 

[mamastotwo]

First of all congratulations on their new DD! We have a DD who is 15 months and has Trisomy 21. I do really like the forums at downsyn.com - any question can be answered there - plus you really fall in love with all the children. We started EI at about six weeks, and to tell you the truth in the beginning it was really for us. But now our daughter is thriving and doing great. If your friend has any specific questions she can feel free to email me. Many of our kids have heart issues which can be (pretty) easily corrected and that has made a MAJOR difference in our kids lives. We see a regular pediatrician who is on top of the NDSS recommended testing. For specialist we have seen a cardiologist a couple of times (DD has a minor heart murmur) and an eye doctor twice (for routine checks). Beyond that no other specialists. If they follow the NDSS guidelines for medical tests they should be in good shape!