Could you nurse your special needs child?

[Anonymous]

If you had problems, what were they, what caused them, and could you overcome them?

DS has not been diagnosed with anything but does have low muscle tone, which may likely just be inherited and not a sign of something else (but may be a sign of something else, although doctors have nit suggested so). We have not been able to establish BFing, despite lots of efforts and specialists. I'm interested in your experiences in part because I have read about babies with Down Syndrome who have low tone and problems BFing. Most LCs and others seem familiar with BFing problems and the "average" baby, and I feel like they may be missing something that would be helpful in his case.

Did you keep trying, and for how long? What finally made it work? DS is 12 weeks, and I was hopeful he might be able to do it by now with a bigger mouth, more strength, etc., but he is still not efficient and falls asleep without eating much. He's okay on the bottle but also slow and sometimes swallows bubbles. He has reflux, which I think contributed to his problems, but I don't know if it explains everything. My guess is that low endurance and maybe poor coordination due to low tone is a cause. Thoughts? Experiences? Thank you!

[Anonymous]

Fwiw, my ds was very low tone and was able to breast feed.

[Anonymous]

My daughter is low tone and nursed for 2 years. I'm not sure that is to blame in your situation. BFing doesn't work for lots of babies, try not to be so hard on yourself.

[Anonymous]

My son had problems due to a really high palate. Have you seen a lactation consultant? Could be anything.

[Anonymous]

Anonymous wrote:My daughter is low tone and nursed for 2 years. I'm not sure that is to blame in your situation. BFing doesn't work for lots of babies, try not to be so hard on yourself.

+1 w/reflux

[Anonymous]

OP here. Thanks everyone. I've seen some LCs, talked to the OT who is setting him for craniosacral work, etc., and no one knows exactly what the issue is. What we have landed on by default was low tone = low energy and maybe poor mouth coordination. I saw things online about parents with kids who have DS and have trouble BFing in part due to low tone, and it was the most informative thing I found related to DC's issues, so I thought it might be that.

I am probably mostly irritated because no one can find a reason. How can there not be a reason?? It's so frustrating! I'm going back to the LC today for what might be the last time. I just don't know what else to do. People kept saying it might improve at 6 Weeks, then 8, then 12. But it hasn't. I was curious about special needs kiss because I read several moms saying their DCs with DS didn't nurse until 5 months, but without a reason,I don't see a point in keeping trying that long!!

[Anonymous]

Kiss = kids (sorry, writing on phone)

[Anonymous]

Two of my 3 kids have low tone and only one had challenges nursing but with the assistance of the LC we were able to finally get a good latch. You mentioned that it's been suggested your DS might have poor mouth coordination. The other kid with low tone also has apraxia of speech which is a motor planning/coordination problem involving the muscles of the face required for speech. (He had no problems with BFing which is kinda interesting) The PROMPT approach of speech therapy seems to be the approach of choice for kids with apraxia http://promptinstitute.com/index.php?page=what-is-prompt3 . Speech therapists also work with kids who have physical problems eating. Since you seem to have gone through all the usual experts and are still at a loss, you might consider calling our speech therapist's office to see if they have any suggestions (they practice PROMPT and I know they work with kids with feeding issues) http://www.cslstherapy.com/ . They could at least evaluate whether your DS's challenge is related to motor control. If so, it will also likely affect his speech and, believe it or not, it's not too early to start working on it.

Also, as PPs have said, don't be too hard on yourself. You're doing the best you can and just because it's not working out the way you want, doesn't mean that it's your fault or that you're not doing enough.

[Anonymous]

A nipple shield helped a bit for my preemie twins, but in the end I pumped for 11 months. If you really want to give your DC breast milk and he can't/won't BF, then rent a hospital grade pump and get a subscription to People Magazine to keep you occupied. It's a huge pain, but doable.

[Anonymous]

Thanks everyone. The suggestion of a speech therapist is very helpful. Actually, we did see one who we were referred to, but she didn't see anything unusual, which honestly surprised me because he really seems to have some coordination issues. I recently contacted her again to see him for a second time because I think he just had a good day with her, but I'm waiting for a call-back. I am suspicious there is a swallowing issue that isn't related to sucking and might be harder to see. Of course, I'm happy with her initial diagnosis that he doesn't have any mouth problems, but I can't help feeling it might not tell the whole story. I looked up swallow disorders and was surprised to see all of his symptoms on the list. Unfortunately, many are also symptoms of reflux, so it's hard to distinguish. We are working hard on the reflux right now, and I do wonder whether it might help if that gets under control.

I know some women/babies can't BF and am willing to accept that, but I just feel like there HAS to be a reason!!

[Anonymous]

No problems nursing my CP baby.

[Anonymous]

No problems nursing my 28 month old with significant medical needs.

[Anonymous]

My son had mild low muscle tone, but he could breast feed. Two things that I did with him that I did not do with my oldest were feed him while laying down on my side. I did not know he had low tone, but we naturally fell into that position- maybe it was easier because his muscles were more supported? Also I would stroke his cheek to remind him to eat (read this somewhere and it helped him).

Really I did not realize he had low tone until he started having problems with solids and sippy cups. Nursing worked fine and he did not want to move on until 1 year.

I hope you find something that works. Also if you suspect low tone, make sure you write down when he reaches important steps- I have had quite a few doctors ask when he lifted his head, sat up, crawled, started walking and said his first real words. I know rough ages for these, but I did not write exact dates.

[Anonymous]

Poster from 12:02 just wanted to say that you are doing great getting to 12 weeks and still trying.

[Anonymous]

12:02, thanks for the advice. I will write down when he meets milestones a little better than I have been. So far, he's been very on time for everything. The only reason I know about the tone is because the OT we are seeing for his feeding mentioned it. When I freaked out that there might be something more serious wrong, she said not to worry too much now. DH has low tone also, so I am hoping it's just inherited and not a sign of something more ( but hard not to worry).

It's interesting that none of you have had problems. I guess maybe it is something else, or maybe just a combo of low tone and anatomy. I do think reflux is playing a role but not sure how much. Not sure I can keep trying, but I keep feeling that we are just about to turn the corner and work it out...