Could you nurse your special needs child?

[Anonymous]

My SN child figured out nursing on his first try. He did have reflux though and it was frustrating to have him throw up sometimes post nursing session. We ended up having to thicken the milk at the advice of a GI doctor. My child without SN needed a little help, but not much.

I know sometimes with oral apraxia kids have trouble nursing, but that is not always the case. FYI every kid I know diagnosed with apraxia is talking quite well now thanks to speech therapy.

[Anonymous]

My son has low muscle tone and was diagnosed with a genetic disorder when he was a week old. Other children with his disorder however often don't get diagnosed for years. My son could never breastfeed and bottle feeding would end in his sleeping even with constant tapping on the bottom of the bottle. Have you tried that trick?, it is is very effective in giving oral stimulation to keep them sucking. We had a g-tube placed for the first year plus although my child could consume some by mouth with a bottle but he was failure to thrive without the g-tube. Do everything you can to ensure that your child is receiving adequate nutrition for brain development in the first year...even if it means fortifying breastmilk to give higher calorie concentration/ feeding tube etc. You should ask for a referral for a nutritionist asap if your pediatrician can not make appropriate recommendations.
Not to be alarmist, but quite honestly, any child with low muscle tone should be referred to a geneticist, especially if feeding issues are at play. Low tone often does not mean there is a identified syndrome/ issue, but it frequently is the red flag for one.

[Anonymous]

One more thing, you really need to request a swallow study. Your child may be at risk for aspiration as he sounds like he/she has poor oral coordination.

[Anonymous]

I think so many children who turn out to be neurotypical have trouble nursing that in itself it does not alarm clinicians. But, as someone who is very analytical, I can relate to your desire to understand WHY.

For what it is worth here are my anecdotes: 3 of my 4 kids had trouble nursing at first. With two of them it was a matter of struggling for about a month and then I was able to exclusively nurse and went on to do so for a year. One of these two in fact does have low tone and neuro issues, the other does not. The third of my challenges (a preemie) never really "got it." I basically did a combination of pumping around the clock, syringe feeding, nursing/pacifying, and some supplementing with formula for six months, at which point my supply tanked. This one definitely has muscle tone issues, especially low oral muscle tone, had a speech delay and has some obvious coordination challenges. He is also the funniest, most joyful, sociable five-year-old you will ever meet, smart as a whip, was a very early reader, and now talks a mile a minute.

So even when you do have real challenges, there are so many interventions you can do to address them, and even when the issues are not 100% resolved, it can turn out great!

[Anonymous]

OP here. Who would do a swallow study - ped GI, speech therapist, someone else?

21:31, can I ask what your LO was dx with? Just curious since it sounds like possibly some similar issues.

I feel like I'm walking a very fine line between pathologizing everything and overlooking issues because of fear. DS has seen a ton of doctors since birth due to my stubborn efforts to nurse. Our ped has seen him very regularly because she is a lactation consultant. We have seen other LCs, a speech therapist, and an OT. He was also in the NICU for four days for suspected infection after birth, but it turned out to be dehydration due to poor nursing (even though we were initially told not to worry). We are going to see a ped GI soon for reflux, and I am waiting for a call-back from the speech therapist who originally said she saw no oral issues (I contacted her again to see if she would consider re-evaluating).

The OT is who noted the low tone. When I got concerned, she told me not to freak out - that it was possible to have low tone and no other issues, especially since DH does. I asked our ped at the next appointment, and she said she was hesitant to get too concerned yet but said I could call EI if I wanted. I haven't because the website says they have to have a delay to qualify, and I don't think DS could be said to be missing milestones, even thought he does have other issues.

Why a geneticist? Why not a neurologist? How would we know who to see to investigate these concerns? Our next ped appointment is next Wed, and I will ask again. I don't want to force the notion that something is wrong when it might not be, but if there's anything we can do to help early, I'd like to do that. I feel constantly worried about his development, but DH and MIL think I am obsessing and creating issues that aren't there. I AM an anxious person, but I am not imagining symptoms.

I don't want to drag DS to a million doctors and subject him to unnecessary tests, but I don't want to ignore a potential problem either. His issues are fairly minor in intensity and seem like they could be symptoms of any number of things, or of nothing. I know "wait and see" is likely to help us narrow it down but don't want to wait too long either.

BTW, DS is gaining fine so far - up to 13 lbs from 7lbs, 13 oz at birth. He is chubby, but has a fairly small head. I don't think he would need a tube, as he is gaining well with bottle supplementation.

[Anonymous]

In order to qualify for EI services, a child has to have delays but you can still get them to evaluate your DC! I think it would be prudent to contact them, express concerns about mouth coordination/feeding issues and ask for an evaluation. I'd also be somewhat hesitant to contact the first speech therapist for a re-evaluation. As many of us know, there's a huge range of skills in therapists and the first one you went to may not be a very good one. Also, many of us have experience with knowing/feeling something isn't quite right with our DC and having to see multiple professionals before finding one who can figure out what's going on. (You also see adults having the same experience - you can usually find their stories in the Health Section of the WaPo). At least EI would give you a more comprehensive/global evaluation.

[Anonymous]

Thanks! I didn't realize that about EI and will look into it. It sounds like it might be helpful.

The speech therapist was very highly recommended and seems to be "one of the best," so I do trust her, but I agree with the idea that it might be worth contacting someone else for a second opinion.

[Anonymous]

My SN child had trouble nursing. I think it was a coordination issue and maybe oral tone. We used the Supplemental Nursing System (SNS) which is kind of like syringe feeding but you attach a spaghetti-like tube to your breast so the baby is nursing but the source of milk is the bottle attached to the tube (and increasingly the source is also your breast). Sucking on the tube produced the correct tongue movements required for nursing. It took from week 1 to 6 to have him nursing on his own, and even then it was pretty slow. By 2-3 months he was nursing normally. This was a pretty stressful period and I do sort of regret the interventive stress that this whole process caused us (I was constantly weighing my son, dealing with cleaning the bottles and tubes, worrying, etc.). If I were to do it again I might just pump and bottle feed. I know people who pumped for 2 years even...it's doable. Then my husband could have had more of a role with feeding. But then again, I did enjoy nursing for a good long time and was happy we made it to that point. Do be careful about subjecting your baby to too many tests and interventions....cranial sacral? Is that necessary? The less other people are acting upon your baby the better for his own sense of wellbeing and peace. My son is super oral defensive and highly anxious. I sometimes wonder if it is due to all the feeding strategies being directed at him and stress surrounding his early weeks. But perhaps he was oral defensive and anxious to begin with. Who knows. In our case, my son was separated from me for the first 2 hours instead of getting a chance to nurse, then had trouble nursing, then gto dehydrated, then got jaundice and hence more trouble nursing and falling asleep at the breast, and wound up too weak and perhaps uncoordinated to nurse. It was a stressful beginning but we got through it. Good luck and take it easy. I was militantly focused on breastfeeding but looking back it would have been OK if we hadn't gotten it going--again pumping would have been fine. We did supplement with formula for those first 6 weeks...but with food allergy risks (and you mention reflux) pumping may prevent issues that could arrive with longer term formula use...but formula is not the end of the world either. I have many friends who used it and their kid were fine.

[Anonymous]

Yes, EI may tell you your child doesn't qualify for services, but will first do a complete evaluation. Though where do you live? We had a good experience with MoCo EI.

[Anonymous]

Op, forgive me for being intrusive, but are you the poster searching for early signs of Cp? I think you are reading way too much into bf ing issues. Try bottles for now; switch later.

[Anonymous]

I also suspected this was the mom who was trying to find signs of CP. I really think you need to back off if so. The fact that an OT thought there might be evidence of low tone is not conclusive.

Really, OP, I mean this in the kindest way -- subjecting your infant to a swallow study merely because the two of you have not been a successful breastfeeding pair is really kind of cruel. Have YOU had a swallow study? It feels to me at this point that you are searching for something, anything, to blame a failure of breastfeeding on. I think the fact that you have not been able to breastfeed is a personal loss or blow to you. But many women have been unsuccessful. It DOESN'T mean something is wrong with their child or that the child should be subjected to endless medical and clinical studies.

OP, it's time to let this go. You don't know that your child is special needs. The fact that one OT somewhere suggested he may have low tone -- that really is kind of meaningless.
Please. For this child's sake. Because frankly, I'm going to put this out there -- you are starting to scare me.

[Anonymous]

If the baby is bottle-feeding well, then I agree with PP.
Not being able to nuRae in itself is extremely common.

[Anonymous]

My DS went on to have ASD. He is 12 now. His tone was very high, i.e. rigid. He could never latch on and unfortunately, the social climate at the time was BF or else it like abuse and your child will never bond with you. We had and have bonding issues, so that is pretty tough to take, in hindsight. My DD, who I only BF for 6 mod and I are somewhat less close, too. My DS that I BF'd for 16 mod is actually the kid that I'm most easily bonded with, sadly. It's not anything that I intended-but it is sort oaf a chicken/egg situation for me. I wish it could have been otherwise and I tried very hard to make it so, but in the end the frustration between me and the baby was not worth it. I pumped instead.

[Anonymous]

I have to respectfully disagree with some of the posters above. The OP may have legitimate concerns but every situation is different, every child unique. My DD had significant trouble breastfeeding and low tone - and that's all we knew for probably her first year. I didn't know it then, but those turned out to be quite important pieces of a developmental puzzle that it took us years to figure out. I couldn't get anyone to listen to me, really, until she did start missing milestones, then it took months and months for EI to come to do evals. Once they did, she was truly behind, and has received therapy (PT, OT, speech) ever since. She's 7 now and fairly high functioning, but does have an ASD diagnosis, though we haven't had that diagnosis for very long.

My rec would be to go see a developmental pediatrician, before doing a swallow study, and before a neurologist. The dev ped will recommend who else you should see and in what order. Genetics can be useful too - sometimes there's a definitive answer, but start with a development pediatrician if you are really concerned.

My DD had a high arched palate as well as low tone, and breastfeeding was both stressful and uncomfortable. I went to a lactation consultant, tried all sorts of positions, pumped - everything. But after all of that I wish I'd just switched to a bottle sooner. It was frustrating and I was very hard on myself.

Good luck, OP.

[Anonymous]

OP here. Thanks everyone for your advice and comments. I am definitely not rushing into a swallow study or anything else but just want to know what the options are out there for investigating what's going on. And my concerns there are not about BFing but DS's reflux and overall feeding issues on bottle as well as breast. It's my hope that treating the reflux with different meds will take care of his discomfort, but if not, then I might seek out other answers to make him feel better and eat better and rule out anything more serious.

I am disappointed that BFing hasn't worked for us and want my son to have breast milk if possible because I think it would be best for him, and he seems to have a sensitive system. EPing is very, very tough and makes it harder to attend to DS's needs sometimes, so my desire to work out BFing at this late point is at least partially motivated by logistical factors, not grief over the loss of BFing.

The OT who identified his low tone has 25 years of experience and works with many kids with ASD and other conditions, many of which involve low tone, so I trust her.