Developmental delays caused by feeding problems? - Mothering Forums
Women's Health > Developmental delays caused by feeding problems?
Clover Honey's Avatar Clover Honey 10:49 PM 08-09-2010
Hi there,
I'm not sure where to post this, but I wonder if any other mamas who might have had extreme feeding problems might come here and see it. My DS was EBF for about 4 months, during which time he was not transferring milk effectively but was gaining enough for us to continue. In fact, he refused all other feeding methods. When he was 3 months, he lost close to a pound and had to be brought to emergency for IV fluids. We were told he would most likely require a g-tube, but we worked with him to try to avoid this. His suck was weak and he was chomping and basically waiting for letdowns, which is why he nursed for an hour at a time at least every two hours for those first 3 months of life. We finally were able to get him to accept bottles at 4 months, but still only able to feed him 1-2 ounces at a time. He gained weight and increased his intakes over the next 2 months although it continued to be challenging to get him to suck and not chew on the bottle nipple.

Now that he is almost a year old, it is obvious to the practitioners (as it has been to us for a long time) that he has some developmental delays. His gross motor skills are very behind, he can sit without being propped but can't get in or out of sitting by himself. He can roll and push up, but has just begun using his knees and elbows to slide along on his tummy, slightly. He is not babbling much, and has some exaggerated arm and hand movements while excited, like when he's in his highchair waiting for food, or looking around at us, etc.

We've finally had our appointment with the Neurologist who confirmed that he has low tone, in his trunk, extremities and face. He's wonderfully social though, so this is a good sign. She recommended an MRI, but we have decided to wait a few more months since I am not comfortable with having him sedated in order to have it done.

Does anyone think that his development might have been delayed because of the complete concentration on feeding for the first 4 months, including severe oral aversion to alternative feeding methods, bubble palate, possible posterior tongue tie, super sensitive gag reflex, weight loss, mild dehydration, etc. Or, is it more likely that his low tone or possible neurological problems are what led to his inefficient feeding? One possible clue is benign hypotonia since I did not walk until 18 months, and my mother's sister also didn't walk until 18 months - but we could crawl and get ourselves into sitting position and pull up. DS isn't doing any of these yet.

I have been worried sick for the past year, and it is so sad because he was my vbac baby and had a hard birth (big bruise on top of his head, I had a 4th degree tear). I worry if my birthing decisions caused damage to him - or if he is delayed because his physical development was hampered for 4 months. I am hoping for the latter and that he will catch up, but only time and lots of therapy will tell. Would you have an MRI done now, including a sleeping medication for an hour, or wait a while longer? We are in the Early Intervention system, but the waits are long and the process is slow. It's been 2 months since the first appointment, and we have two more weeks to wait until PT and OT begin. DH and I wonder if we should think of DS as having an adjusted age, much like a premie would have, of 3-4 months. I also wonder if certain neurological connections were not made during important developmental windows because we were too busy trying to get enough into him.
Thanks for reading.

sbgrace's Avatar sbgrace 12:02 AM 08-10-2010

I know your worry. I really do.

I can tell you that my instinct based on your description and my own son is that the same issues (hypotonia) that are causing the developmental delays were causing poor feeding. Many kids with poor muscle tone also have weak sucks or other issues that cause poor feeding.

I'm mildly hypotonic as well.

The hard thing to figure out of course is what is causing the hypotonia. There is a cause but sometimes it's not worth figuring out as it doesn't cause problems. The degree of issues will determine whether investigation is warranted.

My son was eventually diagnosed with a metabolic condition he likely inherted from me. However, he had some other stuff health wise.

My information about metabolics in case it becomes relevant because hypotonia is a flag for metabolic issues. http://www.mothering.com/discussions...d.php?t=734501 Read through so you're aware of what to watch for in the future because if it is metabolic and things decline you want treatment. Sometimes the condition doesn't really cause any other issues though and sometimes it does. I'm imagining you had a newborn screen and ruled out many metabolic issues? Check to see what was done/covered as it does vary by area and if it was what is called an expanded screening--lots of information online about that. Newborn screens don't screen for mitochondrial issues.
Please feel free to contact me if I can help or support you in any way.

We didn't do an MRI on my son but I think he was mishandled in multiple ways. Metabolics weren't even tested until I figured it all out when he was three years old. So lots of time and decline had gone on at that point. Still, they didn't order an MRI. Honestly, it might set your mind at ease to just do the MRI so I probably would. I've discovered in this journey that no matter how scary the possibilities seem it's always better to know what I'm dealing with. It helps the grieving process if the answer is negative and helps make decisions on what to do next. If positive of course it takes the weight off. It's always better to have information.


mellowjello's Avatar mellowjello 02:33 AM 08-10-2010
My gut feeling is also that the same root cause could result both in feeding difficulty and developmental delay.

I can totally relate to your being worried and thinking about the stress on him from the birth. It is not your fault! However, it could really help him to address this. Have you ever looked into craniosacral work? This can be HUGE for the vague nerve which affects the whole GI tract including swallow/suck. I would NOT go to a chiropractor (I made this mistake). She said she was doing craniosacral work but she didn't really know what she was doing (even though she was caring and gentle). We then went to an osteopath who does almost exclusively craniosacral on children and the results were amazing.

Trust your instincts. Best to you!
christinelin's Avatar christinelin 02:50 AM 08-10-2010
I can only share my own experience, but in my son I believe that the developmental issues were there at birth (in our case, likely genetic in origin) and caused his feeding issues. He, too, couldn't transfer milk properly. He did figure it out eventually, but for the first month and a half, he was getting more than half of his calories via pumped milk in bottles. I vividly remember the IBCLC we worked with saying that when a healthy, full-term baby can't transfer milk properly, that's a red flag.

We also had some birth stuff in the picture, too. He was born super-fast at home and was slow to breathe.

He was diagnosed with Asperger's Syndrome (and accompanying developmental coordination disorder) when he was 5. When I saw the OT write "hypotonia" on her notes during his eval, it all came together for me: this was why he couldn't nurse!

We haven't done an MRI, although we likely will eventually. Knowing what I know now, if If I was dealing with a younger child, I would be quite aggressive in trying to figure out exactly what was going on. The truth of it is, though, my DS's stuff was too subtle to see earlier. Sometimes it only becomes evident with time.

Be gentle with yourself.
Clover Honey's Avatar Clover Honey 05:32 PM 08-10-2010
Thank you all for your support and suggestions. You all know I just want it all to go away and for him to be as healthy as possible. I've made an appointment with a new pediatrician who is more holistic, I've been told his observes very well and uses homeopathy in addition to conventional medicine.

The EI team suggested to our current ped that some metabolic/other bloodwork be done, and she was confused and only ordered basic tests and thyroid. Seems like she thought they were overstepping in making medical recommendations, but she was the one who referred us to EI. Frustrating!
I've requested the records for his newborn screen blood work to double check that.
sbgrace, who should we have order the metabolic/mitochondrial work up, and who should review it? I am comfortable at least asking about it with the new ped, and we will be getting a second opinion from another neurologist soon.

mellowjello, thank you for that recommendation; we did do a lot of CST from 3-4 months during the feeding crisis, and I was not getting a great feeling from any of the practitioners (2 chiros and 1 OT). I am not sure there is an Osteo in the area who does this, but I've been considering trying again. We were just so done with everything that wasn't working, and strongly felt that it was up to us to get him to feed well, which worked for the emergent situation but maybe not over time now. I hope our decisions didn't prolong his problems.

christinelin, I've read that spectrum disorders can be diagnosed very early now; is MRI used for this? I would like to have some answers now to start all possible treatments, but the sedation and any contrast agents make me want to cry, in fear that any further damage could be done!

My daughter also had feeding troubles, but she was offered the bottle very early and took to it well. She is 3 and doesn't seem to have any troubles. She was late crawling and pulling up, but we chalked that up to her weight, and she walked 7 days after she turned 1. They were both tongue-tied, and I have extremely flat, somewhat inverted short nipples, so the reasons for breast feeding troubles are endless and something I'll never be able to sort out for either of them (I also had a huge goiter 6 weeks pp with my daughter, and supply issues).

Thanks so much for all of this input, I am shaken to the core and feel like we desperately need to find immediate help for him (or is it more answers for myself?). This poor baby is so sweet and I just don't know what else to do for him, so we'll keep trying to find answers. I forgot to mention that his development has been clustered - never doing just one new thing at a time. It's slow but explosive (rolling for the first time in all 4 directions in 1 hour, 4 teeth at a time, 3 new sounds on the same day, etc.) and it's also always moving forward, but he's just so weak and wobbly. He's feeing well but acts as if food is going up his nose, and sleeps much more than my daughter ever needed to. His hunger cues aren't clear, and he often seems overstimulated or plays with one toys for extended periods (although many different types of toys). He also has a tendency to stare directly into others' eyes, very intently. He is loving and cuddly, if he could only relax his body enough to lean on me more often. My daughter arched a lot too, and they were both refluxy.

Anyway, getting this out is good, thank you.
Clover Honey's Avatar Clover Honey 05:38 PM 08-10-2010
One more thing! As we will not have answers for treatment soon enough, I wanted to ask - he will be 1 very soon and I am feeling like he would benefit from switching him to whole cow's milk, but wonder if I should hold off and keep him on formula (he is now exclusively formula fed, unfortunately) or maybe go to cow's milk during the day and continue with a bedtime bottle of formula for added vitamins and minerals? If he is delayed developmentally, does that mean his nutrition needs should be treated differently? He's great with all kinds of healthy, organic foods, and loves to self-feed.
Mosaic's Avatar Mosaic 06:07 PM 08-10-2010
I wish I could tell you more, but I can say that the first paragraph of your OP sounds just like my DD: posterior tie, oral aversions, gag reflex, reflux, weak suck/chomping, etc. She's 4 months old now, so I can't tell you much else except that we're working with a speech language pathologist religiously on the feeding issues but she is gaining weight. She also has fabulous eye contact but can't yet roll over and doesn't bear weight on her legs.

FWIW, I can say that we had a perfectly normal (and fast!) vaginal birth, so your birth choice likely had nothing to do with this. My inclination is that if your LO didn't respond well to the feeding therapy, it was because he couldn't (hypotonia). In other words, you were doing all that you could to address the feeding problems; and I think that the delays you're seeing now are related but not caused by the feeding issues.
mellowjello's Avatar mellowjello 07:48 PM 08-12-2010
I would really urge you not to try cow milk if you suspect any ASD related issues or gut issues. Goat milk is a wonferdul replacement, and goat milk yougurt is even better because it is more easily digested and has probiotic strains in it. The casein in goat milk is less allergenic that the casein in cow milk.

I wish I had never tried to give her cow milk, I don't think the casein actually bothered her that much at that age, not like it did when she was a newborn, but the lactose did and worsened her GI issues (which relates strongly to reflux issues). This is why yogurt is great because fermentation breaks down more of the lactose. You can actually make your own yogurt at home too and ferment it for longer (24 hrs is recommended) so that all the lactose is broken down. This is what I wish I had done with DD when she was 1. It would have prevented a long backslide for her. I don't mean to scare you but this was just my experience with her. Also some people like raw milk because it still contains the digestive enzymes to help digest the milk (pasteurization kills the enzymes). In yogurt, it won't have enzymes but the probiotics act like enzymes in helping you to digest it.

Another option is WAPF homemade formula (weston a price foundation = WAPF). There is tons of great info on their website. It may sound "out there" but is supported by lots of research.
sbgrace's Avatar sbgrace 03:06 AM 08-13-2010
If you have a cooperative pediatrician I have a couple of suggestions for you based on your description of him and my instincts.

You have two things you could do testing wise:
Oh, first make sure your little guy had an extended newborn metabolic screen.

Then assuming he did and that was normal I would be thinking mitochondrial function checking based on your hypotonia, his symptoms, and what I know about how it can present. By the way, when you read it can be overwhelming but my son is doing quite well, there is treatment and perhaps more coming, and I likely have it too and have done well health wise all my life with just mild hypotonia and need for more sleep type stuff.

But this link is the official start of testing for mitochondrial. Your pediatrician might be able to order and see if something comes up. It can come back normal on the labs and still have mitochondrial issues though so it doesn't rule things out and interpretation if abnormal is pretty complicated and beyond pediatrician ability generally. But if it was abnormal you'd know you needed to pursue experts in the area.
http://www.umdf.org/site/c.otJVJ7MMI..._Diagnosis.htm The initial blood and urine is the start point for mito testing and will also pick up markers for other metbolic issues is those markers are present at the time of testing.

Alternatively, for now--this is not an official metabolic but not invasive or hard to interpret and did pick up on my son's issues (though after we already knew) would be to look into running a metametrix urine test. You would attach a bag to collect infant urine/it is collectible in a baby. You could then make decisions based on the results you get with this one. I think I'd favor it assuming it can be run in a baby just because there is no blood (and the testing above may well be too much blood for a baby--it's a lot) and the interpretation is so much easier. I felt the information gained was very thorough and helpful as well.

Knowing what I know I would at least be aware of signs and might consider doing some testing. I wish we had known "back when" about my son.
KimPM's Avatar KimPM 12:48 AM 08-14-2010
You can also post in the Special Needs forum and you might get more support there: http://www.mothering.com/discussions...play.php?f=157

And FWIW, my DS also had a lot of trouble feeding, chewing on everything (and me!), sensory processing issues, easy gag reflex, and some hypotonia. So, I understand how hard it must be for you.
monocyte 01:36 AM 08-18-2010
Sounds exactly like the start of my now 2.5 year old DS....

We've been down the allergy/intolerance, severe sensory, gag, sweating while nursing, failure to thrive, hypotonia, global developmental delays, oral aversions etc...

He's also in EI, see's a GI, feeding team, behaviorists, SLP, OT/sensory therapist regularly...and now an ENT.

Learned last week that his adenoids are blocking his airway by 70%, that he has no sense of smell, and therefore can probably not taste. Which, I'm sure has lead to his eating issues and his sensory issues. He seeks crunchy, bold flavors...

Just based on the fact you think that food might be going up his nose...what about seeing an ENT just to rule anything out? I know I was floored looking at DS xray/cat scans.
Clover Honey's Avatar Clover Honey 10:22 PM 08-20-2010
Just an update and thanks for the suggestions - we have scheduled an MRI for the first week in Sept., and a followup with the neurologist. Early Intervention is still useless, wait listed still. So I sought an alternative Ped who prescribed a high dose of Arnica for trauma, and within 24 hours he started babbling again (he went completely without babbling for 2 weeks and we were terrified). We also saw some more daring physical moves, such as pulling up to stand (with stiff legs, but still this was huge).

We've also started CST (rec'd by the alternative Ped) with a well known physical therapist and will do that at least 2xs/week. His findings were that there was much compression at the base of the skull and he explained specific physical exercises. He doesn't agree with an MRI, but we'll see how much progress is made between now and then. It's 3 hours round trip for each visit, 6-8 weeks at least!

We have an appt. Mon. with our traditional Ped, and I will ask about Metabolics/Mitochondrial issues. Oh this poor baby - I don't know why I didn't go with my gut feeling about the horrible birth and bruise and continue CST earlier, but I hoped it was just a feeding issue. The guilt is hard to take, and I can't even fathom having any more children, and we so wanted more.
Jennifer Z's Avatar Jennifer Z 11:15 PM 08-20-2010
First, like a PP said, I would bet anything that all of your issues have the same root cause. And, that the method of birth had nothing to do with it. There isn't much chance that anything you did or didn't do had anything to do with it, it just *is*.

I would see if there is any way to start private therapy if EI is taking too long. You probably need an ST who is familiar with eating/swallow issues and their impact on speech development, and an OT to address the motor delays. (possibly PT too, but we didn't have PT, so I don't know as much about it).

I just went to a conference a few weeks ago and one of the presenters talked about these issues, and I found it fascinating. Her name is Diane Bahr, and conference was "meant" for professionals and was certainly more technical than most parents would be able to follow (unless you have been immersed in ST issues for a while and know the lingo and theories...I am in that category), but she did write a book aimed at parents that is likely pretty good that you would find useful. http://www.amazon.com/Nobody-Ever-To.../dp/1935567209

Your child is young enough that speech isn't the issue yet, but a lot of the stuff you are dealing with now will likely impact speech quite a bit, and I wish I would have known a lot of this back when mine were littler.

And, btw, the sedated MRI is going to be a lot more stressful for you than it is for them. It is really no big deal, and non-invasive as far as testing goes. If you have to get any bloodwork done (like for genetic testing), try to get it scheduled at the same time they can take advantage of the sedation and not try to draw blood on an aware and ticked off kid. We did it while under Versed, right before the regular sedation, and he was loopy enough that he didn't even notice. It would have been traumatic without the meds on board.
Clover Honey's Avatar Clover Honey 12:13 AM 09-22-2010
I just wanted to come back and update and ask a few more questions.
We went ahead with the MRI and the results came back NORMAL. Of course, I have mixed feelings knowing that this doesn't necessarily rule out CP, but at least there is no apparent physical damage. This has given us a base line and has allowed me to let myself off the hook for the difficult birth - to some degree. Of course, one of our Pedis is not satisfied that the MRI was brain only - even though I called our primary Pedi and she called the Neuro to ask if neck and spine should be included - they both said there was no reason. I need to stop taking that as an answer and ask for what I need, and what I needed was the most information we could get at the time. ugh.

Anyway, we have our follow up appt. with the Neuro regarding the MRI etc. I wanted to ask if there are any questions I should ask or if I should just accept the wait and see approach for now - I tend toward that but finally thought 1 year old was old enough to tolerate the MRI sedation as a one time thing. I would only want to pursue mito or muscle disease if the testing was not so invasive, and if there were treatments or steps with could take to improve outcomes if those did come back positive.
He is improving physically and cognitively since starting both EI (PT) services and structural and functional physical therapies at a holistic center. We are doing 3-4 x's/week and working hard at home, much to my 3 y/o's displeasure. Now I wish I had started her part time in preschool!
Anyway, he fatigues much less frequently, has pushed up onto hands and knees rocking for about 15 secs at a time, and is attempting words but so far is only comfortable with M sounds (more, mama, emma, moo - but really they all just sound like "mmm"). He'll have his first Speech eval next week, and OT is so backlogged they doubt he'll ever make it in. Right now we're in a music & movement class for his ability level, and he's the only non Down's or other gene related challenged kid there, and he has the lowest ability physically. I feel like we're just biding our time until the CP diagnosis comes a year or so down the road.
I have discovered I most likely am low tone and definitely share hypermobile joints with mother/sister. We are a low energy family, and I am definitely the lowest on the totem pole, if that's and indication of DS's origin of problem.
sbgrace's Avatar sbgrace 12:24 AM 09-22-2010
Quote:
Originally Posted by Clover Honey View Post
I just wanted to come back and update and ask a few more questions.
We went ahead with the MRI and the results came back NORMAL. Of course, I have mixed feelings knowing that this doesn't necessarily rule out CP, but at least there is no apparent physical damage. This has given us a base line and has allowed me to let myself off the hook for the difficult birth - to some degree. Of course, one of our Pedis is not satisfied that the MRI was brain only - even though I called our primary Pedi and she called the Neuro to ask if neck and spine should be included - they both said there was no reason. I need to stop taking that as an answer and ask for what I need, and what I needed was the most information we could get at the time. ugh.

Anyway, we have our follow up appt. with the Neuro regarding the MRI etc. I wanted to ask if there are any questions I should ask or if I should just accept the wait and see approach for now - I tend toward that but finally thought 1 year old was old enough to tolerate the MRI sedation as a one time thing. I would only want to pursue mito or muscle disease if the testing was not so invasive, and if there were treatments or steps with could take to improve outcomes if those did come back positive.
He is improving physically and cognitively since starting both EI (PT) services and structural and functional physical therapies at a holistic center. We are doing 3-4 x's/week and working hard at home, much to my 3 y/o's displeasure. Now I wish I had started her part time in preschool!
Anyway, he fatigues much less frequently, has pushed up onto hands and knees rocking for about 15 secs at a time, and is attempting words but so far is only comfortable with M sounds (more, mama, emma, moo - but really they all just sound like "mmm"). He'll have his first Speech eval next week, and OT is so backlogged they doubt he'll ever make it in. Right now we're in a music & movement class for his ability level, and he's the only non Down's or other gene related challenged kid there, and he has the lowest ability physically. I feel like we're just biding our time until the CP diagnosis comes a year or so down the road.
I have discovered I most likely am low tone and definitely share hypermobile joints with mother/sister. We are a low energy family, and I am definitely the lowest on the totem pole, if that's and indication of DS's origin of problem.
Your own stuff actually makes me lean that much more toward metabolic. So he inherited a metabolic condition from you...so did my son...of course that is our world so that's what I "read" into your situation. That doesn't mean I'm correct but I think it's more likely, not less likely with the family information.

There are treatments for mitochondrial and other metabolic conditions. These are generally diet changes (avoiding the things that can't be metabolized) or supplements essentially (specific ones depending on the condition that give the body what it needs to do what it can't do on it's own or to improve the function of what isn't working properly in the body). The treatments, though, are to help the body either compensate for what's missing metabolically or to protect from further damage. You can't undo damage done. So they are certainly worth treating in my mind. That said, they are hard to test for in the mitochondrial areas specifically. A metametrix urine test though if you have a doctor who will run that for you would give you all the information you need to treat in my opinion. No specialist, no blood, easy..I'd do it if I knew what I know now and could rewind time and help my son. I am also getting treatment and I've got plenty energy and health for the first time that I can remember.
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