developmental delay due to reflux?

[Anonymous]

Hello, I was a member here when my daughter was born and she’s 4 1/2 now. My son also had a silent reflux and he is 23 months.My kids have both outgrown the reflux. They had quite a bad time of it. In fact during my son’s long bout of it I was in pure survival mode. I don’t even have many memories of the first year.

My question is this. How common is it for children who have reflux to also have some sort of developmental delay? My four year old is very bright and creative but she also has selective mutism, sensory processing issues, fine motor delay, motor planning delay and she toe walks.

It does seem like such a traumatic beginning and first year might produce these sort of difficulties. I’ wondering if anyone has any thoughts on this or experiences?

[Anonymous]

My refluxer also had many delays during her first year- most were motor, social anxiety (due to being stuck inside sleep feeding for a year!), sensory, speech (due to fluid filled ears and feeding problems) and feeding/eating. We did therapy during her first year. She outgrew most of them. She still has a bit of a speech issue I think but only with a few sounds. Socially she’s fine and morot. We still have sensory issues, with clothes, textures, etc. Probably the worst is that when she was a baby, she started pulling her hair due to the pain of reflux. She would twist and then pull it out until she got bald on part of her head. She still does this to this day, and I am not afraid that she’ll have trichotillomania as a child.

The first year is very formative. That being said, reflux is also more common in babies that will have delays (since reflux is typically a physical delay in development of the sphincter), it can go with other developmental delays. That’s what we were told anyhow.

[Anonymous]

Hi, I’m a new member here. i have a 3yr boy and a 5months baby boy. Both are preemies. The older one is a 32weeker and DS2 is a 34weeker. DS1 is a happy spitter, meet all milestones like a full term baby , crawl at 4months, sit on his own at 6months(actual age not corrected), smile at 1 month, chuckled at 4months. Form his first full sentence at 2yrs and a chatty boy now.

My DS2 on the other hand is worrying me. Had severe silent reflux-cried and screamed almost 10-15hrs/day, basically his waking hrs are in pain until 2weeks after we started him on domperidone and losec 5mg three times a day. His scream, crying and arching slowly reduced to extreme fussiness now. He needs to be carried and rocked most of the time and wakes up every 2-3hrly even at night. He will fuss everytime before he sleeps or nap. Likes to be swaddled to sleep too. When he feeds, his entire body will tense up, his fists clenched, his legs straighted and toes spread out.

When he was about 3months plus, we noticed that he is not looking at us, avoid our gaze, does not track objects, does not look at himself or anyone in the mirror and does not smile or respond to us in any way.He does not like tummy time and will scream if we put him in this position. Hence he shows delay in motor skills to – can’t hold his head up, roll over now at 5months plus.

His neurologist suspected that he has mild brain damage and cortical blindness due to his prematurity and he had severe respiratory distress at birth and caught a serious blood infection during his ICU stay at 1 week old.

I certainly hope the delay is not due to brain damage but because of his reflux……would be happy if anyone has similar story to share….i’m so worried….

[Anonymous]

Hi Corrinne,

Well, I have been in your shoes! Some different issues, but with the preemie unknowns. I guess my advice (take it or leave it 🙂 ) is that 1, your baby is only 5 months and being so uncomfortable can make them even more delayed as preemies so it is really hard to tell anything at 5 months. The first thing you need to do is get him comfortable. What formula are you using (or are you BFing?), is he on any meds, etc? There is a LOT of information on these boards and lots of really experienced mamas that can help with all of that and help you figure out how to talk to your doctor, etc.

2, I will be honest with you, both of my preemies do have lasting issues. BUT, they have come so FAR that most people that meet them don’t really pick up on it. Dylan at 3 still had no eye contact, no receptive/expressive language, very detached child. Now, at 7, he is doing amazingly well! He still has some issues (he had a brain bleed with meningitis in the NICU) but he is in a mainstream classroom with a 1 on 1 aid, but she hangs back most of the time and she is only there if he needs her. He is academically on target but definitely socially delayed. he doesn’t pick up on social cues well, and still knows he is supposed to look at someone when they speak, but looks beyond them (at their forehead, or the wall behind them, etc). Most people don’t pick up on it but we notice because we see it so often. That is just an example of his compensation skills that most people won’t even notice.

In CT we have something called Birth to Three that is our state early intervention program. I think most states have this, but could be called something different. I would contact them (or ask your ped to refer them as your ped will know what they are called and how to contact them) and let them come do an evaluation to provide some services early to help him catch up. We have found the earlier we have worked with our boys whether it be a simple delay or a lasting issue, they have come so far so fast with the therapies, and the earlier you start, the better.

The only thing I can tell you is it is way to soon to know anything for sure. Also, with Dylan’s bleed, other parts of he brain have compensated for the parts he had damaged. They are so young, that with all the right therapies (if there are any issues) the sky is the limit. The hardest thing to accept was that they are just who they are, not some label or diagnosis that a doctor gives them. I couldn’t be more blessed and wouldn’t change one single thing about them. With their challenges, we see successes often and know we are doing a lot of great things for them. I am so proud of both of them!!

Hang in there and vent if you need to.

[Anonymous]

Hi Ann Marie,

Really appreciate your taking time to share your story. I’m happy to hear that your kids are doing well now. You definitely have had a harder time than me.

Making him comfortable yes, that’s what we have been trying to do. I’m still expressing milk but its not enough and so he is on anti-reflux formula (Friso comfort) and losec 5mg twice daily (i have reduced it from three times a day for almost a month). He was on domperidone earlier too. It takes almost a month on the meds to stop his cries, arching and screaming. We even tried cranial chiropractic and he had been seeing him for the past 3months.

We have been referred to child development where he is being seen by a physiotherapist who taught us how to help him by massaging him, and encouraging him in his motor development. However, nothing on how to help him in his social development. I’ve recently read about attachment disorders and my baby certainly has risk factors for it – prematurity, long NICU stay (1month) and severe pain (reflux). Too much possibilities. Guess i just have to adopt the wait and see attitude. Feel helpless

[hellbennt]

Hi there,
coming in late:
is there a reason you’re trying to reduce the losec dose when your baby is still showing reflux?
sorry if I missed that

[Anonymous]

My dd had severe social problems well into her second year of life. It was from being in constant pain and socially isolated due to the reflux. Also most refluxers hate tummy time… most non refluxers for that matter. There are things that you can do to make it easier- roll a bollster and put it under his arms, drape him over a leg, or between your legs and up onto your tummy while you try to engage him. A boppy-type billow also helps, though my babies never really loved it. Your physio should be able to give you some good ideas.

About your neurologist’s assessment- has your baby had any brain scans to look for brain damage? I don’t know how early they would do this. I’m sure that his is worrysome for you. Also, is there a way to test for cortical blindness? I hope that the outcome is good for you and your family. Ann Marie is a great resource here and has given you a lot of great advice. HUGS.

[Anonymous]

Ann Marie, you are such a great mom and an inspiration to us all. Your kida are so lucky to have you, and I am so blessed to know you! Lots of love.

[Anonymous]

I’ll like to start off to say that this forum is really a great place for resources – supportive members here with true practical, personal experience. Not some textbook knowledge or general statistics which i had been deluge with by the professionals.

Laura: Sorry i was trying to cut my long story short earlier. He was on 15mg since mid May. At that time, he cry bloody murder all day and night long, arched and stiffen all the time, especially after feeds. Want to comfort feed all his waking hours. About one month into the medications, the screaming, crying and arching reduced to about 5-6hrs per day. In early jul,i noticed that the screaming, cries and arching had been reduced to fussiness and hence i experimented with twice daily (10mg) for 2weeks. Same fussiness after that, did not deteriorate and so i tried to reduce to once a day but i gave more each dose(7.5mg). Then in less than 2weeks on once daily, the screaming and arching came back and i quickly put him back into twice daily. Took about 3-4days to get him back again and i had been on twice daily since. Since last week, i’ve tried weaning him off by reducing the dose each time (4mg twice daily) rather than reducing the frequency. I’ve also started him on 2 tablespoons of cereal with the medication step-down last week. So far so good. Fingers crossed.

I’m wondering if fussiness still a sign of reflux or a personality issue?

[Anonymous]

Awww Lori, Thank you! You are amazing too! That’s why I love all the mamas I have gotten to know here. And believe me, when I was raising my voice at them today, I felt like a HORRIBLE mother, so that was nice to come out here and see

[hellbennt]

I’d go w/ reflux rather than general fussiness?

[Anonymous]

Hi Lori,

I tried rolling a bath towel and place it under his chest during tummy time to prop him up a little. It helps to support him and i can see that its more comfortable. At least he stay there for a good 5-10mins. Without the towel, he will start fussing within 3mins.

Not sure about test for cortical blindness though. I starting doubt he has it since he starts to track toys the last 2-3weeks or either that its getting better. He had a few routine brain scans, which shows mild bleeding which seems to be receding. Read about Regulatory Disorder of Sensory Processing (RDSP), which describe a lot of his signs & symptoms……however some symptoms overlaps with reflux too…..

[Author]

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