Severe reflux and general development delay

[greenish]

DS has just turned 12 months and it is becoming more and more obvious he is lagging behind other babies. He doesn't walk, cruise, pull up or crawl neither does he point or clap. He is quite quiet, babbling infrequently and making a limited number of sounds. He also rarely imitates us, although he is pretty much obsessed by 'adult' things like the remote, drinking glasses and cutlery.

He has really bad silent reflux despite the highest possible dose of omeprazole and domperidone and has gone from the 91st centile to the 9th for weight.He had gone from the 75th to the 40th for length but is back up to about the 60th. Feeding is a nightmare and he essentially gets by on breast milk.

Our paed is finally taking us seriously and referred us for blood tests to see if DS suffers from a metabolic disorder plus a SALT and development assessment. I'm a strange combination of relieved something is happening while full of fear for DS' s future.

Has anyone had a similar experience? What was the outcome?

Could he be tongue tied? It can cause reflux, feeding problems, slow weight gain and speech delay and it has been noted, (but they are not sure why) that tied kids are often late crawlers/walkers and many of them also have allergies.

You say feeding is a nightmare. What happens? How did breastfeeding go in the early days? How does he sleep?

That was quick-thank you!

He does have mild tongue tie but we were told it isn't serious enough to impact on his feeding. Maybe we need to revisit that.

Breastfeeding was relatively easy at first, he had a pretty strong suck almost from the start. Once the reflux kicked in it got rather difficult. Now breastfeeding is generally fine but persuading him to eat solids is a battle. We use a lot of distraction but the results are pretty variable.

Sleep is fairly poor.He's usually up 4 or 5 times a night, one wake up being at least 2 hours and usually more. In fact, he is up at this moment...This is an improvement though.

Yup, I would suggest that you find out everything you can about tongue tie. His tie possibly looks "mild" but it's not about how it looks, it's about how the tongue functions.

Ask to join the tongue tie babies support group on facebook. There are parents and professionals on there with a load of knowledge available to tap into.

Take it from me, most HCPs know nothing about tongue tie beyond the standard "speech and feeding" line. There is so much more to it than that. DS1 is 7yo and I have since found out that so many of his problems as a baby/toddler are linked to his ties (upper lip and posterior tongue tie).

There are people in the UK who can help if you are willing to go privately. Laser revision can be done without GA.

This is good Dr Kotlow is a leading expert There's some reading for you to start with LOL

Thank you!

Well, obviously I can't offer you much in terms of certainty but I hope my experiences reassure you a bit that it mightn't be anything too serious

DS , now nearly 3, had ALL the things you mentioned - poor muscle tone, not walking, cruising, talking, at 12 months. He also had severe reflux ( controlled by max dose of another PPI, lansoprazole), a milk allergy, a tongue tie ( revised) and a feeding aversion.

We had all the investigations under the sun - metabokic, MRIs, genotyping ( or whatever it's called), muscle and nerve conduction tests. The paeds concluded he had minor muscle weakness which would prob resolve. The paed also thought the milk allergy mught be implicated and in retrospect I think he could have been right.

Two yrs down the line he is busy, super-active, ambulant,, talking the hind leg of a donkey kind of boy

Than you- it is really helpful to hear someone else was in a similar position but had a good outcome. Did you do anything specific to encourage your DS or was it simply a question of time? I worry our DS is understimulated.

DS did attend some physio sessions which gave us some ideas of things to try at home, but we didn't do anything in particular to encourage his development over and above the normal things that parents do.

Does your DS respond to his name when you say it? Turn his head toward you? can he manipulate objects (pick up and put down?). Does he drop things on purpose to get a reaction, anything like that?

I am sure your DS is not understimulated, not unless you're leaving him strapped in a car seat/ bouncy chair all day (!).

You could consider having a hearing test done to rule out that possibility. My DS had pretty much all of what you mention - late milestones, silent reflux, terrible feeding. We were referred to SALT who referred him for a hearing test as part of their standard process and he was diagnosed at 15 months with a hearing impairment. Just be good to exclude that possibility. It's hard isn't it? Despite my DS having a permanent hearing impairment I find the feeding issues the hardest to deal with and the constant stress over growth and nutrition very depressing. Hopefully your little one will kick on in time and this will be a distant memory.

Ragusa DS doesn't always respond to his name when either DH or I say it, but he usually does if someone else does. He manipulates objects fairly well, eg squeezing a bath toy to get water in it. He does various things to get a reaction but they are mainly focused on being picked-up, having a drink etc. His eye contact is rather variable, although he did show me a greengage earlier today

I worry about understimulation because I'm pretty knackered at the moment and keep finding myself operating on autopilot but DS definitely isn't in a car seat all day!

Holly Madison I have wondered about his hearing because he doesn't always respond to his name first time. Feeding problems are tough. DS used to have longish 'good' periods but now we just have to take each day as it comes. I dread weigh-ins! I hope things improve rapidly for you.

Hi, my ds has a very rare metobolic disorder. When it was being diagnosed my local hospital kept threatening to send us to London (the experts). For some reason I didn't want this to happen, I think because I thought it would be a sign of it being really serious, where as if I stayed local then somehow in my mind that would keep it less serious.

In the end we were referred to one of the big London children's hospitals, and they were BRILLIANT! And things got better from then (ds is fine now) as we weren't stuck with some local consultant who hadn't really dealt with this sort of thing before, but instead were seeing the experts to whom it was all perfectly normal, what they saw every day and so were very reassuring.

This all sounds irrelevant, but what I am trying to say is if he does have a metabolic disorder, then a) don't panic it is probably perfectly treatable. B) get him to an expert, if you can, rather than local dr and c) then find a parents support group for the particular disorder as the parents too are likely to be very reassuring.

I'm on my phone, so can't tell if this response is appropriate to your OP.

If he is squeezing a bath toy to get water in it, and doing all those other things you describe, too, then I woukd say he sounds well within the bounds of normal ;)

Re understimulation because you are knackered.... I bet 95% of parents have worried about this at some point. We are led to believe that babies need loads of focused attention and hours of improving activitues (baby yoga, signing, baby swimming, tumble tots, yadayadayada but actually they are pretty good at seeking out stimulation if they are in a loving home. If there is anything going on, I would be 99% certain it's not caused by lack of stimulation. Don't beat yourself up about that

I hope the paed - wherever and whenever you see him or her - is able to put your mind at rest. Has anyone mentioned cow's milk protein allergy as a possibility? I think that should always be discussed where there's severe reflux. The symptoms (vomiting, FTT, food aversions] are nearly identical. Is there any family history of allergy, asthma, or eczema?

DS1 had congestion in his ears and hearing loss for a couple of years from about age 4 or so. I am pretty sure it was linked to the reflux. He was always saying "what?" when we spoke to him

I have read that the gastric fluid from the reflux can be forced up into the eustacean tubes and if the tubes are narrow (ds1's probably are because his high palate - also caused by the TT - encroaches on the space) then it can't drain properly. He also had numerous ear "infections" I don't know if they were actually infections, or just irritation from the fluid in his ears.

His reflux stopped after his first TT revision (which wasn't done properly, but was done enough to stop the reflux) and at his next audiology appointment, the congestion was gone. Coincidence? Probably not.

Ah, you lot are fab

ktef that response is very welcome. I think part of the problem is that 'metabolic disorder' seems to cover so many things, we won't actually know anything until we get the results.

Ragusa I was dairy and soy free for about 7 weeks when DS was EBF and it didn't seem to help. I do think some foods are an issue but he eats so little that I suspect it may sometimes be too little to trigger an attack.

mawbroon the more I think about DS' s hearing the more I wonder if it is a problem. Will investigate!

I'm hoping that greenish still somehow is a part of this site. My little one has all of the same symptoms including the glasses and silverware. I'm curious if you ever received a diagnosis as my girl is 2 and we still do not have one. Please reach out. I need answers.

Hi. My dd has severe acid reflux and on the same meds as yours. She also had development delay - we couldn’t even get eye contact from her at 4 months. She went for an mri scan etc, but in the end her ped just put it down to her being in pain with the reflux (he was quite confused by it all for a while). Once this eased she quickly caught up, and is now a happy & healthy 7 year old.

My dd had reflux which stopped once she was eating solid foods. You said ds isn't keen. Will he put his hand in the food or pick up finger foods?

Hi how is your little one @greenish

Sorry just saw how old this post is! In a similar situation and feeling a little lost

Hey @Happybunny2 I'm in similar situation with my 7 month old. How did you get on?

Well everything came with time, she was definately slower to meet milestones and language is slower but her understanding has rocketed since 18 months. She is so much fun now but obviously has her moments! Still alot of issues around food but I'm not too worried given the level of reflux she had its not surprising really

Hello!! I have a 19 week old. Not smiling or engaging. Constantly in pain. Screaming and crying 24*7. We are in the midst of lots of testing. EEG tomorrow. As doctors are clueless and haven't seen a baby in so much pain. Sounds very similar to your LO. How did you cope? What helped? when did it get better? Losing our minds currently!! @ sunshine