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Sandifers/reflux? Intolerances? Something else entirely?

(15 Posts)
ilovetosleep Tue 02-Dec-14 20:31:40

Please bear with me as this will be long!

Ds2 is coming up to 8 months old and has never been a very settled baby. Diagnosed with silent reflux at 3mo, started on gaviscon, then ranitidine, and on omperazole by 6 months. Not taken particularly seriously by many hcps but his symptoms improved a lot with the omeprazole. EBF (til 6 mo, now some solids too) and I am dairy free, soy free, egg free and wheat free. As is he. Skin prick test showed mild egg allergy, nothing more. We are trialling wheat now and he has mild spotty eczema round his mouth (but he also has a cold and is teething so could be that)

The main problem is his restlessness. Nights are horrendous. He will feed to sleep at 7pm and then wake anywhere between every 2hrs and every 30 mins. Never longer. When he wakes he writhes in my arms, stretching out his back and arching in quite jerkey movements. He arches his back throwing his head to one side. It is more than just fighting sleep I think, his face looks pained. Having said that, he doesn't cry alot, just grunts and wimpers and actually he doesn't take that long to settle, i can feed or rock him (very vigorously) back to sleep. I'm up with him for about 20-30 mins each time re settling.

When I put him down he writhes in his sleep until it eventually wakes him up. At the moment his 'thing' is rolling onto his tummy and waking up, but the way in which he does this makes me think its the sandifers thing again - he jerks and arches his back, throws his head to the side.

He often has a really growling tummy as well while bfing.

Food wise, he is eating pretty much everything apart from the 4 exclusions I mentioned, although he doesn't eat a lot.

Is he just a terrible sleeper? I don't mind hearing that but I just feel there might be more to it. Perhaps the omeprazole is not enough, although the other symptoms have gone and the paed wants to wean him off that this month.

Its so hard to figure out, as he has also been teething and had a cold. BUT this sleep pattern has been consistent since he was 3 months old and I always seem to have a different reason - teeth, cold, reflux etc. Are we missing something? I don't want to keep hoping it will get better but actually be missing something that might help him and make him a happier baby. (and get me some sleep!)

Also worth mentioning he's a pretty miserable baby in the day too. He is never satisfied unless being cuddles. He is very uptight and tense, always clenching his fists with his arms held out and up as if wanting to be picked up. Just sits there clenching his fists and whinging a lot of the time. But when in a good mood and having 100% attention he can be very smiley and lovely, and I'm not really worried development wise.

Would appreciate any comments.

thanks in advance

mawbroon Thu 04-Dec-14 13:20:41

Has he ever been checked properly for tongue tie?

DS1 went undiagnosed until he was 6yo and had many of the problems that you talk about.

mawbroon Thu 04-Dec-14 13:21:09

Sorry! Forgot the link


ilovetosleep Fri 05-Dec-14 18:44:22

Thank you for the reply. Yes he has had TT snipped three times with limited success. There's not really a lot more we can do. Mr Griffiths at Southampton won't cut it again, locally there is no one that will do it (an not uK anyway) it's not recognised where I am. Tbh I hang really considered it in relation to his mood, sleep or clingyness. I have however for my suspicions that it is really affecting weaning as he struggles with textures and eye very angry at the dinner table.

mawbroon Fri 05-Dec-14 21:14:38

DS1 had posterior tie, lip tie and a very high narrow palate (caused by the tongue tie) and the mid section of his face was very underdeveloped. Not that you would notice, unless you knew what you were looking for.

He was having bouts of apnoea. The distorted orofacial structure can lead to narrowing of the airways which makes them more prone to closing off during sleep. DS1 was very restless at night, he was forever tossing and turning and wriggling about, he would often end up at 90 or 180 degrees away from his starting position and I am pretty sure he was moving every time his breathing stopped. He didn't sleep through reliably until he was 5yo sad

Has anyone looked at your DS's oral structure? High palates can also restrict the room needed for the nostrils and eustacean tubes leading to ENT trouble/mouth breathing/snoring etc. Gut issues seem to go hand in hand with ties, and there are some experts looking at the relationship between ties and gut health at the moment.

Is a trip to London to see Malcolm Levinkind possible? He is a paed dentist who specialises in tongue ties and would presumably be also able to assess orofacial structure. Cranial osteopathy can go a long way in helping resolve some of these stuctural issues if they are contributing to the problems.

As I said in my earlier post, ds1 went undiagnosed until he was 6yo. It has taken 2 revisions and 2 years of orthodontic treatment, but he is now fit as a fiddle with every problem resolved. But it was a bloody hard slog!

There is a very good book by Alison Hazelbaker called Tongue Tie. It goes into detail of the problems that ties can lead to. It goes way beyond feeding and speech problems. It really can affect the whole body.

ilovetosleep Fri 05-Dec-14 21:53:35

I could go to London yes. I feel a bit like I've messed around in his mouth too much already? He definitely has high palate, diagnosed by LC. I thought he had lip tie at birth but actually seems not so bad now. Who diagnosed your DS and how do you get there eventually?

Not sure about apnoea but DS has these horrible episodes where he sort of squeaks his in breath, almost like a gasp, and breathes very short and rapidly. If that makes sense. It's almost like hiccuping but with his breath rather than his stomach, lots of short sharp in breaths in quick succession. Can happen for an hour or so and he can be in a deep sleep while its going on. I always hol him in my arms when he like this so I can be sure he's safe. It's scary. Ds1 did it occasionally too but it was never as worrying and he didnt have the other accompanying issues.

We've had some cranial with limited success but am hoping to get an appoinent next week as its been a while.

Would appreciate any further advice you have and recommendation of specialist if you can. I'm beyond tired and verging on resentful sad

mawbroon Fri 05-Dec-14 22:35:59

It was me who eventually figured out the whole tongue tie/palate thing with ds1. He was revised for the second time (1st time was not done deep enough) by John Roberts at the Cote Royd Dental practice in Huddersfield. A 400 mile round trip for us. John recommended a local orthodontist for us who has been bloody wonderful. He has just retired, but I feel lucky that ds1 got the bulk of his treatment from him. He was also an osteopath, including cranial and would regularly manipulate inside ds1's mouth to help with the palate expansion. I am pretty sure that the orthodontics would not have been so successful without it.

It is a different experience for us though with ds1 being 7yo when we started on the treatment.

We took ds2 to Dr Levinkind for an assessment but we decided not to revise. His problems were very slight compared to ds1 and I agreed with the wait and see approach. He did say that if a kid had already had a couple of revisions that he would not be keen to do another, but I am guessing that he would assess on a case by case basis. Probably worth contacting him at least?

As for cranial, I would say that you need somebody who really understands the impact that ties can have. Not everyone does. I have heard of babies having manipulation in the mouth similar to what ds1 had to help expand the palate. There are a of couple of facebook tongue tie support groups. It really would be worth joining and reading what other people are experiencing and somebody there might be able to point you in the direction of somebody local who knows their stuff.

Have you considered asking for a sleep study for your ds? I have no idea if they do them on babies that young? By the time I figured out what was happening with ds1 and the apnoea, his jaw grew massively to accommodate his big teeth (gaps appeared between 1st and 2nd inscisors) and the apnoea stopped. I think we are talking milimetres making a huge difference.

You have my sympathies dealing with all this. It broke me and I became very unwell, it robbed me of two years of my life sad. All good now though and glad to be out the other side!

ilovetosleep Sun 07-Dec-14 18:39:42

Thank you for all of that. Yes I most definitely feel broken.

Weaning is really getting me down too. Did you have any problems with ds eating solids? Mine is interested, shows an appetite, but gets so angry once the food is in his mouth. He'll eat smooth purées but I really didnt want to go down that road so I mostly fork mash or do finger food and just accept that he barely eats. Not sure if that is a sensible approach. He can eat a certain texture really well - avocado, banana, roasted squash, ripe mango, hummous on rice cake. And bizarrely, meat. But he really struggles with carrot, cauliflower, under ripe fruit -anything that breaks up and becomes bitty rather than mushy. and if he ends up with something bitty in his mouth, he holds onto it for ages becoming more and more dribbly and frustrated, then it falls out and there meal time over, he wants out. He gets really upset by it. Weirdly not a lot of gagging though. As time goes on he becomes even more of a spoon refuser. It's really straddling me out as I'm sure he's drinking more and more st night to make up for it.

Am hoping for an SALT to be able to come and observe but it won't be til new year...

Phoenixfrights Sun 07-Dec-14 21:21:13

I wonder whether food is getting stuck up in the roof of his mouth? This happens to DS sometimes and he had a severe posterior tie.

ilovetosleep Sun 07-Dec-14 21:41:37

Yes food definitely gets stuck in the roof of his mouth sad

Phoenixfrights Sun 07-Dec-14 23:08:49

If he will willingly put food in his mouth then guessing {?} it's not food aversion or anything like that.

I'm thinking about the foods you mention that he will eat no problem - ripe mango, banana, avocado, roasted squash etc. It would all go down without hardly any chewing/ moving it around your mouth wouldn't it? the rice cake with hummus not so much though, which is a bit odd.

I think with the gritty texture things you mention, you would need to really move those foods around to mix them with saliva for them to be easily swallowable, wouldn't you? So perhaps it's the moving around the mouth bit he can't do.

FWIW, DD ate almost nothing until she was 18 months old. She lived mostly on milk. I don't think this is wildly unusual in children, despite what the books would have us believe about how babies should be having 3 large meals a day from 6 months etc etc etc.

SALT sounds like a very good idea. I hope they come good with something.

mawbroon Mon 08-Dec-14 14:20:18

Agree with Phoenix re the different textures. When chewing, the tongue moves the food around into a ball and the tongue forms a little channel to guide the food for swallowing.

I didn't know that ds1 was tied when we were weaning, but looking back, it all makes sense. I used to find whole peas and beans etc in his nappies. He wasn't chewing and swallowing properly and one by one went off the foods that he had difficulty with. Anything with a slightly stringy texture like sweet potato or avocado (they are not normally stringy, but some are) made him gag. He was trying to swallow it without chewing, but the strings meant that a whole load of it went sliding down rather than just a little bit.

He also got food stuck in his palate which he couldn't remove with his tongue but that never really bothered him as far as I could tell.

The SALT will only be any good if they understand about tongue ties. unfortunately many HCPs are lacking in up to date knowledge. I noticed that you are not in the UK ilovetosleep there is a tongue tie facebook page which is international and has a list of knowledgeable HCPs in various different countries.

DS1 had a list of other problems too relating to his ties and high palate. He had reflux which he managed to verbalise when he was around 5yo. I don't know how long he had been suffering with it, but looking back, probably quite a while. He also had been suffering congestion in his ears and mild hearing loss. He had a lot of ear "infections". I think the space needed for the eustacian tubes was restricted by the high palate and they were not able to drain well. His reflux stopped after revision and sure enough so did his ear problems. I think that rather than infections, the reflux was causing gastric fluid to reach his eustacian tubes causing irritation.

In our case, no one particular thing was serious in itself, but he had so many things going on that he never seemed to be well. We used to see one consultant for allergies, another re ENT stuff, somebody else for gastric probs etc etc. No joined up thinking!!

ilovetosleep Mon 08-Dec-14 18:36:43

You both make so much sense. DS actually seems to be going off avocado after a slightly less ripe one the other day. He's eaten virtually nothing today,won't let me near him with a soon - he doesn't trust me sad

So if the SALT does understand TT what will she do - refer me to get it cut? Is there any way to deal with this without going down that path as they tend not to revise TT here as far as I know, certainly not in new borns anyway. Are there exercises Etc? He's too old anyway surely it would have to be under GA?

I'm feeling so down about it all. It sounds like you had a hell of a time mawbroon I'm so glad to hear you're through the other side. Did your second DS have weaning problems having not had TT cut? Your combination of symptoms sound so familiar - reflux, congestion etc. Do you feel sure that all of those things were related to the TT or could he have just outgrown them anyway?

I'm a wreck and I hate wishing these days away sad

ilovetosleep Mon 08-Dec-14 18:49:19

Also I forgot to mention, is it possible to be TT more on one side? DS can move his tongue quite a lot but only on one side? Wen he stixks his tongue out it goes to the right and he often chews it on the right have side. It rarely goes to the left sad

mawbroon Mon 08-Dec-14 22:25:54

I have no idea what a SALT would recommend tbh. Having already had revision there may be reluctance to revise again. There is no need for a GA at this or any age if you find a HCPS who uses laser.

It is possible for one side to be more restricted than the other, also, I am guessing here, but there might be scar tissue from the previous revisions which could be contributing to the restriction.

Re my DS, he outgrew his allergies and intolerance before he was revised, but everything else has resolved as a direct result of the revision and orthodontics.

DS2's ties have barely caused him any trouble. His oral structure is beautiful so no prob there but his speech is a little unclear at times. We may well choose for it to be revised in the future. Weaning was fine and he breastfed like a champ. His is pretty stretchy anterior tie whereas DS1's was a significant posterior. What type does your DS have? The high palate suggests posterior to me.

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