Toddler has not gained any weight

[PickledLily]

I know that growth slows once they start walking, but i realised yesterday that my nearly 2 year old is the same weight as she was 8 months ago. She's dropped nearly 2 centiles. She has grown in height; DH thinks she's just 'stretching out' but I'm worried she's not gaining weight. She's a fussy eater and sometimes misses meals as a result, but that's normal for toddlers, isn't it? I'll ring the HV tomorrow anyway, but am I over-reacting?

Anyone?

Ds had this and was also snoring lots turned out he had huge tonsils so lots of things would make him gag or he would just not eat. He had them out in January and his eating has definitely improved since then. Just something to check.

I think it's great you are asking your health visitor. I think the general rule of thumb is that they prefer them to stay within two centiles of their normal curve so she's within that.

I read an article (think it was Dr.Jack Newman but can't find it atm) saying that you should look at not just at your toddler's weight but things like whether they are they growing in length? are their nails/hair growing? are they meeting milestones etc.

I hope the HV tomorrow is helpful. Try not to panic.

I would take to your gp for a review and then they have baseline weight and height. take a urine sample with you to get that checked and a food diary for a few days would be helpful too along with notes of any diarrhoea. It's most likely nothing but having a quick check at dropping 2 centiles wouldn't be a bad idea.

Thanks everyone, it was preying on my mind last night.

Interesting you mention tonsils as GPs have commented in the past how large her tonsils are. She often (but not always) breathes through her mouth at night, so I will ask about this.

You ask about other factors - DD's hair is growing at the rate of knots, but her nails are always splitting, so guess that might be a vitamin deficiency. DH and I are both tall and slim, so it's possible that she is just stretching out, however she has a few ailments that in themselves are quite minor but I can't help thinking that they all add up or are related (silent reflux which is medicated, constipation, a small patch of eczema, glue ear). DH isn't convinced and thinks she's generally fit and healthy, which I suppose she is, so it just makes me think I'm just going crazy and am over anxious as a result of months of 'is that silent reflux or isn't it' moments!

Sorry, a bit of a ramble.

I'll see what the HV says today.

How is her reflux now? Is she under a paed for it?
If not I would push for paed referral from gp as they can help with high calorie milk (which I actually saw in boots yesterday paedisure I think it was its newly available to buy £10 for a big tin) try that and see if it works.
My ds has terrible reflux to this day he will be 4 in September. He is fed by a feeding tube in his stomach to give him around 800cals to prevent him from losing weight as he eats very little. He only just managed to double hia birth weight in a year and then he started to lose it again by 18months. At 18months he went for surgery to put the tube it. I cried when he had his first 'feed' through over thr night 15oz of diarolyte as there was no way he would drink that much in a week never mind over night!

Also reflux+constipation+eczema could be a sign of an allergy
When did she last have meds updated?
silent reflux hurts and could be a reason for not eating as they figure out if I eat it hurts.

That sounds very stressful isitme, and such a long time for him to suffer before getting treatment. How is he coping with the tube?

I struggle to get doctors appointments, let alone a referral although she is seeing a consultant for her glue ear. She's only on ranitidine because an out of hours doctor prescribed it - my normal GPs were a bit when I told them. I got her weighed last week as her ranitidine dose has been the same for ages, which is how I realised she's not put on weight. Unfortunately haven't been able to see an HV since going back to work as they only work/hold clinics the days that I do helpful.

She has turned into a milk monster - I am trying desperately hard to wean her off the boob, but she has other ideas - so maybe her reflux is worse than I thought. The awful thing about silent reflux is that it's so difficult to know if they are suffering. Everyone looks at me like I'm mad when I suggest it, so I think it can't be that bad. I normally judge based on how much she wakes at night (was 1 - 3 hours until recently) and how bad her cough is (it's now gone) as I can't tell during the day what's a tantrum and what's reflux induced.

Allergy thoughts are interesting. Lactose seems unlikely due to constipation. She's been tested for coeliac but was negative. Was going to start a dairy-free diet but am just trying to work out where to start and am nervous about doing it without some support given that she's such a fussy eater.

Dh always thought ds waa 'fine' he worked abroad andsaw him for at least 8months silent reflux is worse than full on reflux as it causes more damage as the acid is still going up and down the food pipe (osphegus or whay ever its called)
You can hear then gulping when they silent reflux. They look like they are in pain too and then they are horribly moody due to pain.

Hes currently hooked up to his feeding pump. I was toldby hcp that he wwould have died if he didn't have the tube put in as he waa eating no food (got him to have syringe full of blended food at one point then he went off it) and was surviving on 2oz of milk a day.
Can you buy some lactulose to help with constipation and buy some of the high cal milk and see of that helps? Otherwise really push for referral to paeds.
It took us 18months to see the right paed. Where abouts are you?

Cough most of the time is due to reflux. All that crap coming up and down and sitting on their chests (as hcp told me)

I should read posts properly!
Is it a paediatric consultant or ent paed? If it's paed consultant you could ring their secretary and express your concern and hopefully see them in clinic to sort things out

ps im on my phone so please excuse the typos!

How is she doing today? What did hv say?
Ds has been refluxing a lot more. Hes come down with a high temperature a d says his tummy hurts where his tube is.

Your poor son. Reflux is such a horrible condition.

Thanks for asking about my DD. I started up her day time dose of ranitidine again today and got her weighed at baby clinic this morning. She HAS put on weight and is still on the 50th centile, where she should be. What a relief. Very cross that our surgery got her weight wrong (only out by 1.5kg ).

But it does mean that DD's ranitidine dose must be way out, which will explain a lot about not eating/wanting lots of milk. I feel awful to have let her suffer. It's so difficult to take the time off work to get her weighed every month and then an appt to get a new prescription.

We are waiting for an appt with the consultant for her glue ear/hearing test (he specialises in ENT and paediatrics, so I guess that makes him a Paediatric Consultant?) so will ask about the reflux at the same time. But should she be under consultant care anyway if she's on ranitidine?

I hope your little boy improves.

They might just want her to be seen at the gps for followup every now and again but I would push for her to be seen by paed at least every 6months so your not taking up their time but still have the expert at hand when needed.

Currently sat at gps waiting to be seen.
Ds has been really ill. High temp, dislike of bright lights, head aaches, vomiting, his neck hurts and hes very drowsy. Reminds me of when he had meningitis when he was a baby. We've been sat here an hour! this is there emergency appointment!

An hour?! That's ridiculous. The NHS is so broken. My first thought was meningitis when you listed the symptoms. Very scary.

Keeping my fingers crossed for you x

Thank you. He just keeps crying mama my head hurts and then points to the other places that hurt. Ds2 is a little bored and dh is at work. My dad will hopefully be a long soon to lend a helping hand

my gp is ridiculous. He sees me and says
hes not poorly, its your fault hes like this as he doesnt like drs as you take him unnecessarily.

My reply
his gastric dr and paed Don't feel the same way and they have said he is ill.
Hes full of soo much crap.
I had pnd with ds 1 (are you surprised with all hes been through) due to bad birth so I was supposed to go on anti depressants (I had a few months worthr

Sorry got called in.

He wants his urine checking. Hes really constipated too he can feel the stool and if his urine is clear he will have to go hospital
So now I have to go home, put his feed on and a urine collector bag which he won't like and wait for him to wee.

OK, you mention the following:

Fussy eating
Tonsils
Mouth breathing
Silent reflux
Glue ear
Milk monster
Night waking
Coughing

DS1 was remarkably similar, not so much at 2yo but more like 3-4yo.

When he was around 5yo, I read on here that there was a link with reflux and tongue tie. I dug and dug online to find information about this, there wasn't much but I found a tongue tie support facebook group where there were many others suffering similar. Eventually, I pieced the whole thing together and found that pretty much every problem he had was related to the tongue tie.

Fussy eating - he could not chew and move the food around his mouth properly because of the restricted movement. He rejected anything that needed more than a few chews such as meat and textures like sweet potato which can sometimes be stringy, meaning that if he swallowed some of it without chewing properly, a whole lot of it also got pulled down by the stringy bits.

Large tonsils - they actually turned out to be normal, but they looked huge because the back of his tongue was tied tightly which meant I could see the whole of his tonsils without a tongue depressor.

Mouth breathing - he also has a high, narrow palate, which is the result of the incorrect swallowing action of the tongue. The tongue smooths the palate in utero and beyond and ties can affect the shape of the palate. The high palate encroached on the space for his nostrils which caused mouth breathing.

Silent reflux - he verbalised a burning in his chest and being sick in his mouth when he was 5yo, but I suspect he was suffering from this for much longer. He was swallowing down a lot of air when he was eating and drinking and this would come up and bring the stomach contents with it. He had an endoscopy, but all it showed was irritation from the reflux. I guess it's not technically reflux which is usually caused by a weakness in the sphincter at the top of the stomach, but almost identical symptoms, none of which were relieved by the usual self help measures. He was also very bloated and windy as a result of the air he was swallowing.

Glue ear - for around 2 years, he had congestion, noise and hearing loss. This disappeared shortly after his reflux stopped which makes me wonder if there was stomach fluid being forced into his eustacian tubes. Again, the high palate restricts the space available for the tubes meaning that they don't drain properly.

Milk monster - he wanted to feed like a newborn a lot of the time. I think the milk soothed the pain from the acid. I hadn't planned to nurse him for nearly so long, but it was clear to me that he really needed it. Not as in nutritionally, but as comfort and relief from the pain.

Night waking - he was a nightmare. He woke several times a night until he started at school aged almost 5yo. He did have some bouts of apnoea too, related to the high palate.

Coughing - he had a persitant cough for months on end. The docs kept banging on about an inhaler, but I knew it was not an asthmatic cough. The cough stopped as soon as the reflux disappeared.

Sorry for the essay! There were more things going on with him too - allergies/intolerances, orthodontic problems, underdevelopment of his mid face (not that you would notice unless you knew what you were looking for), curve in his neck, possibly from the tensions caused by the ties which had a knock on effect on his hips, knees and ankles.

He had his tongue revised and the reflux stopped overnight. It turned out that it was not revised completely, but it was enough to stop the gastric problems. A few months later, we saw a dentist who specialises in ties and he revised it properly and referred us to a local dentist. He is now 1.5years into early orthodontic treatment (he's 8yo) which has started to widen his palate and draw out the mid face. Every single one of the problems I have listed have disappeared.

Could your dd be suffering similar? Ties are not always obvious unless you know what you are looking for. DS1 had a whopping lip tie too.

Other problems associated with ties that I haven't mentioned are breastfeeding problems (ds1 was very inefficient but thankfully I was never sore), speech problems, dribbling, dental problems - sometimes the tongue cannot reach all the teeth so can't "sweep" them clean. Also, some upper lip ties can form pockets which retain milk and food. This can cause decay on the front teeth from the prolonged contact with the surface of the teeth.

Jeez, sorry this is such an essay! There is virtually no knowledge of all this in mainstream healthcare. I hope that sharing our experience can help people who are in the same boat. I was incredibly frustrated that we saw one doc for the gastric stuff, another for the ENT stuff, dietician for the fussy eating, another for allergies etc. There was no joined up thinking!!

Thank you so much for posting mawbroon.

I am really struggling with convincing other people (and myself, I think) that DD does actually have a real issue here. So that is really useful to have the symptoms written down with the problems your son had (so sorry to hear he's had to go through it too). There are lots of things that aren't 'quite right' with DD, that don't look significant in isolation but clumped together fit a diagnosis of tongue tie (together with the problems breastfeeding DD). But because DD isn't 'ill' and IS gaining weight (now i've had her weighed properly!) and there being nobody who can diagnose her now she is 2, I'd put it to one side to focus on things that can be 'fixed'.

I've done quite a bit of reading online too and tried to get a lactation consultant to assess DD for tongue tie, but it wasn't possible because DD was too old. It seems there is only one option for toddlers - a paediatric dentist (Malcolm Levinkind?) in London - which is not local for us otherwise I'd have seen him in a shot. Was he the chap that finally treated your son?

Also, an under-developed mid face - I've not heard of that before. What does it mean/affect? Also the bit about tensions is interesting. DD has had osteo which helped her restlessness, but I didn't realise it affected knee/hip alignment (although thinking about it, it does make sense).

I don't have time to post everything I want to in reply just now, but I'll be back later!

I've uploaded an xray of ds1 before he started his orthodontic treatment.

I did not notice any of this looking at ds1's face, but before he'd taken it, our dentist (who is fabulous) pointed out that ds1 had hyper curvature in his neck and was flat across the cheeks.

If you look at the x ray, you will see that the bone structure behind his nose and cheeks is indeed very flat. He also pointed out that the angle of his bottom jaw is very steep and the jaw was beginning to lengthen from hanging open mouth breathing all the time.

He sorted out braces to expand the narrow palate and bottom jaw and headgear to wear at night which is bringing out the top jaw, lessening the flatness. This opened up his nostrils and it was only a matter of weeks before he stopped snoring and mouth breathing. At the start of the treatment, he could not put his bottom teeth behind the top ones. Now there is a significant overjet which will be remedied by attaching the bottom brace to the headgear and bringing it out to match.

Another problem which I didn't mention was that he was tongue thrusting. When you swallow, the tongue is supposed to go to the roof of the mouth only. DS1's tongue was going forward and sideways when he swallowed because the back of the tongue could not lift and there was nowhere else for it to go. Tongue thrusting can push teeth out of alignment over time. He has now stopped doing that since he was revised.

Our dentist is also an osteopath, including cranial osteopathy. He straightened out ds1's neck/hips/ankles and regularly manipulates inside his mouth to help with the palate expansion.

Sorry, another essay!!

It was John Roberts in Huddersfield who did the revision. I have heard lots of good things about Dr Levinkind but have no personal experience with him other than an email exchange about ds2.

We travelled a 400mile round trip to see somebody who knew what they were doing! Well worth it in our experience.

I know exactly what you mean about none of the symptoms on their own being particularly bad, but the whole picture has a lot going on! I was poo pooed by docs when I mentioned that things were related to his ties, but I know that it was worth persevering and getting to the bottom of it all. I remember being dismayed that the first thing the paed said about his gastric problems was "it may be that he has to take these drugs for life" I get so annoyed when docs push drugs as the only answer

Sorry, pic is on my profile, it should be public.

Wow, what a journey, your DS has really been through the mill.

How did you find your dentist? He sounds fantastic! My dentist said DD didn't have a high palate, that it looked normal and that she didn't have TT. However I have also spoken to Charlie at Milk Matters, who thought it pretty likely DD has a PTT and a bubble palate . My husband thinks I'm looking for something to be wrong, so it's not easy to get a view on what is and isn't really a problem. For example, with food, DD won't eat rice but has been known to eat it at nursery (but not always). Is that just fussy eating or is she having problems but was just really hungry the day she did eat rice? Who knows.

I've taken DD to a cranial osteo and asked about TT, but she wouldn't check if DD had TT - she wanted to focus on tensions and because DD's teeth had come through, she didn't want to get bitten and wanted to build up DDs trust before rummaging.

Another thing - lots of constipation. Did your DS get this? But could be due to the volume of milk DD is drinking. Was going to try giving up dairy next, but guess this isn't addressing the underlying cause.

Isitme1 - I've pm'd you!

Our dentist really is fantastic! He is a friend of John Roberts and it was just good luck that we live in the same city! I had asked the NHS dentist about ds1's high palate and all I got was a shrug and oh it's not a problem. Without intervention, ds1 would certainly be looking at multiple extractions as a teen and goodness knows what his teeth would be like if the tongue thrusting had continued. This early treatment may even avoid the need for fixed braces later on, or if he doesn't avoid them completely, he may have to wear them for a shorter duration.

DH didn't know what to make of all this. He thought I was "making" ds1 ill by taking him to doc with endless problems and keeping him off school etc. What I was doing was listening to the poor child and what he was telling me. He would seem to be ok at school and friends' houses and the like, but I am fairly sure he was either too distracted to notice how he was feeling, or was just getting on and not making a fuss. It wasn't until John gave us a report on ds1's orthodontic requirements that dh started to listen to me. Basically, I had already spotted the dental things that were not quite right. I have no background in health care, I had just done a heck of a lot of reading!

One huge price that we paid as a family was that with the stress of having discovered all this and not knowing where to turn to, I developed serious mental health problems which dominated our lives for almost 2 years. On the right meds now and all good, but jeez, it really is stressful, especially when those around you are not supportive.

He didn't ever have constipation btw, quite the opposite. He had a horrendous stomach bug as a toddler which left him intolerant to dairy for several years, resulting in sloppy poop, even when he was dairy free. All outgrown now and his poo is normal as far as I know (I don't see it very often thank goodness!)

Sounds like your cranial osteo is perhaps not as knowledgeable about ties as they could be. You can do cranial osteopathy until the cows come home, but if the source of the tension is not removed (ie the tie released) then the tensions will remain.

I will upload pics of ds1s ties before treatment to my profile, just for comparison.

Jings, another essay! Sorry!