#Like I feel like I can't properly air my concerns with him because he regularly interrupts my train of thought before I can even finish it

[sazzieem-blog]

All Tied Up

The last few weeks in mummy madness has resulted in a bit of a learning curve in the world of 'ties' notably tongue ties, upper lip ties and inner cheek ties. The formal medical term for these are frenulums which refers to tissue in the body that inhibits movement.

So this story begins with the youngest member of the hatter household struggling with reflux and constant wind pain. Our GP started treatment for the reflux using a proton pump inhibitor which has had some success. But the poor little fellow has still been in agony with wind pain and even now at 3.5 months will rarely sleep longer than a 3 hour block.

So cue our 8 week check up with the child health nurse. I raise my concerns about wind, the nurse suggests using some natural anti colic medication and seeing a lactation consultant (the little guy is exclusively breastfed). 2 weeks later, we see the lactation consultant. She does an examination of his mouth and his attachment during feeding. She notices his upper lip curling up and a clicking sound, both demonstrating he is not latching well and is essentially eating air. She believes that ties are causing issue but suggests to try chiro to see if that frees up his tongue at all and improves feeding. She also has a theory that he is filling up on air and not milk hence the sleeping issues.

After one week, three sessions of chiro and no improvement to feeding, the lactation consultant refers us to a paediatric dentist. The dentist examines young master's mouth and takes some photos. She explains that he has a posterior tongue tie, an upper lip tie and cheek ties. She also says there is other evidence that the ties are affecting feeding. My boy has a sizeable 'milk blister' on his upper lip which the dentist explains is like a callous from his lip rubbing against my skin because he keeps slipping. He also has a strong gag reflex (caused by the fact the tongue can't lift to block and protect the throat) and a build up of milk on the back of his tongue.

The dentist suggests a procedure called a frenectomy where the ties are released by being cut by a laser. She explains that the existence of tissue alone is not sufficient to warrant the procedure, but there should be an issue that needs resolving (in our case feeding) and the thickness of the tissue. The thicker the tissue the greater the restriction (not the length of the tissue which many doctors base their findings on). Other issues that can be caused by ties include tooth decay (from thick folds of skin preventing a toothbrush from accessing the tooth), bite formation (as the thick tissue can pull on the gum and cause teeth to grow at abnormal angles) and speech from being unable to open the mouth or use the tongue properly in forming words. The diagnosis and treatment of tongue ties for feeding is a relatively recent phenomena, as in the past they were only looked at if the child had speech problems. We book in the following week for the procedure - at this point young master is just over 3 months old.

Day One - Thursday

Young master has his procedure. As part of the procedure, they place goggles on his eyes (like what happens to us at the dentist so the lights do not hurt our eyes) and swaddle him. He is in the procedure room for 10 minutes total. Afterwards he feeds really well and sleeps. As predicted by the dentist, four hours post surgery he becomes irritable so we give him some panadol and nurofen and regularly repeat the dose of panadol. He seems a lot more relaxed. We start stretches six hours post surgery. They are easy enough to do but he does not enjoy them. As the day progresses, he becomes a bit lazier with his feeding and is not attaching as well and is also very gassy and distressed from that. We still do not sleep well.

Day Two - Friday

So many smiles! I have never seen this little guy smile so much. He is still a little bit lazy with his feeding but massive improvements from before. Still struggling with his wind. He has a good session with the chiro in the afternoon. The surgeon calls to check up on him and suggests maintaining pain relief. We did however manage a three and a half hour block of sleep, possibly one of the longest sleeps in a while.

Day Three - Saturday

From reports by other mums, day three is the worst post operatively. Our experience is consistent with this. Following chiro in the morning, the little guy is very distressed and unsettled most of the day between wind and pain. In the afternoon, I commence regular dosing of panadol and his mood gradually improves. His pre bedtime feed is probably his best yet (really good attachment) as are all our feeds overnight. He averages about 4 hours sleep between each feed overnight.

Day 4 - Sunday

We still continue stretches. Little man is super cuddly but on the whole seems to be feeling a lot better. His feeding really well and seems a little bit less distressed over his stretches. His wind also appears to have improved. I also notice that the milk blister on his upper lip has started to harden and reduce in size. Yay!!

So as I write this post we are still halfway through day four so I will endeavour to provide further updates as recovery continues. Interestingly, throughout this process I have discovered that there is a lot of division in the medical community about ties. When we were in hospital last week, I mentioned the wind and feeding issues to one of the paediatricians who was adamant that going to the dentist was a waste of time and his wind was from lactose intolerance. I have included an article below from the Australian Breastfeeding Association which claims that genuine lactose intolerance is extremely rare and most diagnosed intolerances are either to the cow's milk proteins or secondary intolerance. As I have already eliminated dairy from my diet under advice from GP to help his reflux (which has not seemed to have had much effect) and I rarely eat other allergens as my husband is gluten intolerant, this does not seem a likely issue. I had so many feeding issues with my first child including nipple grazing, supply issues and reflux, which are typical issues associated with ties. I wonder with better education, if I could have avoided these issues had ties been assessed and diagnosed earlier. It frustrates me to think the stress I endured may have been avoidable.

Further information

The lactation consultant directed me to the work of Dr Palmer and Dr Ghaheri - both doctors who have done extensive work and research around ties and the issues they can cause. I definitely found some interesting articles and blogs here.

The Australian Breastfeeding Association - I always find their articles very informative. I have included links to an article about ties and another about intolerances of breastmilk given how both seem to inform diagnoses of reflux and wind.

The Australasian Society for Tongue and Lip Ties. As outlined to some extent in my post above, the treatment for ties is multifaceted - we will require the support of chiro and lactation consultants going forward as my baby now needs to learn how to use his tongue properly for the first time since it developed in utero. Furthermore, the issues ties cause can require treatment by various specialists (dentists, speech therapists, orthodontists to name a few). ASTLiT endeavours to link these groups up and provide upskilling and best practice. The dentist who treated my son referred to their guidelines regarding diagnosis and stretching. I also experienced the benefit of having practitioners on the same page with the relationship between my lactation consultant, chiro and dentist.