Adult Cleft Lip and Palate: An Almanac for Survivors

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This page is for adults living with adult cleft lip and palate and all the frustration, pain, and grief that goes along with that. While searching online, I found most resources were largely targeted to or populated by expecting parents, while very few helpful resources existed for adults. It’s almost like people think cleft lip and palate individuals live life normally after childhood. This page is for the people who know what it’s actually like.

Updates are archived at the bottom under the Updates section.

Surviving

I’m frustrated living with sub-par health conditions from living with a cleft palate and I’m frustrated that it’s taken me half my life to figure out even the basics of how to live even a modestly healthy life.

What I mean by all that is we fix the physical abnormalities in children so they look more normal, and that’s important, and we give them speech therapy, and that’s important, too, but we then seem to drop the ball and shew them out into society by 18 and those who don’t have cleft palate seem to think nothing more of it. That’s how it feels, at least.

We teach them how to survive but we stopped short of teaching them how to thrive.

Thriving

Thriving would be finding solutions to the things that stop us from enjoying social activities as others do and finding solutions to the frequent illnesses that hold us back. That’s what I intend this page to accomplish. I want solutions. I’ve found one so far with saline nasal rinses but it’s not a complete solution.

Thriving would be giving every cleft lip and palate sufferer a pamphlet of illnesses common to this group and regular hygiene practice to avoid those illnesses. Beyond brushing and flossing, the medicines that work best, fitness recommendations, nasal passage care, and more.

I had to figure out for myself, no doctor volunteered–or I suspect could have volunteered this information because they simply don’t know–after 40 years of living with this condition, that flu-like illnesses should be treated with nasal passage care, such as simple salt-water nasal rinses.

This was so life-changing, after flu-like illnesses every other month, that I wrote it down for posterity.

But there’s more to thriving and I’ve collected my personal tips in the section below and I hope to crowd-source more from people like you and my other visitors.

Collaboration

I want to bring all of our adult cleft lip and palate healthy living information together. All the treatments, all the preventatives, all the nutrition, all the fitness.

Please comment if you have a tip for living a healthy life with adult cleft lip and palate. You can contact me on Twitter @Shovas if you prefer that, instead. I’ll add your input here.

Tips

Let this be a crowd-sourced list of tips for healthy living…

• Preventatives
  • Saline Nasal Rinses
  • Providine Iodine Nasal Sprays (Ex. brand name Betadine)
  • Vitamin C, D, and Calcium, Magnesium and Zinc for immune system function
  • Vitamin D (especially for those in more northerly climates)
  • Dental Hygiene – Flossing (correlated with more severe respiratory illness symptoms)
• Treatments (When sick)
  • Keep hydrated (ie. water) to keep congestion fluid and therefore easier to expel
  • Saline Nasal Rinses (more frequently)
  • Providine Iodine Nasal Sprays (more frequently)
  • Blow nose often (clear congestion frequently when possible to allow draining infected mucus)
  • Reverse Nasal Passage Clearing (see section below)
  • Cold & Flu Medicines (Eg. Nyquil, Tylenol Cold&Flu; These reduce symptoms, allowing you more rest or sleep which allows your body to more efficiently heal itself, uninterrupted by symptoms)
  • Sleep Medicines (Eg. ZzzQuil; Allowing your body to rest/sleep to heal more efficiently)
  • Headache Medicines (caffeine drinkers may experience additional withdrawal pains while sick)
  • Drinking Alcohol (see section below)
• Mitigations (Comfort not Treatment)
  • Rest
  • Stretch (too much rest, especially in bed, can lead to sore muscles and stretching will alleviate this)
  • Avoid strenuous activity while energy is low (your body needs energy to heal, overdoing exercise takes energy away from natural healing; you can gradually get back into exercise by starting a very low levels of intensity and working your way up from there)
  • Steam Inhalation Therapy (for nasal congestion)

Reverse Nasal Passage Clearing

This is a little gross so I’ve added it down here. When you’re really sick and congested you won’t care that it’s gross.

I have found that blowing your nose isn’t enough. It may actually be pushing infected mucus back up the Eustachian tubes towards the ear which is worse. What you want to do is to draw down the mucus in your nasal passages, away from your ears, and ideally down and out from the Eustachian tubes, and to expel the mucus.

This is a nice way of saying snorting and expelling mucus:

• Plug nose
• Swallow (multiple times may help)
• Snort (mucus drawn into throat)
• Expel mucus (cough out mucus)

What you’re doing here is creating a vacuum that pulls the mucus from your nasal passages and provides increased opportunity for draining those areas and the Eustachian tubes leading to the ears. This is important if you simultaneously have an ear infection but is helpful to clear infected congestion, regardless.

Drinking Alcohol (Very Minimal)

The alcohol in drinks such as whisky will to some degree kill biological life, including bacteria and viruses, including good and bad bacteria and viruses, so beware: I am not recommending anything more than a shot per day, perhaps at night to help you sleep (rest allows your body to more efficiently heal itself).

Alcohol may help cleanse your mouth, throat, and, for stomach flus, possibly the gut biome.

But alcohol will also kill good bacteria and flu. So don’t think it’s magic and don’t overdo it.

If it works for you great but don’t rely on this and don’t take more than one shot per day as a treatment.

Use this as just one tool in your toolkit of treatments.

Typical Flu-like Illness

Regardless of the bacteria or virus infection, for adult cleft lip and palate individuals, any respiratory tract infection will generally follow the same symptomatic progression.

You can check this list and compare with your own:

• Onset
  • Possibly no symptoms or slight to moderate soar throat, cough, cold, or other symptoms over days or weeks
• Crash
  • Lack of energy quickly moving to fever and body aches within hours
  • Likely overnight fever, body aches, hot/cold sweats, headache, congestion, cough with fever hopefully breaking in one night or over 24 hours at least
• Recovery
  • Very strong and uncomfortable, possibly painful, muscle aches and cough; Continued congestion; Ear ache continues if ear infection
  • Over the next 3-7 days symptoms should lessen about back to normal
  • Most recovery should happen within the first week
  • Depending on immune strength pre-infection recovery may even take up to 2 or 3 weeks

Discord

Click here to join the discord chat for this page

On the off chance this page gains any traction, I’ve decided to create a Discord chat channel to foster any possible community that might find interest in discussions.

I think it could be a valuable meeting place for sharing tips, tricks, and experiences for how best to live healthy, full lives with cleft lip and palate.

I can’t promise I will personally be around or available but let’s see how it goes.

My Hope

With this page I hope to provide information to adult sufferers of adult cleft lip and palate for dealing with flu-like illnesses.

I hope one day we’ll have crowd-sourced preventatives and treatments that will allow us to live life more fully and with less sickness.

It has to start somewhere. It might as well be with us who suffer the most.

Updates

Credit: Featured Image