Beyond Achondroplasia

Growing together with Clara

Breathing better

Clara has been using the CPAP and also a oximetre to check on her oxygen levels, all night long, since she was 3 months old.

At the beginning, one of the hypothesis for her to improve from the apnea was to perform a tonsillectomy (removing the tonsils), but our ENT doctor sayed that they weren´t enlarged so it would be unfounded to do that surgery. The tissues around her back side of the nose (the oropharynx) were enlarged, and nothing else. And well, the CPAP worked just fine.

Clara only wear the CPAP mask after falling asleep and when the oximetry dropped below 90% or if it was always low like 94-92%. And for 4 to 6 hours (she woke up to nurse two times each night), she wear the mask.

Then, 5 months later, around late April, early May 2013 (when she was 8 months old), the oximetry levels during the night started to be better. And the CPAP mask started to be used less and less. Clara started also to roll a little bit over herself too, not sleeping completely belly up.

Meanwhile, in the first days of June (when she was 9 months old) we went to Spain (Gijón) to get to know Alpe Foundation and to learn more about achondroplasia first care.

Those 3 nights we slept in the hotel, the oximetry was always around 98% (so very good). She didn´t wear the CPAP mask for a minute there.

After talking about  Clara´s diet with Foundation Alpe pediatrician and with Carmen Alonso, I was advised to stop eating dairy and drying milk once they believe that the allergens existing in dairy products, would worsen the apnea by causing some back nose tissue edema, and therefore, great airway obstruction. This because I breastfed her! The potencial problem is not the milk lactose but dairy proteins that are be very allergenic.

Recognizing and Managing cow´s milk protein allergy – read this article

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One probable alergy sign of dairy products is otites media

Even without haven´t found scientific proof of that at that point (still searching), why not trying? I thought about leaving dairy products before, but I didn´t have a very good reason for that, since I enjoyed very much eating them. And drinking milk really doesn´t make any sense for a person over 3 or 4 years-old, so the experiment started!

Even loving milk, I stopped drinking it and also stopped eating cheese and beef. And since the 10th June 2013, I feel good. Well, even better!

And Clara keep sleeping without the CPAP mask. She breathes much better now and one important event: she sleeps on her side or stomach down. I think that the sleeping position has an important role on this issue.

I really don´t know for sure what has been the main motive for the breathing improvement, but even wanting to confirm it, it´s very good to go through every night without been worried, and without the oxymeter alarm always triggering and without having to put her the mask. And she wakes up beautifully, ready for each new day with a bright smile!

Now, we are waiting for the 3rd sleep study, to evaluate the real status of her apnea. Now it seems moderate and not severe as it was before.

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