Thank you soo much for all these wonderful information! I am mum to an adorable 11 month old child with DS Syndrome and I feel like I have wasted soo much time with my daughter.

I have resolved to begin taking all the steps you have recommended.

However, we live in Nigeria and do not have access to a lot of the medication (none of the Pharmacies i have visited stock Nutriven D) and professionals (e.g i am unaware of any qualified non osteopath craniosacral practitioner).

Do you have any suggestions on any DIY remedies I can try?

I am DESPERATE to give my daughter the very best support available.

Thank you again for sharing these information with everyone.

God bless you!

{Joyful, do you have access to any vitamins? A first step would be to give your daughter antioxidant vitamins and minerals (Vit. C, A, E, Zinc, selenium). Can you get Cod Liver Oil? -Miriam]

http://www.talktools.net is a great resource for oral motor therapy. They have a great book on Jaw Strength.

Hopefully others will chime in also!
~ Qadoshyah
Sister to 10 siblings including boy(DS)/girl twins – Feb. ’05
qf @ gotdownsyndrome.net (remove spaces)

Xervier is 2 and we do a lot of the preventive work that you noted
(antioxidants, nasal irrigation, sucking the mucous out). We also do some things that you did not mention (homeopathics, probiotics, outer ear hygiene with 3% hydrogen peroxide). In Chinese medicine the small intestine is linked to the eustachian tubes (which drain the middle ear). It is felt that if the gut does not function well then the child will be prone to middle ear infections. This is one of the reasons that Xervier is gluten-dairy-colouring-preservative-additive free and has a low sugar diet.

We are completely paranoid about ear infections. If Xervier has significant amounts of mucous or a prolonged cold we wisk him off to the doctor to check his ear drums. We have been known to do this twice in the one week when there was some fluid detected.

The MOST important thing we have done however is to get regular Osteopathic cranial work done on Xervier from birth. We believe this has many benefits but one is how well his middle ears drain. More importantly, it can be used in acute cases to drain fluid from the middle ear.

Xervier has had 2 middle ear infections. In the first case the middle ears filled up and one of the drums began to bulge. In the second case a fluid level was detectable but there was no bulging. In the first case we used antibiotics while continuing (and increasing) his probiotics. In the second case we just doubled his probiotics and kept up the nasal hygiene. In both cases however the fluid did not drain until the day after he had a cranial treatment designed to promote drainage from the middle ears.

Xervier’s 2 year old hearing tests show perfectly normal hearing. We hope that as he gets through the next few years the growth in his skull will allow us to be less paranoid about his hearing.

A good cranial osteopath will not prevent you from getting tubes if they are justified but they may prevent you ever needing them.
Cranial osteopaths can be found through: http://www.cranialacademy.com

Xervier had a cranial treatment every month from birth until he was about 20 months old. He is now getting a treatment every 8 weeks. He has also had regular mechanical osteopathy at the same frequency. The change in frequency with the cranial osteopathy came shortly after we started the CMF protocol. Xervier’s cranial osteopath described a sudden change in which the “potency” had come in to his system, ie. the “energy” which organises his nervous system. From a cranial osteopath’s point of view this is a good indicator of improving development in the whole body, particularly the nervous system.

WARNING: don’t try talking to your doctor about “potency” or the “energy that organises your nervous system.” Even many regular osteopathic physicians are going to balk at that.

Another caution is about timing of treatments in an acute case of otitis media (inflammation and fluid in the middle ear). I am a cranial therapist but much less skilled than the osteopath I take Xervier to see. However, each of the treatments that has cleared his ears has been done by me after he went to sleep in the evening. When your child has bulging ear drums you need to get them treated NOW. Don’t make an appointment in a weeks time
with a busy practitioner or wait for your regular appointment in a couple of weeks time. Get an appointment immediately. It may be worth your while finding a cranial practitioner who is NOT an osteopath as a back up (many massage therapists do similar work). If you can find one who will do house calls you are even better off. You can find good non-osteopath craniosacral practitioners through: http://www.iahp.com/ Make sure you look for one that has done quite a few courses.