| "I got Brady's Doctor to write a letter which we carry with us all the time. It outlines Lymphangiectasia and it's consequences and how it's affecting Brady and what treatment is being undertaken. It has come in very handy when we've had to go to the emergency dept (especially if it's not at the Children's Hospital) we just hand the letter over and it gives the triage nurses and doctors a better idea of what they're dealing with. It is also useful if we have had to go to the local Doctor for a minor ailment they feel more comfortable after reading the letter and are not so likely to send us on to Emergency. It also came in handy when Brady started Childcare, and we sent it to our insurance company when we were trying to get Travel Insurance. It is also worth keeping an eye on the childrens teeth. Brady's have de mineralised due to the extra loss of calcium in the early stages before he was treated. He now sees a dentist every six months and we apply a Recaldent (tooth Mousse) Daily which has improved the look of his teeth. Hope some of this helps. Helen (Brady's Mum) |
| My though is "take charge". Be involved with the health care of your child or yourself. Learn as much as you can and try to work closely with your doctors. Never assume anything. Listen to your inter voice, if it doesn't feel write, it's usually not. And never think "this is the way it will be", time goes by and things change. You are not alone. Don't be afraid to reach out to someone. They may be able to give you what you need. Even if you don't know you need it. My son used to complain of his legs hurting and he wouldn't run. We also couldn't get him to walk far distances. When he fell ill we were told that he was malnourished. We were told that when the body isn't receiving the protein it needs it will start to break down its own proteins. It will start with the muscles. As a parent you would think you would be able to see if this was happening. You see your child everyday and this change is so subtle. If your child tells you something is different take the time to investigate what and why. Even the littlest detail is worth the time and effort. Even if someone tells you they don't know. Don't dismiss it. Find an answer. I didn't. At the same time remember we can only accomplish that what is in our means. Alecia, Dylan's Mom |
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Thoughts From Parents and Caregivers
Little Leakers
