My son was diagnosed with this last month and I can't find any info that links it to Congenital Diaphragmatic Hernia, pulmonary Hypertension, or ECMO. If some one could point me to a web site that may help I would appreciate it!
chILD Mom
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Hi. I am so sorry to hear that you are going through this. I do understand your frustration as there is so little good information out there, but know that you are not alone in this. I am mom to a 4 year old little girl with interstitial lung disease. She was diagnosed as a newborn, and while she did have respiratory failure as a baby and was even considered for ECMO at one point, she survived without the help of the ECMO machine. Still, the lung damage she sustained during that respiratory failure left her lungs permanently damaged and scarred, and this is the cause for her ILD. My guess for your son would be something similar, that the original injury left his lungs damaged. Have you joined the online group for parents of kids with ILD yet? That is one of the very best resources I have found. Great group! Also, if you ever want someone to talk to, or if I can help in any way, please feel free to contact me (avk713@yahoo.com). Hope this helps.
http://health.groups.yahoo.com/group/chILDparentssupport/
lilginny
You can go to AARP.org and type in congenital diaphragmatic hernia and pulmonary hypertension and it will give you results that can provide you with info. I hope this helps you find answers you need and you can go to webmd.com as well.
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i will record all indications i understand. examine all of them. in case you detect which you have 3 of the indications I record, please circulate on your well-known practitioner and ask him in case you have lung ailment: one million. Shortness of breath or dyspnea which usually occurs with workout and can intervene with each and every day events. In extreme circumstances, shortness of breath can happen mutually as resting. 2. Cough with or without the manufacturing of sputum 3. Coughing blood 4. Chest soreness. this might or might not be pleuritic chest soreness (it is soreness that worsens with the strikes of respiratory) 5. Noisy respiratory, the two wheeze or stridor 6. napping unusual long sessions of the day 7. not hungry 8. loss of weight 9. Cyanosis, a bluish discoloration of the lips, tongue or hands