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Thank you both. He has a clinic appt. on Thursday. I am also noticing that after he eats a meal, his blood glucose will shoot up between 160 and 180 one hour after eating and then usually will be down to normal ranges by hour 2. I was told, (not sure if true) that a non diabetics blood...

My son tube feeds 12 hrs. a day. About a week ago he was just not himself, hot, sweating, stomached ache, just out of sorts. I decided to check hiis blood glucose and his # was 58. It was about 2 hrs after his feed. We have since been taking in the morning and randomly throughout the day...

The trust bring set up for my son is based on a lawsuit settlement and in fact will be a special heeds trust according to the paperwork I have. It says special needs trust. either way, lefty, I wish you luck.

Hi lefty, I have experience with a special needs trust being set up for my son. He has cf and autism. Almost 2 years ago he was attacked by a dog being injured and his service dog was almost killed. Our lawyer is setting up a trust, and it is alittle tricky. I had to fill out a paper...

Hi Steve and Melissa, we are home finally. Jacob is sleeping right now and is completely pain free. No more narcotics, thank God. He has a follow up tomorrow with his pediatrician and a follow up with the surgeon in 2 weeks. Thank you you for the well wishes and for sharing your...

Hi Melissa75, the surgery went well, though still a lot of pain. If all goes well, they will pull the tube today and make sure his lung stays inflated. Going home hopefully late today or tomorrow. my son has platelet dysfunction disorder. He has enough platelets, but they don't stick...

Thank you both for the replies and well wishes. Unfortunately after seeing the X-ray taken today, he was admitted and will be having surgery to have a chest tube put in. It has gotten worse and he is now moving no air on the right side. there is a huge concern because he has a bleeding...

My 17 year son went in on Tuesday to have a port placed. An outpatient procedure that was to last 45 minutes took over 3 hours and 3 tries to place and caused a phenuothorax. He was admitted and they went back and forth on whether to put in chest tube. Though it hasn't improved, he wasn't...

Enzo, you can always ask your doc., but I would think because they are normal, they would not treat it. I know when they were checking my sons level, because he has severe osteoporosis, and this can be caused by low testosterone, I did read a little about it. My son had 0 symptoms, besides...

Hi Enzo, my son had these same tests recently also. All of your levels are in the what is considered normal range. Your results as far as I can tell are normal. As you can see from the test total there is a large range for what is considered normal. All of your values fall in the reference...

My son will be having a port placed next week, and I'm getting a little nervous. He also has a bleeding disorder, which makes this a little more of a big deal. The surgeon is very confident and they will have blood hanging and ready to go if needed. he will come home same day as long as there...

It sounds like digestive wise, you are doing well and really have no need to avoid gluten. It really sounds like emotionally you are not really wanting to give up gluten either. In your case I would say, I don't blame you. Because your girlfriend is gluten free, I can understand her...

To be honest if he did not have celiac and autism, I would not have him on the diet. Without the need medically and behaviorally, I would see no point. I have a daughter, and she is not on the diet, and neither are my husband and myself because we are not having any adverse reactions to gluten...

To be honest if he did not have celiac and autism, I would not have him on the diet. Without the need medically and behaviorally, I would see no point. I have a daughter, and she is not on the diet, and neither are my husband and myself because we are not having any adverse reactions to gluten...

My son has been gluten free for 10 years. He has cf, autism and celiac disease. The diet for him is not a fad, but will be a lifetime must. The diet has been a blessing for him. He is so much healthier because of it, and happy. He does the diet for medical and behavior necessities. I will...

Hi Beautiful soul, I have missed you on here. I am so happy you are doing so well and are celebrating your 7 year lung transplant anniversary. You are truly an amazing young woman and an inspiration to many on here. Congratulations on your recent engagement. Take care, hope to hear more from...

Hi fel, my son has cf and celiac disease. Since you can't get into GI for a couple months, call his cf clinic and ask them to give you a lab slip to check the celiac markers in his blood. Now this will not give a definitive answer, but it will be the first thing the Gi doc will do if celiac is...

I think with as busy and burnt out you are becoming, of course cooking has become a huge chore for you. I think the crock pot and slow cooker can be a great friend to you right now. You can put something on early and not have to give it a second though until dinner time. Plus with so many...

Hi Gammaw. My son gas autism with a severe anxiety disorder and hysteria is putting it mildly with him when he is having a procedure. I have found that telling him about a week in advance with a promise of a special prize after it is over with no fighting, kicking ect. , works great for him...

Have a few questions for those with Pic lines. How long has/had your Pic line lasted before needing to have it removed or replaced? Anyone make it a year or longer? For anyone who had to have a Pic line changed out, how long does that take, what is involved, and how does it compare to the...