[QUOTE=Jenn4508;3292132]I am so sorry for what you all are going through. I know exactly what you are talking about. I will tell you when my son was born, he is getting ready to turn 20, he started out at 3 months with problems. First he was diagnosed with asthma. He was taking all kinds of meds, on a nebulizer..... everything you could imagine. Finally, I told the pediatricians, If you can't help him, I will. They found a specialist to do the bronchoscopy. It was supposed to be outpatient. He was 11 months old. Well, he almost didn't make it through that. The doc came out and said technically he should be dead. I had told him I did not want him to beat around the bush. He admitted him to the Children's Hospital right then. He was a God send. He was a surgeon that pioneered a surgery that stopped the GERD. He goes around the world teaching the surgery. He did the surgery however, my son was still having all the problems. He was not a text book case. I still loved the surgeon as he was wonderful. He did what he said he would do. They told me he would not live to be 1. He was taking 18 meds per day. At 2 1/2, I heard about a hospital in Denver that deals with nothing but lung diseases. However, it has to be doctor referral only. My new pediatrician had no problem however he said he really didn't think it would make a difference. But, he told me that he would do it b/c he wanted me to feel like if my son didn't make it that I did everything humanly possible to help him. My mom went with us for a 10 day stay. They did it as an out patient and they work it out with hotels for cheap rates and my insurance even covered that. Meals too. Before we had went, my doc and I had reduced my sons meds to about 3. Once in Denver, they upped it back up to about 18. Once we got back, I decided that was not the life I wanted my son to live. My Ped and I took him back off the meds back down to what we had him on before we went. The only way he could sleep was sitting up. I would like to say, my son was the happiest baby through it all. Even when he had surgery and all the hospital stays. I was working full-time and holding him at night so he could sleep and one night I prayed to God that if this is how he had to live that I could deal with it but I didn't think it was fair to him. If God wanted him back, I would be okay. It was like a weight was lifted off of me. After that, he started doing better day by day. After about the age of 7, he was off of all meds except about 2 times per year. He is now getting ready to turn 20 and is now only on 1.


My question to you is what type of meds is she on for her asthma, GERD and ulcers. I don't remember all the meds my son was on but they did have him on Mylanta.

Another problem that ended up happening is that the meds he was on for asthma and GERD were counteracting with each other. Why don't you do a drug interaction search engine on the internet and see what comes up. I know alot of times people depend on their pharmacy however, I take alot of meds and they have never said a word to me about mine and I looked them up and it showed 5 severe interactions. Just a thought.

Another thing you might want to do is normally my sons was always worse at night. I always have his mattress head elevated and it seems to help alot. Even now. Might help with her.

Keep us posted and if I think of anything else, I will let you know.
Good Luck. Jenn

Hey Jenn,

Thanks so much for your reply. After reading your son's story I guess I can still hold out hope for my grand daughter. It sounds like you know exactly how we feel. Sometimes I wonder if my girl will make it too. I'm so depressed, and I'm beginning not to sleep at night because I'm afraid for her. I'm also beginning to get nightmares. But enough about me.

Yes, her illnesses are ALWAYS worse at night. Whether it's the coughing from Gerd/gastric ulcers or the asthma, night time is a nightmare.

Her meds consists of:

For Asthma- predinisone (which I believe started the whole gastric ulcer/gerd thing, and for sure the adrenal insufficiency), allegra 180 mg., nasonex, flovent, foradil, singulair, xopenex (as needed).

For the gerd/gastric ulcer problem- Prilosec OTC and Tums.

Miscellaneous- A liquid vitamin called "To Your Health", B-100 vitamins by N.O.W., and just recently added last night a liquid calcium and magnesium supplement. I feel if it weren't for these supplements- especially the "To Your Health" my grand daughter would feel a lot worse than she does. She's a little trooper and loves cheerleading (when she's able to attend school). However, I have noticed that she is beginning to exhibit sadness and nervousness since her last hospital stay. I'm going to try the apple cider vinegar and aloe vera juice along with some kind of probiotic and digestive enzymes next. We're also trying to modify her diet.

We prop her head up, but I'm sure she falls off during the middle of the night.

I tell you, her little nerves are shot, her mom's nerves and mine are shot. Not to mention our budgets are shrinking more and more because of the ER visits, hospitalizations, and meds.

I am soo very happy for your son. How is your son doing healthwise and mentally? Which medicine is he using now? Is he in school, or does he have a career?? Thanks so much for letting me vent.

[QUOTE=kjackson227;3292431]Hey Jenn,

Thanks so much for your reply. After reading your son's story I guess I can still hold out hope for my grand daughter. It sounds like you know exactly how we feel. Sometimes I wonder if my girl will make it too. I'm so depressed, and I'm beginning not to sleep at night because I'm afraid for her. I'm also beginning to get nightmares. But enough about me.

Yes, her illnesses are ALWAYS worse at night. Whether it's the coughing from Gerd/gastric ulcers or the asthma, night time is a nightmare.

Her meds consists of:

For Asthma- predinisone (which I believe started the whole gastric ulcer/gerd thing, and for sure the adrenal insufficiency), allegra 180 mg., nasonex, flovent, foradil, singulair, xopenex (as needed).

For the gerd/gastric ulcer problem- Prilosec OTC and Tums.

Miscellaneous- A liquid vitamin called "To Your Health", B-100 vitamins by N.O.W., and just recently added last night a liquid calcium and magnesium supplement. I feel if it weren't for these supplements- especially the "To Your Health" my grand daughter would feel a lot worse than she does. She's a little trooper and loves cheerleading (when she's able to attend school). However, I have noticed that she is beginning to exhibit sadness and nervousness since her last hospital stay. I'm going to try the apple cider vinegar and aloe vera juice along with some kind of probiotic and digestive enzymes next. We're also trying to modify her diet.

We prop her head up, but I'm sure she falls off during the middle of the night.

I tell you, her little nerves are shot, her mom's nerves and mine are shot. Not to mention our budgets are shrinking more and more because of the ER visits, hospitalizations, and meds.

I am soo very happy for your son. How is your son doing healthwise and mentally? Which medicine is he using now? Is he in school, or does he have a career?? Thanks so much for letting me vent.

The only med he is on now is advair and the prednisone as needed. I understand how you can get depressed and down and I understand the budgets also. He graduated from High School last year with honors and decided to take a year off and work. He works nights part-time all year and works a full-time job for about 8 months out of the year also. He is a trooper.

Please do your best to use the predinose as little as possible. My son was on them for 7 years straight and if I had it to do over, I would have done it differently.

As far as the nerves.... I understand how you feel but please do what you can to keep that from her as much as possible. When they have a bad attack and are upset, they sense everyone around them that are upset also and it makes it much worse for them. Stay as calm as possible and it will help her even more. I know it will be hard, but it was something I learned very early. She is also at the age that she knows how far she can push herself so you all need to let her do that. It will make her feel like she has some control over it.

I understand you prop her head up but you need to prop the whole head of the mattress. You can do it with old blankets or phone books and get it up about 10-12" and it should make a big difference. I did it even when my son was a baby in his crib.

You sound like a wonderful Grandmother. Remember though to let her do whatever she wants to do. You can't expect her to live in a plastic bubble. I refused to let mine. The docs in Denver said I shouldn't let my son go to my parents lake house as it was in the woods. My doc said that was ridiculous as he loved being with his grandpa. Why let him miss out on that. I didn't.

Hang in there and say your prayers.... I am sending my angels :angel::angel: to look over all of you. If she has been on these meds for a while and doesn't seem any better, I would tell the docs, time to try something else. If they don't want to change, find another doc. Fight for your Granddaughter. She deserves it. She should not be so stressed. Take back control and tell the docs that whatever that are doing is not working and it is time for a change.

Good Luck and God Bless.... Jenn