I wanted to ask you guys to be praying for Vivian. I took her to the pediatric pulmonologist yesterday and she doesn't have asthma. That is a huge praise! She does have reflux and they also suspect that she has obstructive sleep apnea. The dr said that her airway is blocked by her enlarged tonsils (partly due to reflux) so when she sleeps, she has trouble breathing. That may be causing her to have seizures. We are going to do a sleep study at Children's and some more xrays to find out what is going on and how to treat it. She also seems to have developed allergies so she is congested and that seems to worsen the situation. Over the last two weeks the episodes have gotten much more frequent and Tim and I have gotten pretty good at recognizing when it's going to happen and we can help her. Unfortunately, the breathing treatments and the steroids aren't helping very much since it's an obstruction, so we just have to watch her until the sleep center has an appt for us. The dr told me to sleep sitting up with her, which is not an easy thing to do. She's also very tired and cranky during the day since she's not able to sleep well at night.
Overall, we are very thankful that she doesn't have asthma. The dr said that if she is having seizures, they most likely aren't neurologically driven. They are probably only happening because of the obstruction. So another huge praise there. We are going to have a rough few weeks but hopefully we will get some answers and a plan after the sleep study.
Thank you so much for your prayers
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3 months ago
8 comments:
We love you, Guys! Let us know if you need anything. We are praying that God will touch her and heal her. Love you.
Audrey and Tim, you are foremost in our prayers and thoughts. My son had asthma when he was younger and was in intensive care for awhile. PRAISE the Lord that asthma is not a complication to Viv's illness. We pray that she heals in the next few days and is that beautiful little person that she has always been. Judy & Bob
I am glad to hear that is was not asthma so the neb treatments are not necessary, like we discussed. Now we just deal with it as we go. Please keep me informed as I may have further experiences to share:) Luv to you ALL!
Tonya Biyad
I was also thinking about the sleep thing. We have(and sometimes still have to do) this. I can help in my opinion with EEG's, EKG's and asthma specialists at 'childrens'. Keep your chin up, I know how it is. It seems to get slightly better as the get older, but I can't say we have ever seen it disappear completely and he is now 7 and 1/2. Just keep doing all you have been and seeking feedback is great help too!! I will say again, Humidifiers DO NOT HELP, (say's the drs at Childrens) BUT Vaporizors do sometimes. We use Vaporizors when needed with liquid vicks vapo steam liquid. Its just a short term fix, so we can all sleep. Praise the lord we have not had any issues this season. We have soooo many others going on right now as it is. GOOD LUCK and please feel free to call on me even though I don't have much, but I can share what I have learned over the past 4 years.
Tonya
Audrey, I have gone through this with Holli, minus the seizures. Her tonsils are HUGE, which has caused her to have obstructive sleep apnea. I have had surgery scheduled for her twice to have her tonsils out. Now, as I'm sure you know, Holli is NOT an easy patient and I was so nervous about having the surgery done. Well, both times I have had to cancel the surgery because she has ended up being sick. I have been taking her to a chiropractor since May and it has helped TONS! She gets an adjustment and she also gets a laser treatment (I can't spell the exact type of laser it is, but I can look it up for you if you want to know more).
Do a little research on vocal cord dysfunction- it is what Joel has. It can manifest itself in different ways and different times, but at least you could read about it and see if it fits. They thought Joel's was adenoid enlargement and after taking them out, realized it didn't help anything.
Hope you can get some rest!
Thank you so much for all of your thoughts. I really appreciate the prayers.
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