Post by snowfire on Sept 13, 2006 0:05:04 GMT -5
Where do I begin? This will be long. Warning;)
My Amber was an emergency c-section. Things were going well, and all of a sudden as my contractions were peaking, her heartbeat was lost. Then would come back up slowly. She had a "true knot" in her cord. And it was wrapped around her neck. If not for the c-section she would not have made it. But she bounced back and was great on the apgar's. Up until about 7 months she was a great baby. Then we started to notice that she was getting a LOT of ear infections. Every tooth she got a double ear infection. And we couldn't lay her flat. She freaked when she got in her crib. Unless she was already asleep. She slept in her swing for her first year, or her car seat. She had her first set of tubes at 13 months. They plugged because of so many more infections. So the second set and adenoids surgery was at 18 months. "you'll have a different child now" was told to us. Nope. She didn't talk. Ears never unplugged. Croup every 3-4 weeks. Severe. So another set of tubes at almost 3. Finally they worked. She started talking, but not making sense. She didn't understand "you or your" type things. Finally we figured out that we had to say, "Amber, is Amber ok? " It sounded really weird, but she understood it that way. She also would slam into things. Or just fall on the floor. And she didn't react to pain. Unless it was bad. I got involved with a group through her ent. She couldn't believe she was so slow on speech. Because of them, I got involved in parents as teachers. The director of the group I was in helped me get in with the school system. AMber qualified for preschool, and through the preschool I met the school psychologist. She urged me to get my child tested to rule out autism. Your heart drops when you know there is something "wrong" with your child, but to have it confirmed is just heartbreaking for a while. We started going to a doctor who specialized in autistic children. He said she had the signs of autism, but he wasn't equipped to test her. So he suggested further testing. Through talking with the "scanner" lady for lack of a better term lol, she upped me on the waiting list. Praise God. AFter the extreme testing, they said, "we have good news and other news". Amber wasn't autistic. She had:
ADHD
A severe anxiety disorder
A severe sensory disorder
(since we have found out that she is allergic to everything under the sun except food, and her "croup" is asthma)
So my poor 7 year old has a pharmacy of her own now. She used to wake up crying, and cry all day. Then go to bed crying. The only time she didn't cry was when she was asleep. You couldn't reason with her at all. And I was the one she wanted. I was exhausted. So many times I would put her in her room for a nap, and go turn on the shower and just cry. I didn't want her to see me sad, but I didn't know what to do with her.
She has come a long way, but she has new problems now.
We are having an mri done wednesday, because she has been complaining of headaches and vomitting several times a week. She vomits no matter what, but the headaches come and go. She in April started this out. We were all outside, and she was playing with her friend. Her friend came by, and no Amber. I asked where she was as they had been together. She said, "in the garage". I looked up, and there was Amber with her head pressed against the concrete in the garage on the floor. I asked her if that felt good, and she said it did. She then developed a high fever, and the vomitting began. I took her to the children's hospital, and she had a severe double ear infection. Again. So we figured it was that. She never really recovered from that. Was still very sick. May 30 my 5 year old had a stomach bug. May 31 Amber got sick with it, or so I thought. I thought, "here we go again. Wonder who will get it next." Amber with her sensory disorder and not one to let on to pain was rolling around on the floor holding her tummy. Screaming. Blood curtling screams. I rushed her in to the doc, and she put her in the hospital. Thinking appendicitis. They did the ct scan, and it was something called "mesenteric adenitis". The virus mimics appendicitis. The next morning her doc ordered one more blood test. She walks in and sayd, "Amber has mono". You could have knocked me over with a feather. How does a 7 year old get mono? She continued to vomit several times a week. All different occasions. We can be in the car and there she goes. I have had to pick her up from school 3 times now. She does it at the table. Sometimes it is with the headache. sometimes not. We are at a loss. The docs keep telling us that it is from her sinuses draining into her tummy making her sick. If that is all it is, then great. But can't they give her something for that? I called her developmental pediatrician, and she ordered this test for her. She has had so many sono's to make sure her insides are ok from the mono. And the ct scan in the hospital. She said it is probably nothing, but she wants to make sure her head and brain are ok. Said if something is wrong that she would be kicking herself down the road when it could have been ruled out now.
Amber gets allergy shots every week, and uses pulmicort up to 4 puffs a day. She takes clonidine for her adhd, lexapro for her anxiety. She takes singulair every night. She has nasonex from this last round. I am beginning to think we will do tubes again. She has had 3 ear infections in the last 3 months. That we know about. When the one in April was found out, I had asked her if her ears hurt. She kept telling me no. The doc looked in her ears and said, "Honey, you have a nasty double ear infection. Didn't they hurt?" She said, "well, they hurt a little"
I used to feel so bad when she was a baby and I'd take her in. She would be fine, and then would wake up with a fever and cranky as all get out. They would look at her ears and say, "OH MY GOODNESS! The poor baby. They are nasty infected. Mom, she had to be pulling on her ears!" I would honestly answer them that she wasn't, but I always felt like I was abusing her.
OK. if you made it through my book, I thank you lol. Here is Amber for you to see:)
update:
She didn't need to be sedated for the mri which was good. She was so nervous:( We have to wait now for the results.
She had an appointment with her allergy/asthma doc today. Her breathing at the last appointment where they have you blow into the tube on the computer was 81%. They thought she wasn't doing it right. But she did it right today and it was 71%. So she is now on mandatory pulmicort 4 puffs daily, albuterol every 4 hours for the next 3 days, and singulair still. Then zyrtec added. My insurance company took that off the formulary! But we are going to fight it. Thanks for all the responses:)
UPDATE #2
Her MRI was normal which is wonderful:) But now we are back to the "why is she throwing up again?" stage. Since they upped her asthma/allergy meds, she has been much better. She gets worn out still, but at least she knows to ask me for a puff on her inhaler now. ANd knows when it will help. I am so thankful for that. We go to that doc on Friday. Thanks again for all the thoughts:)
She had her upper GI on Tuesday. She did soo well. Never complained once. She did make a face though lol. The doc turns and looks at me and says, "Mom, she has Massive reflux". She also has something weird with her aorta, but it is where it is located and shouldn't cause a problem with her. But we have an answer! Finally! So we are waiting on the doc's office now. I am so happy and relieved, but now the next phase begins:)
My Amber was an emergency c-section. Things were going well, and all of a sudden as my contractions were peaking, her heartbeat was lost. Then would come back up slowly. She had a "true knot" in her cord. And it was wrapped around her neck. If not for the c-section she would not have made it. But she bounced back and was great on the apgar's. Up until about 7 months she was a great baby. Then we started to notice that she was getting a LOT of ear infections. Every tooth she got a double ear infection. And we couldn't lay her flat. She freaked when she got in her crib. Unless she was already asleep. She slept in her swing for her first year, or her car seat. She had her first set of tubes at 13 months. They plugged because of so many more infections. So the second set and adenoids surgery was at 18 months. "you'll have a different child now" was told to us. Nope. She didn't talk. Ears never unplugged. Croup every 3-4 weeks. Severe. So another set of tubes at almost 3. Finally they worked. She started talking, but not making sense. She didn't understand "you or your" type things. Finally we figured out that we had to say, "Amber, is Amber ok? " It sounded really weird, but she understood it that way. She also would slam into things. Or just fall on the floor. And she didn't react to pain. Unless it was bad. I got involved with a group through her ent. She couldn't believe she was so slow on speech. Because of them, I got involved in parents as teachers. The director of the group I was in helped me get in with the school system. AMber qualified for preschool, and through the preschool I met the school psychologist. She urged me to get my child tested to rule out autism. Your heart drops when you know there is something "wrong" with your child, but to have it confirmed is just heartbreaking for a while. We started going to a doctor who specialized in autistic children. He said she had the signs of autism, but he wasn't equipped to test her. So he suggested further testing. Through talking with the "scanner" lady for lack of a better term lol, she upped me on the waiting list. Praise God. AFter the extreme testing, they said, "we have good news and other news". Amber wasn't autistic. She had:
ADHD
A severe anxiety disorder
A severe sensory disorder
(since we have found out that she is allergic to everything under the sun except food, and her "croup" is asthma)
So my poor 7 year old has a pharmacy of her own now. She used to wake up crying, and cry all day. Then go to bed crying. The only time she didn't cry was when she was asleep. You couldn't reason with her at all. And I was the one she wanted. I was exhausted. So many times I would put her in her room for a nap, and go turn on the shower and just cry. I didn't want her to see me sad, but I didn't know what to do with her.
She has come a long way, but she has new problems now.
We are having an mri done wednesday, because she has been complaining of headaches and vomitting several times a week. She vomits no matter what, but the headaches come and go. She in April started this out. We were all outside, and she was playing with her friend. Her friend came by, and no Amber. I asked where she was as they had been together. She said, "in the garage". I looked up, and there was Amber with her head pressed against the concrete in the garage on the floor. I asked her if that felt good, and she said it did. She then developed a high fever, and the vomitting began. I took her to the children's hospital, and she had a severe double ear infection. Again. So we figured it was that. She never really recovered from that. Was still very sick. May 30 my 5 year old had a stomach bug. May 31 Amber got sick with it, or so I thought. I thought, "here we go again. Wonder who will get it next." Amber with her sensory disorder and not one to let on to pain was rolling around on the floor holding her tummy. Screaming. Blood curtling screams. I rushed her in to the doc, and she put her in the hospital. Thinking appendicitis. They did the ct scan, and it was something called "mesenteric adenitis". The virus mimics appendicitis. The next morning her doc ordered one more blood test. She walks in and sayd, "Amber has mono". You could have knocked me over with a feather. How does a 7 year old get mono? She continued to vomit several times a week. All different occasions. We can be in the car and there she goes. I have had to pick her up from school 3 times now. She does it at the table. Sometimes it is with the headache. sometimes not. We are at a loss. The docs keep telling us that it is from her sinuses draining into her tummy making her sick. If that is all it is, then great. But can't they give her something for that? I called her developmental pediatrician, and she ordered this test for her. She has had so many sono's to make sure her insides are ok from the mono. And the ct scan in the hospital. She said it is probably nothing, but she wants to make sure her head and brain are ok. Said if something is wrong that she would be kicking herself down the road when it could have been ruled out now.
Amber gets allergy shots every week, and uses pulmicort up to 4 puffs a day. She takes clonidine for her adhd, lexapro for her anxiety. She takes singulair every night. She has nasonex from this last round. I am beginning to think we will do tubes again. She has had 3 ear infections in the last 3 months. That we know about. When the one in April was found out, I had asked her if her ears hurt. She kept telling me no. The doc looked in her ears and said, "Honey, you have a nasty double ear infection. Didn't they hurt?" She said, "well, they hurt a little"
I used to feel so bad when she was a baby and I'd take her in. She would be fine, and then would wake up with a fever and cranky as all get out. They would look at her ears and say, "OH MY GOODNESS! The poor baby. They are nasty infected. Mom, she had to be pulling on her ears!" I would honestly answer them that she wasn't, but I always felt like I was abusing her. OK. if you made it through my book, I thank you lol. Here is Amber for you to see:)
update:
She didn't need to be sedated for the mri which was good. She was so nervous:( We have to wait now for the results.
She had an appointment with her allergy/asthma doc today. Her breathing at the last appointment where they have you blow into the tube on the computer was 81%. They thought she wasn't doing it right. But she did it right today and it was 71%. So she is now on mandatory pulmicort 4 puffs daily, albuterol every 4 hours for the next 3 days, and singulair still. Then zyrtec added. My insurance company took that off the formulary! But we are going to fight it. Thanks for all the responses:)
UPDATE #2
Her MRI was normal which is wonderful:) But now we are back to the "why is she throwing up again?" stage. Since they upped her asthma/allergy meds, she has been much better. She gets worn out still, but at least she knows to ask me for a puff on her inhaler now. ANd knows when it will help. I am so thankful for that. We go to that doc on Friday. Thanks again for all the thoughts:)
She had her upper GI on Tuesday. She did soo well. Never complained once. She did make a face though lol. The doc turns and looks at me and says, "Mom, she has Massive reflux". She also has something weird with her aorta, but it is where it is located and shouldn't cause a problem with her. But we have an answer! Finally! So we are waiting on the doc's office now. I am so happy and relieved, but now the next phase begins:)
