Angelika_23

I am in a bad place right now. No one knows what is wrong with him and no one wants to take responsibility for him. I don't know what to do. We supposedly have one of the top 5 children's hospitals, but you couldn't prove it to me right now. He had an atypical reaction to the Neurontin (imagine that...) and isn't sleeping, so I had to stop that med. Now waiting on the pain team to call back and let me know what the next latest and greatest idea is. The main pulm doc (that we like and trust) that was out of town is back, but she is busy in the ICU and we probably won't get her attention until later this week. It hurts my son to breathe and no one seems to care. Isn't this wrong??? Angela

Pulm doc (at first) said he had scar tissue in his pleura, then he had an epiphany or something, and the shoved us off to the pain doctor, who says he has neuropathy. Before the pain team appt today, I called our pulm nurse and raised 3 kinds of cain. It didn't accomplish anything, and I ended up crying again. I sure wish our regular pulm doc would get back. She returns from vacation on Mon. The interesting thing I found out was the surgeon DID contact the attending pulm doc while we were in the hospital, and he told him that whatever is going on now isn't a common after-effect of the surgeries my son had. I am thinking pulm doc heard this, and hightailed it to the pain people to save face. So why did he lie to me? Why did he say he hadn't talked to the surgeon when he really had? And why did he promise to call me when he heard from them, knowing he was leaving the hospital from Thurs to Mon? So I don't know what to do, it is like a big circle, no one knows what the problem is. We have to go to the surgery clinic in two weeks. In the meantime, we are going to try the Neurontin. Angela

No one seems to know. They sent him home tonight, and we have to see a "pain" doctor in clinic tomorrow. I am very frustrated. I want to find out what the problem is, not just medicate my teenaged son. There is talk of scar tissue in his pleural cavity, but no one has given us options on how to address the problem. I was told the surgeon that did his surgery would call me, but no call tonight. I am going to go to this appointment loaded for bear. I am a wildcat mama, unhappy with being shoved off on a pain doctor who diagnosed my son without ever seeing him or laying a hand on him. I am so frustrated and unhappy. > Angela

Well, we are here. At Children's. I got to talk to a pulm doc tonight, and am curious. My son's CT scan was good, but his chest x rays are not. I always thought that the CT was superior to an x ray, so I'm not sure why the CT wouldn't show what the x ray is seeing... The x ray was done less than 24 hours before the CT, so I know there was no resolution of the problem. So we wait. I hope we aren't here long. Hopefully tomorrow will bring some answers. Angela

Okay, His liver function bloodwork was very slightly elevated, but nothing they are concerned about since he's been on anti-inflammatory medicine for a bit. His Epstein-Barr came back with titres (sp?) but no active infection now. So... He is being re-admitted to the hospital sometime this week for further testing and evaluation. Poor kid. The sad thing is he doesn't even object to it. Before, he said he'd rather die than go back, and now he is saying to please admit him. Angela

I see Dr. Robert Shields at Cleveland Clinic. He's a nice guy too. Angela

Aaaaaarrrrrrgh! Frustration!!! My son had his CT today. I've been waiting all day for the doctor to call. She didn't. We went to our middle son's band concert tonight, and while I was in the school (with no reception on my phone) she called and left a voicemail that she was trying to get in touch with me about my son! Now I have to wait until the morning to call and get the scoop. > What she did say on the voicemail was: She's calling to discuss the results of the CT. She has a plan. Call in the morning if she doesn't get hold of me tonight. She is ordering some bloodwork on my son. I have no idea what that means really. Did the CT show something or not??? I guess if it did, it wasn't too bad because she didn't say bring him to the hospital. A lousy 30 minutes at a band concert, and that is when she calls... Sorry, had to vent. Angela

The CBC was not terribly exciting. One value was slightly high and the other slightly low, but not enough to make the doctor terribly concerned. We are getting a CT scan probably tomorrow. I talked directly to his pulmonary specialist. She is concerned that his lung might be having problems (i.e. an infection), and an x-ray isn't going to show anything right now with all the scarring from the pneumonia still in the way. So now I'm trying to convince myself it is pointless to worry until we have the test done and the results back. Thanks for all the good wishes and support! Angela

No steroids, they don't want to tank his immune system. They put him on Aleve every 8 hours around the clock. It isn't working. I took him to the primary care doc this morning out of desperation, because I STILL haven't heard from the specialists office. It is odd, because she is usually so good about getting back to us. She must be really busy. Anyway, PCP doesn't know what is going on, they ordered a CBC. Maybe that will tell us something. Grrr I hate waiting. Patience is not one of my virtues, especially when it comes to care of my children. Angela

Now I am getting pretty concerned. My oldest, Christopher, is not getting better. He is walking around holding his chest. I have called his pulmonary specialist. Her nurse said she'd have her call me later today, that she is out of the office right now. He is complaining of being very tired, dizzy, his whole body hurts and the chest pain. No fevers I am trying not to go into freako panic mom mode, but it is hard. He called me from school saying he was sick, please come get him. He felt too badly to drive himself home. This is the kid who LOVES to drive. On top of all that, my stepsister is in the ICU with a suspected bacterial pneumonia. She is coughing up blood. I feel badly for her, and it makes me worry that much more. Feeling pretty puny, Angela

I have to add this... I don't think H1N1 is the major problem, it is the pneumonia that can follow it. That pneumonia is what is causing complications and killing people, not H1N1 itself. We have had experience with this post viral pneumonia, and it isn't pretty.

Hi Tessa, I am still going along with my original thinking on this. From what my doctor(s) have said, 1. If you have underlying health issues, you should get the H1N1 shot, not the nasal mist 2. The H1N1 shot is made exactly the same way as the "regular" flu shot. There is nothing "new" or "experimental" in it. 3. If we get the "regular" flu shot and tolerate it, then we should have no problem with the H1N1 shot. 4. In the next year or so, the "regular" flu shot will contain the H1N1 as well. 5. Here in the US, they are not using adjuvents Like I said, this is from my primary doctor and the boys' asthma specialist at Children's. Our family gets the regular flu shot every year. We tolerate it well, so I don't expect any different from the H1N1 vaccine. My kids are at higher risk for respiratory issues. I'm not taking any chances. However, my youngest just tested positive for it, so if we all end up with this I guess it negates the necessity of getting the vaccine this year. And my oldest alreay had H1N1 earlier in the summer. Angela

I did ask my doctor about giving the rest of us Tamiflu, and he actually got angry and said, "Why? So you miss the flu this time but get exposed to it later in the community? No, if you start with a fever I will give you Tamiflu." I guess that kind of makes sense... Tamiflu might keep me from getting sick this time, but it wouldn't give me an immunity to the virus.

Thanks Julie, We are definitely busy right now. I feel very badly for the little one. We had to reschedule his birthday party and he missed his school carnival. Today his fevers aren't so high, and he is eating a little and sitting up. The oldest one is very angry with me because I have put him on "house arrest" while he recovers from the pleurisy. He seems to have forgotten what it was like to spend 16 days in the hospital. He just wants to go, go, go instead of resting and recovering. I am definitely keeping a close eye on all of them, and hopefully this will soon be a memory. I hate to be so worried. Thanks for the prayers! Angela

Well, the Tamiflu seems to be doing its job. No big fevers today, and he is eating a little and sitting up. The cough is still there, but not quite as bad. Things seem to be looking up. Now only 6 days to see if the rest of us (besides the oldest) get it. I heard the incubation is 7 days. My middle son, who is 13 and has the most severe asthma, has started that awful coughing. No fevers so far though. Thanks for all the well wishes. Angela

Probably a lot. My POTS started about 6 months after I had viral meningitis. Angela

I hear they stopped giving vaccines at 11:00, and they were scheduled to give them until 5:00. I'm not sure why they closed shop early. I guess it is too late for us to get the vaccine now, we are right in the thick of it.

It is official, my youngest son who is 8 has H1N1. He woke up with a high fever this morning. I took him to the doctor and they sent us to Children's to have him tested. It was positive. So now I am worried because of all the complications my oldest son had with it. All three of my boys have asthma, but the two younger ones have it worse than the oldest one. Here's hoping the Tamiflu does its job. Angela

He went back to school with a PICC line, and has been working up to "normal" activity since. He is just experiencing a setback. My other one probably has H1N1. We went to Children's for testing. I should know something in about an hour. Geez. Angela

Ok, I'm asking for more prayers now. My son now has pleurisy, yet another complication from the H1N1/Pneumonia debacle. He is really upset, crying on the way home from the hospital. This keeps coming back and biting him over and over... I feel so badly for him. His pulmonary specialist has been really good with him, explaining that what he had was brutal, but he is improving... As bad as he feels now, she has seen much worse outcomes. So now I am nervous again. I thought we were in the recovery process. And now we are back to being acutely ill again. Also, my youngest woke up this morning with a fever of 102, cough and headache. I pray to God he doesn't have H1N1. He has underlying asthma, and he's been having problems for about a month. Will be calling the doctor at 8:30. Angela

Regarding the earlier swine flu vaccine and guillain barre, I THINK that what our doctor said is the earlier vaccine, from the 1950's or whenever, did more harm than good because of the way it was made. I think your pamphlet was letting you know that even though the earlier vaccine wasn't the best, this new one is made differently and will not affect people that same way. I did make a point about asking about this because I had heard other things about the safety of the shot. I am getting the shot for my children. Their lungs are compromised, and a pneumonia that followed the swine flu nearly took out my 16 year old son this summer. And he's the healthiest one. We were told to get the shot and not the mist for our children because of their underlying health issues. Good luck, Angela

I am on a beta blocker and I can STILL exceed my target HR when I exercise. I do find, that after I exercise for a few weeks, my HR will be lower than previously while I am doing the same thing. For me, I can somewhat train my HR down for a time, until my next crash, then I have to start all over again. Angela

I don't know if we are going to be able to get the vaccine. H1N1 is hitting hard in our area. I know about 8 people who have it. We may already get sick with it before the vaccine is available. Does anyone know how long it is after you get the shot before it is effective? I know with the regular shot it is 2 weeks. Just so I have a point of reference. Thanks, Angela

kayjay - no pain at all. Just annoyance. firewatcher - I am sorry you have this too. It only plagues me every two years or so for a while... I hope it goes away soon. Angela

I have the feeling that my ears, mostly the left one, are very full. I don't have any ringing. But when I listen to the phone, or anything with my left ear, it sounds tinny and robotic. I am having some tachycardia off and on, so I'm not sure if I am working up to a "crash", or if this is just an ear issue unrelated to POTS. My husbands says it is sinus, and I guess it could be, but I can breathe okay and am not having the "normal" sinus issues. I am getting some headaches though. Any ideas? Angela