Oh how fast excitment turns to frustration!

We were so excited yesterday to get the news that the HMO had already approved the referral for Peanut to go to CMH. This is where the specialist is that might be able to help her. And of course, that's a big "might!" But it was something we wanted. And we all know how HMO's can be, so we were thrilled that it didn't take that long.

Anyway, I should have been a little more cautious... I called today to make the appointment. Yikes! They need all this paperwork first, detailed email from her pediatrician, some genetic testing done, the referral, and then various forms/paperwork from us. And then, they can start looking into appointments. Which, by the way, is booked through February!!! Since Dr. W is the expert in this, of course she gets requests from around the world. The only thing the woman I spoke with said is that we're lucky since we're local. So if someone gets sick, which she said usually happens a few times, then we'd get in. And the appointment is a 4-day, inpatient one!!

Sooo... now we're back to being on hold again. We need Dr. S. to get this info to Dr. W. as soon as possible, so then we can at least get on the list for an appointment. I really should have known better. At least this isn't anything that is anyone's fault, it's just the reality of the situation. Hopefully though, we'll at least be able to get it set up soon!

Today was a bit rough...

Today I took Peanut to see her therapist again. That was only the beginning of our day. She's great though. She's going to help us work things out, work with her on her anxiety issues, figure out what's going on, and be ready for problems that could arise at school. She's very nice, definitely works with kids, so that's great! She spent about 20 minutes with Peanut alone today. When we first saw her, it was just all the background, which in our case, is a lot.

Then we had to run over to the hospital to see her pulminologist. She last saw him in 3 weeks ago when she was in the hospital overnight. He came in and updated all her info, talked with her a bit, checked her respiratory, the normal stuff. Then he asked me to step into another room to talk to me without the kids there. As I told the medical student with him, I felt like I had been called to the principal's office in school.

He wanted to talk to me about what he thinks is going on. Basically, he has no idea. He said she is a very special and unique case. There is nothing about her that has presented as normal or routine. He talked about her sleep apnea, the obesity, endocrine issues, and then the possible seizures, plus the central apnea (which is when she stops breathing while she's not sleeping). As he told me, there is nothing that can cause all of this issues to occur in one person, unless there is something in the brain. Yes, sleep apnea can cause obesity, and vice versa, but when you add in the central apnea, and I think there was something else he said (there was a lot to digest), these things just aren't related by any other organ.

Dr. A. wanted the 48 hour EEG done, which is scheduled to take place in 3 weeks. We're doing an ambulatory one, so she doesn't need to be in the hospital. But she can't go to school for the 3 days. He wants to get a better picture of what is going on inside the brain. I guess that other doctors weren't so pushy on getting this done, they wanted to wait and see if she'd have another episode. He insisted that no, we won't wait for that! So that was good to hear.

Now we're starting to reach a point where we need to start looking at the more obscure and rare disorders or syndromes. He would like to get us just this little more info, from the EEG, so that we can start searching out experts that will be the best to help us. I have no idea where we're going to start. This is such an open road, but so limited too. Plus, I'm sure the insurance thing is going to come into play on all this.

This was the first time that any doctor has told us that they just don't know what is going on. But he also firmly believes that it's not food/calorie related. That was good to hear too! I've felt that way for a long time now, but I know not everyone has believed that.

We're also waiting for Dr. S., her pediatrician, to get approval (she's working on documentation for the HMO). This will hopefully get us into a specialist at CMH. This may be a big step in a direction we need. But again, who knows. I hate to even think it, but there's always that ONE person who has something doctor's have heard of. Or that ONE kid who's the first to have something. There's a reason that there's 1,000's of rare disorders. And we're talking about only a few hundred people having this things.

Sooo... we don't have any answers, just more questions to ask. But it was still productive, it's good to know that a doctor DOES see that there's more than what we can answer right now. And that we need to go further.

It's been awhile...

There really hasn't been anything to update as of late. We did get all that blood work done, and haven't had any results yet. There hasn't been any change in how she's doing really. I have to say though, that Peanut's trying to not fight us on everything. She's willing to eat things that are a little healthier for her. Yet it's so darn hard to even find stuff. It's amazing how much crap is out there. She does talk about doing things to burn off calories though.

Hubby has still been sleeping in her room too. She still dips down at times, but has gotten a lot better. And she's been off oxygen for the last 2 days now. That's good, since we were getting concerned about her being on it too long. And she doesn't like having the pulse ox on every night.

We did find something else to look in to, but we're waiting on getting more information. The one good thing is that if this turns out to be something, the best doctors who have researched this disorder are here at CMH and RMC. Peanut's pediatrician is good friends with one of the docs who has done this research, so she's been in contact with her. They're trying to work on getting Peanut in for the genetic testing that this requires. While we don't want it to be this, having an answer and somewhere to go would be a little helpful.

Right now we're getting ready to start kindergarten in a couple weeks. And as usual, our end of the summer always gets busy. We spent the entire day downtown the day after their birthday. We did the Sears Tower, went out on the ledge, took a Double-Decker tour bus around, spent time at Millennium Park, and had dinner down there too. The next day was at a local water park. We had beautiful blue skies, perfect temps, and a nice park. After that, we went back downtown to Navy Pier, to watch the practice runs for the Air and Water Show. It was another picture perfect day!

The biggest thing for them has to have been their birthday party this week. We had it at a local, indoor play-place and it was awesome! We didn't have to clean up, make food, get a cake, goodies bags, none of it! The package we chose came with all that, unlimited play, tokens for the games, and a pinata too! It wasn't a big party, which was totally fine, they all had fun.

We hope that we'll have some news, answers, or directions this coming week. But we know that this kind of work takes time. But maybe some answers from the blood work that they did.

Had to give more bood and another path to follow... on their birthday!!!

Apparently on Friday, when drawing 11 vials of blood, they missed something. So we had to go back today and they took one more vial of blood. She was great, as usual, and they got it very quickly. No answer yet on when we'll get any results. We know that some of the samples need to go to a special lab in California, so I'm sure that will take some time.

In the meantime, someone passed along some info that we're looking into further. It's a rare condition, so we don't want to get too deep into it yet. However, we're really getting on top of it right away. Luckily, it appears that CMH here in Chicago leads the research on this. We also called her ped., Dr. S., and she spoke with hubby. She said it's something to certainly look at further, and she's good friends with the doctor at CMH that does this research. So that was something that sounded really positive and good. Plus, the new endocrinologist we saw last month, Dr. L. also said we could look into having this genetic test done, and it's done at the hospital he's at! We just have to get insurance approval. But at least Dr. S. is on top of it too, and pushing right along with it.

We also met with a therapist today. The appointment was initially made for Peanut. However, this will end up being a family type thing too. Which will be good for all of us. We have Nutty Buddy talking about the "not breathing incident" often enough. But we need to really address her anxiety issues.

On the positive side of life, we celebrated their 6th birthday today! They're having a party next week, but we went out to dinner at Steak n Shake, then to Target so they could pick out one toy as a gift. Nutty Buddy got a NASCAR truck set and Peanut picked out a craft/drawing set. They seemed to really enjoy the day.

Once we have some more info to share, we will. And we hope it will be coming in soon!

Blood work was done today!!!

I have to say I'm pretty happy with this other pediatrician we've been seeing now. We saw her on Monday, for their annual check-up. At that time we went over all the stuff that the other endo. dr. wanted her to have done. So she got us the bone age scan referral immediately, and we did it that day. Then she got us the nutritionist referral right away too. But the blood work, she had to get some pre-authorization for. As she said, she didn't want us to go through it, then have our HMO deny coverage since they want to send it to a special lab in CA. I realize that these docs are busy, so I didn't expect it really quickly.

Now, since she was in the hospital Monday/Tuesday, I figured Dr. S. would at least try to get it in quickly. Well, they called this morning and it was approved, so we could come in and pick up the referral. Since the husband was home, and didn't leave for a few hours, I took Peanut and went up to do it.

They had to take ELEVEN vials of blood!!! But luckily, it only took one stick, right on top of the bruise from when the medic tried on Monday night. And she was completely fine with it. I'm just so happy that at least this blood work is going! And then when we were leaving, Dr. S. called my cell. I guess she called the house and talked to husband, who told her we were there. She wanted me to stop by and pick up some calorie information for Peanut. She found the recommended caloric intake for her age, but we cut that to 90%, so about 1050-1100 calories/day!

I just can't believe that we're actually making progress on some of this stuff. Actually, all the stuff that the endo. dr. wanted. Of course, no idea how long it will take to get the actual results!

Here's where we are now

OK, so we came home on Tuesday night, which was good. We don't like being in the hospital for long periods of time. She did well when she was there, no really respiratory problems, all was fine. They did an EEG on her that afternoon. Dr. I., her neurologist, came in to tell me the results. Apparently, there were some abnormalities that were found. So, this means that she "could" have a seizure again one day. It doesn't tell us if she actually had one on Monday when she stopped breathing. It can only indicate that she "could" have one again. Not exactly the best news.

He gave us 3 options, 1 - wait and do nothing, 2 - put her on anti-seizure meds, or 3 - give her a 48 hours EEG. He recommends doing the EEG first. So I got that scheduled as an ambulatory one right now. We're just waiting to confirm again that's what he wanted. He wrote that on the script, but her discharge papers said video one, which means she'd be in the hospital for those 48 hours. Unfortunately, we couldn't get her in for the ambulatory one until Sept. 15th. They only do the hook-ups on Tuesdays, and disconnects on Thursday. And they were booked until the 8th, but that's their first day of school.

She'll miss 3 days of school as it is with this, she can't go to school, be active, etc... when she's hooked up like this. That should be interesting, since her brother will still have to go, without her. But we'll deal with that.

Now, we could start the meds just to make sure, but we're not really comfortable jumping right to that. Since we can't really know for sure that she's even had a seizure, we don't really want to start down that path. We'd rather have some more information to see what's going on. Get a longer-term, deeper, bigger picture of what's going on.

I think that's kind of it for now. We did see the nutritionist again, went over things, and she's still not convinced that all of this is only from calories. But nothing else to do there.

Dr. S. was wonderful this time too!! She's going to look into getting pre-authorization for all that blood work that Dr. L. wants to do. So that there's no denying it by the insurance company down the road. And she's going to see what we can do about a PT program for Peanut, something to get her more active, but not with us. She doesn't always respond to us very well, but someone else could really help her. Plus, we asked for extra pulse ox monitor cords, the ones that stick to her toe. We got home from an all-day trip to Kiddieland yesterday to find the box of them, shipped from Apria! So it was super quick!!

The one piece of good news is that we got the results of her bone age scan they did on Monday. Dr. S. said that her bones were the age of a 3 1/2 year old, which is good. I wasn't there, she told husband, but he said that as in most things, younger is better. It means that her internal body isn't growing beyond where she's at either.

I think that's it! As I mentioned above, we went to Kiddieland yesterday! The kids had a blast!! Nutty Buddy went on everything that we let him. Even the higher swinging boat thing, the Scrambler, and all that. But Peanut also went on the roller coaster and the log ride, which was a lot for her! It really was a great time, so glad we got to do that, and that she was out in time.

Back in the hospital

Yep! We're here again! Last night was by far the scariest time of my life. My little Peanut had stopped breathing!! Thankfully, I saw that she had been dozing off, so I kept nudging her to wake her up. So when I did it, and she didn't respond, I checked her. To my horror, her lips were purple and she most likely wasn't breathing.

I managed to grab the phone and call 911, then get her on the floor. The dispatcher was helping me to get her in a better position to help breath, I got her head tilted back, they were having me give her a couple of breaths too. Then she started to have what we think might have been a seizure. Her right leg was twitching. By this time, the paramedics had arrived. I was so happy to see that Ms. Vicky was there! She's one of the medics that we see when we visit our fire station, Peanut really loves to talk to her.

After what seemed like eternity, she finally started to come around a bit, even recognized Vicky. By the time she was in the ambulance, she was starting to come fully back to normal. They put her on some oxygen, checked her blood sugar (normal), and tried to start and IV. But after one failed attempt, Vicky wasn't going to try anymore.

Once in the ER, they decided that there wasn't any reason to try anything. Since we've got all these tests on order, from the other endo. dr., and we just saw her ped. Dr. S. yesterday for her annual checkup, there was no reason to check things there. Instead, they got her up to a room, I went back home and got her some things. Daddy spent the night here, like he always does. He said that she only dropped down twice, and both times, she came back up within a very short time, and on her own.

Now today, she's seen Dr. A. and Dr. S. After talking to Dr. A., he wants neuro to see her again, to rule out any possibility that this is an actual seizure disorder that we're looking at. Although Dr. S. doesn't think it will be that. And I tend to agree. I believe that it's just the lack of oxygen that caused it. She's also going to look into Physical Therapy for her, something that would be an exercise type of therapy for her to do. This way, it's not me directing her, someone else can work with her. I've also got a fit kids class to enroll them into through the Park District this fall.

The other thing we are going to try is a neck brace. It would be for when she's getting sleepy, starts dozing off, at those times of the day, so that she can't bend her neck/throat over and cut the airway off again. It may no be comfortable, but it's something that can help prevent this again!

I think that's it for now... as we now more, I'll update. I do hope that all of this will help Dr. S. with getting the approval for this special lab. She was going to call to ger pre-approval from the insurance company. Thanks to everyone for all the thoughts and emails.