When you have a special kiddo with multiple issues but no overall diagnosis it's like being lost in a land without road signs. Sure, you treat each problem that comes along: flat tire - change it, seizures - give them meds, run out of gas - stop at the gas station, delayed milestones - do therapy. When you have a collection of "minor" diagnoses, but nothing that explains it all, or how all these pieces fit together, you're constantly wondering if you should be doing more, if there's a treatment that could make a difference.
All the new information about Little Man this week has reinforced the need to at least keep looking for that big answer. I was talking to a dear friend of mine who is in a similar situation with her own son. When you take your child to different specialists, sometimes its hard for friends and family to understand. "Why do you want something to be wrong with your child? Why are you hoping this test or appointment or whatever gives the big diagnosis?"
The truth of the matter is that no one wants something to be wrong with their child, but sometimes things aren't how they should be. People do not simply pass out or bruise or shake or have trouble learning without a reason. I think most every parent of a special child who has been waiting for an answer is both relieved and disappointed each time that reason eludes them.
On the one hand, you can secretly hope that if they don't find the answer that somehow things will turn out okay and this will have just been a phase. On the other hand, you know that something is wrong and it's much easier to fight the enemy you know, than the one you don't.
Having an answer doesn't necessarily mean having a cure, or even better treatments, but it does give you an idea of what to expect. Finding out your child has something treatable would be amazing, finding out it's something chronic but stable would at least mean your child wasn't going to get worse, and finding out it's something progressive would be absolutely devastating and yet at least you could make decisions appropriately.
The search is a very personal decision, but please understand that if you're not involved in the search for your own loved one, the emotions and choices are felt very deeply and we're all doing the very best we can for our own children with the information available to us right now.
Thursday, August 4, 2011
Monday, August 1, 2011
Neurology
Today Little Man saw neurology. It was a fairly productive appointment, though we're still looking for the big answer. The best news is that there were no vascular abnormalities found in his brain the other night. Very good news for an 11 year old indeed! :D One of the things I didn't realize we had to worry about, but now we know.
A few interesting Little Man-isms were added to the list today, though we're not sure what the significance of them yet is. His eyes are always dilated, he's weaker on the left side, and his tremors are no longer just hand tremors but involve his entire arms and sometimes his whole upper body.
There is a lot of concern about his staring spells and also his slurred speech/clumsiness/spacey episodes. These could be more seizures or could have to do with something else, possibly blood pressure? His bruising and vascular system earned him a referral to hematology to further explore what's happening there. He also needs to have regular follow up with neurology in Connecticut - none of this occasional appointment then nothing that he's had a couple times.
Genetics also needs to be involved to see if we can find the root cause of all his issues, and to further explore the connective tissue disorder. Instead of being a cute party trick as we've previously thought, this could actually be serious.
And...just to keep us busy...he needs to restart physical, occupational and speech therapy. I think we've got enough on our plates to keep us busy for a while. They want a lot more extensive testing done in the neuro/hemo/genetics departments. Guess we'll get our crash course at CCMC. They did say that CCMC is a great hospital for neurology though which makes me happy since they'll be so close.
Overall, pretty much more of the same for now. Be cautious, be extremely careful about him becoming dehydrated and be careful in things like baths or activities because we're not sure when he may have a seizure/become unconscious. Really though, he's the same kid he's always been, we just know what to watch for a little more now.
A few interesting Little Man-isms were added to the list today, though we're not sure what the significance of them yet is. His eyes are always dilated, he's weaker on the left side, and his tremors are no longer just hand tremors but involve his entire arms and sometimes his whole upper body.
There is a lot of concern about his staring spells and also his slurred speech/clumsiness/spacey episodes. These could be more seizures or could have to do with something else, possibly blood pressure? His bruising and vascular system earned him a referral to hematology to further explore what's happening there. He also needs to have regular follow up with neurology in Connecticut - none of this occasional appointment then nothing that he's had a couple times.
Genetics also needs to be involved to see if we can find the root cause of all his issues, and to further explore the connective tissue disorder. Instead of being a cute party trick as we've previously thought, this could actually be serious.
And...just to keep us busy...he needs to restart physical, occupational and speech therapy. I think we've got enough on our plates to keep us busy for a while. They want a lot more extensive testing done in the neuro/hemo/genetics departments. Guess we'll get our crash course at CCMC. They did say that CCMC is a great hospital for neurology though which makes me happy since they'll be so close.
Overall, pretty much more of the same for now. Be cautious, be extremely careful about him becoming dehydrated and be careful in things like baths or activities because we're not sure when he may have a seizure/become unconscious. Really though, he's the same kid he's always been, we just know what to watch for a little more now.
Saturday, July 30, 2011
What???
Yesterday and today have been full of shocking news. None of it I can actually believe or process right now so it's just going to come out however it does. :P First of all - the Boston police found my car!!! It was stolen two weeks ago tomorrow and I was sure it was in a million pieces by now. I spoke to my insurance agent yesterday and he agreed it was probably a lost cause...and then my phone rang tonight! I don't know if the chair and medical supplies are still in it, but the police said the only damage they see is the passenger side rear window was broken which we knew from finding the glass where it was stolen from. No body damage and they said the ignition looked fine. I'm not sure how that's possible, but my life is pretty unbelievable right now. My insurance is going to tow it to their lot (right now it's in a secure police lot), inspect and repair it and then I'll have my wheels back!! I can't even believe it's true.
Little Man was here alone with me when the call came in and we both almost started crying. Little Man has always latched onto objects more than people, especially our cars. So when this one was stolen it was like having his arm ripped off. Finding out we're getting it back was the biggest relief to him.
Secondly, the neurology department from Children's Hospital Boston called me yesterday (Friday) and they want to see him Monday afternoon. I was in total shock again. You just don't get specialist appointments the next day (well, next business day) and they don't even have a problem accepting his out of state insurance. CHB is supposed to have one of the best neurology departments in the country. Perhaps we were incredibly lucky to be here when he had his latest seizure. When you have a child with numerous diagnoses and are in search of the overall cause, when you've been searching for years to the cause of all these issues, I'm almost afraid to hope too much for an answer...but yet...when they take an interest in him and want to follow up immediately...sometimes it's hard not to get your hopes up.
Our life seems to be quite bipolar, switching from really low lows to really high highs with no notice but I suppose that's what keeps us going. Welcome to the ride! :D
Little Man was here alone with me when the call came in and we both almost started crying. Little Man has always latched onto objects more than people, especially our cars. So when this one was stolen it was like having his arm ripped off. Finding out we're getting it back was the biggest relief to him.
Secondly, the neurology department from Children's Hospital Boston called me yesterday (Friday) and they want to see him Monday afternoon. I was in total shock again. You just don't get specialist appointments the next day (well, next business day) and they don't even have a problem accepting his out of state insurance. CHB is supposed to have one of the best neurology departments in the country. Perhaps we were incredibly lucky to be here when he had his latest seizure. When you have a child with numerous diagnoses and are in search of the overall cause, when you've been searching for years to the cause of all these issues, I'm almost afraid to hope too much for an answer...but yet...when they take an interest in him and want to follow up immediately...sometimes it's hard not to get your hopes up.
Our life seems to be quite bipolar, switching from really low lows to really high highs with no notice but I suppose that's what keeps us going. Welcome to the ride! :D
Thursday, July 28, 2011
The Morning After
This morning Little Man is completely back to his normal self. You'd never know yesterday was so exciting other than the few new bruises that blend in with the rest of his collection. Let's just say the nurses and doctors definitely saw what I meant by him bruising easily.
So basically, I was on the phone yesterday sometime around 11:30 and Little Man was in the bath. I had Beans check on him and he was fine. I went to check on him a few minutes later and turned the corner out of the living room to see Little Man laying face down in the hallway, naked, wet and not moving. I called his name, shook him and got no response. Looking back, I probably should have called 911 then, but I continued trying to get him to wake up for at least a couple of minutes with no response. Finally he started to move a little, but his speech was very slurred and pretty much not understandable, he couldn't walk or anything and was very lethargic and out of it still.
I managed to get him onto the couch and knew he had to go to the emergency room. Out of panic I suppose, I was trying to figure out which subway stop would get us closest. I finally realized I had to call 911. I'm not sure what took me so long as it should have been obvious. The 911 operator had me lay him on his side while we waited for the ambulance and I sent Beans outside to wait on the front porch and bring them up.
When the ambulance arrived, Little Man had good vitals but was definitely still out of it. The EMTs were very sweet with him and with Beans and had no problem with us riding with them. I was expecting Children's Hospital to confirm the seizure, monitor him for a while, and send us on our way.
Awake but still very lethargic around 4:30
After the initial thousand questions (What happened? What diagnoses does he have? What meds is he on?...) and making sure he was stable, neurology came to examine him. Now, most of the time it's great to hear words like "impressive" and "wow" and "amazing," but when you're at a really good children's hospital and neurologists are examining your child you'd much prefer to here "uh-huh", "that's good", and boring words like that. What you really don't like to see is doctors coming into the room to see your child perform his "neat" tricks. You can guess what happened yesterday.
Little Man's hypotonia, hyperflexibility, tremors, easy bruising and weird tear marks under his skin got a lot of attention from neurology. They decided he needed to have an MRI/MRA that day. (MRA = angiogram, looking at the veins in his head using dye). In order to have the MRA they needed to place a large IV. This is where things got more interesting. Little Man has pretty much see through skin so finding a vein is not hard. Apparently though, that spider vein comment from when he had his scope done in May came back to haunt us. Three tries, two nurses, many ins and outs and digging around later and who knows how much time, and Little Man finally had his IV. The nurses commented on his spider veins again (two separate hospitals 1000 miles away, didn't realize this was a technical term :P) and how they branched off weird or something. Plus they said that his low tone was making it harder because the vein was moving or stretching or something and the tone made traction harder. Anyways, he was a brave, brave little kid. He didn't cry, fight or even flinch. Child Life was quite helpful bringing in an iPad with Lego Harry Potter on it.
Lego Harry Potter on the iPad around 8:30 - much more with it
After the IV was placed it was pretty much a lot of waiting around until the MRI was free. Little Man was much more with it and seemed like his normal self for the most part. At 10:00 they came to take him to radiology. The nurse, anesthesiologist and techs were all so good to him. The anesthesiologist was joking around with the kids and told them that if he did anything to hurt Little Man that they could wait at his car to ambush him when he left work. :P
Mr. Anesthesia first gave Little Man some Versed in his IV then asked him if he felt anything or felt silly. "Nope, not a thing." was the answer. Then he got a little giggly. He started talking about the butterflies on the MRI machine, Mr. Anesthesia then gave him propafol and out like a light he went. All very peacefully. The scan took about an hour and a half during which time Beans and I had the entire radiology waiting room to ourselves and I Skyped with Pax to keep myself distracted.
After the tests, Little Man did not want to wake up for anything. Course, it was after midnight and I didn't want to be awake for anything myself so I didn't blame him one bit. Finally around 1 am he was arousable enough that they let us go back down to the ER. The neuroradiologist reviewed the tests and didn't see anything that needed emergent treatment so we were cleared to go home as soon as Little Man was awake enough. Neurology will be calling us with further results and more of a plan.
Beans lovingly taking care of his brother
Beans did very, very well and I didn't realize how worried he was until the doctor came in after the tests and said that Little Man was okay and we could go home when he woke up. As soon as the door shut behind the doctor, Beans cradled Little Man's head in his arms and started sobbing. He finally admitted that when he saw Little Man laying on the floor, he thought he was dead. Oh my poor little one!
So what exactly happened and what does this mean? Well, Little Man had a seizure which is what started this whole thing. He was diagnosed with seizures in the past, but they were mainly subclinical (not outwardly obvious). His seizure on the bus a few months ago was the closest thing he's had to one like this though. He is already taking seizure medication so it's kind of a wait and see...wait for neurology's call and to get him set up with all his new specialists up here to make sure he's getting proper treatment. Ironically, the seizure seems to be almost the lesser issue in the big picture though.
In his examinations yesterday, his blood vessel/bruising issue was brought to the forefront. His hypotonia and hyperflexibility were very much stressed as an issue. His tremors and coordination and motor skills are also much more of a concern than had previously been realized. In addition to all that, there's a likelihood that there's an issue with his blood pressure getting to low and/or strange vein compression or dialation that's affecting the blood flow to his brain. There is a diagnosis that covers most of these issues that has been thrown around, but I don't think he's actually been diagnosed with it yet. He's going to require a lot more follow up and testing and yes, more doctor visits. Thank goodness this all happened here, in the heart of good medical care, rather than when we were in Florida. Apparently moving to New England wasn't essential only for Little Man's education, but for his health as well.
So basically, I was on the phone yesterday sometime around 11:30 and Little Man was in the bath. I had Beans check on him and he was fine. I went to check on him a few minutes later and turned the corner out of the living room to see Little Man laying face down in the hallway, naked, wet and not moving. I called his name, shook him and got no response. Looking back, I probably should have called 911 then, but I continued trying to get him to wake up for at least a couple of minutes with no response. Finally he started to move a little, but his speech was very slurred and pretty much not understandable, he couldn't walk or anything and was very lethargic and out of it still.
I managed to get him onto the couch and knew he had to go to the emergency room. Out of panic I suppose, I was trying to figure out which subway stop would get us closest. I finally realized I had to call 911. I'm not sure what took me so long as it should have been obvious. The 911 operator had me lay him on his side while we waited for the ambulance and I sent Beans outside to wait on the front porch and bring them up.
When the ambulance arrived, Little Man had good vitals but was definitely still out of it. The EMTs were very sweet with him and with Beans and had no problem with us riding with them. I was expecting Children's Hospital to confirm the seizure, monitor him for a while, and send us on our way.
Awake but still very lethargic around 4:30Little Man's hypotonia, hyperflexibility, tremors, easy bruising and weird tear marks under his skin got a lot of attention from neurology. They decided he needed to have an MRI/MRA that day. (MRA = angiogram, looking at the veins in his head using dye). In order to have the MRA they needed to place a large IV. This is where things got more interesting. Little Man has pretty much see through skin so finding a vein is not hard. Apparently though, that spider vein comment from when he had his scope done in May came back to haunt us. Three tries, two nurses, many ins and outs and digging around later and who knows how much time, and Little Man finally had his IV. The nurses commented on his spider veins again (two separate hospitals 1000 miles away, didn't realize this was a technical term :P) and how they branched off weird or something. Plus they said that his low tone was making it harder because the vein was moving or stretching or something and the tone made traction harder. Anyways, he was a brave, brave little kid. He didn't cry, fight or even flinch. Child Life was quite helpful bringing in an iPad with Lego Harry Potter on it.
Lego Harry Potter on the iPad around 8:30 - much more with itAfter the IV was placed it was pretty much a lot of waiting around until the MRI was free. Little Man was much more with it and seemed like his normal self for the most part. At 10:00 they came to take him to radiology. The nurse, anesthesiologist and techs were all so good to him. The anesthesiologist was joking around with the kids and told them that if he did anything to hurt Little Man that they could wait at his car to ambush him when he left work. :P
Mr. Anesthesia first gave Little Man some Versed in his IV then asked him if he felt anything or felt silly. "Nope, not a thing." was the answer. Then he got a little giggly. He started talking about the butterflies on the MRI machine, Mr. Anesthesia then gave him propafol and out like a light he went. All very peacefully. The scan took about an hour and a half during which time Beans and I had the entire radiology waiting room to ourselves and I Skyped with Pax to keep myself distracted.
After the tests, Little Man did not want to wake up for anything. Course, it was after midnight and I didn't want to be awake for anything myself so I didn't blame him one bit. Finally around 1 am he was arousable enough that they let us go back down to the ER. The neuroradiologist reviewed the tests and didn't see anything that needed emergent treatment so we were cleared to go home as soon as Little Man was awake enough. Neurology will be calling us with further results and more of a plan.
Beans lovingly taking care of his brotherBeans did very, very well and I didn't realize how worried he was until the doctor came in after the tests and said that Little Man was okay and we could go home when he woke up. As soon as the door shut behind the doctor, Beans cradled Little Man's head in his arms and started sobbing. He finally admitted that when he saw Little Man laying on the floor, he thought he was dead. Oh my poor little one!
So what exactly happened and what does this mean? Well, Little Man had a seizure which is what started this whole thing. He was diagnosed with seizures in the past, but they were mainly subclinical (not outwardly obvious). His seizure on the bus a few months ago was the closest thing he's had to one like this though. He is already taking seizure medication so it's kind of a wait and see...wait for neurology's call and to get him set up with all his new specialists up here to make sure he's getting proper treatment. Ironically, the seizure seems to be almost the lesser issue in the big picture though.
In his examinations yesterday, his blood vessel/bruising issue was brought to the forefront. His hypotonia and hyperflexibility were very much stressed as an issue. His tremors and coordination and motor skills are also much more of a concern than had previously been realized. In addition to all that, there's a likelihood that there's an issue with his blood pressure getting to low and/or strange vein compression or dialation that's affecting the blood flow to his brain. There is a diagnosis that covers most of these issues that has been thrown around, but I don't think he's actually been diagnosed with it yet. He's going to require a lot more follow up and testing and yes, more doctor visits. Thank goodness this all happened here, in the heart of good medical care, rather than when we were in Florida. Apparently moving to New England wasn't essential only for Little Man's education, but for his health as well.
Wednesday, July 27, 2011
Another Update
It's almost midnight now. Little Man is finished with his tests and in recovery. I saw him a few minutes ago when they transferred him from radiology to the recovery room and he was still completely out. His oxygen levels are good on blow by oxygen. I don't have any results yet, after he's finished in the recovery room they'll take us back down to the ER where we find out what's next. Thanks for all the calls and texts and especially to Pax for Skyping the whole time he was in and keeping me distracted.
Update
If you missed current events, check previous posts.
We're still at Children's Hospital Boston. Apparently things with Little Man are a bigger issue than I thought over the past while. They are very concerned about his veins, hypotonia, bruising and something else. They just placed a large gauge iv to do the MRI/angiogram with to check the veins in his head. There's a possibility today's issue is due to some low blood pressure or vein problem in his head. It's 8 pm and they still have to do the sedation, the tests, then recovery and then we'll go from there.
We're still at Children's Hospital Boston. Apparently things with Little Man are a bigger issue than I thought over the past while. They are very concerned about his veins, hypotonia, bruising and something else. They just placed a large gauge iv to do the MRI/angiogram with to check the veins in his head. There's a possibility today's issue is due to some low blood pressure or vein problem in his head. It's 8 pm and they still have to do the sedation, the tests, then recovery and then we'll go from there.
Unconscious
Quick update: Little Man had a suspected seizure. I found him unconscious, face down in the hall. Boston EMS transported him to Children's Hospital. When I got him awake his speech was too slurred to understand and he was very disorientated. He's pretty much back to normal now. We're in the Emergency Dept here (CHB) and they've done an EKG to rule out anything with his heart and we've seen 2 neurologists. They're now trying to get him in for a brain MRI/MRA with sedation right away. Neuros were very unimpressed with his floppiness, which is the norm for him, and his strange red dot bruising. For now, we wait and see what the teams decide.
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