8iRWeiXjcKj9kUz5Tebo4_k_FtY Life with Two Special Needs Children: April 2011

Monday, April 25, 2011

Med Changes, Med Changes and More Med Changes

Approximately six weeks ago when I took Cassidy to her psychiatrist med check appointment, things had been really difficult with her.  It was to the point that we were thinking she needed case management again.  It's hard to tell if it is just due to her diagnosis or if it's because of all the attention that Caleb gets having two in-home support workers five nights a week.  I explained to the doctor what we've been seeing at home and talked about our thought about case management.  She told us if it affected her at school she would probably qualify.

After discussing further what was going on and her current medication, the doctor said she'd like to take her off of the current med and switch her to a different med.  We were familiar with the med becuase it was something Caleb had been on since just before he turned four.  So it was decided that we would titrate down the one med and titrate up the other. 

I made an appointment to discuss seeing if she qualified for case management services again.  While she does not qualify for a Severe Emotional Disturbance waiver through the state, she does qualify for case management and attendant care.  The fact that she doesn't qualify for the waiver is not a big deal for us becuase she already has a State medical card which is what pays for these type of services due to her being adopted through the foster care system.

The last couple of weeks with Cassidy have been very, VERY difficult.  She's completely defiant and disrespectful at home and school, throwing fits at home and just out and out difficult.  It's been a very long couple of weeks and that's putting it mildly.

I took Cassidy to the psychiatrist on Friday and we ended up having to have her case manager called out of a meeting to help me in the lobby while we waited for her appointment.  She refused to sit in the chair and then all of a sudden freaked out because she was going to miss snack at school.  She was getting loud yelling that she didn't want to be there, that she wanted a snack, flapping her arms and hitting me.  I tired to calm her down, but nothing worked.  So one of the staff came out and asked if we needed anything and I told her to see if her case manager was there.

The case manager comes in and after talking for a few minutes say, "I'll go get you a snack."  Thanks! 

When the doctor came out and was ready for us, we were still in the hallway trying to get Cassidy to calm down.  We went back towards her office and stopped at the scale.  Cassidy refused to get weighed.  Finally we got her to cooperate.  Then we went into the office and more difficulty.  Refusing to talk about how she's been doing, disrespectful and defiant.  At least the doctor was able to see!

I explained the difficulties at home and at school - especially the fact that she's been permanently removed from the quad of desks due to her constantly wanting to talk and disrupt her classmates from doing their work.  The doctor said that the previous change was obviously not a good one and we'll start taking her off of that and adding a new medicaiton very slowly.  I am hoping that is the answer!

When we talked with Caleb's neurologist last week he had mentioned increasing one of his seizure meds due to his lab levels being lower than last time.  It took until Friday (or so I thought) for his staff to call in the change in the Lamictal, which was the only medication that I thought he was increasing into the pharmacy.  When we got the Lamictal, I was curious how much our insurance had paid becuase the retail value of his prescription was over $800.  EEEEKKKKK!!!!  (I am so thankful for good insurance and the medical card!!!)  I noticed that there was a prescription charge for a pharmacy that we don't use and haven't used for quite a number of years.  I remembered seeing on the caller ID a call from the store a few days earlier and called them back to see if they had a prescription for Caleb.  Sure enough, the doctor's staff had called it into this other pharmacy.  When they answered the phone they said the location, but I didn't recognize where it was at.  So I asked where they were located.  They were located in Andover, which is a 30-40 minute drive from where we live.  They said they could transfer it to the store by our house.

I went and picked up the prescription this morning and had difficulty, which made me sure that I would not be moving our prescriptions back there any time soon!

I really should have gone to school to become a pharmacist with all of these medications and med changes that we go through on a regular basis!


Thursday, April 21, 2011

Caleb's EEG Results

Monday night late we received a call from Caleb's neurologist.  The EEG showed normal activity.  We had labs drawn the Saturday before the EEG and the doctor said that his levels were a little lower this time than when his levels were checked a while back.  So it has been decided to increase one of his seizure meds to see if that will help some of the irritability that everyone has been seeing.

 I feel really bad because I was disappointed that the EEG was normal.  Not that I want something to be wrong with our child, but want something that we can put on our finger on and say, "BINGO!  That's what's causing the problem!" 

Our poor Munchkin has gone through so many tests and we still have nothing that we can, "BINGO" and it's frustrating.  However, we'll just keep plugging away and taking day by day, hour by hour, minute by minute, second by second, as that is how quickly things can change!

Thursday, April 14, 2011

Caleb EEG #8!

Caleb has had so many EEGs that I have lost count, but I think this is number 7.  His first was when he was three years old and we had to keep him up for 24 hours, which ended up being more like 25 or 26 when all was said and done.  I remember spending the car ride to the doctor's office sitting in the back seat with him with a baggie of ice and putting it on his face every time he tried to fall asleep.

Caleb then had another one when he was 7, which was another 24 hour sleep deprived one, before he was ordred to have the Video EEG that I talked about here

Then when Caleb was hospitalized in October of 2009, he ended up having two during the five days he was at St. Francis.

Then after having the neuropsych testing and being given the diagnosis of Childhood Disintegrative Disorder and being urged to look further into a medical cause for Caleb's regression, his neurologist ordered a spinal tap and another EEG, which would be number six.

Then during Caleb's hospitalization in August of last year we had number seven.

So here we are preparing for EEG number eight in six years!!!

I really wish there was some other we could figure out if his seizures were under control rather than having to have him stay up all night (which in turn requires Tony and/or I to stay up with him), get hooked up to a ton of leads and have his brain waves monitored.  But, that's not the case!!! 

I am very thankful for Caleb's doctor who takes seriously what we are going through with Caleb.

It is now 4:33 a.m.  We are not scheduled to arrive at the hospital until 9 for a 11 procedure.  Caleb has already started complaining that he is hungry and he cannot eat or have anything to drink now.  He can have a sip of water to take his seizure meds at 6, but that is it.  It's going to be a very long day!!!!

Tony stayed up with Caleb the beginning of the night while I tried to sleep.  Tried to sleep are the key words.  Our dog, Bailey, was very stressed with what was going on and kept jumping up and down from the bed and when she would be on the bed, she was either right next to me or standing over my head!  It was very difficult to try and sleep with that going on, so I ended up putting her in the kids' bathroom!  A mom's got to do what a mom's got to do, right?  I ended up getting up about 1:30 and Tony is upstairs sleeping now so that he'll be rested enough to drive to the hospital.

I pray that we find some answers and that it's just a matter of changing/adjusting Caleb's seizures meds and we can have our loving, very less irritable, Caleb back.

Tuesday, April 5, 2011

Lord, Give Me Strength

Dear Lord,

Please give me Your strength to make it through today!


This is my prayer every morning!  It's been especially that the last few weeks with much more emphasis. 

Tony and I have been very fortunate that we have not had issues with both Caleb and Cassidy at the same time.  Normally, when things are really bad with one child, the other child is in a good place.  Right now neither child is in a good place.  Caleb is having many more outbursts and Cassidy is as oppositional and defiant as ever!  She's even having many problems at school.

There are some days, like this morning, where I wonder, "Why?"  "When will this end?"  "What have I done wrong?"

This morning I was hit and kicked all because I was trying to get Caleb's shoes and braces on him.  I finally got them on and got Caleb outside to wait for the bus.  He told me he was going to run away and twice he walked into the street (without looking) before I could reach him and bring him back to the garage.  I was very close to calling the school and telling them to send the resource officer to pick him up because I really didn't know if he was going to be safe enough to put on the bus.  (Last year we had a lot of problems and the bus driver threatened not to take him and told me I would have to drive him to school.  We discussed at the transition meeting to his new school that if I took Caleb to school because of his behavior, he would always want me to take him to school and that was not an option.  It was decided among us that if Caleb was not safe to ride the bus to school - which I would never want to put any of the other kids at risk because of Caleb's behavior - that we would have the option of having the resource officer come to the house and transport him to school.)  However, as quickly as it all started, it ended.

I took Cassidy to her therapist appointment this afternoon.  This was only our third appointment and I think this is the quickest honeymoon period ever - because she sure showed her little attitude to the therapist today!  After their alone time, the therapist came out and told me, "This is going to be difficult."  Thanks, that's just what I needed to hear!!!!  I know it's not going to be an overnight fix, but after reading a few days ago that Caleb's case is "fascinating" to a world-renowned Geneticist, it's not really what I wanted to hear.

I made a desperate call to Caleb's neurologist this morning.  He had an EEG scheduled for May 3rd at St. Francis, where they only do one pediatric sedation a day.  I knew we could not wait until then with as bad as things have been.  I really didn't want to go to Wesley, but I knew we'd be able to get in sooner, so I made the call.  We now go April 14th for Caleb's EEG.  I really pray that we find that his seizures are not under control and we can tweak his meds and things can get back to our normal, without the need to walk on egg shells waiting for the next rage to happen!  We all need some relief!!!!