UCLA appt today!!

We go see Dr. S. at 4pm today....which means I'll be home around 10pm tonight. I love Dr. S and wouldn't trade him for the world, but man, I hate these visits!
I am going by myself with Boo this time so Rich can stay home with the other kids. It's gonna be a loonnnnggggg afternoon!
I am trying to get my notes ready so I can go prepared. Wish us luck!

We finally heard back from Dr. S

We had been playing phone tag with Dr. S for the last couple of weeks. I finally got to have quite a long conversation with him the other night. (I just have to add that he is truly an exceptional Dr. He spoke with me for 35 minutes on the phone about Boo).

We are cutting back on one of his meds to see if that will decrease his paranoia. We also have an appt to go see Dr. S next week at which point we'll discuss where we go from here.

He feels that Boo could be showing the beginning signs of bipolar disorder (this is not a shock as we've discussed the possibility in the past) or even possibly schizophrenia. The last possibility is that because Boo has so many different challenges, he may not respond to medication in the same way *most* people with autism, adhd, gad, fae or bipolar may respond.

When we first discussed the use of medication, I was told it was a matter of finding the *right* medication. Some kids do great on one med, while others may not respond at all. Usually after trying a few, you find the right one and start seeing an improvement in behavior/symptoms.
So far, after 4 different meds we have seen no improvement and in fact, we've seen symptoms worsen. Dr. S is trying to figure out if the symptoms that have increased are due to the medication and if so, was the medication working on one symptom while worsening another. Or , is the medication doing nothing but Boo's symptoms are intensifying despite the meds.
For example, when we tried Ritalin, we saw an increase in his anger and rigidity. I thought it was because the medication was NOT working when in fact it was the opposite. The Ritalin gave him the ability to focus more but in giving him that ability it gave way to "hyperfocusing" and more of an Obsessive Compulsive behavior. So while it helps one symptom, it can worsen another.

Despite the unsuccessful attempts with medication, I am hopeful that the right treatment is out there. For me, half the battle was getting a Dr. to hear what I had to say and see with his own eyes what we see day in and day out with Boo. We finally have someone who sees the severity of the situation and is committed to helping us and for that, I am truly grateful.

SCREAMS ...

I was reading one of my favorite websites (FAS resources) and found this bit of info. I thought I would share because it's simple bullet points that seem to really lay out solid tips for parents of FAS kids.

Structure with daily routine, with simple concrete rules Cues (again and again and again), can be verbal, audio, visual, whatever works Role models (family & TV), show them the proper way to act, children mimic us Environment with low sensory stimulation (small classroooms, not too much clutter) Attitude of others, understanding that behavior is neurological, not willful misconduct Medications, vitamin supplements and healthy diet are quite helpful Supervision - 24/7 (lack of impulse control and poor judgment at all ages)

This was written by Teresa Kellerman, a mother and advocate of people living with FAS/FAE.
Here is a link to the full article: http://www.come-over.to/FAS/ScreamsArticle.htm

It's official....we're on the waiting list!!!

Happy New Year to everyone! I pray that this coming year brings hope and peace to everyone!

I am hopeful today because we have been officially put on the waiting list for a special program up at UCLA for Boo! It is a partial hospitalization program. He would go 5 days a week for 8 hours a day! It is the only partial hospitalization program for little ones in this area.

The downside is that it is a huge commute every day, there is up to a two year waiting list and our insurance may not cover the whole thing. (insert prayer request here).

As I've mentioned before, Boo is extremely complicated. I keep getting asked "Well why not just put him back in that ED preschool program while you're waiting...if things are really that bad with Boo". The thing is, once again, an ED preschool program like the one he was in focuses on behavioral modification. The main focus is to change negative/aggressive behavior. While Boo definitely needs to change his behavior, he needs the right tools to learn how to do this and we need to be treating the underlying cause of these behaviors. Let me give an analogy. If you're in a boat and there's a leak, do you start bailing out the water or do you try to fix the root of the problem which is the hole in the boat? Do you fix the hole with a band aid or do you find something that will "work"?
This is the boat we're in. Unfortunately, there are many many holes in Boo's boat and everyone keeps trying to hand us band aids to fix them!

I refuse to give up on finding the right treatment for Boo. I am committed to bringing awareness to these complicated children. We may wait a long time for a spot in the program at UCLA but in the meantime, we continue to take it one day at a time. There are no magic quick fixes.
We have changed some meds around but haven't seen much of a difference. I also have finally finished The Explosive Child.

It was an excellent book and I am confident it will help us down the road. For now, we can only use bits and pieces of this book. Boo's ability to listen to my suggestions and think for himself are very limited.

My goal right now is to find a way to reduce his rages. The tiniest things set him off. A typical day for us looks like this:

12am - Boo wakes up, comes into bed with us and begins rocking back and forth hitting me and Rich with his elbow or head (unintentionally).

12:30am- Cries out in his sleep and inadvertently punches Rich.

1am- Snoring, grinding teeth, twitching, yelling.....

2am-6:30am- kicking, snoring, rocking, yelling, and sometimes wakes up because his pull up has leaked (fun times!)

6:30am- He's up! Goes into Bo's room and begins jumping on his bed asking Bo to help him play a video game. Bo says no, he needs to get ready for school. Boo screams at Bo and I jump up because I know something is going to get thrown.

7am-9am- We need to get kids ready for school and out the door. Boo wants something to eat but doesn't know what he wants. He throws himself down on the ground and begins an all out tantrum because I don't have time to make him pancakes right that second. He then screams and hits me. I tell him "no hitting" and wind up holding him, while trying to redirect him. (did I mention he has OCD?) He takes an interest in a toy and I say it's time to go. He sits staring at his toy. I tell him 10 more times it's time to leave. Kids are in the car. Boo is not budging. I tell him I'll have to carry him to the car and he screams no and runs out the door and down the sidewalk. He finally gets in the car and starts hitting his brother for no reason .........we get to school and he has to hear his brother and sister say goodbye to him at least two times or he FREAKS OUT.

9am-2pm Lots of screaming, demands, kicking, throwing, hitting etc. I must keep him engaged in an activity constantly or he becomes destructive. We try reading books and doing some "school" but his attention is very limited. We can't treat his ADHD with stimulants because it exasperbates his rage. He tries to tell me what he wants to do but has a hard time with articulation.

2pm-Rich gets home pick up the kids from school, play referree, keep Boo away from the kids so they can get their homework done and have downtime. Boo gets frustrated that he can't play a certain game or watch a certain show and melts down. Raging begins again (for the average of the 5th time that day).

5-9pm Raging, throwing, kicking, frustration...................................then sleep

9pm-12am- snoring, twitching, kicking yelling, crying in his sleep :(


Once again, I feel the need to reiterate that we have tried all the conventional parenting techniques that worked very well on our other three children. Boo's brain is damaged. It is not wired the way an average person's brain is wired.
The part of his brain that regulates his emotions, gives him reasoning skills and impulse control is just not developed. Plus, he has Autism and anxiety and possibly bipolar disorder. All the time outs in the world will not "teach" him to change his behavior.

I know I've repeated several things tonight in this post but I feel it necessary. People need to understand that my child is not a brat. He's not "getting his way". Believe me, if he had a choice, "his way", would include having a normal childhood and being able to feel happy the majority of the time instead of rage and anger. I would guess that "his way" would NOT include wanting to die because he's sick of feeling angry :( (**disclaimer....yes his psychiatrist is fully aware of these things).

Thanks again for reading this and please keep Boo in your prayers.....until next time......

OY Vey, Another day!

We've been going through an exceptionally difficult time with Boo lately. He seems to be reacting poorly to the increase in his meds.
The medication that was supposed to decrease his anxiety has increased it and turned it into paranoia instead of just plain ol anxiety.

I have a call into Dr. S and hopefully will hear back from him tomorrow.

Please stay tuned for updates.....

A very Merry Christmas to all!!!!!

To anyone who visits my blog, I just want to wish you all a very Merry Christmas and a healthy and peaceful New Year!!!!

We have had our challenges this year but it only takes a minute to sit back and think of how blessed we are!

We have a roof over our heads, food in our fridge, a job and 4 beautiful children! I am so grateful for my husband and the hard work he does. He is my rock!

I pray this next year is filled with healing for my sons and peace for our family. I pray this for all parents with special needs children! May God bless and keep you all! Merry Merry Christmas!!!

If you don't laugh, you'll cry....and we did both!

So, Boo had an appt. with his Dr. up at UCLA yesterday. I had my questions and my notes ready. I packed a small snack for Boo and Rich had the other kids covered as far as dinner and childcare.
We were on the road by 3:30 for his 5pm appt. I thought we were doing really well.
The traffic came to a standstill about 3 miles from our exit. Thankfully, Boo was asleep and didn't have to endure the 2 hour drive! That's right! It took us 2 hours to get there. We were 3o minutes late and I was a basket case!
I pulled up to the loading zone and ran in to let them know we were there but still had to park. When I walked in, the receptionist said "Don't worry....see all these people here....they are all waiting for Dr. S too!"
We parked the car and Boo informed us that he had an accident while he was sleeping. He was very upset and did not want anyone to see him nor did he want to wear wet pants! I assured him I must have something in the trunk (remembering I had put a box for Goodwill back there). Well, it turns out they were all my clothes! Then I had the brilliant idea to cut the lining out of his wet pants (They were double sided). All I had to use for a tool were Rich's keys. All I succeeded in doing was ripping the inside of the pants and making them more difficult to wear! I had to think quick and came up with the idea to have him put a pair of my pj bottoms on under his wet pants so he wouldn't feel the wet. He agreed to this and off we went to see Dr. S.
When we walked into the office, I could tell by the expressions on the other parent's faces that they had been waiting a long time! I asked one mother what time her appt was and she said it was at 3! A few other parents chimed in with their appt times and apparently there were 5 patients ahead of us. I quickly struck up a conversation with a mom who's son was trying to get Boo to play with him. Boo took to the corner and decided to hiss at all the other kids who came close to him. Ironically, all of these children were a lot like Boo. I can spot Autism and ADHD a mile away now!
As the mom of the little boy and I got to talking, another family joined the conversation. I had shared that we came from LB to see Dr. S. These families came from Lancaster and Valencia! We all agreed that even though we wait for hours to see Dr. S, it's worth it. The reason he is always late for his appts, is because he takes as much time with his patients as they need. He also works at the psychiatric hospital adjacent to his office so he is usually there when he is paged that he has patients to see.
We were the last people to see Dr. S. He called us back at 8pm. He spent an hour and a half with us discussing Boo. We discussed recent studies and findings on medication. We discussed the multiple diagnoses that Boo has. He believes that Boo is very distressed. Boo's little brain has so much damage from so many different things that it's nearly impossible to sort out what percentage of his challenges come from which diagnosis. He is truly a puzzle!
We were advised to get another pediatric neuro and also a ped. cardiologist. Boo had an enlarged heart as a baby and now that he is on some pretty strong meds, he needs to be followed. We need to see the Neuro to make sure he isn't having seizure activity. 10% of children with autism, have seizures.
The last thing Dr. S said to me as I was walking out was "I'm sorry we haven't been more successful at helping Boo so far". I just wanted to lay down on that floor and bawl like a baby.
I have one of the best pediatric psychiatrists around treating my son and even HE can't help him.
We were certain that we would see an improvement in Boo by now. I have an amazing little boy under all the layers of diagnoses that just wants to live and love but he can't. Children are supposed to be carefree! They are supposed to play and learn and make friends. My Boo spends his days in a rigid state. He is full of fear and anger. He is obsessive and impulsive and he hates himself for that.
So tonight we try a new medication. This one is supposed to help him sleep. It is a heart medication that lowers blood pressure but it is used as a sedative. All we can do is take it one moment at a time. Oh and by the way....we got home at 10pm last night.

(I have not forgotten my book promise. It's coming soon!)