Monday, September 13, 2010

Are some kids just sickly or do they have some undignosed health issue?

Olivia has already missed 2 1/2 days of school due to being sick. We are just entering the third week of school. She was out of school last Tuesday after we all spent that holiday weekend feeling yucky and tired. She came home early Firday because she went to the nurses office twice, vomited on the second trip. She was complaining of a sore throat, headache, slight temperature and with the vomiting Pat took her to the doctor for a strep test. She had strep 3 times over the summer and she knows what she feels like when she has it and she said it felt like strep this time. When she has strep she gets VERY sick VERY quickly. She once ended up with Scarlet Fever because I didn't take her to the doctor until she had a sore throat for three days. We don't mess around when she says her throat is really sore and she has a fever. Her rapid strep came back negative. She spent this weekend on a sick roller coaster ride, sick one minute then burst of energy the next. She is home again today. Of course, a cold for her could become much worse. With her illness induced Asthma we are always anticipating that she will end up with bronchitis or pneumonia and need a breathing treatment and end up on Prednisone.

Why is she always sick? Are some kids just sickly? Do you have a sickly kid?

Saturday, September 4, 2010

Quick update

Me and Sassy

Here is our 5 month-old kitten, Sassy. Photo above taken 6/27 and below taken 7/16. We've had her since she was 6 weeks old. My husband surprised me by bringing her home one night! He spoils me : ) She has been full of mischievous kitten energy and curiosity. She is also a little snuggle bug, she is on my stomach as I type (I'm laid out in the recliner to accommodate kitten plus laptop) She also brought fleas with her : ( We just did our 3rd round of Frontline on all the cats. I have most of her younger photos of her on my old computer which is in a box in the basement.

Stephen is doing great at his new school!! He is now in middle school with kids his own age and the classroom is QUIET. Nothing against the kids in his old class but Stephen has severe sensory issues and has had to endure their screaming and screeching for years. I think it was one of the biggest meltdown triggers for him. In some ways being exposed to such irritating audio conditions has helped desensitize him to high pitched noises. His new teacher, one to one and staff are upbeat, friendly and really care about the students. Anyone with a special needs child knows how crucial and influential the attitude and "vibes" of the people around them are to them being happy and able to make progress.
I was worried that pulling him out of summer school and him having such a long break in routine would make his transition to a new school more upsetting for him but it hasn't : ) He also hasn't shown any signs of academic regression. He is independant in the classroom and able to do what is asked of him. He will be working in the library as he did at his old school.
Olivia is enjoying her new teacher and has made one new friend. No complaints from her so far. I'm not impressed with her new teacher yet. She had no homework the first week of school.

Stephen will be having a dental exam, cleaning, work, etc. under general anesthesia for the first time in a couple weeks. This is a first for all of us and I'm really hoping he is able to get through it without feeling too scared. He has been going to our current dentist for years but has never had a thorough exam and cleaning. We have had to restrain him for fillings and crowns. We think he has just gotten to the point that it is becoming too traumatic for him to go to the dentist. He wouldn't even let the hygienist brush his teeth with a regular toothbrush the last time we took him. When his exam was done I put the feelings page up on his communication device and asked him how he was feeling. He touched the "mad" icon, touched the box at the top (will speak the icons you put in there), cleared the box and then touched "mad" again!
Olivia went to a gastroenterologist with her dad and has been taken off the Prilosec and hasn't had any episodes of GERD for a month : )

Tuesday, August 24, 2010

Has puberty increased your child with Autism's frequency of seizures?

Stephen has had a huge increase in seizures in the last 6 months. He was having one or two breakthrough seizures a year since he was diagnosed 3 years ago and he has had about 6 in the past year. He just started puberty in June. He has had 3 since June. Has anyone else had this happen with their child once they hit puberty? Is it a phase? Could it be that he needs a new medication? For now we are increasing his night time dose to 4 pills and will get his levels done in two weeks.

Tuesday, August 3, 2010

I need support too

I am constantly reading and caring deeply about the lives of other parents who have children with special needs. I very frequently take the time to comment on others' blog posts and facebook posts to give support or advice and let them know they aren't alone. I don't get that kind of support myself and it hurts and makes me feel very isolated. It makes me not want to even bother posting anything because I don't get a lot of feedback.

Friday, July 23, 2010

"Bad" behavior, meltdowns, aggression and self-injury are a form of communication for people with Autism

Yet again, summer school has brought on temper tantrums, meltdowns and biting/sib in Stephen. It hasn't been every day but it was escalating. He just started going through puberty a couple weeks ago which I am sure is contributing to his mood issues. But we go through this change in attitude, for the worse, every year when summer school is in session. We will probably never know why EXACTLY because Stephen can't tell us. That isn't entirely accurate. He IS telling us that something is wrong by his change in attitude. This has always been a reliable way for us to tell if Stephen is upset about something. He is a happy guy 99% of the time. When he becomes aggressive, has meltdowns or sib, it is for a reason. He is trying to communicate with us in the only way he knows how when something is wrong. I would rather err on the side of caution and I have pulled him out of summer school with 3 1/2 weeks to go.

It was a very difficult decision to make. I don't want to be overprotective and not let him have some new experiences or get so out of his school routine that he will be even more out of sorts when he goes back to school in the fall. But Stephen is not happy, for whatever reason, is going through puberty and his body is so out of whack from the hormones that he had 2 breakthrough seizures in a month before summer school started.

Thursday, June 24, 2010

Don't use OSR #1 it could kill your children according to the FDA

Click here to see the article about the FDA cracking down on the maker of the alternative Autism "treatment" OSR #1.

Sunday, June 13, 2010

Celebrating Stephen's 12th birthday and the gifts of Autism

We had Stephen's birthday party last week when some of my family could make a visit from Maine. My mom, stepdad, grammy and my friend Jenn and her two boys were our party guests. The party was small but everyone in attendance has been a part of his life consistantly and always loved and accepted him for who he is. Stephen could feel the genuine love coming from eveyone at his party and he had a great time.

My kids' birthdays are always a time for me to reflect. Stephen's Autism has given us many gifts over the years and as he matures they just get better and better.

1-If Stephen loves you, he really loves you and will show you. If he doesn't like you he won't show you affection and it's probably because he can sense that you don't accept him.
2-His having Autism and the challenges it brings show you who your real friends are and which family members you shouldn't even waste your time on.

3-He has helped us understand our own "quirks" and that we are who we are for whatever reason and that they make us unique and give us skills that other people don't have.
4-He loves hugs, kisses and sitting on our laps and isn't embarrassed by us showing our love for him in front of other people.

5-He doesn't reject people based on their appearance or because they aren't cool, gossip, tease or judge other people.
6-He has made us more commited to raising awarness about Autism and that ALL people with disabilities have rights and are not to be discriminated against, made fun of, abused or treated like guinea pigs.
7-He doesn't argue with me about EVERYTHING like a typical boy his age would.

8-He isn't greedy and constantly seeking out more and more things to own. He is happy with what he has.
9-He doesn't care about what is trendy or popular.

10-He would never hurt another living creature without a good reason.

11-He does things when I tell him to the FIRST time.

12-When he smiles it is genuine and never fake or used to manipulate others or mask his true feelings.
13-He doesn't show off or need to be the center of attention.

He blew out the candles for the first time this year!

14-His obsessions with books, animated movies and shows and doing searches for those things on the computer can be used as learning tools and rewards, and future job possibilities.
15-He is very tidy and loves having a place for everything and everything in its place.

16-If you want to have him do something like a chore, grooming, school work, etc. just make it part of his daily routine and he will gladly do it.

Even while opening this present he can't take his eyes off that new stack of books!

17-We get out of bed every day excited to see what new word, skill or level of understanding he will demonstrate.

He likes listening to the sound it makes when you move it.

18-He has taught us to appreciate the little things in life and that unconditional love is priceless and if you have that than you have everything.
19-His echolalia is turning into a way for him to communicate and he is blowing us away with some of the things he CHOOSES to repeat.
He kept repeating this when I was getting him ready for school last week, "I don't know if I can do it. You have to believe. You are stronger than you realize." And we have learned over the years that we are VERY strong because we have made it through every challenge that his Autism has presented us and not given up or completely fallen apart.

20-He is a great big brother and doesn't argue with, tease or beat up on his little sister.

Yes, he still loves the Toy Story movies and we are planning on taking him to his first movie theatre movie when Toy Story 3 comes out on June 18th.

My grammy and my mom. My mom has always been there for me and always supported my son and my family. She has taught me the meaning of unconditional love and I have been able to give to my children. My son is such a lucky young man to have people that love, support and accept him. Without those priceless things he wouldn't be who he is today.
I am so proud of Stephen and the wonderful young man he is turning out to be and all the ways that his Autism has made us better people and parents.
How has Autism touched your life in a positive way?

Thursday, May 20, 2010

Autism and taking pills

For months before Stephen's most recent Neurology appointment he was taking longer and longer to take his seizure meds.

He has never taken pills, ever. When he was really little and still liked juice boxes, I would pop up the flap on side without the straw and cut a little bit of the tip off and either put in crushed pills or pour in liquid medicine. Luckily, for him and us, he has only had to take antibiotics a couple times in his life. He has had to suffer through a few very high fevers, the last one we resorted to suppository acetaminophen, and the body aches, headaches, etc. that go along with flus because he wouldn't even eat chewable medicine : ( When he was diagnosed with Epilepsy about 3 years ago we were lucky that he liked to eat bread with jelly on it. He doesn't drink anything but water. He does not eat yogurt, apple sauce, pudding, jello or any of the usual things you can hide meds in.

So for 3 years, twice a day, every day, he has eaten a piece of bread with his liquid seizure meds on it and covered with grape jam. He would watch a movie in the morning while he ate it. At night he would watch a movie on his computer, once he got a new one, while he ate. The average time it would take him to eat it would be about a half an hour max. Until about 6 months ago. He took longer and longer over the months. The last month he was on the liquid meds he was taking about 1 1/2 hours TWICE A DAY and we had to constantly nag him to eat it. He was telling us, very clearly, in a non-verbal way that he was not liking it anymore. We were starting to worry that one day, very soon, he would refuse it outright and start having seizures.

I tried getting him to swallow small vitamin tablets to see if there was a snow ball's chance in hell that he would take pills. He hated it and kept spitting the pill and a mouth full of water at me. My worry that he was going to stop taking his liquid meds and not be able to take pills was increasing. When we went to his Neurology appointment we discussed giving him pills. Our two choices were Trileptal pills (that is the liquid he was currently taking) and something else that could develop a life threatening rash. We went with the Trileptal pills. I told her how our practice sessions went with the vitamins and asked if he chewed the pills if that was ok because a facebook friend said her child chews his seizure meds and it doesn't affect it's effectiveness. She said it probably wasn't ok for him to chew them. I was not feeling very positive about trying to get him to swallow these new meds and feeling we were on the verge of disaster.

The doctor suggested giving him a candy reward to motivate him to take the pills. We never use food rewards but this was a critical, medically necessary, task that he needed to do. We went shopping with Stephen and picked up a bag of Smarties. That night we showed him the 3 tablets he needed to take and the told him he could have the candy after he took them. He chewed the first one. I thought, oh crap, he's chewing them and the doctor said he shouldn't. I gave him one Smartie after he ate each pill. I was happy he took them but feeling a little freaked out that he chewed them. So I called CVS pharmacy and they said they couldn't find any info that said not to chew them. They gave me number for a local compounding pharmacy and they also told me that there was no info saying that it wasn't ok to chew them. I was sooooo excited!!

I called the Neurologist after the weekend and told her he was chewing them and that I had made some phone calls and was told that it was fine for him to chew them. She said that the price was so high for the liquid that people had been crushing the pills and taking it that way without problems. Why the crap hadn't she told me that at the appointment? I was too happy that he was taking the pills and that he was happy taking them to point out her omission of important info at his appointment.

He has been taking the pills for over a month and it takes a couple minutes instead of over an hour. Once the Smarties ran out he kept taking them without the reward. He did have a break through seizure, a little one, a few weeks ago. We briefly increased his dose and need to get his levels checked tomorrow. He is now also taking chewable vitamins but only if we watch him otherwise he will throw it away. I don't like the idea of gummies because they look like candy. Do any of you know of a chewable vitamin that tastes really good but not so good they will nag you to eat more?

Do any of your kids have issues with taking oral meds? What have you tried? What has worked/not worked?

Thursday, March 25, 2010

My son, "The Last Sandbender"

We bought Stephen his first outdoor sandbox last weekend. Today was only the 2nd time he was able to play in it due to the rain on Monday and Tuesday. These pictures capture just how purposeful "stimming" is for people on the Autism spectrum. Check out the different shapes and movement he creates with the different ways he manipulates the sand.