Showing posts with label Fragile X. Show all posts
Showing posts with label Fragile X. Show all posts

Friday, January 7, 2011

Logan's Eyes

Okay... I am not really sure if you all notice it or not from the pic, but Logan's eyes have developed really dark circles under them. I have reviewed lots of my pics and know for a fact that these dark circles are fairly recent.
I am really trying not to be paranoid, but I just have this weird bad feeling... I don't know. I am probably COMPLETELY over-reacting! Neil and I were just discussing the other night Logan's breathing when he sleeps. It sounds like he is trying really hard. When he is awake he is completely fine. It's not like he stays up super late either...He goes to bed by 9 p.m. and sleeps until at least 8 a.m. every day...and if it's not a school day he will sleep until 10 a.m. if we let him.

We did see Logan's psychiatrist, Dr. Rustagi, yesterday and he prescribed Logan a new medication and took him off the other medication. We went from Haloperidol to this new one called Intuniv. It is a lot more expensive because there is no generic form...but if it helps him, I am okay with the cost. The only side effects that I have noticed so far is that he has been a little more emotional today (he doesn't normally cry -- he will yell and scream, but he doesn't cry).

On a positive note, I did speak with the behavioral therapist today. We have a meeting with her next Thursday. She will actually come to the house after the first visit (if we choose to do so) and work with him here. So....we will see how that goes.

Anyhow, I am going to go do a "Google" search on Intuniv... I have yet to look into how this medication works and what other parents think about it.

Have a great Friday night all!

Autumn

Tuesday, December 21, 2010

Our Logan

Logan Hunter was born June 24, 2006 at a healthy weight of 7 lbs 1 oz and 19 1/2 in long. He was and still is  perfect in our eyes! He is our third and final child. Out of our three children he was the only one who did NOT go to the NICU. We brought him home as soon as they allowed us to do so. Our family was complete and we were elated!

Logan developed normally (btw...I loathe the word "normal") up until he was about 18 months... He did walk a little later (around 14 months), but that was not really a concern. However, around 18 months we noticed that he wasnt really talking and there were A LOT of tantrums. At most he said "mama" and "dada." The way he communicated his needs was done mainly by pointing. We did enroll him in speech therapy for a year from 2 to 3 years old. This helped him tremendously and put him back into the age appropriate range. Nearing the end of our therapy sessions Logans therapist noticed a lack of participation, attention, and more agression than what his "normal" was. She signed off on his speech and recommended we discuss the lack of attention and agression with his pediatrician. 

We followed up with Logans pediatrician and he reassured us that Logan was just a typical hyperactive little boy. As the days, weeks, months passed Logan continued to become more agressive...hitting, kicking, slapping, pinching anyone who was around him. He was actually kicked out of daycare for these behaviors and not being able to socialize with peers. My husband and I decided that the best thing for Logan and our family was for me to stay at home and take care of him full-time. We then went back to the pediatrician and he put Logan on a medication for agression called Risperdal. I am not a fan of "drugging" children, but Logan was hurting others and himself. His Risperdal in conjunction with a psychologist helped for a while up until recently.

Logan has started some new behaviors such as hitting himself, scratching himself, not crying when he does get hurt, etc. This concerned us and our psychologist. We have been referred to a psychiatrist who now regulates Logans medication instead of his pediatrician. His psychiatrist has also discontinued the Risperdal and is trying a new medication called Haloperidol. Logans psychiatrist also referred us to a geneticist because he felt that Logan does not fit in any certain disorder one hundred percent. He shows signs of Autism, ADHD, PDD, and several others I just cannot think of at the moment.

We met with Dr. Bader (Logan's Geneticist) a few weeks ago and she has given us some new leads... We have now officially had an EEG, MRI, bloodwork, urinalysis, and an observation done by her. Her findings so far are that he definitely has PDD (pervasive developmental disorder), his balance is off (we thought he was just clumsy), he didnt move his right side in utero (reason unknown... she can tell by him only having one crease instead of two on his hand), and she thinks that he has some sort of genetic disorder causing the delay, agression, and constant drooling. She is checking into two primary disorders: Fragile X and Prader Willi.

Our hope is to find out what is going on with Logan and treat him the best way possible so that he may live the most fulfilling life possible. He is the reason I wake up every morning! I love my baby boy. Soooo...on we go to therapy three times a week. Occupational, Speech, and Physical Therapy.

January 3rd we meet with a neuropsychologist who specializes in Autism, and on January 18th we meet back with Dr. Bader to discuss all of the test results and possibilities. Please pray for Logan!

My hope for this blog is to keep family and friends informed on how Logan is doing and the progress we are making...

Thanks for reading!!!