The Good and the Bad Adventures of Rylan

Sorry it's been a while since I have updated this blog! Just get busy with life and it takes a back burner lol. 

Onto Ryry. . .he has been diagnosed with abdominal migraines and his GI put him on this medication called periactin and it is also used as an appetite stimulant. It has been such a blessing to have him on it. He has been on it for nearly 4 weeks and has already gained 3 lbs! He eats so much now. He can't be on this med permanently though so in 6 months they are going to be taking him off the med. I will be curious to see how he does without it. 

This past Friday he has been starting this new possible seizure :( it's so hard to see him go through this all. In one instance he is doing so good but in other areas he is going backwards. His neuro wants to set him up with a sleep deprived EEG to hopefully catch these, it only happens while he is sleeping though. 

A few updates on little Rylan. Since the last update (in December) Rylan has officially hit the 28 lb mark! This is a big milestone for Rylan, because he was at 27lbs since August of 2012. He just gained this in the last few days so I am a little nervous that it could go back down but I am hoping this sticks :) He also had a good Easter.  The pic above is him on Easter Sunday ♥

So with the good comes the bad. . .

In February of this year he started these weird vomiting episodes where he will cry and hold his tummy in pain, he will do this for a few minutes and then he vomits, he normally will only vomit anything that he has eaten that day and usually nothing more than that, and these usually happens in the mornings so he really doesn't vomit a whole lot. During these episodes he gets real tired, pale and shaky, and then afterwards he falls asleep for a couple hours and then once he wakes up he is completely normal like nothing even happened. He did this for 3 days in a row in February and he also did this for 4 days in a row in March. Every time the exact same thing happens, which along with him falling asleep and that there is a pattern to it has me worried.  So we are set to see a GI specialist tomorrow, to hopefully get to the bottom of his lack of weight gain, vomiting and constipation issues.

Also on April 11th he is going to be inpatient for a 24 hour Video EEG and the next day he is getting an MRI done to make sure nothing has changed. I know we have nothing to worry about but I am a little nervous, because when he had the MRI the last time he just turned 2 and he didn't have all these other symptoms. So I worry that they could find something on his MRI, but I can't let that thought get to me.

He is turning 4 next month and he is so little it makes it hard to believe I will have a 4 year old. He is also doing great in school. He misses quite a few days when he is sick and then all his doctors appointments but they are very understanding about it. Right now he is home sick, he isn't to bad right now, but he is running a slight fever so they don't want him at school if there is a fever. I guess that's all the updates for now ♥

2nd Opinion

We finally decided to take Rylan to get a 2nd opinion. It was with our Family Doctor and it was the best decision we could have made. My parents helped a lot and paid for the first visit, but my husband and I have decided to pay out of pocket and keep him as one of Rylan's doctors for the big stuff and only go to his pediatrician when he is sick. It's sad it has had to come to that but we were sick of seeing Rylan's issues growing and they were doing nothing about it. 

So we took him Friday (12-7-12) and I love this doctor because he doesn't sugar coat anything, and he doesn't do the wait and see game that so many doctors like to do. Granted I am a little impatient, but that's not the doctors fault, I just have to trust that God has control over everything and it will happen on his time not mine. It was easier to see this doctor because he is my doctor and my moms so we knew how he was before we set this appointment up (I just thank God that he see's children:) Anyway he started off by asking us what the problems were so we told him about his lack of growth and how the pedi wasn't doing much and that we were concerned about it. He then examined him and he immediately notices Rylan's lymph nodes and shows concern about it, so I went on to explain the first time we noticed it. I go on to show him a picture of the bump that appeared on his back a few months ago. He says that there are lymph nodes everywhere on your body (his pedi says that wasn't a lymph node -but it moved around like one). So then he asks about any testing that he's had done so I pull out the copies of the tests that I had printed out and he is pretty happy that I had done that. He looks through it and I explain to him what I could remember. There was one time where he had a metabolic panel done when he was just a year old so he looks through that test and see's where there's a test that tested his liver and bones, he said it was higher than he would expect it to be at that stage. He also wants Rylan to get a bone age scan which is just an x-ray of his left wrist and it will tell where his bone age is. He seems 99% sure that it won't be where it should be :( 

So Dr. Ross was trying to get Rylan seen by someone at Cardinal Glennon well for some reason they keep denying him because he already see's a neurologist there (what that has to do with his growth is beyond me) so he is trying his hardest to get him in to see someone at Mercy Childrens Hospital. Which may be the better of the two from what I been hearing. I just have to believe that God is taking care of this and that the right doctor for Rylan will step up and see him, so I am trying to be patient with this. 

A little update

As of Halloween Rylan started school :) He is doing great and loves going to school to play with the kids. He is also doing well with his seizures we are down to only 1 every two weeks. Of course we had to add a 2nd med to get there but it's improvement. We have been having to up his meds every week and he always does good when his meds are upped at first but once his body gets use to the new levels that's when we start seeing his seizures coming back more and more. So this is his last week of having to up his medication so we will see after this how well this will continue to work for him. But, I love how well he has been doing lately. The part he still isn't doing to well on is his weight. He has grown an inch though which is good, but he is stuck at 27lbs still and it's been 3 months since he has gained any weight. So we have to go back for another check up in February and at that time if he hasn't grown enough they will send him to a specialist. We have to try to get 2 bottles of pediasure in him a day and it's so hard, because he isn't a big drinker. Once i was able to get him to drink a whole can right before bed. But, the Pediasure still isn't helping his weight gain any. His pedi mentioned if he has ever been to a "tummy doctor" before I told him no but I am wondering if maybe we should request a referrell to one or at least maybe get him tested for a milk sensitivity. Last night after he ate a bowl of cereal he was complaining that his tummy was hurting, so I am going to keep a closer eye on that and if I see a pattern then I will bring it up to his pedi. I just hate waiting though when I know there's something going on with him but the doctors just want to wait and see. . .such is life I guess.
 

Good with the bad

So I thought that Rylans seizures were going to be controlled by keppra but it doesn't look like that will be the case. For the past 4 days he has been having atleast one seizure a day. With the exception of tonight because I believe he had two. Its never ending. On the positive side he officially weighs 27lbs now! That's a huge thing for him right now. I am a little leary on the gain though because his eating habits haven't changed at all. Guess we will keep doing what we are doing and see what November brings.

What Makes Rylan, Rylan ♥

This is the most recent picture I have of Rylan. He is doing better as far as seizures are concerned. They just upped his meds to 7.5mls because he was still having seizures and he didn't have one for a couple weeks until last night he had one that lasted only a few seconds. Its so frustrating when he goes only a couple weeks at a time without one and you think they are controlled and then they start all over again. We also found out that along with Epilepsy he also has developmental delays and speech delays. He also isn't growing like he should. He is dropping down the growth chart he was at 5% and now he is down to 2% with height and weight. Its really concerning to me. His pediatrician wants to reevaluate his growth in November so i am hoping they do something then. At least get some tests going on to find out why he isn't growing like he should be. But with all these issues he keeps having he is still going strong and a little fighter. Nothing brings my little man down. He is always smiling, laughing and playing ♥

The Sickies and LIFE

My poor baby had the sickies over the weekend and is just now getting over it. He is still having his seizures just not as much as he was. So Boo on that one :/ we no longer have a babysitter due to some issues that had arised so things have been pretty stressful around here. Life just sucks right now but we will deal with it. Rylan has a neurology appointment tomorrow and have to discuss our up coming trip to Florida so excited about that and will be WELL NEEDED by then. Rylan is also turning 3 years old this month on the 18th! I can't believe it. My baby isn't a baby anymore ♥ So thats the best update i got so far