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

There is a LIGHT!!!

Starting to finally see the meds working for my Rybear :-) I am so happy its finally working for him. . .he doesn't deserve to go through this at such a young age. We took him to the doctors today though and he has fluid in both ear and allergies, so we had to add another med for him :/ but hopefully it's nothing long term. Anyway that's all for the update i have today ♥ finally a pretty good one♥

Heartache and frequent seizures

 Rylan's seizures seem to be getting more frequent while on a low dose of meds :-( It's so stressful. . .because while i want his neuro to up his meds i am scared to at the same time, because of his last reaction. I wish i could just take it all away from him so he doesn't have to go through this. I see friends and family having healthy kids all the time so I sometimes wonder why my son has to go through this. It's very hard to accept it sometimes. But, there is a reason God wanted to put Rylan with me and I know we can all get through this. He is a strong little guy and so far these seizures have not kept him down. There are some days that are harder than others but he always has a smile at some point in the day. Mommy loves you little man ♥

And I have posted a video of what rylan's seizures look like

http://www.youtube.com/watch?v=BV44CErEN1s&feature=g-upl&context=G20d8027AUAAAAAAAAAA

Somebody Please Wake Me Up :/

A lot has happened since my last post a few weeks ago. First, the last post I have on here was about taking him to E.R. for strange behavior. . .well a week or so after that we took Rylan to the doctor because he was doing the exact same thing and he started vomiting (sorry tmi). He looked horrible and he was just so tired had no energy and the nurse right away knew this wasn't good. She looked very concerned about him. So dr. chen came in and looked him over and seemed very concerned as well, I had told her my concerns that i thought it could be his meds causing it and right away she agreed with me. So she sent us over to the e.r. so they can get his levels checked right away because he was getting sicker. They checked his levels and it was within normal range. Well they explained to me that some kids are more sensitive to medications than the average kid (which is what the results were based off) so they said that was what is going on with my son, and they drove him in an ambulance to Cardinal Glennon and kept an eye on him over night. He was fine again the next day so they said it was the meds causing it and kept him off it and sent us home.

A couple days later we are back in the same hospital because we had a scheduled 72 hour video eeg. It was pretty uneventful except maybe two seizures, and one weird eye rolling episode when he was watching a movie with flashing lights. The first seizure i marked down they checked it on the EEG and came back in and said it didn't register as a seizure, so the rest of the time we were there i had it in my head that these episodes were not seizures after all. So i started thinking what else it could be and decided maybe it's an eye thing, and that when we got the test results back that were going to be normal i was going to get him into see an eye doctor. . .well it took two full weeks for them to get the results back to his neurologist. I had called earlier that week and his nurse told me that so far from what she gathered his EEG was reading normal, but she couldn't officially say until he got the results back. Well last Friday I get a call from Rylan's Neurologist himself (Never a good thing) and when i heard his voice my heart sank because i knew it wasn't going to be what i was expecting and what i was told previously. . .He preceded to tell me that my son was in fact dealing with seizures. He was concerned that these could turn into the convulsing type of seizures and wanted to get him back and meds right away. He even told me that in parts of the EEG there were seizure tendency's ( where they could have turned into seizures but did not). I felt so numb. I know i have to be strong for my son but hearing these results just tore me up. I am more worried now because i don't want him to have to deal with this, and I was hoping that for once my mommy instincts were wrong, but they weren't. So if you are a mother please listen to your mommy instincts when it comes to your child because we know our children best ♥♥

Med side effects

My son had a very rough day yesterday. I feel so bad for him that he has to go through all this. His baby sitter calls me while I am at work and was telling me that he was starting to sleep all day again, he slept all morning then she woke him up for lunch and meds and she said was very disoriented he couldn't even sit up right for lunch and he was crying to go back to sleep. She said he wouldn't walk and when he tried he just fall down and was very unsteady. So we rushed him to the E.R. because his pedi couldn't get him in right away. And when we got there he was fine by the time the doctors seen him. So i am waiting on a call back from his neurologist because E.R. did nothing for him. I really want a different med for him, but i have a feeling that he is just to sensitive to the higher doses :( Today however he is fine and himself again ♥

One Seizure at A Time

It's so hard dealing with this, and i can't understand why it has to happen to my sweet little boy. He has done nothing to deserve this. I love him and i try to stay as strong for him as i can, but sometimes it's really hard. These seizures are just stealing my baby boy from me :( Maybe i am looking for answers in the wrong spots. I know God is in control of everything but I haven't really been that good at praying and talking to God lately :/ I was going to go to church yesterday, but decided not to because Rylan wasn't doing well at that point. He was extremely tired and emotional and it just wouldn't have been good. And at that same time he had his first seizure of 5. It didn't last to long but it was there. So my mom picks us up from my friends house so she can take us to meet hubby in St. Clair, and Rylan falls asleep so it was about 1 o'clock then. We get him home and he stays sleeping for 5 hours. I had also upped his meds over the weekend per the doctors request. So 5 O'clock rolls around and he is fine up until bed time which was at 9. Rylan was playing with his IXL from fisher price and he suddenly stops playing-looks up and stares for about 10 seconds-then resumes playing with his toy. He is getting pretty tired at this point, so the rest of them follow up until he falls asleep at 10. I think because of his seizure activity at bedtime it usually takes him about an hour to fall asleep. I really don't understand why his seizures are becoming more frequent. But, I know we are just dealing with it one seizure at a time.