Update on Megan
I’m SO sorry that it’s taken me so long to update…this weekend (starting Thursday) has been hectic, as you can imagine. I do want to thank ALL of you who have tagged/commented/e-mailed/called me…your thoughts and prayers mean more to me than you can imagine
So, after the emergency room trip on Thursday, I was really nervous all night, worried that the spells might worsen while she was sleeping…but she did just fine I got up Friday and they were happening very frequently, so I was on the phone ALL morning trying to get hold of the Pediatric Neurologist at Rainbows Babies and Childrens Hospital in Cleveland. They FINALLY got back to me and had set us up for an appointment at 2:00 pm. that day So, once again, I packed up, left work, picked up Abbie from Pre-school, headed home to pick up all of the paperwork that I had already had filled out for Megan’s original appointment to this Neurologist in June, and grabbed us some snacks, just in case. The ER told us we would have the EEG done, and possibly a CAT scan while we were there, so I was ready for a long haul…
We got to the Neurologists, and she came in and talked to us finally. I told her everything that has been going on with Megan, and she checked her out…she definitely agreed with the Pediatrician that Megan IS behind developmentally in her large motor skills because she was a preemie. She is not as strong as she should be. Her muscle tone is very low. She doesn’t stand and hold her own weight hardly at ALL…she will sit on her own for a few seconds which is good/normal but when the dr. had her sit, then laid her forward onto her legs, Megan doesn’t even TRY to sit herself back up…she just lays there…so there were a few things that she noticed that she is behind on. So, since she wasn’t having any of the episodes there while I was holding her, I put her in her infant seat so the dr. could see what was going on. After seeing her have a couple sitting there she was a bit relieved, and told me that she is NOT ruling out seizures, but she thinks what this is, is ‘Self-Stimulatory Behavior’. Basically what that means is because Megan’s large motor skills are behind, we need to treat her in that respect as a 6-1/2 month old. So, because her BRAIN and thinking and small motor skills are like an 8 month old (where it should be), and her body is responding as a 6 month old, it completely frustrates her. She thinks she can do things, because her brain tells her she can, but her body won’t allow her to. This frustrates her (she even growls, which I knew was frustration, but I didn’t know from what) and her shaking her head and arms as she does is her own way of getting out the frustration. She said you wouldn’t believe the weird *stuff* she has seen kids do when they don’t know how else to get out frustration…It is still scaring me, but after seeing a specialist I am a *bit* more relieved. She also did say that if it was a seizure, when I talk to her or touch her she wouldn’t come out of it, but she does. I can gently touch her cheek to get her attention, and she will stop. So, it still could be very minor seizures, but we won’t know for sure until we take her for an EEG in about 2 weeks. We have to plan on being in the hospital with her for 2 days to have that done. They want to video-monitor so many episodes, and then they will let us go.
I’m SOOO sorry for the HUGE update…geeesh…LOL…but our prayers so far have truly been answered…things are DEFINITELY getting back to normal for us now. Clint and I have been spending even MORE time with her the past 2 days now really working with her. So hopefully we can make her a bit stronger too by making sure we do even more than normal with her. Thanks again for all your prayers!!!!! You all are so wonderful to have *around* me….((((HUGS)))))
Hi Lisa, I am glad that the doctor’s and everyone now knows what is going on with the baby and things can start being done to help her!! That is an answer to prayer!! I hope you are doing well and that Life will be better for you and your weight journey can continue on in a good way!! I am with you in support and prayers. ~hugs~
Hi lisa…I do understand how frightened you are feeling. My oldest son had a grand mal when he was only 13 mos old. It was pretty bad, I was told that he could have died. They had to intubate him and bag him with oxygen because he wasn’t coming out of it so they totally had to drug him which effected his breathing. He was in the PICU for 2 days and then released after 5 days.
They treated him for a possible seisure disorder and automatically put him on some tough drugs to keep him from having another episode. He hasn’t ever had another one but the meds weren’t good for him and I became concerned for him behaviourally. I weaned him off the meds when he was 18 mos…and like I said he hasn’t had another and all the EEGS and MRI’s that we had done during and after for followup never showed anything remarkable. The only one that did was after the initial seisure it showed a slowing pattern on the brain…but the brain goes thru a trauma when they have a seisure of the magnitude of a grand mal. Repeated seisures of smaller magnitude can begin to show the same patterns.
Don’t be quick to put her on medications if they suggest it down the road…it does sound like you have a reasonable Dr…the Dr I had I think jumped to quickly to sedate Matt and he now has huge problems with ADHD which I think was started because of the drugs they had him on…he started to have behavior problems soon after they put him on it.
I have written a book..sorry. I just know how frightened you can feel during this and have faith in that Dr. I found out much later that some children can have a Febrile seisure without any reason and never experience it again. Our lives changed when it happened.
((hugs and prayers))
Heeeey Lisa! )
I’m glad to hear you finally got some explanations from the doctors. I’m still praying for little Megan and the family, and will continue to do so as long as you need it. I truly believe and trust God that things will end up well for your precious baby.
Keep ya head up, chica, and know that we are here to support you. I pray that God grants you and hubby much needed peace during this time.
Blessings and many BIG hugz! )
You don’t even know how happy I am to read this update! I was worried about you guys this weekend, and I’m really glad that things are getting better over there. You’re all still in my thoughts, and I know your little girlie will sail through the slight delay like a trooper!