Ko took his last dose of Steriods & bit of update

[LittlebitsMommy]

Ko took his last does of steriods this morning . He has been feeling a little better the last few days. Well at least until he eats. If he didnt have to eat he would be okay. When he doesnt eat he says he feels like he needs to poop but cant. Then when he does he has diarrhea bad.

Went and seen Nephrologist yesterday. He said everything looked good and hated that Ko was having to go through so much. He said unless he starts having pain or something he didnt need to see him for 6 months. Cool it was good to have an appointmnet like that.

Went and got labs from GI they were done a week ago Monday and liver count was high. Was then done again on Friday and they had came down from 46 to 33. Gi said they could have been up if he had taken tylenol. And I know he had becasue he was in so much pain. We will go and have lab recheck again on Monday.

We found out a couple of weeks ago he had to have glasses. He will have to wear them at all time. We went and got them yesterday. He looks so cute! We also have to use 2 eye drops for the next couple of months. They want to fit him for contacts in 2 months because he will have to have his glasses on at all times. He is excited about the contacts lol because me and DD wear contacts.

He went and had an 8 hr Neuropsychological Evaluation at the first of this month. I had been telling drs for years that something wasnt exactly right. And no one took me serious. He has a history of seizures. So when he was in the hospital in Feb they did another MRI of the head and EEG. He has had one done in 2007 and 2009 also. Well when they did the last one a couple of months ago they thought they found a brain tumor which turned out to be what they called a malformation on the right side. Have no idea how long it has been there or what caused it. Just that its there. So finally they decided that they would test him. He can learn something one day and then the next day he has forgotten it. This has gone on for years. He has learned to read several times. But forgets it. Well after testing someone finally sees what I see. Still not sure exactly why he is forgetting. If you just talk to Ko he is your regular 12 year old. No one knows until he tries to read. Testing showed he has severe learning disabilities. Now just trying to figure out what has caused them. But at least someone listened.

Well thats a little update I know I will have more to add

 

[Jennifer]

Yay no more Prednisone (and hopefully forever)! Glad they are on it with the blood work to make sure his levels are good. Sorry to hear about the learning disability, I had no idea about that. Glad its getting looked at seriously (finally) and I hope they can do something to help him. Keep up the good work!

 

[Sascot]

Glad he's getting off the pred. Hope you manage to get the eating/going to the toilet sorted.
That's good that they have finally realised about the learning difficulty so that he can get some help. It never ceases to amaze me how much the doctors dismiss things that us mums notice! You would think we would be the first ones they go to, but I think they just assume we are all paranoid.

 

[Twiggy930]

Hey LBM.

So glad to hear your son is off prednisone!!! I know how exciting that is, my son has one more week to go!!!

Sorry to hear that Kota is struggling with a learning disability. Both my children have been diagnosed with learning disabilities. My daughter has very pronounced dyslexia and has really struggled with learning to read and my son also has dyslexia but his issues are more with writing. Both my kids have been greatly helped with Orton-Gillingham tutoring. It is a multisensory method of teaching kids to read and write. It very overtly and systematically teaches the sounds different letters and combinations of letters make and it also systematically teaches sight words, which are words that you can't sound out. I highly recommend looking into this method of teaching.

Both my kids go to a school that specializes in teaching kids with language based learning disabilities, the school's motto is "If you can't learn the way we teach we will teach the way you learn.". Both my kids are smart and articulate and people are often SHOCKED to hear that they have a learning disability. I think the most important thing to convey to kids that are struggling with a learning disability is that they ARE smart they just need to learn in a different way. I know with my daughter it came as a relief to her to be diagnosed with a learning disability as it gave her a concrete reason for why she couldn't learn to read like everyone else. So often these kids just begin to assume that they are stupid which breaks my heart because it is so far from the truth. Good luck and I'm happy you have finally gotten some answers.