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March 9th, 2008, 07:29 PM
Join Date: Feb 2008
Posts: 32
Joshua had his hematology appointment last week for his fevers. The doctor isnt going to do a bone marrow biopsy because all of his blood work and spinal tap looked fine, so he doesnt think there is a need to go further down that road, which is good because those are painful!

He wants him to have a test for something called Familial Meditteranean Fever. He asked if I had any meditteranean decent in me and I said Yes, Armenian. My great-grandma was born on the meditteranean sea in Turkey, and her husband, my great grandfather, was born in Armenia. Apparently this is VERY rare, and there is only 1 lab in the United states that tests for it. It is in California at UCLA. It is a gene test. Basically people with this get fevers every few weeks, with no symptoms in between, with a range of symptoms during a attack, or sometimes only a fever, which is what Joshua has. After reading about it, I think my mom might have it. She has EVERY symptom, and I always tell her she is faking because she is at the doctors every day and they never find anything. I want her to get tested if she can! I am waiting to hear back from my insurence company to see if they will cover the test since it is being sent out of state.

Joshua loved his glasses the first week, but the second, not so much. he has been pulling them off everytime he is alone and I dont know why! I am having to smack his hands which has helped the last few days and yesterday he did keep them on all day. I know that sounds mean but I cant have um broken and there isnt really a way to verbally reason with a 17 month old!

ALso, I went to my dads house yesterday, and my dad has the same thing as Joshua, and I was always told how bad my dads eyes were. It was the first time they saw him in his glasses because they live an hour away so we go up every couple weeks. Well, I figured there glasses would be comparable, but figured my dads would be worse. Well, my dad put them on and could see nothing. He said Joshuas were far worse So now I am worried because they told me from the beginning most people with this dont drive. But my dad drives and I thought my dads was worse but now Joshuas is worse. So its like, what do I do? WHat kind of things do I need to do to prepare him for life? His prescription is +4.5. Can people with that drive, and how corrected can it be with glasses? I am kinda freaking now

Also, he did the scariest thing friday, I almost called 911. He was across the room and looked at me terrified and worried. Ran to me and layed his head on me. I said "What is wrong baby?" I kept asking him and he sat up and held his left side of his head. I stood him up and he went to walk away and COULDNT. He side stepped 3 times into the couch, then the other way. He fell on the floor. FOr about 2 minutes I started to panik thinking maybe he had a seizure or blacked out or something. ALl of a sudden it stopped and he walked. It was just so bizzare and he had his glasses on so I know he could see, and he walked for 3 months without them so I know he can wlak without them!

Anyways, Thanks for listening! Crazy these days with his doctors appointment and mine. I had my midwife appointment this week too!

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March 10th, 2008, 10:14 AM
fiefer87's Avatar Mega Super Mommy
Join Date: Aug 2007
Location: Near Buffalo, NY
Posts: 4,336

Wonderful news that they don't think he has leukemia!!! We are so happy for you. I hope your insurance will cover the screening for the Familial Meditteranean Fever. That would be great. Do you know how much it would be for the test if insurace doesn't cover it?

I am sorry that Joshua doesn't want to keep his glasses on any more. Does he have a strap or a band on them? I know Alexis some times tries to take hers off, but with the strap, she can't just pull them off, she has to work a bit to get them off, so she just usually leaves them alone. I know what you mean about the driving. I highly doubt Alexis will ever be able to drive either. Its sad and disappointing, but think of all the money they will save taking public transportation. I worry to, but I try not to think so far ahead right now. I focus more on getting through the next couple months, or year. If she can't drive, then we'll figure something else out. And don't worry about the hand slap, I have to do it wqith my almost 6 yo.

Very scary what Joshua did!!!! Did you ever figure out what happened? I hope everything is okay there.

I am very glad things are going well and I hope you get some answers soon.
<div align="center">Thanks Alison's Mommy, SillyMama, Katarina and samylaine for my blinkies.</div>
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March 10th, 2008, 10:58 AM
samylaine's Avatar Super Mommy
Join Date: Jul 2006
Posts: 534
Great that he doesn't have leukemia!
My brother went through something similar when we were kids. fevers all the time unexplained... turned out he had a small tumor in his neck that caused it all.. it was removed and he was fine.
I hope the testing for the FMF goes smoothly for you guys and you can figure it out.

About preparing him.. is there a blind school in your area?
Maybe you could contact someone and ask some questions? We are in Wichita Falls, Texas... and 4 hours south of us is Austin... the first thing the Early Intervention people did when they met us when Nathan was 2, was to give us all the information for the blind school for children in Austin... because Nathan always runs the risk of the blood vessels in his eyes to start growing abnormally and detach his retina...

To keep his glasses on, it might take a lot of time on your part,lol. When Nathan got his, I would put him in his high chair and put his glasses on, then keep him there as long as I could (usually 2 hours or more).... painting, coloring, eating, watching tv... anything to keep him there. Once he got used to them then I i shut every door in the house except his room ... so he couldn't sneak off anywhere. He had just turned 2 when he got his glasses though, so he was a little older...
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