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From: Kathy Gillette (ca208-ch02-bl07.il-chicago0.sa.earthlink.net)
Subject:         HELP!
Date: January 21, 2008 at 7:31 pm PST

Hi-I really need some support and I haven't been able to find it anywhere else, so I am hoping and praying that this is the right place for it. My daughter Kayla has multiple health problems:Neurofibromatosis type 1 which has many health problems attached to it(migraines, chronic constipation, ADHD mainly inattentive type, cafe-au-lait spots, macroencephaly, freckling where skin meets skin, severe itching and pins and needles pain, weakness of muscles as well as poor coordination that worsens as she tires, as well as intrahepatic, chest wall, anterior mediastinum, left neck and left buttock plexiform neurofibromas(tumors). We have no idea if any of the tumors are cancerous or not because the doctors feel the surgery needed for biopsy would be more dangerous so for right now, they are just keeping an eye on them. Kayla also has problems with low weight and immunity, moderate to severe persistent asthma and severe PMS. She was receiving IVIG therapy every four weeks for a while and was doing fairly well. Then they took her off of the treatment and we have had nothing but trouble ever since. The same holds true for her school. Kayla began middle school(we live in Michigan) last year. We barely squeaked by last year. Kayla has multiple doctor appts., along with a therapist and now a physical therapy person. We are on the road a lot and between that and being sick, Kayla is finding it extremely difficult to keep up in school. The school is putting stress(A LOT) on us to get Kayla back in school more regularly and that is causing Kayla's physical symptoms to get worse. Kayla had two classes in her Special Ed. resource room last year and now this year she has none, they(the school) says they are trying to mainstream everyone(whatever that means). Now I feel as though we are fighting the whole system while trying to battle all of my daughter's health problems. I am so very confused and ANGRY. Mainly angry at the school system. The doctors keep telling me it wouldn't be good to take Kayla out of public school to homeschool because they say Kayla needs more interaction with kids her own age. I think that homeschooling is looking pretty good right now. I would be able to work around Kayla's doctor appts. and when she's not feeling well she could lay down and rest and when she felt better come back to working, plus, I know my daughter better than they do so I am able to explain things in a way that she understands so that things are easier for her to learn. The stress on Kayla has been so bad lately that she has begun a nervous habit of pulling her hair out, and now she has a huge bald spot on the back of her head. We saw her primary care doctor today and she said she would not support me if I moved her to homeschooling because she feels Kayla doesn't get out and around kids her own age enough. Another plus of homeschooling would be that Kayla and I both wouldn't feel so pressured by the school and we could work through the summer so that she could keep up with her studies. The school and the doctor have threatened to have truancy officers come to the house. Kayla is so upset she's crying all day for the last three to four days and begging me to get her out of her school. The teachers have been supportive but the administration and the counselor have been nothing but a pain. The counselor even had the nerve to tell me that I needed to go home and have a glass of wine and a nap after I tried to tell her what was going on. The counselor also continuously insists that Kayla's health problems are in her head. Plus Kayla and I have a trip out the National Institute of Health in Bethesda Maryland some time in February(we go every three to six months because Kayla is in a study out there for her tumors). One of Kayla's tumors is so rare that when they tried to talk to colleagues about it they said they had only seen three others like it. These were colleagues from around the world too. Anyway, things are coming down to the wire. Kayla has doctor appts. for the next few days but then they expect her back in school and that has her even more upset. I just honestly don't know what to do anymore. I really think homeschooling her(at least until they figure out what's wrong with her immune system and now she's having bladder spasms and they seem to think that she might have kidney stones, that's what the appt. tomorrow is about)is what is best for her. I just don't want to get in trouble with the law. Kayla's counselor seems to be the only one on our side. Plus, I don't know if we can afford to get the supplies we need for homeschooling either. I've basically been homeschooling her with the school's materials since about first or second grade anyway. I know I could do it. If anyone has any ideas or advice out there, I would REALLY appreciate it. Sorry this is so long. Well, I think that's it, I'm going to hit the sack and try to get some sleep. Thanks in advance for any help anyone can give.
Bye,
Kathy Gillette


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