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Post by Critter Clog on Nov 10, 2005 19:06:06 GMT -5
ebgbgms,
If your child is in special classes, he probably has an IEP. If so, you are entitled to free legal service concerning the education and school programming for your son, which in your case would include a Health Plan. Contact the principal and make a request. The school is required by law to act on your request. I'm not sure what state you live in, so I can't fill you in on the procedure your state has in place. Each state has little differences.
It is also your legal right to request an independent health assessment, including speech, neurological, etc. If you so desire, the assessment can be done by a large medical facility, university affiliated if you prefer, rather than have a local doctor. That will be paid for by the school district.
If your son has an IEP, the school district is required to give you a Parent's Rights booklet which spells out the numerous rights you are entitled to. If you do not understand any part of the booklet, the school district is required to explain it. Many parents find it confusing since it is written in legal terms, but it is your right to receive full explanation.
You may not realize it yet, but you have a lot of power as you exercise your parental rights, if necessary. You will have strong legal backing if you desire.
Good luck to you.
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Post by JohnLIB on Nov 11, 2005 8:47:19 GMT -5
There has been some really good information posted here concerning the rights of parents, students, and the IEP. Remember YOU have the final word on the IEP. If you don't sign off on the plan at or after the IEP meeting it cannot be implemented. YOU have the last word concerning the education of your child but you should do what is best for the your child.
Lesser is Better
John
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Post by ruth on Nov 11, 2005 10:21:19 GMT -5
adell davis, nutritionist, says you are protein deficient when you crave sweets.
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Post by ebgbgms on Nov 13, 2005 21:09:51 GMT -5
Thank u all so much! Tuesday we r doing the Western blot and as expected he has gotten worse. With out u all I don't know what I will do. I just showed my husband all of your replies and we have already decided to not sign the IEP they r pushing on us now. It is so stupid how this all works. "Well, he flunked this test so we gave him this test and he past by 2 so isn't that wonderful?" "But we still have to label him MR he will do just fine with speech and OT. " Bullshit Even on the meds he has good days and bad and u still never know what to expect. Suddenly, u realize he doesn't know where we r or something like this. I will fight!I m too ill to teach at home right now and I hate that, but he deserves to be treated right in the school district. U guys, its like I'm in a box and u get me out and help me see. Thanks again. I love u all
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Post by Patti on Nov 14, 2005 8:07:43 GMT -5
Just wanted to wish you good luck tomorrow with your testing, Glenda. If by some small chance the test comes back negative, please know this is not always an indication of no infection. Very sick and chronic cases will often show no antibodies so there are other options for your son, should this happen. Keep us posted and we are praying for you.
Hugs, Patti
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Post by ebgbgms on Nov 15, 2005 1:38:27 GMT -5
Thanks Patti, yep tomorrow is the blood work and the iep. I called to cancel it, his teacher suggested it, but this little fast talkin bit wouldn't go for it (long story) so my husband said he would just refuse to sign. See I'm always the bad guy, but he knows Charlie is better on the med so believes in ld for him. I told her I was not happy that the teacher would not be there, she said Oh I'm very able to explain everything to you. Suggested just one of us come if Charlie couldn't and we cant find babysitter, and I said I have already told u we will always have to b at the meetings together. She said well its the law I have to have this signed off in 30day which leaves me until Fri. yakyak yakkkk I said don't worry we will be there. I hope my husband takes control cause i could choke this woman. Just her and the principal will be there.
EVERYONE, U HAVE HELPED SO MUCH WE WILL MAKE U PROUD !!!!!!!!!!! uPDATE TOMORROW EVE OK. lOVE TO ALL ps i WAS AT MY MOTHERS AND SHE WAS SHAKING WHEN i GOT OFF THE PHONE, i SAID WHAT IS WRONG AND SHE SAID I JUST HOPE U R DOING WHATS RIGHT FOR CHARLIE, I HATED TO UPSET HER BUT ALL ALONG I HAVE NEEDED HER SUPPORT IF SHES WORRIED THEN LEARN MORE ABOUT IT AND BACK US UP. Anyway, Im not scaared of them at school. Anxious to see what my hubby has to dish out, like i said he wont even tell mcdonalds they gave the wrong order. ;D So we shall see. Bye for now, Thanks again
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linda
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Post by linda on Nov 18, 2005 20:40:12 GMT -5
Hi all,
ebgbgms,
It should fascinate me that those of us with kids and this disease share such similar experiences, but, rather, it makes me soooooooo sad. I suppose I've had some form of Lyme for most of my life, but I've not been bedridden or weak--just looney at times. I have Morg for 13 yrs at least; all of my family has morg too. My oldest son, like yours, is ADHD, a sugar addict (no candy in our house), and tempermental. My middle son is ADLD (learning disabled). He zones-out often. I hadn't ever considered the seizure possibility...but it would make sense. My daughter (now 2) is moody, but smart. I've stopped going to doctors about this despite the fact that I do believe they all have Lyme. I stopped because I sensed that my persistence and fear (for their lives) was being perceived as a mental illness. That by being a very concerned, passionate mother I was giving the doctors a reason to take my kids away from me (I felt that they were leaning in that direction by the strange childlike manner they began talking to me.) I just thought if my children are doomed to an incurable life of Lyme and morgs, better with a mom than foster care. They do seem to be getting by though. I imagine there is always the possibility that if we treat our bodies well, they will work hard for us.
I have wondered what Mary is up to as well. She hasn't been returning my emails either. I sure look forward to hearing about progress with our disease. So far, she has been the sole matriarch to fight for recognition. I feel I should be doing more to help her. If she will email me maybe I can find a way.
I also find the discussion about the DR4 gene interesting. I studied the whole ADHD thing before I learned that Lyme was the issue. Children with ADHD are usually born to mothers who have some sort of autoimmune disorder. In both autoimmune disorders and ADHD, the DR4 gene is implicated (said to repeat itself more than normal?). So, we may be genetically prone to becoming infected with Lyme; it shows up in our lives as an autoimmune disorder (great imitator); and it affects the health of our children, who become labeled ADHD and learning disabled. I can connect the dots and I don't have a medical degree. I also believe that the Lyme/morg thing is far more common than we realize. Some of us figure out that something just ain't right, and some of us just live sick thinking that it is just how life is. It isn't how life should be though. If our medical community could just set aside their egos for a moment and employ their critical thinking skills.
I apologize if I ramble. I don't post often these days, but the stories about the kids still break my heart.
I hope you and your son find some relief.
Take Care, Linda
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Post by ebgbgms on Nov 19, 2005 3:33:52 GMT -5
Hello everyone, I am sorry that I have been unable to respond till tonight. The stress of last wk. about put me under. We finally had the test done and sent off. Foggy me, didn't send pmt along so it was delayed in the frig there in CA until today when we could send pmt. $190 so it was drawn Tues. started today. I upset with myself, but did my best being under the weather. Same day went to school and was so proud of John, he really spoke up. Had spoke to the coordinator and tried to cancel, didn't go good. U women out there know how when 2 other women just don't click, at all? Well that is her and I. I can't stand her. She has a smirk all the time and when I got foggy and couldn't think of the word she almost laughed. She should have been a Dr. No Heart. Anyway she had told me it would just be us and the principal, no teachers, I told I was not comfortable with that and I called his teacher and she came. During the meeting, his teacher would cut in and the principal corrected the coordinator several times. I said what if we disagree and do not sign, she said he would get nothing. John and I were satisfied after a lengthy conversation that we would sigh now and if the results come back poss. we will redo everything is what they promised. Meanwhile, Charlie is worse, this is very difficult for him. He is like black and white when on and off the antibiotics. I am concerned about him emotionally right now. Called Dr again today and he want to wait for results now before restating the meds. I know there is a chance of neg results. I don't know what to do. I thought it takes about 2wks. His teacher is emailing telling me daily he is getting more confused, angry, upset. Should I ask him again or wait for results. They could hear him crying in the background on the phone. I just don't know what to do, I guess wait. Then ask Patti what I should do nxt. another test the same or what. I again am sorry, we appreciate you all very much. You r the only support we have as family does not agree that I or Charlie could have it. John is really reading your post too. I've been waiting for the day. I like that- We r all waiting for the day aren't we. HUGS to all, Glenda and son
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Post by Patti on Nov 19, 2005 9:54:23 GMT -5
Thanks so much for taking the time to update us, Glenda. I guess we just wait and pray that his tests come back positive. How's that for irony?
It does take some time for the results but I can't remember now how long it was for me, and having the holiday coming up probably won't help matters. There is an 800 number on IGeneX's website......you might call them and explain your situation with the school. Maybe you will get a sympathetic person who could rush things along for you.
Hang in there and keep the faith......we all are certainly behind you and praying that your precious Charlie can stay strong and brave. It must be so horrible for all of you, I just don't know what else to say except that we will always be here for you and we love you!
Patti
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Post by ebgbgms on Nov 19, 2005 15:08:26 GMT -5
AHHHHHHHH thanks Patti, we love u guys too. Charlie is sick today as in fever, lathargic, stomach etc. Just gave him tylonol and he got up and is flying paper airplanes. Wish that worked for me. Just seeing him do that makes me better. He said Ma and dad I love U what a great kid if I don't say so myself. I will call them, they r very nice on the phone. I am feeling better today ;D Thank God. Be back soon, Glenda
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Post by ebgbgms on Nov 22, 2005 23:19:26 GMT -5
Hello all, he has strep. I just want everyone to know that I keep coming back here to review your advice and get a boost of faith from all of u. I am so glad I can do this. When going through different things like I am right now and trying to stay well, it is hard to remember everything u all told me so I have to return to read. Thank u all and Happy Thanksgiving. Love Glenda and Charlie ;D
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Post by DOCP unplugged on Nov 30, 2005 4:40:54 GMT -5
Oh gosh I am just reading this. Glenda - my son is five and in kindergarten aaaand his name is... you got it... Charlie-brown. I'm not sure if you recall me from past messages but I talked about his nightmare-like awakenings where he would back away from me with terror in his eyes and it just about freaked me out more than almost any symptom he or I have had (and there's been some bad ones). And you just keep saying honey it's mommy it's mommy, but you don't know if you should grab them and hold him till he is okay or what since he gets more afraid the closer you get. I have notice more recently that he also seems to see something in the room, like he'll look one direction and follow it briefly as if it is moving. I always try to get him to recall dream the next day and he never wants to talk about it, but one day out of the blue he said there was a dark man in black clothing and he put me in a cage and I can not get out. I haven't the slightest clue what that means. Has your son told you of his dreams at all?
Mostly I wanted to share this... a few weeks ago the Principal calls to say she is concerned about Charlie and did I have family history of neurological disorders. She said his teacher asked the class todraw a picture of their family. Charlie kept drawing airplanes. She said he needs to follow assignment and draw his family. He started getting angry saying "I don't know how" which is strange since he draws family pics all the time. The teacher said that he needed to stay in during recess until he drew family. Again he got upset and lashed out, so the teacher calls Principle to take him to the office. The Principal while walking with him down the hallway notices that his gait is off and his feet are shuffling but not on purpose. She said she grabbed his hand (not to pull him along but to balance him since she kept thinking he was about to fall). And just as they reached the office... he fell. She said it's like his knees or legs gave out. She said he immediately stood back up looking a little embarrassed but it was all enough to cause her to worry, and that's when she called me wondering if he'd brrn diagnosed with any neuro disorders. Thought I'd share. Our similarities are uncanny.
Will write more when less tired. Please update your situationl I will pray for you all. Sincerely, Alexandra
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Post by ebgbgms on Dec 2, 2005 2:12:11 GMT -5
Hi Alexandra, I am so glad u posted. Can U believe we both have Charlie's? I have seen my son do the same thing and it scared the crap out of me. His teacher is concerned. I still haven't gotten the results back on his test. I hope he can get the help he needs like he was before. The anger in a child is hard to deal with, and they know something is wrong. Charlie is scared all the time. Going to the bathroom or anywhere out of our site- even in our site. The pedeatrition is tired of me calling, I just can't stand to see him this way. He refuses to put him on anything untill the test result's are back. He now has strep again, I was so concerned this am, I could tell his head was shaking. He got this crap again and I was upset. The doctor said that school is full of it and mentioned two towns, here is another mark for ours. I told him about his head and other worries, he gave me the same deal as usual. He put him on Augmentin400mg twice a day. After I gave the second dose about 30 min. ago, bam! Instant mood change- I hate you mom etc. He went to sleep though. The thing is, I can tell he really doesn't want to act this way, my husband is getting a shorter fuse and it is getting difficut. He starts thinking behavior, when I know what he is going through and that realiazion with him works better then yelling etc. He just gets scared and worse. His aggression has progressed and I am just praying for one thing this Christmas, you would never dream that it would be a pos. lyme test. I am in hopes that he can heal much faster then I even though I think he was born with this. The morgellion symptoms started about 3yrs ago, this will be our 3rd Christmas knowing something was really wrong anyway. Does your Charlie have Lyme, we can email. Although I believe that this is good to post for other's to read and maybe find more parent's like us. TC* Glenda
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ebgb Charlies Mom for DOCP
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Post by ebgb Charlies Mom for DOCP on Dec 4, 2005 0:46:09 GMT -5
DOCP, I would really like to talk with U. Can U send me am pm and give me your email? Thanks
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Post by ebgbgms on Dec 13, 2005 23:03:07 GMT -5
Test for LD enough for treatment, but Charlie has been pretty sick and so have I. I want to come back and write more when I can.
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Post by ebgbgms on Dec 25, 2005 3:03:26 GMT -5
Hello to all, Charlie and I are still doing poorly. The Dr. is to have a letter for the school by the time Christmas vacation is over that he is being treated for Lyme. Thus they have no choice but to put him back in the special classes he so desperately needs. There was allot of damage done during this time FYI.Meanwhile the morgie symptoms and non-stop ear infections are doing him in. he is constantly scared, much worse then before, he has threw is medication away twice. He say's it makes the worms worse. He has terrible herx and behavior issue's. OCD terrible. I am just here, trying to get better as to help him and something keeps zapping me. Nausea, fever, flu like symptoms constant, for me and the spasms are indescribable. Morgs. on head and hands legs and feet, oh, crap it is everywhere. My poor husband, trying to understand and help. I see this in him too. We were adopted for Christmas by a wonderful group of people. With out them, we would have been done for. We had no way of getting Charlie anything or paying some bills. They were a godsend. Charlie is a sad child, trys to be happy and normal but, knows he is not. Blames me for everything. I just want my beautiful child back and safe with no more fear. To other parent's with children that are like Charlie, how do u feel about tubes for the ears? Would it scare u due to knowing that the Morg. is in the sinus and ears, and eye's etc? Please respond. All my thanks, Glenda
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Post by ebgbgms on Jan 22, 2006 0:33:02 GMT -5
New update: Charlie has been treating with antibiotics again. He is diplaying many new problem's and has not been able to go to school for a week. That has not stopped us from continuing the change in the IEP. The meeting is set for Jan. 27th this woman we have to deal with is by far to hung up on her self. We have a second letter in progress and if there is one disagreement between us all at that meeting we are going over their heads. We already have back up for that. C. is now having terrible pain in knees and has dropped to the floor 1 time yesterday 2 today. And the beat goes on......................................................
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Post by Patti on Jan 22, 2006 10:44:51 GMT -5
I'm so sorry for these continuing problems Glenda. I hope you know that your entire family, especially little Charlie, will always be in our prayers. And good luck with your meeting on the 27th......that is my Dad's birthday so I see that as a lucky day for you.
God bless, and many hugs! Patti
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Post by ebgbgms on Jan 22, 2006 16:43:46 GMT -5
Thank You so much Patti, for some reason I do feel lucky as far as the school goes. It just pounds on to the already overwelming stress. But, feeling lucky anyway I appreciate your prayers and hope you and yours are doing well. TC~Glenda
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Post by DOCP unplugged on Jan 24, 2006 13:39:24 GMT -5
Glenda - I'm going to spare you the reasons of why I forgot to check back before now and only say... I apologize. My e-mail is alexandraedwards@earthlink.net and you may write me anytime, as can anyone.
I just read on another thread how your Charlie had a positive test result. That is wonderful. To "know" is wonderful. To know you're headed in the right direction is wonderful. All though... you already knew and said so when beginning this thread. A mother's instinct is rarely false positive or false negative and is the most timely, accurate, diagnostic since the days of Eve. But of course this "second opinion" lab test is a much needed tool and proof to revert to and shove in someone's face when they keep shoveling it in ours! Hooray for Charlie (way to produce those antibodies on demand - good boy!), and Hooray for you Glenda! Love perseveres.
Yes, my Charlie-Brown has Lyme, as do I (3rd stage or Borreliaosis), we saw Dr. Harvey in Texas. Great Doctor! Thorough, clear, kind. We were test through Bowen Laboratory. I need to run for a bit, back later...
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