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Post by ebgbgms on Nov 2, 2005 22:27:06 GMT -5
Hello everyone, Let me tell u as I try to stay calm what has been happening to my 6yr old son. I hope there is someone out there that will respond after reading this. My son has been taking antibiotics since July for LD. I know he also has Morg. but, what I am dealing with right now we will say is LD. We had gotten the support of Dr Crist and our pediatrion to work together and he was getting better. But, the school changed thier tune and said that the test wasnt good enough, untill we could get a better, correct dx. he would not recieve the help he needs being taken out of reg kindergaurdin and in special classes because he is very low IQ right now. He hasnt always been like this, I have watched him from a baby start out well then started regressing. They suggested just waiting till nxt year. My son will be too old to go back to kindergauerdin. So the pediatriction and my husband and I decided to take him off antibiocs 14-16 days and get the western blot as it was the other "E" test before. It has been one wk. today. When I picked him up I could immedietly see he was having a bad day. I got home and he started having all the old awful symptoms. Anger outburst, seemed like he was just obsessed to get to the computer, craving suger, crying, I cant even discribe all the things that happened. Throwing furniture saying he was going to kill people and was tired of medicine. He was not himself. He would run and hide then come back out still angry. I have learned that this is not his fault, he has a frickin brain infection along w/ morg. I had to restrain him. I put my fingers around his little wrist and kept him from hurting himself or me, gave him a small amount of benadryl. He said he wanted to lie down. NOTE gave him the med about 2hr earlier didnt seem to phase him. I told him he could lie down.......then he became unrsponsive for what was prob. no more then 2 min. but seemed like forever. I daw him make two signifigent jerks, a loud truck went by as I was calling his name and I said Whats that sound....... he then slowly responed a big truck mom. He got up went to his little card table, stared at the wall afew minutes and was completely different. Ask to play w/ his airplain so we did and then play catch. No more bad behavior after that. He is asleep now, but I know he had a seizure. I am terrified. I am so angry with the school and the medical world right now I could choke them. As a friend told me, if he was diabetic, the school would not say take your son off insulin untill we know for sure he is really diabetic, or off chemo till we know he really has cancer. My main concern, I know what I will start out doing tomorrow, BUT HAVE ANY OTHER PARENTS SEEN SIEZURES OR ANY LYMEBUSTERS HEARD OF THIS AT ALL? PLEASE LET ME KNOW. THANK YOU, EBGBGLENDA
ps I have been trying to reach Mary, can anyone help me there? I know she is very busy, but she shows special interist in the children
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Post by freaky on Nov 3, 2005 15:11:29 GMT -5
Ebgbgms, just wanted to wish you the best, and hope God gives you the strength and courage you need to deal with this situation. If there is one person out of a few who is basically responsible for this interference in your life, it is common for that individual to be one who wants to believe they have responsibility in life's events, and if things work out for you the way you want, that individual wants gratification by all to go to him or her as if they were solely responsible because of their effort alone in making this situation develop as it actually should. That's what I've learned dealing with sick people who decide to make storms when everything is calm. My experience with nasty people like this is probably irrelevant. I just wanted let you know you and your son are in my heart. I hate for things like this to happen to people. I pray God gives you the power to turn around this unncessary interruption of events in your life.
freaky
PS I wish I were in a position to help you, or offer some really good advise.
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Post by just me on Nov 3, 2005 18:38:08 GMT -5
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Post by just me on Nov 3, 2005 18:53:37 GMT -5
maybe some folks at this website can give you advice Parents of Children with Lyme www.pocwl.org/they have listed --- Educational benefits, such as: IEP's, dealing with teachers, principles and other school staff, the laws that you are intitled too (this is different from state to state) and etc www.pocwl.org/help.htmlmaybe emailing the woman listed at the bottom?
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Post by ebgbgms on Nov 3, 2005 22:39:04 GMT -5
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Post by freaky on Nov 4, 2005 0:59:45 GMT -5
Unless I'm confused about what happened, I think it's illegal what the school is requesting you to do. What if you were a Christian Scientist? They have no right to make such demands. You can get free legal assistance from the American Civil Liberties Union? I'm not sure if that's the right name. If it isn't, somebody correct me. Praying for you and your son, freaky
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Post by ebgbgms on Nov 4, 2005 11:50:52 GMT -5
Thanks Freaky, we have an appt at 2:30 mean while he is showing many old symptoms, I hate the sudden scared deal, he says he is scared of me, but doesn't know why. He does his best to keep busy. It is or was a full moon I think. Things get freaky then as we all know. Sorry S to use your "name" I appreciate all the links Just Me, I gots lots of info. Thank u thank u thank u all!!!!!!!!!!!!!!!!!!!!!!!!!!!! Feeling so alone and scared it means tje world to me to step back and come here for a minute.
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Post by Administration on Nov 4, 2005 19:50:45 GMT -5
Threaten with a lawyer.. Hold on.. lemmie go drag someone in here who just went thru this..
Kerry
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Post by ThealohaJulie on Nov 5, 2005 1:15:26 GMT -5
I'd say the meds are working ! I have had those mental bouts and so has my child. My child is a bit older than yours so I don't know if what I did would help you. I would tell her it was the disease and not her feeling so angry or so scared. I treated the fits of throwing things and kicking and screaming much the same as you do for a 2 year old. 1. Make sure they are not going to hurt themselfs as in hit their heads on objects, if so clear the area. 2. Have the place they play or their room also be a place where it is ok to have the fit. Tell them it's ok to cry or scream as long as they do it in the place you have discussed they can. 3. You may have to get out of the room which is best if the child is relating you to the way they feel. Close the door to the room where they finish their fit, don't leave ! Hold the door and wait.. til they sound for you or sound calm enough to approach. 4. Keep reminding that this will pass, it's not their fault it the disease that's why we need the medicine. It's not the medicine and it's important that they know that. 5. The medicine has to be their friend or the treatment won't work. You don't want to fight about it for 2 years now do we? 6. Tons of love and encouragement, say the same thing happens to you even if it didn't.
I found that after the first 6 months or so we start winning over the disease ! I too had to go through everything you described, except I had a ADHD dx at first til we learned about the lyme, I always knew ADHD was bull, at least in our case, so after one year of meds my daughter just made the Honor Roll ! Her prior teachers are in Shock ! I then changed her status at school and with the State for her report to the State on a Child with Disabilities from ADHD to LD which the symptoms being the same for both. She has been improving much more than me ! Kids seem to bounce back faster than us adults and I know this is going to be the same happy ending for your family as well. You are so welcome to call me or write to me anytime. Mary knows me, were the ones in Hawaii. She must be away from home today cause I wrote her today and she is the fastest replier I know but didn't hear back yet.
I feel so bad for your sittutiation, I hope all is quite now. It's kinda like going thru the terrible two's all over again.
Hang in there Mom, you've come soooooooo far !
Love, J
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Post by ebgb and son on Nov 5, 2005 1:50:55 GMT -5
Thank You so much, I have heard such nice things about U. It helps to here your word of wisdom. It seems like I second guess my-self all the time because it is our lives I guess. I am so tired, He just fell asleep awhile ago. I am worse, I guess the stress is part of it. I will try to sleep too. I can't Thank everyone enough, what would I do with out my lymebusters friends? I don't know, I really don't. Much love, ebgb and son
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Post by JohnLIB on Nov 5, 2005 12:21:48 GMT -5
The school system CANNOT make decisions concerning your child's diagnosis or his medication needs. They can say that he is having a problem in the class he is presently assigned and suggest that you have him seen by a dr. for diagnosis and medication. What ever his drs says goes and they cannot go against the dr. The school system may place him in what is called his "least restrictive environment" for his classroom assignment so as to get an appropriate, effective education. If the school system refused to abide by the dr's orders, get a lawyer. They would loose.
Lesser is Better
John
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Post by ebgbgms on Nov 5, 2005 22:50:14 GMT -5
Thank You John. I'm dealing with so much, I hope I can handle all this. I am very sick right now. I would have to get a good lawyer, that might be the only thing that my parents might help with. The state does not except the diagnosis is how I understand it. I went through this 15 yrs ago with my first son we didn't know he hade LD. I know they don't think a parent will go that far. The problem seems to be the test results were not up to par. 3 out of 5 were posotive, good enogh for the 2 doctors to start treatment, but not for school. I will get him the help he needs if it kills me. Thanks so much John. As everything progresses I will let u all know what is happening. I cant afford a lawyer.
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Post by ebgbgms on Nov 6, 2005 3:28:28 GMT -5
In reading the post when u first got this I notice all of u talking about the vibration, which I have had. I think Charlie had that the second night, not a seizure.
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Post by ThealohaJulie on Nov 6, 2005 4:54:19 GMT -5
Hi again,
As I thought more and more about you and your son's troubles, I wish my brain would of picked up on a clue when I wrote you the first time. I hope your still checking this thread as what I'm thinking might really help. I cannot take the meds in the am, I just don't have enough food in my system to keep them down. So I wait til after lunch. I throw up so easily these days, not just once or twice, the entire day making it impossible to any more meds. My daughter is the same way. If I give her pills after breakfast she will call me at home from the health room to come pick her up. If this is happening to your son you may not be aware of it, it would make sense why school is hard for him. When I get the am sick from pills I can't even talk on the phone without the person on the other end asking me if I'm sick. Also my daughter hated the chalky white abx liquid form. She would shiver while I poured. Then she would say her whole body flet like it fell asleep. I filled a spoon with apple sauce then placed her pills with it.
Love, J PS, a small amount of benadryl can do very strange things to kids, I know cause my daughter would act so bad after benadryl or Dimetap.
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Post by John LIB on Nov 6, 2005 22:18:05 GMT -5
A school system cannot accept or reject lab results of a medical test for diagnosis. Only a dr can do that. Ask you dr to write you a letter concerning the illness and treatment of you son. Present a copy of this letter to the school system superintendent. If that does not do it request to present you case to the school board and have a lawyer with you. The school system is wrong and are over stepping their authority. They are educators not drs.
Lesser is better
John
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Post by Administration on Nov 7, 2005 12:38:20 GMT -5
Most lawyers will consult with you for free.. tell you if they think you have a case.. then do the job and they only get money if you win. Call around and ask some lawyers in the phone book if they are this type of lawyer.. Thanks Julie for helping. And always.. thank you John.. we love your imput
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Post by ebgb and son on Nov 8, 2005 22:43:08 GMT -5
Thank You everyone, I am doing my best right now. He takes allot of attention. I have to read some paper work sent home today, he went half the day. They want me to sigh something and send it back. Have to go over it w/ a fine tooth comb. I am thinking of asking to change the IEP meeting for the 15 to a date closer for the approx. time of test results. As a matter of fact I will insist. Love u all, thank u for helping my boy, it's truly heartbreaking.
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kb
Full Member
Posts: 162
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Post by kb on Nov 9, 2005 9:36:40 GMT -5
If you are well enough, can you consider homeschooling him? First, you are well aware of his medical needs and can make adjustments about the time of day that is better for him, also you can make sure his environment is Morgie free with the menthol and the nosquito/bug zapper etc. That alone may help his concentration. Our state has a new program that pays for the internet service to do it on the computer. If you do it for two years the computer is free. He is pretty young, and you may be too sick to consider it, but it is an option. Home school kids need lots of extra socialization and that may be hard if you are unwell. I think the jerking is major Morg. when I was better I had little twitches that became big movements that became jerks. I have also had hallucinations. I think him craving for sugar is the candida. Stick to your guns, I would not let the school run you over. Some are very aggressive, some more responsive, if you are in a larger area you could also consider changing schools. Lyme (and Morgs IMO) have psychiatric symptoms and your son is manifesting them. They need to be serving him and you and not the other way around. Your taxes pay their salaries. Is your pediatrician cooperative, their help could be invaluable if they are. I know someone else posted a full herbal regimen for their child a few pages back, you might want to give some of these a whirl with your doc's permission of course, mostly things to build up the immune system and replace vitamins that Morgs and Lyme steal. TC sweetie and email or pm me anytime. Us Morgies moms gotta stick together!
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Post by Administration on Nov 9, 2005 10:23:38 GMT -5
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Post by Administration on Nov 9, 2005 10:25:46 GMT -5
Try contacting LymeAid4Kids at the Lyme Association.. They can give you advice as well. I know they help many who have kids with Lyme. Just goto The Lyme Association and hit contact information.
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