hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi lymies,
I sent my recently diagnosed dd to elementery school today with a stomach ache and headache. She yelled "You don't care how I feel!" She says things like this occasionally.
She took her antibiotics today & a tylenol for the headache. I think once she gets there she'll probably start feeling better. Her Lyme symptoms usually go away pretty fast. She rarely gets a headache unless she's having flu-like symptoms.
My dd started antibiotics Dec. 19...maybe she's herxing??? ...maybe the antibiotics are affecting her stomach?? She takes a good probiotic 2 hours after her antibiotics.
She complained her teacher only sends students to the nurse if they have a fever or are throwing up.
My dd had a socially rough day yesterday, so I wondered if she just didn't want to go to school.
I know she didn't feel good this morning. I am torn because if she feels bad all day and the teacher ignores her, that's not right. I feel bad for sending her while she's not feeling well.
How do you judge when to send them to school, and when to keep them home? ...or when to let them come home from school?
Concerned mama Nancy
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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pmerv
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posted
This is a tough one. I know the feeling. If you talk with kids with Lyme who have grown up and are articulate, most want more than anything to be normal and go to school and be with their friends. Accusations of hypochondria or malingering are no more appropriate for them than they are for us.
My own take on it is, if your mom is not your ally and friend, your rock and comforter, who is? Whatever happens, I wouldn't let the sickness cause a rift between my child and me. They can make up schoolwork when they feel better. Even Evan White, who was desperately sick and missed years of school because of LD, has now graduated from law school.
A recent LymeTimes had a sweet story by Maia Donnely on her experience with homeschooling. She is learning so much on her own schedule. That's an option if the child is too sick to attend school. There's nothing sacrosanct about today's public school curriculum - it's just settled by a bunch of bureaucrats (no insult intended). The world is a complex and interesting place and there are many ways to learn.
You might guess that I'm a bit of a maverick. If the system isn't working for you and your daughter, screw the system.
That's my 2 bits and it's not my "humble opinion," either.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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pmerv
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And if you decide to follow my advice, you can apologize to your daughter and tell her why you have changed your mind. She will forgive you, I guarantee.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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pmerv
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posted
UP I was surprised to see this topic slipping down the list. Surely many here have children with Lyme and could offer helpful advice. I've never regretted taking my child's part against a hostile universe - maybe some people worry about spoiling children but don't you think your own role model is the most important element? If you are fighting, your child will be a fighter. If you give up, your child is more likely to give up. You can safely give your child room to make choices, because his/her choices will ultimately reflect the values you practice in your own life. Don't you think so?
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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hshbmom
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posted
Hi Phyllis,
I guess this was just a dull, no-brainer question.
It's tough to know what to do.
It worked out well that day...she began feeling better and didn't have any more problems. Whew!
I'm definitely a fighter. Right now I've got too many battles going on. Just learned in the past month that 3 more family members officially have Lyme, and have 2 other symptomatic kids no one wants to treat without positive test results. Makes me a mean mama bear.
We already had 2 that were diagnosed with Lyme this past summer & fall. That leaves just one kid with no or few suspicious symptoms.
I'm heading to a great LLMD for appointments this week...hopefully will get some great advice and hopefully a referral to someone with enough sense to start antibiotics now, before it spreads.
Thanks for your encouragement Phyllis.
Nancy
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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char
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Member # 8315
posted
Dear Nancy,
I am sorry to hear your girl is having a hard time and you are facing others being sick also.
Your question is a hard one. I asked our LLMD about this last week. She has lyme herself and as a person is very strong. She rather surprised me by saying that she does not believe in pushing kids because like we adults with lyme, they will do things when they feel better. She told my daughter that her teenage years are different than others but that is ok.
My girl started homeschooling when she could no longer get out of bed.
She and my son were out of school for one year. Then we tried a half day and it was still to much.
I pushed quite a bit--took my son to school with him crying because he didn't want to go. Finally we came to conclusion that the stress was not helping the kids.
It is so hard as symptoms are up and down. IMO you are probably in for a long haul and alternate plan at least for rest of year would be good.
Not attending school is a loss to be reckoned with but in the scheme of things it can be a good thing for your daughter and you, too.
Lyme moms often learn the well-kept secret that it doesn't matter that much if they drop out for a while.
I sort of felt like the world was ending or at least upside down at first. Then one learns the benefits of sleeping as much as needed and doing school work in PJ's when the energy is there. Homeschoolers are spared a lot of busywork that our kids don't need.
My daughter is posting her list of what she learned in 2006 under Support here. I hope that it might encourage you. She is 15 and home for 2yrs. Getting much better, though.
Respectfully, Char
Posts: 1230 | From US | Registered: Nov 2005
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do what is truly best for your child -- and have your bases covered well.
only tell the school the minimum of what they need to know AS EDUCATORS.
if she is not well enough to go, don't send her, and have a doctor's backing for absences longer than a coule of days, or that become frequent.
keep in mind, children with Lyme qualify for disability rights and protection.
learn everything you can about it before approaching the school.
school's are entirely beurocratic and generally LYME ILLITERATE.
it is not their role to become Lyme literate or your job to educate them on Lyme.. any more than it is their job to understand a specialized form of leukemia or cardiac condition. they are educators, not doctors. their doctors do not treat your kids. be careful, even if you sense no problems at this time.
they are to respond to doctors orders and the child's documented symptoms.
their job is like yours re: school, to support the child to gain an appropriate education based on how their illness/disability impacts daily living and learning.
documented symptoms are to be responded to, regardless of the cause. their jobn is not to decide whether the child is well enough to go to school, that is your job with her doc. their job is to educate the whole child and to account for her condition - not to impose expectations based on generalized standards.
mo
[ 15. January 2007, 02:34 AM: Message edited by: Mo ]
Posts: 8337 | From the other shore | Registered: Jul 2002
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char
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Member # 8315
posted
mom-
How is it going?
We have come on strong with our advice here...
One more thing to add is that your daughter probably like all kids and teens may not be able to discern and report all her symptoms.
So her reluctance to go to school is IMO probably due to more discomfort than just the headache and stomach problem.
I am sorry that I pushed my kids so hard because I did not understand what they were going through. I wish someone had told me from the get go to get them laptops and let them play computer and watch tv all day if they did not have energy for anything else. It felt weird to me but it was right for us and they are transitioning back to the outside world nicely as they are healing.
Come to think of it; I started "getting it" when I started having all their symptoms- a mixed blessing but I am glad I could know their pain and still somehow keep going.
A counselor told me that children do not have the capacity to push through that adults have.
I hope I am not putting you off with the strong opinions here. It really comes through your posts what a great mom you are and how much you love your family. I trust your mother's intuition will see you all through.
pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
Looks like hshbmom backed out or got busy, but it's still an interesting topic. I also regret days I disregarded my children's complaints and sent them off not quite crying but ....
I forgot to mention the special children's education issue of the Lyme Times. That's where the article on homeschooling was published. There are also articles on how to get your legal entitlements from the school district in terms of home instruction, special circumstances for testing, and many other modifications disabled kids are entitled to.
You can get the LT from www.lymetimes.org or contact Marisa Battilana
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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posted
"She takes a good probiotic 2 hours after her antibiotics."
I know you've got enough on your plate right now, but just wanted to mention it doesn't seem like 2 hours is far enough apart.
Posts: 117 | From . | Registered: Oct 2006
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hello again,
I just got in from 3 days in NC with my children. We had appointments with my LLMD. It was very productive.
Last week we had to go to Florida for medical appointments. I am worn out.
I was encouraged by the news I received in NC.
I appreciate all your replies.
Nancy
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
Nanacy, I can really appreciate your question. Lymie mom of 5 lymies from birth. All recently diagnosed
(although my PCP still isn't totally convinced, despite two positive western blots from two different labs, 5 kids with antibodies, herxing seizures, and dramatic improvement with treatment)
back to the topic. We experience daily varying levels of I don't feel well, to just plain teenage non-compliance (--can't get out of bed until the afternoon, when the friends get home of course)
So sometimes it is a very tough call. My third grader, for example, will be totally honest. If she says she does not feel well enough to go to school, I take her word for it.
I have a teenager, on the other hand, who decided that she goes only two days a week. She has some real emotional issues, seemingly secondary to the lyme.
She refuses to be hometutored. Totally non-compliant relating to school. Probably caused by years of slow decline that killed her self esteem.
We are seeking counseling for ourselves. she herself will not go for counseling. I believe she takes the doxy only because it clears her acne as well. So. it's really not so simple.
If you need to chat, please PM. Very similar situation.
One more thing, if general aches and pains are an issue, it sometimes helps to wake them a bit earlier or bring them a bit later, it takes time for Motrin or whatever else to kick in. Better late than never.
Posts: 169 | From former Philadelphian | Registered: Jun 2006
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I have one teenager with lyme and two non-lyme children. I feel slight guilt about making my non-lyme kids go or stay in school when they see the oldest child get to "slide" (in their eyes)!
Every child is unique, as is every case of lyme/co-infections! Add the many stages, herxs, drug reactions, etc, etc, to the usual childhood hormones and dramas... Boy ain't life exciting and intresting!
Actually it was quite a battle with such a stubborn, determined teenager to get her to let herself off the hook and to change and postpone her goals.
Are you familiar with the grieving process? She really went through the stages of grief before accepting that she had lyme and life was not going to be as she had planned.
She wanted to be involved in school so much that she is trying to attend one class a day right now, but has missed more than she has attended!
One great thing lyme has taught me is MOMMA USUALLY KNOWS BEST! and to believe in myself and have confidence in my ability to mother!
Maybe we need to start a support group (or forum) just for mothers (and dad's - I guess) of little lymies!
Keep on Supporting Each Other!
MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
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