posted
How much do your kids with Lyme go to school?
My 10 year old goes to school 1/2 day on a good day and stays home most days. This has been going on since Oct. Before we knew she had Lyme, we pushed her to go to school more than we do now. Now, I feel like we know she is really sick and I hate to impose negative consequences for not going. She is going less than ever now though, even though she doesn't appear to be worse.
Her school is a private school so is being accepting of this situation so far.
She says she can't go to school because she gets so frustrated she feels like crying and her head hurts too much. She does have a very low frustration tolerance and cognitive processing problems.
Posts: 984 | From US | Registered: Dec 2007
| IP: Logged |
posted
My 11 year old daughter was in for 3 days out for 2, in for a week out 3 days, .......in and out, in and out.
Finally we decided to put her on homebound. The LLMD wrote the note to the school district and she has been out 1 month while receiving instruction at home. She sleeps at least 12 hrs whereas before she was having to get up at 6:00 am after bareley getting any sleep due to restlesness and hip pain.
I think she will try going back next week.
The extra sleep did help. She still does get headaches, though.
Hope that helps. I'm sorry you and your daughter are having to go through that. It is frustrating.
-------------------- I do not feel obliged to believe that the same God who has endowed us with sense, reason, and intellect has intended us to forgo their use. -Galileo Posts: 61 | From South Carolina | Registered: Oct 2007
| IP: Logged |
posted
amazingly, my son hasn't missed very much school at all, but then again, he is in kindergarten.
His symptoms (at least the ones we know about) at this point are primarily behavioral, and somehow by and large he has been able to hold it together at school, but falls apart in the afternoons.
(although with a med change one week ago, his teacher indicated that he has become 'more rambunctious", resulting in him going on "yellow light". At home over the past week he has also been very hyper).
He has been on abx for 8 months, and at this point I can honestly say that things do get better.
In November, 3-5 times a week he would be too tired to walk. Now its once every couple of weeks.
We will be going for a neuro-psychological eval next month, this will help us get an idea what, if any cognitive deficits have occured due to Lyme, and will be a vital tool in the event that he has to get an IEP or 504 with the school.
In the event that he has to go on iv abx, which is very likely given the extent of his behavioral sx (which suggest CNS involvement and/or coinfections), then homeschooling will have to be put in place.
How long has your daughter been on abx?
I believe that age is a factor with this illness. With a child as young as mine, he cannot really remember what it feels like to be healthy. We don't have a baseline on his functioning.
He also cannot tell us what his symptoms are, because he doesn't recognize them as being something wrong. (ie; didn't know what a headache was until we described it to him).
WIth an older child, s/he can remember feeling healthy, and the discomfort of not being able to function on the same level as peers is more acute.
FOr older kids the work load pressure is greater as well.
5 minutes of homework is a challange for my son. i don't think he could handle the pressure of the increased workload that will come in subsequent years at school.
I can also say that at times when there is no pressure at all (lazy weekends), my son exhibits few if any symptoms. When he is stressed though, he is very difficult to manage.
I wish you the best of luck. Your daughter will eventually feel better, it's just going to take longer than you expect. kp
Posts: 394 | From tinton falls nj | Registered: Jul 2007
| IP: Logged |
posted
My 5 year old dd is home now. Last year in preschool, un-dx, she could last the morning and then was an absolute wreck for the rest of the day. Frustrating thing was her preschool teacher kept telling me that she "seemed fine." She even told me to "stage" a phone call to a dr in front of my dd and get food coloring to make fake medicine. Like her health issues were all in her head--or mine. GRRRRR. My gut feeling about her illness was confirmed by positive labs for Babesia--thank you!
I did start her in kindergarden this year. She'd been in tx for 6 mos w/ a good LLMD for lyme and babs, with good symptom resolution. BUT I found after the first 2 mos. she consistently didn't want to go. She was having trouble socially breaking into the groups and interacting. This is a very articulate chiild, mind you.
Her LLMD told us that sometimes kids who are in tx have social regression. Somehow they are afraid the pain is going to come back and it prohibits them from bonding w/ peers? Also, they spend so much energy coping, they don't go through the same social development.
That being said, I am keeping my dd home right now. We will give kindergarden a try again next year. She is starting to get bored and maybe the extra year will give her a social boost. She will still be starting at 5 because she has a late birthday and the cutoff in NY is December.
I am relieved that the kindergarden is only half day. I don't think she can handle more. I would fight for the IEP or plan you need to make it work. These poor kids have so much more to deal with--not the least of which is idiots who don't believe there's anything wrong!!!
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
| IP: Logged |
posted
Oops. I forgot to say that now that my dd is in tx, she has AMAZING amounts of energy. She gets very hyper--almost manic.
It kind of reminds me of when my other kids sit in front of the tv for too long and then you shut it off, they have all that kinetic energy stored up and they run around like crazy.
My dd saved up her physical energy for like 2 years. Maybe your son is the same way? When he has energy it's so new and amazing he is still learning how to channel it?
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
| IP: Logged |
posted
I absolutely agree with the social regression theory. My son had dificulty adjusting (the first 2 weeks of school were h*ll), but he was able to come around.
He was in day care from age 4 months on though, so he's had a lot of experience socializing.
He does not show any interest in developing new skills though, like tying his shoes, he overall seems ambivalent about growing up, and clings to what ever aspects of early childhood that he can.
I think on some level he has corelated growing up with being in pain.
I have also seen him backslide a bit in learned skills, such as he knew all of his letter sounds at age 3, read his first book at age 4, but according to his teacher, is now struggling with letter sounds, and he hasn't read anything since age 4.
Yet from her perspective he is still in the normal range. I got THE LOOK when I referred to my son as being a bright child.
yet this is a child that could add numbers up to the sum of 10 in his head as recently as 6 months ago.
This illness is tough, cause our kids often look healthy, but they are not. Some can pull themselves together for a few hours, then fall apart.
Yet this illness is messing up their minds and their bodies.
Best of luck.
PS catskillmama, what were your daughter's babs symptoms? My son has tested negative for all coinfections, yet his behavioral issues strongly suggest coinfection. He's not all that willing to talk about his symptoms (the ones he recognizes) unless they are really bothering him.
His llmd is considering bart, but I am wondering about babs as well.
at home it's on the edge of manic, I'm not sure he can or wants to control it. But on the plus side it's been a whole week since he's made threatening comments to me. I was getting quite a bit of that for a while.
He is still a bit aggressive with his little brother, the poor little guy doesn't know whether to hug his brother or run away half the time.
We've had no ocd behavior for a while, but I've caught him looking at cleaning products with longing. The last time he asked to clean, he took no for an answer.
posted
My daughter has only been on antibiotics a few weeks. She is complaining the most about her head but she has lots of neuropsychiatric symptoms that we are thinking are from Lyme.
She used to be very good in Math and now can't really even think about it. She has OCD. She rages. Not ever at school, thankfully. She can't make decisions about the simplest things. She says she can't understand what she reads. She looks like she has ADHD but testing didn't support this. She can also drag out 5 minutes of homework into an hour of torture.
Is it possible all of this will improve?
This private school lets people skip a grade if they think they will do ok so it won't be a problem for her to move ahead. She's doing 5th Grade math and LA in 4th Grade so the worst case is that she would repeat 5th Grade math and LA in 5th Grade. Hopefully she'll be able to go to school full time by next fall.
Posts: 984 | From US | Registered: Dec 2007
| IP: Logged |
posted
jk mom, She will get better!! It took months for my son to show improvement, with the physical stuff easing up first.
After 8 months, we are starting to see a little improvement in the behavioral stuff. I can still see the rage, but he is controlling it better.
Best of all, we have seen improvement in his most frustrating symptom: he couldn't feel when he was going to have a bm. For over a year and a half now. It's been almost 2 weeks, and he has had on an almost daily basis felt it before it happened.
Now we have to help him re-learn to use the potty for this, and get over his fear that bm's on the potty are going to hurt (he's pretty sore from all of the accidents).
It's still a long road, but we are starting to have hope now.
If your daughter is able to function at all after only a couple of weeks of treatment, then you are in a better place than we were. It was a month before my son could even start to handle an hour a day at summer camp.
But he missed his friends, and I felt that we had to help him to get back to living. He couldn't lay on our living room floor watching cartoons forever!!
If she is having a lot of behavioral stuff, psych symptoms like ocd, impulse control, you should consider the posibility of coinfections.
From the writings of other mom's here, babs and bart can both lead to strong neuropsych symptoms.
You can look at the list of symptoms for coinfections, but I've found that they don't say much about how they present in kids, which is frustrating.
if your daughter is not on zithromax yet, you may find that getting added on to her regime soon.
I can only speak for my son, but zith seems to have the most impact on the behavioral symptoms. (more like when they tried to take him off of it he got VERY hard to manage.)
Do you know how long your daughter has had lyme? (aproximate). We suspect about a year before our son was diagnosed, and at this point he is diagnosed with chronic lyme.
A lot of the mom's here have kids with congenital lyme, which has a separate host of issues.
I wish you the best. there are always other moms here, I can only speak for myself, I don't post that often, but I check the site frequently for info, trying to find answers for my little one. And now that i've been around for a while, I try to help others out when I think I might have something worth adding.
It's like you've been talking about my ds 8yo. We've always homeschooled and I am just starting to really notice the symptoms in him.
He seemed to pick up math really early now is regressing. He walked from room to room the other day with his math workbook and couldn't speak, it was like he became mute. He just paced the house for an hour.
For some reason the amount of work was overwhelming and he just froze up. He scribbled all over his page, looked like he was going to cry but didn't. Needless to say I didn't have him complete the assignment. It was so sad.
He has not be officially diagnosed yet but has 4 postive bands on 30,45,58 and a double ++ on 41. I need to talk to my llmd to see what he thinks.
I usually do about 3-4 hours of school with him with lots of mini breaks.
Still learning....
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
| IP: Logged |
I can't separate the babs from the lyme symptoms. But I will describe the notable ones here. She got a tick bite on her chin. My understanding is that neuro symptoms are much more likely if you receive a bite to the head or neck. Even with an obvious tick bite, an immediate fever, and a year of aches and malaise--I still couldn't get a dx!!!!!
My dd had very obvious night sweats (at least for the 1st year of infection) and intermittent low-grade fever. It would make me crazy. We'd be out, I'd feel her head, she'd be hot. I'd run home and get the thermometer- normal temp. But one day I was at a check up for my youngest son and I felt her head-hot. I grabbed the thermometer from the docs hand and yes: there it was 99.9 degrees. This still happens on occaision.
The first six months of infection she was cold, so cold. She wore sweaters in 90 degree weather.
She had burning urination and many accidents--but we found out later this was lyme colonization of the eurethra, not babs. Also, this seemed to be brought on by chicken pox (go figure).
She became very depressed. Always said "I hate myself" She still says it during monthly herxes! She would say "life is so hard." And she was right her life WAS so much harder than anyone else's. But nobody would believe it.
She was too fatigued to walk even one block and would wind up crying. Of course, many others in our life thought she was just being difficult--as her mother I knew that the crying after every slight physical exertion was a symptom, not an attitude. She had abdominal pain after every meal, would only eat 3 things (otios cereal, spinach munchies and bread and butter). She had head aches, stabbing eye pain in the corners of her eyes, joint pain in the knees.
She had a funny, tinny, sour smell to her breath, especially at night. She had terrible insominia and inability to sleep.
Oh, and let me not forget: She'd tell me that she hates me. She'd snap on a dime and rage. No behavioral discipline would work. She's scaret the sh!t out of her siblings who couldn't figure out what her deal was. Amazingly after her improvements during rx, the sibling relationships have healed and grown rapidly.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
| IP: Logged |
I am a student in High school, and I go to school every day. I occasionally miss school due to lyme, but its sooooo hard to catch up, so I try to go, no matter what. School is really hard, and I can't do my homework when I get home. I considered taking a year off, but I want to graduate with my friends.
-------------------- Really tired of being sick. Wanting to go to college and have a life. Really happy that I have a puppy. Posts: 66 | From My room | Registered: Feb 2008
| IP: Logged |
posted
My son is on homebound instruction and has been on and off for 3 years now. He would try to go back and it just didn't work out. It was decided by his doctor to keep him on homebound for this whole school year. We are just now finally seeing some improvment, very little, but at least it is improvement. When he was first diagnosed with Lyme, he also had lyme-meningitis, so he had a picc line, as a mother my first thought was to keep him in school, I thought is was so important and thought it would help, so I pushed for him to stay in school, even with his PICC, until one day he collapsed at school and my eyes were opened. The principle and guidance counselor called me in to their office and very nicely said that is more than appropriate for him to go on homebound, they were very concerned with his health and it was obvious pushing him to attend school wasn't helping matters. This was a very difficult thing for me to accept, but with much support from his doctor and the school, I have accepted this is the way it has to be until he is better. This year when it was suggested by his doctor for him to stay home all year, I didn't even question it, I just accepted it and it really has been the best for him. We are hoping he can get back next year, but one day at a time.
posted
I am in High School and I was in one of the best programs in my state, but even after a 504 plan, I was unable to attend school.
It's veer different being in HS versus elementary school though. I am worrying about College acceptances, etc.
I had to drop out of regular school and now I do online school. I don't like it at all--but I also don't like this disease. I still have to deal with it though. Posts: 215 | From Student | Registered: Oct 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[Roll Eyes]](rolleyes.gif)
Printer-friendly view of this topic