Our teenager-neurolyme-in-denial- (who still needs to be in school by law), has stopped going to school. She was out for an overseas family event, and seems to have a phobia to return. In her mind, she will return, someday...
She has not been to class in about a month.
I have a meeting scheduled tomorrow with the guidance counselor, etc. Her homeroom teacher has been very sympathetic and helpful, but one can only help someone willing to help oneself.
I am so scared she will be put in a facility for problematic children. She will not accept help. In her mind, she has no problem.
She does not do drugs, or anything else outlandish, just is not doing school. I am scared she will fall in with a bad crowd if she gets kicked out of her present situation. She is in a very good school, even she admits to it.
I am printing some info. The school will be happy to work with her needs, but she must show up for this!
She is supposed to start doxy this week.
As for me, neurolyme myself in a big way, plus sick with a bout of the flu. Totally overwhelmed.
This is such a nightmare!
Help! thanks for listening!
Posts: 169 | From former Philadelphian | Registered: Jun 2006
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hi,
I have a teenager with lyme and the school aspect is really tough.
My LLMD diagnosed my daughter with agoraphobia secondary to lyme. She says that this fear of getting out of this house occurs for some. This was one of the first symptoms my kids developed-which is particularly obvious in hindsight. It crept up on us over the years.
Also my daughter developed a severe case of POTS- postural orthostatic hypotension. This decreased the blood flow to brain, which caused a ton of fatigue, and anxiety. She is improving a lot with treatment.
Well, it is good that your daughter is getting on the dioxy. Hate to say it, but she will most likely feel worse when she takes it and have even harder time making it to school.
I would get an alternate avenue for school started- homebound tutoring thru the school. A lot of us have had to be pushy to put it mildly to get this service, which is a right here that schools often try to get out of.
A search here will yield a lot of good direction on this. on-line classes are an option. You can always go back to school full-time iwhenever she is ready. If it turns out that she has the energy You wouldn't have to use the home-bound after setting it up, but it can be bad if you need it and they take a long time.
We are doing on-line classes for now with my 15yr old and she is going to go back to school for one class next quarter.
Do you think there's any psychological connction between the family overseas trip & your daughter's reluctance to return to school?
How long has she been gone? How old is she? Does she have a strong support system of peers, or is she more of a *loner* ?
I ask these questions, I guess, to try to understand if this is more of a behaviorial situation - or a psychological situation - which I think is hard to differentiate between the two.
Clearly - there is a psychological component, don't get me wrong - as we are all social/emotional beings -- just wondering if you think this is more of a neuro- psycho/social problem due to her disease process OR if something occurred BEFORE, DURING, or AFTER the trip to bring this about?
I know that after I stay in the house for long periods of time because I'm too tired to leave - it becomes harder for me to leave the house - as if it is my comfort zone and sometimes I have to force myself out of the house.
Do you suppose that your daughter has merely taken the concept of school out of her comfort zone? That it might be something both you & she must force herself to do?
If she is physically unable, or even mentally or psychologically UNABLE - that would be a completely differnt story; I'm just wondering if this is a teenage attitude meets emotional challenge to force herself from her comfort zone that, I assume, has become her home.
I'm not a psychologist, a doctor, or even person with lots of experience in these matters. However, as a mother, I would want to make sure I really understand the true fear/motivation of her refusal to attend school.
Do you think you could somehow ease her into it slowly? Such as -- attending morning classes, then half-day, then gradually all day?
I know this is difficult for you, because as a parent I know you want only the best for your child and sometimes those are not easy decisions to make -- especially for a child whom is ill and you don't know the entire extent of that illness.
Also - as a person that would possibly be prone to agorophobia.. (that is the fear of leaving the house, right? Or is that fear of spiders? Whatever, I could have both.) ...anyhoo - I know that if I DON'T FORCE myself to leave the house and do things, I'm only reinforcing the desire & habit to STAY in the house. Just my opinion.
I'm sure you will make the right decision for your daughter. Keep us posted.
All my best,
-------------------- DR. Wiseass NOT a real doc - just a real wise Posts: 792 | From USA | Registered: Jan 2005
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I wish I could offer advice about the school,but I don't think I'll be a lot of help there directly..indirectly maybe. You don't mention much symptomology, but you did say neurolyme.
Neurolyme has many known neuropsychiatriac effects as it sounds you well know. Some people benefit frome Doxy, yet I don't believe it crosses the blood brain barrier very well at all making it hard to actually deliver the abx. to the bugs in the central nervous system.
There is some controversy as whether the abx. has to cross the bbb to be effective in neurolyme,but if treatment fails I wouldn't hesitate to ask your llmd about IV Rocephin or another Iv. abx. that crosses the barrier well.
With neurolyme/als myself I failed on everthing until I went on Rocephin.
You didn't mention your chids age, but is homeschooling/tutor/ mentoring a possibility. My child is also lyme positive so we home school him(very easy to do) just so his immune system doesn't have to fight all the school bugs + lyme.
Regardless in the long run some missed school if she can recover form lyme probably could eventually be made up.
I wish the best for your childs health and yours. There are some very knowledgeable people on this site who I'm sure can give better advice then me.
Take care Travlr1
Posts: 66 | From West Coast | Registered: Jul 2006
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posted
Hi am36, I'm wondering if you were with your daughter when she took the trip. I suspect she is fearful and she may feel the need to be near you. She may try to hide those feelings by behaving like she could care less about you.
The neurolyme may make it difficult for her to do academic work or even socialize normally. It could make her more emotionally reactive.
The thing is that she needs you to be strong and match her emotional intensity at times and just to be emotionally available. She has to know that you (or parents) are in charge.
What you have written about has to be a big problem in lots of families. How do family members feel safe and connected? I am trying to learn how that is different when Lyme is involved.
If your daughter really has neurolyme, then she must feel as scared as you do about things.
Some suggestions...When you talk to her get eye contact. It can be nose to nose. Tell her how you feel (i.e. mad, sad, scared). Tell her what you need her to do. Match or exceed her intensity so she knows that you are as strong or stronger than her and can meet her needs.
Tell her what you need her to do. Remember Edith on All in the Family? She knew about attachment. If she told Archie, "I need you to. . .", he could not say no.
When she misbehaves or refuses to go to school, you may ask her why. She may say something like "I don't know" and would probably be telling the truth.
My impression is that home-bound or home schooling would be best while she gets on track with treatment. Maybe her doctor could recommend that.
These are some ideas for a starting point. The medical treatment is obviously a priority. I hope it can all work out together.
Oh, one more thing. If kids are really scared of getting taken out of a home, they often do something to make it happen. That way, they don't worry about it anymore. I suggest you avoid scaring her with the possibility. She is where she belongs.
am36 you are doing good, just hang in there.
Posts: 158 | From Ecuador | Registered: Apr 2006
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First of all, I must say that I could not ask for a more supportive staff. They are clearly trying to be supportive and helpful to my child. These are people who are in education for the right reasons.
When I mentioned she was in a good school, I was not (only) referring to academics. This is a good, loving, nurturing, semi-private high school.
I arrived at the school a bit early and sat in the corridor. I have neuro-lyme myself, and I am happy I got there early, and needed to wait. It made me see things through my child's eyes.
I was totally brain-overloaded after about 4 seconds. Between the colorful student artwork, to the drumming and guitar playing (picture "Fame"). I was really shaky in less than a minute. I would not survive there, not for half a day, in terms of stimulation.
(my kid claims it only bothers her at lunch and at recess, so she stays in the classroom. I think she's in denial.)
Problem is that home-schooling is illegal in our city. By law the school has to report prolonged absences. We all agreed that we don't want her in a situation where she will be grouped together with kids who are engaged in "negative behavior".
The school staff is going to maintain contact with her personally to try to make it easier for her to return . Question is, in the big picture, what is best. She cannot be homeschooled legally, at least in our city. So short of moving, we don't know how to proceed.
Posts: 169 | From former Philadelphian | Registered: Jun 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
There is a difference in home schooling and homebound teachers.
In the latter the school system provides the teachers for a student who is unable to attend school and the student does the work at home. When she is ready to return, she will be caught up with her classes, at least in theory.
Often the biggest hurdle is in getting the school to admit the child needs homebound teachers. It sounds like your school may be open to the idea, so you won't have to fight this battle.
There are a lot of posts here recently on homebound teaching. Check them out.
Good luck!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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If the city i lived in had an ordinance that negatively affected my childs health i would move (i actually did move one time due to lyme issues so i'm not saying to do something i haven't done already). I fully understand that moving is not an easy thing to do, but with what neurolyme can degenerate into i would move if the measures your are attempting fail.
Consider contacting the local politicos and honestly threaten litigation if their ordinance harms your child.i think a civil liberties lawyer worth his/her salt could make swiss cheese out of that ordinance.i don't even think it's legal in the united states to forbid omeschooling. All states allow home-schooling, although the regulations (hoops to jump through) vary by state.
i sincerely wish you and your child the best. good luck
Travlr1
Posts: 66 | From West Coast | Registered: Jul 2006
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posted
there is an organization here that provides homebound instruction. It may be an option.
We are not in the US anymore. Homeschooling is officially legal, but one needs to get a permit, which I understand from those who have tried it, is virtually impossible in our city, and to khomeschool without a permit which is impossible to obtain, is illegel...
What gave me some hope is that yesterday she was explaing to her younger sister (also suffering from lyme) why it's important for her to go.
She may have gotten up the courage to go today, if not for the fact that she is obviously sick with a very bad cold/flu. what luck.
no doubt that the trip overseas and the absence made it worse. close family wedding. She feels scared and strange about just showing up at this point.
what really impressed me with the school is that they are happy to communicate with her and work out a plan. Only problem is by law they have to report truancy at some point. My nerves are shattered (whine, sorry) Not really up to the municipality poking around in my business at this stage.
thanks for all your support. I am not yet really well enough at this point to totally take care of myself, and I'm busy taking care of everyone else. Very difficult.
Posts: 169 | From former Philadelphian | Registered: Jun 2006
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There are some very knowledgeable people on this site who I'm sure can give better advice then me.![[group hug]](graemlins/grouphug.gif)
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(i actually did move one time due to lyme issues so i'm not saying to do something i haven't done already). I fully understand that moving is not an easy thing to do, but with what neurolyme can degenerate into i would move if the measures your are attempting fail.
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