posted
It has been a very hard week and I just need to share a bit of the frustration of living with Lyme.
My 15 yr old son has had lyme for 4+ years and has been with a LLMD for 6 months. He was started Ceftin 1g 2x daily and then after two months Ketek 400 mg 2x daily was added. He has been on the combination for 3 1/2 months now.
He had ADD-like symptoms before beginning treatment for Lyme and took Concerta 54 mg once daily for concentration starting a year ago. We discontinue that med after 6 months because when it wore off in the evening he became agitated and violent. It was a daily nightmare.
That experience left him very opposed to trying other meds to help with mood or concentration.
In the last month he has had 4 debilitating anxiety attacks that have included rapid disordered thoughts, hyperventilation, shaking of arms and legs.
He has also had a problem with gagging and nausea - we believe from the ceftin.
He stopped taking his meds without telling us two weeks ago because of the gagging problem. He was off them for six days. We now give him the meds and watch while he takes them.
This week he had two anxiety attacks that included stuttering which is new. One started at school when taking a test that included writing a paragraph from a list of vocab words. He turned it in with the page blank as he could not process information in his head.
By the following class period he was stuttering and shaking so bad he came home. He slept for two hours and awoke without symptoms.
The other episode of stuttering occurred at home while trying to concentrate on a writing assignment and it left him so frustrated he layed on the floor and cried for an hour.
Some nights he has great difficulty going to sleep when he can't slow his thoughts down.
He did not have anxiety problems before they started a month ago but he has had mood swings in the past. The anxiety attacks seem to occur when there is a demand for executive brain functions with creative writing being the recurring theme.
His Lyme symptoms have been almost entirely neuro-psych in nature. Neuro-psych tests in October (WMS and WISC-IV) were unremarkable for any deficits and demonstrated a high IQ (above 130).
Yet he is struggling to pass academic classes. The school is not providing any accomodation although we have asked for it.
The school wants a list of specific accommodations to be submitted by his doctor. His doctor is an infectious diseases expert, not an educator and we do not feel this is an appropriate request for the school to make.
We feel that as his parents, we can better define his needs. The doctor has already provided the school a letter identifying that our son is being treated for chronic Lyme along with symtoms.
We will be submitting our own list for requested accommodations to the school but would appreciate it if anyone can suggest a good article dealing with Lyme and anxiety.
Also if anyone has an IEP for their teen with Lyme and can share specically what it includes, we would appreciate being contacted.
Also, if anyone has any good ideas for reducing the gagging/nausea problem, please let us know. Finally, keeping in mind his reluctance to try meds for mood and anxiety are there other things that have worked to help reduce anxiety?
He also watched the preview of the movie "Under Our Skin" and he felt so validated in how real this struggle is.
He doesn't have many friends for support.
[ 14. January 2007, 09:37 AM: Message edited by: Maureen S ]
Posts: 3 | From Wisconsin | Registered: Sep 2006
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bettyg
Unregistered
posted
welcome! i started reading this, and then couldn't due to long solid blocks of text that were NOT shorter paragraphs for us neuro lymies to read/comprehend.'
outstanding specific topic!!!
please edit this; click pencil icon,
now go the beginning of the 1ST LONG SOLID TEXT. break them up into 2-3 sentences in length.
hit the enter key twice after EACH paragraph. do this until you are all done.
go to bottom left hand corner, and mark box to RECEIVE ALL REPLIES.
click edit send when done.
up to top for help/answers for you.
please post in short paragraphs for ALL POSTS/REPLIES to help all of us neuro lymies out; god bless you!
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
I am really sorry that your son is having such a hard time. I can relate.
My kids, 15 and 13 and I have lyme.
My daughter has had panic attacks on abx and also trouble swallowing. My son had trouble organizing words and had waves of anxiety to point he couldn't do school work with his tutor sent by the school.
We used liquid form of abx which helped swallowing. My daughter could swallow very cold things and some people say they could handle warm better.
The drs had us take break from abx or lower dosage when the above got bad. My son got very depressed after a few doses of Ketek. He has tolerated others well. He and my daughter HAD to have medication for depression and anxiety nontheless.
The most helpful thing we did to alleviate anxiety was to take them out of school.
They were too fatigued to keep up and it made them really nervous. They felt so much pressure to act normal but thier challenges were becoming more obvious to themselves and others. Which is so hard for teens. For us it became impossible to attend school so the decision was made for us.
There have been a lot of discussions about how to handle school that you could acsess with a search.
Our school gave us a hard time. It turned out for the best as we changed to on-line homeschooling. They are so much happier and could probably go back to school in fall if they want to...
I have had a few mild panic attacks and it was a terrible experience.
I would do whatever you can to lower stress for your son. (and for you!) The rigors of school may be too much for now.
We went with watching DVD's to distract during bad times. My daughter needed me to sit with her often because she was so anxious. We have seen them all!
My friends on this site had encouraged me to let them rest and hang out on the computer day and night if that was what all they wanted to do, sharing that that is how they themselves survived their bad periods. Both kids found websites of a constructive nature. My daughter got into writer's groups where kids write stories and critique. She did have periods of playing a specific video game all day. Son watched TV by himself wanting to be alone all day.
Friends and family tended to disagree with this going on and on in our household; and I certainly had not pictured our life this way. But having lyme myself, I can tell you that the the fatigue is unimaginable even if we look ok.
The kids are now doing some schoolwork and getting out and about now and their brains did not rot as I at times feared. They are not too anxious lately and actually rather cheerful! It gets better!
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