posted
Hi, My daughter's mental condition was deteriorated over the past week - and we put her into a treatment center for anxiety/depression/bipolar and suicidal thoughts. She has been completely miserable since starting two days ago - crying uncontrollably. Unable to participate in any of the 'routine' of the center.
Now this morning, I found out that she just tested positive for LYME! I feel like such a **** putting her through all this when it could have been dealt with earlier.
I dont' know if I should take her out since she will start on antibiotics - wondering if she might get some psychiatric herx symptoms?
I have put in an emergency call to an LLMD who I was planning to see next week, but have not met yet.
I wonder if should she go to regular hospital for treatment?
crying, misty
-------------------- 12yo Daughter w/severe anxiety, fatigue, dizziness, BPII - IGM 41+, 23+ and IGG 66+, 41+ Self - Undiagnosed - have peripheral neuropathy, hearing loss, facial tics, fatigue and a MRI w/lots of lesions. Posts: 26 | From Worcester, MA | Registered: Sep 2010
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posted
Misty, I am so sorry for what your daughter is going through.
My daughter had major anxiety and panic attacks, some depression, but not bi-polar or suicidal.
All doctors diagnosed her with psychiatric issues instead of bacterial infection.
Her "psychiatric" isuues went away with treatment. Any stressful situations during herxing would bring out symptoms --that is why we homeschooled. No pressure to be anywhere.
She is still undergoing treatment, but the anxiety/panic is gone. It was one of first symptoms to clear and it cleared fairly quickly.
Every case is different. We are sending prayers your way!
Posts: 69 | From Birmingham, AL 35242 | Registered: Sep 2008
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posted
Poor kid, it's tough enough as an adult going through the anxiety. I could only imagine what it feels like to a child/teen. I can also attest with the right abx the anxiety will clear fairly quickly but without abx it can get out of control quickly. Best of luck.
Posts: 239 | From NC | Registered: Aug 2010
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posted
Hubby had 3 psych admits early on in his illness 10 years ago -- was a couple of years after that before he was diagnosed. For him the psychotropic meds just caused more side effects and did not help with symptoms. He was suicidal 2 of those times.
His main symptoms have always been G.I. and neuro. Docs said it had to be anxiety since his tremors were too fast to fit the definition of Parkinsons.
Depending on what state you are in they will most likely keep your daughter for 72 hours for observation and then let her go as long as she is no longer suicidal.
Hubby does really well on SAM-e and herbs such as passionflower.
Highly unlikely that a doc would admit your daughter to a hospital for lyme treatment. And psych admits will very rarely get a thorough medical workup.
I would try to get into the LLMD ASAP and maybe try to locate a LLMD psychiatrist or psychologist.
My suggestion would be to go slow with treatment to not exacerbate psych issues.
Either you or your daughter needs to start keeping a diary now. For each day list meds and supplements with doses. Then list any major symptom changes -- new symptoms or those that have changed. Either once a week or once a month re-evaluate major symptoms -- rate on scale of 1 - 10 for example.
You didn't say how old your daughter is -- but if she is a teenager then I would try to let her be somewhat involved in treatment decisions.
I don't think you can predict how your daughter will respond to treatment at this point. I would just start with one med and take it from there.
A brain SPECT scan would be very useful in my opinion and also a Clongen bloodslide. For hubby those 2 tests have been the most definitive in regards to actually proving he has an infection.
Coinfections -- especially bartonella -- need to be considered. Lyme is hardly ever just Lyme.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
My daughter has psychiatric issues from Lyme. Some, but not all, of them have improved with treatment so far.
I will say that the last place I would want her to be is in a psych hospital if she is herxing.
She has not been suicidal, though.
I agree with the suggestion to find a LL psychiatrist. We see one in NJ even though we are in TX.
Posts: 984 | From US | Registered: Dec 2007
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momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
I agree with Bea about taking it slow. Too much too fast can really be harsh, especially with any psych issues.
The diary is a great thing to keep. On days that I feel like my son has had a major setback, or that we are not getting anywhere, it really helps to flip back and see just how far he really has come.
It also will help keep up with the 3-4 week cycle and to be able to realize some changes could be from a flare.
It's common for children to experience neuro/psych issues. It WILL get better as treatment goes on.
I'm so sorry to hear of another child sick. My heart goes out to you.
Posts: 1408 | From Tx | Registered: Nov 2009
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posted
Thank you for the replies. The structure of the program she is in is the hardest part for her since she has no energy to do anything, except cry.
Do doctors ever do IV antibiotics with children?
We will keep a diary better now - I agree it will be important. If anyone has a suggestion for format, or a template let me know.
misty
-------------------- 12yo Daughter w/severe anxiety, fatigue, dizziness, BPII - IGM 41+, 23+ and IGG 66+, 41+ Self - Undiagnosed - have peripheral neuropathy, hearing loss, facial tics, fatigue and a MRI w/lots of lesions. Posts: 26 | From Worcester, MA | Registered: Sep 2010
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momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
I just have a daily planner for both of us and every day I wrote down what we ate, what meds, symptoms, and overall mood or any changes.
I carry it in my purse so if something changes during the day I can jot it down because by the end of the day I'm likely to forget!
Posts: 1408 | From Tx | Registered: Nov 2009
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posted
Be careful with the pysch meds she's on. I cried uncontrollably/suicidal thoughts when I was put on klonopin...discontinued it after 4 weeks. I cried for hours and hours and could not stop. All the doctors thought it was me and not the medicine. It was brutal. Once I stopped the meds (I was also given zoloft), my crying stopped and it took me a while to regain my normal happy self.
I'm not saying psych meds cannot be of help, I'm just saying to be really careful with those meds.
Posts: 618 | From NC | Registered: Oct 2009
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posted
I have a calendar for both of us. I like to see a month at a time.
I write down any change in symptoms and how my daughter spent her day. Also what meds she took.
Posts: 984 | From US | Registered: Dec 2007
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Our daughter has bad anxiety, etc. She gets physical symptoms from the anxiety added to the symptoms of the infections and it can be so tough.
Like jwall, pysch. meds has not helped. Seemed to make matters worse. Our daughter seems sens. to meds. She has Lyme, Bart, RMSF, Myco P.
Some of the anxiety did improve on Bart treatment, but now the anxiety is back and we are retreating.
Yes, it is helpful to keep a diary. Hang in there!!! Please give her a hug and tell her it is the infections and she will get better.
I hope she will be seeing a LLMD.
Hugs, Jane
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Nothing worse than having your beloved daughter in a physch ward...so so sorry. My daughter ended up there a few times herself when she was a teen...I TOLD THEM IT WAS LYME...got pooh- poohed, of course.
The meds were like poison to her...I believe that her age made it so, or was part of the reason...her brain wasn't even finished developing for pete's sake.
We thought many times that this it, we are going to loose her...it was such a dark time.
And the feeling of helplessness as a parent...well that is indescribable.
But...you KNOW what is wrong and you can take action to get treatment. That is such a blessing.
It will be okay. I hope you understand that with treatment she will get better. It takes time, but it will happen.
I just always wonder how many people who have mental issues have some sort of organic situation going on that if addressed, they could improve and move on with their lives?
Lyme is at least treatable.
The majority of phsychiatrists that my daughter encountered over the years were a very negative influence.
The problem is, your daughter cannot help how she is feeling, it isn't because she cannot deal with something or another, or that she had awful parents or a crappy childhood...it is because she has an organic situation going on and the doctors are totally unequipped to handle that.
The doctors handle the situation in such a way, that the patient ends up thinking they are crazy because they cannot get a "grip" on it or, like my daughter's thought process...Why am I so sad? why cannot I be happy?... I have loving parents who care, a family that cares, I am loved, yet I just want to be done with it all and kill myself.
So, please bring to her attention, so she can think it over, that the LYME is causing her terribly depression, not herself...that she cannot control that.
Sue
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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I am torn... dont' know whether to leave her there for a couple days bkz once she starts abx treatment her herx could be bad.
Do they do IV antibiotics for kids?
thx, misty
-------------------- 12yo Daughter w/severe anxiety, fatigue, dizziness, BPII - IGM 41+, 23+ and IGG 66+, 41+ Self - Undiagnosed - have peripheral neuropathy, hearing loss, facial tics, fatigue and a MRI w/lots of lesions. Posts: 26 | From Worcester, MA | Registered: Sep 2010
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Jane2904
Frequent Contributor (1K+ posts)
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posted
Hi Misty,
I think most LLMD will start with oral antibiotics. Each case and Dr. can be different.
We always start our daughter on a low oral dose and try and work up to full dose of antibiotics.
Our daughter could not tolerate Cipro, as it caused her anxiety to become worse, etc. Other have been helpful , but , again we always start with 1/4, 1/2 dose.
I truly believe your daughter will start to feel better once she gets treatment for Lyme and any co infections. A good LLMD will be able to guide you.
Best of luck to both of you. I am glad you found this board. Lots of supportive, helpful folks!!
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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posted
I think it depends on the LLMD about IV abx for kids. I think my daughter would be a good candidate for it, because her symptoms are all neuro and she has been treating a few years. We are even willing to pay out of pocket for it if we have to, so that is not the issue. I haven't been able to get her on IV yet, but I have read about other kids or adults that seem to get on it more quickly.
I would be surprised if she can even start the abx if she is still in the hospital. When my daughter was in the hospital, they didn't believe in the Lyme and they were calling the shots about her meds. She happened to be on an abx break at the time, but they wanted us to stop all of her other meds. They changed her psych meds, even. They thought her headache was due to her mood disorder.
My daughter just herxed on some new abx. It caused her to have a very low frustration tolerance. We just made some accommodations for a few days and it got better. If she had been in the hospital, I am concerned they would add some med to address it that wouldn't be necessary and might even make things worse.
My daughter's mood disorder symptoms improved quickly with Lyme treatment. She had been taking Seroquel to control her raging and she was able to get off from that very quickly, once she started taking abx.
Posts: 984 | From US | Registered: Dec 2007
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momindeep
Frequent Contributor (1K+ posts)
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posted
From personal experience, my daughter never did well in the phsych ward.
The doctors there sometimes make snap judgements and ALWAYS diagnose...why? so they couldbput her on meds and to collect insurance payments.
The problem with their "diagnosis", is that no matter what they say she is suffering from, it will not be correct because she is suffering from LYME. Her illness is LYME and they cannot fix that for her.
My daughter was diagnosed with just about every mental illness known to man...I am serious here. The problem with that is it will follow her throughtout her life. Doctor's diagnosises are the gospel and it can be detrimental to her future...it has happened to us.
I guess you need to ask yourself if she is being benefited by staying in the hospital.
It is scary to bring her home, I know. It is okay to be scared.
My daughter was suicidal too. Only abxs are going to make your daughter better.
Sue
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
You all have some very good perspectives, as parents who have been there.
We are going to bring her home - with assurances from her that she can 'be safe' and talk to us if she is feeling like hurting herself. And start her on the low-dose Doxycyline from the GP. I have a LLMD appt coincidentally on Tuesday, so I can take her to that (instead of me).
How important is it to have a Pediatric LLMD? The Pediatric LLMDS are over 3 hrs away and booked until December.
wishing there was a Forum here for Kids with Lyme! Lots of things seem to be different for kids.
misty
-------------------- 12yo Daughter w/severe anxiety, fatigue, dizziness, BPII - IGM 41+, 23+ and IGG 66+, 41+ Self - Undiagnosed - have peripheral neuropathy, hearing loss, facial tics, fatigue and a MRI w/lots of lesions. Posts: 26 | From Worcester, MA | Registered: Sep 2010
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Misty:
You are doing the right thing by bringing your daughter home. How wonderful that you have a LLMD appointment for her so soon!
I don't know how important a pediatric LLMD is because there wasn't such a person when my daughter was younger.
You will probably be able to answer that question better after your appointment on Tuesday tho, so you will be able to make the right decision, I am sure.
I think the neuro stuff is VERY difficult for young people, not that older folks don't suffer too...my daughter went to hell and back.
Let us know what happens and keep us posted. Many of us on here think and pray for others throughout our days...we will do the same for you.
Sue
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
I understand that each person responds differently to treatment. I can only tell you my experience. I've had some mental issues with the disease, paranoia - occasional hallucinations, depression, anxiety... in my case, the herx made these things worse and I'm still working through this. Which means going very slowly and easily with the abx. I'm sure your LLMD will be able to help you with this question. I'll be praying for her.
Posts: 256 | From Texas | Registered: Jun 2010
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posted
My daughter started with IV Rocephin. After 6 weeks her gall bladder acted up so we switched to IV vancomycin.
She only made it 4 weeks on that, but it was the best drug she took. She then moved on to orals which she is still on.
Everyone one is right about the diary. Also, doctors want to prescribe a standard dose of medicine for everyone.
Our daughter took lexapro for a short time, but only 5 mg instead of the 10 prescribed.
We started slow. Moved to a level that she responded to and did not go higher.
It helped with the dysautonomia and she weaned off fairly quickly after the IV antibiotics.
Posts: 69 | From Birmingham, AL 35242 | Registered: Sep 2008
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We tried a day program early on before the lyme diagnosis, it only resulted in the "its all in his head" diagnosis and denial about mounting neuro symptoms. Not a good place for lyme kids! Also experienced bad reaction to klonopin, made all of the emotional symptoms much worse. Lexapro seems to do a better job of supporting stability for son. Take one day, hour, moment at a time.
Posts: 28 | From ri | Registered: Oct 2009
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posted
No other words of wisdom for you. Just wanted to say that I am so sorry your daughter is going through this. You have found the right group here to guide you. I don't know what I would have done if not for this group.
Best,
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
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posted
Here's an update. After release from the inpatient psych ward in early October, daughter started on Doxy 100mg 3xday. We finally got through testing and evaluation with LLMD.
We put her on 1/2 day school schedule w/ extra tutoring at school (they were very supportive thankfully). This helps a lot because she is able to get more rest.
She has abnormal SPECT (hypoperfusion), abnormal EMG (demyelination, nerve damage), low CD57, positive ANA, low Vitamin D. Luckily her brain MRI is normal. I am still stunned.
Now I can really start to believe that her psych issues are related to Lyme. The doctor will do some additional tests to rule out Lupus and some other weird neurological problems.
Doctor thinks she will need IV antibiotics, but we won't start until after the holidays. Until then, she'll continue on doxy and add in rifampin.
Poor girl - it is hard to explain 1) that there is not a 100% proof of Lyme and 2) that this will take an unknown amount of time to heal.
misty
-------------------- 12yo Daughter w/severe anxiety, fatigue, dizziness, BPII - IGM 41+, 23+ and IGG 66+, 41+ Self - Undiagnosed - have peripheral neuropathy, hearing loss, facial tics, fatigue and a MRI w/lots of lesions. Posts: 26 | From Worcester, MA | Registered: Sep 2010
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Read your post and just wanted to add my 2 cents. My son was diagnosed last year at age 19...only pysch issues, nothing phsyical. Its been a year now and he's actually worse. Has stopped talking and can no longer be left alone. BUT let me say that just this past weekend he actually said some sentences, so maybe he's on his way up. Have been seeing a psych doctor the whole time who has prescribed numerous meds, none of which did anything. We still see him every other month or so but I no longer try to get him on these kinds of meds, they just weren't helpful for him. My son is currently on 400 ml. of IV doxy per day since 8/10. I do think he's getting better, just taking a long time. He will get there and so will your daughter. I will say a prayer for you.
Posts: 158 | From NJ | Registered: Jul 2010
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
Get her on allergie Immune...she needs to clear toxins and debris. Needs to have her pathways open. Best wishes
Posts: 1009 | From NJ | Registered: Aug 2009
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posted
Frikfrak - Wow... a year in treatment and he is worse?? How long do you think your son has been infected? Is he seeing an LLMD? Does your son have any coinfections?
Posts: 57 | From VA | Registered: Feb 2010
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I am so sorry to hear your son is doing so poorly. Is he hospitalized? Are you working with an LLMD? It sounds like he might need an adjustment in treatment... that's such a long time. My heart goes out to you - it is so hard to watch our kids suffer.
to: lightparfait... what is 'allergie immune' - is it a product? I was wondering what I could give to support her immune system - without adding many, many pills to the already numerous mix.
thanks all, misty
-------------------- 12yo Daughter w/severe anxiety, fatigue, dizziness, BPII - IGM 41+, 23+ and IGG 66+, 41+ Self - Undiagnosed - have peripheral neuropathy, hearing loss, facial tics, fatigue and a MRI w/lots of lesions. Posts: 26 | From Worcester, MA | Registered: Sep 2010
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I am so sorry to hear your son is doing so poorly. Is he hospitalized? Are you working with an LLMD? It sounds like he might need an adjustment in treatment... that's such a long time. My heart goes out to you - it is so hard to watch our kids suffer.
to: lightparfait... what is 'allergie immune' - is it a product? I was wondering what I could give to support her immune system - without adding many, many pills to the already numerous mix.
thanks all, misty
-------------------- 12yo Daughter w/severe anxiety, fatigue, dizziness, BPII - IGM 41+, 23+ and IGG 66+, 41+ Self - Undiagnosed - have peripheral neuropathy, hearing loss, facial tics, fatigue and a MRI w/lots of lesions. Posts: 26 | From Worcester, MA | Registered: Sep 2010
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Misty: I'm sorry to hear or your crisis!Children and Lyme is a tricky thing. After a year that I am hoping I can someday block out, my 15 year old son is doing better with psyche issues. He has been in treatment since June and is on IV rocephin with other "stuff". He sees and ILADS doctor that sees older kids and adults. Our doctor spent a week with the wonderful pediatric Lyme doctor. I feel very comfortable in our care with ages ranging 15-43. My son was on 24 hour survellance at home as no one was able to help. Someone even had to sleep with him as he couldn't be trusted. He was never home alone. With neurological Lyme you never know what the triggers are or when they will happen. The bi-polar stuff and personality changes were soooo hard to deal with. I literally lost my son for a while to Lyme and bart. He saw three psychiatrists and was hospitalized. All were a waste of time. He is coming back and though still sick, his old personality is shining. He started taking effexor in June and it has stabalized his moods and helped some with pain. I imagine he will be able to get off of it sometime in the near future. By the way, we avoid hospitals and emergency rooms when possible. They just don't get it! Does your daughter have congenital Lyme then? How low was her CD-57? Thinking of you,
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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