posted
OK, I am relatively new at posting here. . . Just feel like I need some encouragement. My daughter was diagnosed with chronic Lyme in March of this year. I am a nurse, but had NO IDEA about anything to do with Lyme! This is surreal!!
Medically, it is hard. What symptoms are Lyme, and what symptoms could be something else? When to worry, when to not? (Worry all the time, anyway!) When she says her pain level is 7, but she is watching tv and joking with her brother--is it REALLY a 7? When she continues to want pain med around the clock, is it really necessary, or is she getting addicted??!!
Emotionally, it is hard. Watching her friends go on about her life and no longer include her in their lives. . . . Watching people tell her she looks "so great" then see her come home and collapse for the next 2 days, all because she wanted to do one "normal" activity. Trying to help her not become bitter. . . Or depressed. . . Listening to my friends talk about their kids' activities--homecoming, that my daughter is missing out on, the prom, her highschool years are stolen from her. . .
Physically, it is hard. . . Round the clock pain meds after an appendectomy FOR 5 WEEKS NOW!! Lack of sleep, still trying to be a mom to other 2 kids, work part-time, be a wife AND research, research, research!!! Take food to daughter throughout day, shop and find food she will even eat, dr after dr after dr visits. . .
OH MY GOODNESS!!! This is unbelievable!! God bless all you moms who have LIVED through this--Any words of advice you can share??? Encouragement?? We are really getting stretched to our limits here! Thank you in advance for sharing!
Posts: 63 | From north Texas | Registered: Apr 2011
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
I lived through that...my daughter and I had to live through it. She got ill at 13...she just turned 25.
She lost most of her school life from eighth grade on...in and out of school...missed probably half or more of school...I did a lot of home schooling and she was/is a voracious reader and that was her saving grace concerning academics.
Friends dropped by the wayside one by one...there was talk about her in town and in school and some ridicule because she did not look sick. Once in awhile she could handle a day of school and the next day she would be down for a week or two.
And of course...Lyme disease doesn't affect you like that (right!) and so many misconceptions.
There were times when my daughter had to have heavy duty pain medications...now she takes Tylenol on occasion...that is all...so I don't know how to anwer your question about pain medications.
Insomnia would kick her butt...she would not sleep for a few days in a row...her headaches were relentless for about two or three years straight.
Many other symptoms and each one scared the crap out of me...I slept very little for years.
My daughter missed out on much. She grieved for a lost childhood and how things turned out. But, she reminds herself that she is still here and that even though she didn't get to have all the experiences of being a teenager, she realizes that her life is just that...her life and it offers experiences unique to just her...and not all of it was bad.
That your daughter can joke with her brother and can watch TV is a blessing and that little thing is going to be a good memory for her someday. Life can alter our paths, but our attitude towards our trials are our choice and we can boo hoo or we can see the glass half full...it is our choice as an individual to make.
Does my daughter think that getting LD was unfair?...yes she does, but she also realizes that not everything in life IS fair...and she is aware that even though her path was extremely difficult...she came out on the other side.
I quit my job to take care of my daughter during the worst of it and even though it was finacially difficult, I didn't have much choice...(she was suicidal)I was determined to get her well and it took us nearly ten years, but we did it...she is much better these days and living an almost completely normal life.
I guess I would suggest to you to look for the good in all things...even if the good is just a tiny little crumb...I would suggest to you not to worry...I worried excessively and can tell you that not one minute of all those years of worry changed any outcome one ioda...it was all in vain.
Lyme disease may shape your daughter and may be many chapters in her life...but that is just it...our experiences, good or bad, is what makes us who we are.
Wishing you and your daughter all of the best.
Sue
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
Thank you Sue!! I am an eternal optimist, but needed a place to vent! I am cheerful and positive MOST of the time around my family; but am just getting TIRED!! I just found and read a lot of the success stories on this site, and also your reply, and it has boosted me so much. I do believe we will get through this. . . And that it will shape all of our lives. And that we will be stronger and better people for it. I am eternally grateful and thankful for this forum and for the few friends that I have that I can just vent to--without my child seeing!! And to hear from people who have lived through what I am living now, is just sooooo helpful and encouraging!! So, thank you a million times over for taking the time to reply to me!!! It is unfair. But you are right to say that we still have our children! About the time my daughter got diagnosed, another mom I know lost her son to a brain aneuryism. It was devastating, but gave us some perspective.
Thank you again for your reply. I am sorry it took 10 years!! But happy to hear that your daughter is better. And you are passing on hope--some day I will do the same! God bless you!!
Posts: 63 | From north Texas | Registered: Apr 2011
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posted
It is so nice to know there are other Mothers out there that are having the same problems.... My daughter is yet to be diagnosed because she is so dehydrated from being sick to her stomach all the time. Every time I take her for blood work they stick her 15-20 times, can not find a vein, find one and it gives out a few seconds later, that they refuse to do it again. We are bounced from lab, to hospital, to doctor and back again. Nobody will step up and come up with a way to get blood from her.
Yet everyday I wake up up a kid who is crying because her body hurts. Needs a nap after walking a few houses down the street. Lives in the dark 50% of the time because light hurts her eyes. Asks a gazillion times a day for quiet because noise bothers her. Has eyes that twitch close to non stop yet nobody will help her. The school calls daily to remind me she will fail because I don't have a note for the last 5 days she was out etc etc...... I know she is depressed! How could she not? I am depressed and I am not dealing with the pain she complains about day in and day out.....
-------------------- Mom to sick 12 yr old Diagnosed with Bart and Lyme.
Started Zithromax and Bactrim 11/2011 Posts: 16 | From Maryland | Registered: Oct 2011
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
grtpyrlvr...your daughter needs fluids from the doctor...I know that means a IV... my daughter had the same problem...dehydrated many times...I finally got to the point to ask for their very best person to put a IV in right from the start...to use the smaller needle and to warm her arm up FIRST before trying to find a vein.
Following those simple steps made a whole lot of difference.
If her doctor won't give her IV fluids take her to the ER...and then when you see her doctor the NEXT time try and get a standing order for IV fluids.
It will make a difference in how your daughter feels and they can also add some anti-nausea meds to the bag to help settle her stomach for awhile to give her some relief.
Be a little bossy if you have to be...sprinkled with nice.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
I have tried..When she was admitted and only gave them 6 onces of urine in a 24 hr period. I begged for an IV...Their answer?? She can hold down fluids so she needs to drink! We have tried the smallest baby butterfly needle, an ultrasound machine to find the veins, warm hot packs etc etc..All the nurses say "she is too dehydrated". Yet the doctors don't listen. They think she is being difficult because she will not "drink".
-------------------- Mom to sick 12 yr old Diagnosed with Bart and Lyme.
Started Zithromax and Bactrim 11/2011 Posts: 16 | From Maryland | Registered: Oct 2011
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
treehousemom, sue, grtpyrlvr, I am Not a Mother, Nor a Father of a child with lyme, I have a Great imagination and can not picture myself in your shoes... I am so glad many can vent here... please continue to vent..even if you think your Vent is long or goes unanswered.. generally some one responds and gives a supportive outlook for others in need.. I can Pray, and The Lord must hear the sqweekie wheel, with Joy as He is Good and ALL MIGHTY..
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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posted
grtpyrlvr, I am nauseous 24/7, but Popcicles, icees, snow cones, slush puppies or anything like that don't bother my belly. Maybe she could try that, if you haven't already.
treehousemom, what does she take for pain? I take vicodin and it kind of looks like ibuprofen (white caplet), if you think she might not be in as much pain as she is claiming just give her an OTC pain med without telling her.
Kids tend to over rate their pain level, it's just a kid thing. I am in mod to severe pain daily, but I am so used to it that you wouldn't be able to tell by looking at me. When it is unbearable my hubby can see it and knows he can do nothing to help.
Who had the surgery? When I have surgery ( have had 11 since 2001) it seems my pain is worse and lasts longer than it would in a normal person. I don't know why or if it is due to LD.
Kids should never have to suffer like this, it breaks my heart and my thoughts are with you all.
-------------------- Down on her knees, she wept on the floor. This hopeless life, she wanted no more. Dead in the mind and cold to the bone, She opened her eyes and saw she was alone. ~Seether Posts: 427 | From Rhode Island | Registered: May 2011
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Well...the point is that your daughter IS NOT drinking...not whether she can or cannot drink enough...the point she isn't drinking enough to keep her hydrated.
If they think you daughter is being rebellious in NOT drinking...tough crap...the bottom line is she isn't ingesting enough fluids...period. The reason why she is not drinking enough is mute.
You need to call the patient advocate at the facility you take her to and have a talk with that liason.
It is RIDICULOUS that they are withholding fluids...their creed is DO NO HARM.
Otherwise, I would find another facility ASAP...dehydration is no laughing matter.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
AGREE with momindeep!! She needs fluids! Maybe take her to a children's hospital?? Get a lab test through IGenix and find a LLMD. Just my 2 cents--our LLMD had to have my daughter drink salt water and use warm compresses too before getting a vein, but he did not accuse her of not drinking on purpose. Your poor baby--and YOU! WIll pray for wisdom and that you find an empathetic dr who will go the extra mile!! How many times do we hear of people saying that kids are just "faking it" or "it's all in their heads" or they "just want attention'. . . I must admit, it took me awhile to believe my daughter, but when I realized she was not being just a drama queen, it broke my heart for all the times I didn't believe her! You cannot fake only
Posts: 63 | From north Texas | Registered: Apr 2011
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi Treehousemom.
I don't know if it will help your daugher, we went and are going through the controversy with our daugher.
I've found it best to post some videos on the controversy, not sure if it will help you or your daugher but I'll let you be the judge.
This is our Lyme doctor and he's at the heart of the controversy in CT. If you read the article it also sheds light on the controversy and the implicatons to MD's who don't follow IDSA guidelines.
posted
The place that refused the IV's was A.I. Dupont..A Children's hospital in Delaware so go figure...We have another appointment Thursday with another specialist at a Children s hospital. I am so dreading going.....I feel like a Boxer gearing up for a fight! What kills me most is the original infectious disease guy specializes in Lymes so he ordered the western blot, and all the tests for lyme co-infections. I was so excited but without a means to get blood we are stuck!
-------------------- Mom to sick 12 yr old Diagnosed with Bart and Lyme.
Started Zithromax and Bactrim 11/2011 Posts: 16 | From Maryland | Registered: Oct 2011
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posted
I have a son who is 15. He missed 8th grade (his lyme is congenital and he was reinfected on a 7th grade camping trip) entirely. But now, in 10th grade, he is definitely on a slow upward spiral. He goes to bed early, but makes the whole day now. he LOVES his school. He has a girlfriend. He still has lyme, he still treats, he still is in a fair amount of pain, but he really is doing well.
He's been treating since '09 and there were some really dark times. Even though we aren't done with treatment. . . there is light.
tillingmama.wordpress.com
Posts: 564 | From Tick Hell | Registered: Oct 2008
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posted
Thanks everyone, for your comments and support! What a blessing to hear encouragement. We will live through this, she will get better, and we will be stronger more compassionate people through this trial! Love and many blessings to you all!!
Posts: 63 | From north Texas | Registered: Apr 2011
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
Sorry to hear about your troubles. �I too have a daughter with Lyme, but her biggest issue is headaches.
I have Lyme and have had the dehydration problem very recently. �I have found the following to help: -obviously try to drink as much fluids as possible. �I take water with lemon juice and small quantities of Gatorade, and as much water as possible. �Also Kefir, which helps with Probiotics and some hydration.
-I ate veggies and green apples throughout the day and before going to bed. �I have found this to be like �time release capsule that helps for much of the day and VERY helpful through the night.
-I took Lumbrokinase and Woebenzyme to facilitate in blood breakdown of proteins and circulation.
-I started a regimen of Allicin (garlic extract) and raw garlic as well. �Started with low dose and worked my way up.
-I started taking hot baths when I felt cold, as my body temperature had been dropping week in and week out. �I was getting to 69.7 in the mornings and felt horrible.
-Started sleeping with my socks and layering blankets, since I was colder in my lower extremities. �So double cotton blankets from waist down and thinner breathable blanket from waist up. �Check her temp throughout the day and see if you discover any issues with body temp, which may coagulate blood further.
Three weeks ago I felt like the veins in my head were crystallized and that my body was devoid of oxygen. �This made my body ache all over and I felt miserable. �I was losing energy and felt I was going down rapidly. �
My wife is a nurse too and it was tough to convince her that i needed IV. �Three weeks ago i had also asked her to obtain an IV bag so as to diminish my dehydration problem and pain. �It was getting that bad and i knew what the problem was, the hard part is convincing people that you know your body and what it is telling you.�
Since I started this I have been getting better and feel so much more energetic. �My body temp is 83-88 now thankfully and no need for IV bags. �Along the three weeks I also added some additional herbs, which I think might have an impact on eliminating bacteria other than Borrelia Burdorferi. �If you need further details let me know.
I think the blood issue is not BB, Bart or Babs, but another opportunistic set of bacteria. �I have seen videos of others blood smears with this very same set of bacteria and have seen it with my own blood smear (using my own microscope). �The hospitals or labs have not picked up on this. �Instead someone like me, who has no medical experience has dicovered this. �How sad.
The people complaining of the devoid of oxygen, including me, tend to be the sickest. �Resolving circulation issues is of paramount importance in the fight with Lyme.
Posts: 2087 | From NY | Registered: Oct 2011
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posted
"Kids tend to over rate their pain level, it's just a kid thing."
Sorry, but I couldn't disagree with you more. From my experience, kids tend to under-report the truth about their pain levels as they have unfortunately become accustomed to living in a state of chronic pain.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by grtpyrlvr: Lives in the dark 50% of the time because light hurts her eyes. Asks a gazillion times a day for quiet because noise bothers her. Has eyes that twitch close to non stop
Sensitivity to light and sound are symptoms of low magnesium, as are muscle twitches. You can do something to ease her symptoms by supplementing magnesium.
See the nutrition information on this site: Facial and Eye Tics in Children: The Links to Magnesium Deficiency http://www.ctds.info/tics.htmlPosts: 6947 | From Lancaster, PA | Registered: Feb 2004
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Our PCP gives IVs. I became really nauseous and dehydrated when I began tapering klonopin three months ago. So I just called and asked if I could come in and they gave me fluids.
You might call some of the family doctors, internal medicine, etc in your area, tell them your situation and maybe they will help you out.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
My daughter was infected. I've spoken little about her here because there are some bad people out there who read the board (be careful about saying too much about your children).
But, she's 18 now .... so, here it goes. She was bitten by a tick and didn't immediately get diagnosed. I also got bitten again (I had been bitten a lot in the 70's and had lyme that disabled me three times, but at the time I was bitten I was in remission). I got VERY sick and finally got diagnosed.
She was having a lot of trouble in school. She had headaches every day. Her knee hurt, and her elbow hurt. She would get sore feet.
We had her evaluated, she was in 8th grade. She tested borderline positive, so we tried a trial run of abx. She responded well to them.
She went six month on the abx she was responding to, then had no more symptoms. The LLMD switched her to a combo of two different abx for two more months to challenge her remission and she had no symptoms.
She got off abx and did pretty well, but during her periods she would have symptoms. Also if she stayed up to late or didn't eat right it would sneak up again.
When I got back from Germany, I used the Bionic 880 on her and ever since she has been in a solid remission. That was 3 years ago. So, she dealt with it in 8th grade and her freshman year of high school.
It's hard to watch them go through it. They're more resilient than we give them credit for.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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quote:Originally posted by AlanaSuzanne: "Kids tend to over rate their pain level, it's just a kid thing."
Sorry, but I couldn't disagree with you more. From my experience, kids tend to under-report the truth about their pain levels as they have unfortunately become accustomed to living in a state of chronic pain.
I have to agree with this. My daughter thought the pain in her head was normal. It was her baseline.
I was never believed about my pain as a teenager. Ended up, I had fibromyalgia from the Lyme but everyone wrote me off as a whiney teenager.
Some kids do exaggerate, but I don't think most Lyme patient teens do.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
grt, you mention your daughter's eyes being bothered by light. I have found that drinking mangosteen juice stops all my Lyme eye symptoms. It's an anti-inflammatory antioxidant juice that can be found in healthfood stores and online.
If she tries it, go slowly and drink water also, as it can be powerful.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Our 15 year old was finally diagnosed with Lyme after 6 years of being ill.
She has had crippling headaches all this time, two years of full body rashes on and off, muscle and joint pain, especially her knees, incredibly stiff and sore neck and shoulders, vertigo, blackouts, dizziness, and vision issues. She has trouble focusing and recalling things she reads so school is a real struggle. She is often depressed and sometimes she has suicidal thoughts that terrify her( and her father and I).
If anything she UNDER rates her pain levels, she always has. She hates pain meds and won't take them unless she is in dire straits.
Yesterday I had a real struggle and I felt so badly. I got her up to take her meds and start school as we are trying to keep her routine as normal as possible. 3 hours later she was STILL working on biology and I just got so frustrated with her and I felt like the worst mother in the world. If we are lucky she can do science and math on the same day. Looks like 10th grade will take infinitely longer than it should. BUT her health comes first and I have to be the one to know that when she is able to work, she will. I do not have a lazy kid.
She looks fine, great even, which makes it harder to get it through my head sometimes how desperately sick she really is.
She has been on Biaxin with Plaquenil for two months now with no improvement. She is off the Plaquenil as of today because we suspect it is making her depression worse.
Having a teenage girl can be hard. Having a teenager with Lyme can be an unmitigated nightmare.
I've not come here for support yet, only questions. maybe now is the time. It is so isolating sometimes, no one understands. My prayers go out to all of you.
Posts: 21 | From Cape Cod, Ma | Registered: Aug 2011
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posted
I am new to all of this and have a 13 yr old daughter. We (myself, my daughter and my 2 1/2 yr old) are all yet to be diagnosed. Finances are preventing us from seeing an LLMD and testing.
I TOTALLY understand the frustration and worry. Add to that the doctors and people who have NO CLUE how bad this is. PLEASE take time for yourself...if you don't take care of you, nobody else will get taken care of!
On to the addiction part, there is no doubt in my mind that she is in pain. I am in recovery and know about this. After 72 hours, you body becomes psyically dependent on any opiate. DO NOT STOP GIVING THEM TO HER, as this will cause the physical withdrawal symptoms. ALWAYS speak with the doctor before tapering any pain medication, ESPECIALLY if she has Lyme! You can try "piggy backing" medications(with docs advice). This would mean giving her a n acetaminophen based pain pill (ie Vicodin, norco, Percocet, etc...) and then 2 hours later giving her an ibuprofen based med. This really helps!
Warm baths do wonders as well....simple...but they help! Also, look into acupunture, hypnosis, and massage. I was NEVER a person who thought homeopathic measures was an effective method for pain control untill I tried them.
Best of luck Hun....my thoughts and prayers are with you. WE MUST STAND TOGETHER AND FIGHT FOR OUR KIDS!
G
-------------------- Looking for answers and support! Can't wait to get better and SPREAD THE WORD! Posts: 26 | From San Francisco Bay Area | Registered: Oct 2011
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