posted
-------------------------------------------------------------------------------- I have been diagnosed with Lyme in June and had a very tough time. Nearly lost my vision, lost function of my right arm and my legs.
I was on IV antibiotics for 6 months and improved imensely! I am now back to work and functioning much better. Then I found out my husband has lyme also and just about a month ago our two boys have been diagnosed with lyme.
One is 3 and the other is 2. I need some advice, my little ones are getting so sick. The kids peditrician was working with my lyme literate doctor to treat them. Dr. C "WONDERFUL LYME LITERATE DOCTOR"
ITs just not working out we are going to take the boys to see Dr. C but he is booked all the way till Jan. Insurance company says they will not cover for my two boys so I May have to stay with there peditrician and have DR. C work with the kid peditrican.
My little boy is having problem with his eyes, he crys and points to his eyes. He is also having trouble walking he complains his feet hurt. I lay him down to change his diaper and he crys and holds his head!
The boys were both started on Ceftin and My 3 yr old is still on that and my youngest one with all the problems switched to zithromax.
I am so scared for my babies. It is so hard to know what they are feeling. I pray my two year old isnt having the eye problems I had. I just dont know.
We are doing antibotic Eye drops every 3 hours. This doctor doesnt have them on any nystatin or taking acidophillus and I dont even know if they have kids take that.
But My youngest boy is so sick, he cant sleep he us up all through out the night then during the day he sleeps. My boys are bright and I dont want anything to stop that. I am worried with my youngest if it is in the Central nervous system like I had.
And my question is should he be started on IV to treat this? In the past two weeks I have seen a Big change in him. Cant sleep, wont eat, cries in pain askes to go into the bath tub constantly.
I think the warm water helps the pain. I feel like I dont know what I am doing. I know what I went throught But I have to be the judge of whats going on with them and they cant tell me what excactly hurts.
And I dont know how long they have been dealing with this so some things may just feel normal to them. I dont know when to hold the medicine if they are herxing or not.. and there peditrician is working with my lyme doctor but she just doesnt understand things when I talk about herxing. She thinks I should just keep giving them the antibiotics.
My boys are her first lyme patients. We are taking my youngest boy to a neuro opthamologist to get his eyes checked out. He screams and cries if he is outside without sunglasses.
I guess I am just posting this because if anyone has had young ones and gone through this please I need advice and if anyone has any input please let me know!
This week has been scary and I worry about there future. I want to treat this and move on! I want no damage for my babies! I am so scared my 2 year old is going to have the problems I had.
With having trouble walking and his eyes hurting him.. And I sit back and worry if his head hurts so bad from swelling or is it just his eyes.....
The worries are endless.. So any advice send my way PLEASE!
Plus to add more to the problems our insurance company is fighting us tooth and nail. They accepted my lyme literate doctor and has been paying 100%
And now they are saying that they are not going to cover anyone elsein the household to see this lyme literate doctor.
They said I fell through the cracks and that is the only reason they have been covering. Thats not right to cover me and I have a letter stating they will cover me and then just drop the rest of my family.
So I am fighting that as well.. Anyways, thanks for reading this and remember if you have any advice.. send my way.. Thanks
ANY ADVICE PLEASE SEND IT MY WAY!! I feel So lost with treating my children. Like I said the currently are NOT on any Yeast Precautions or acidophillus..
I know that is a concern when you are on long term antibiotics.
Has anyone here took there children to See Dr. C in springield MO.. Let me know.. My husband and I are VERY pleased with him... is he pretty good with children as well ?
Sorry this is so long but I felt as if I needed to get my story out. Thank You again!
Posts: 61 | From ILLINOIS | Registered: Nov 2005
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I'm so sorry you are going through this. And as a mom myself, my heart, prayers and hugs go to your little ones in finding the right answers and help quickly...and to you and your husband for the strength, support and wisdom as you find your way through it all.
Lymex5 has suggested many good ideas for help, and it sounds like a wise voice of experience for you to draw upon. I've heard so many good reports on Dr. J for treating children with lyme...and I'm sure many more people will be here shortly to offer you their own perspectives on his treatment and care.
I'm sorry I don't have any personal experience to suggest for helping your kids (other than there are many great Probiotics made just for kids...which I'm sure would be safe for you to use. Do you have any health food stores or Natural food stores nearby to call?).
You mentioned that you have an appointment with Dr. C in January. Is this Dr. C in MO ? If so, I also have heard/read many great reports/posts on him and made an appointment with him at his next available time, which wasn't until mid-December. From all the good things I've been hearing, he is indeed worth the wait.
If this is the same Dr C you're mentioning, I would be happy to let you have my appointment slot for next month for your boys if you'd like. I wish it was earlier so you could get in NOW...but it would at least bump you in a few weeks sooner. If interested, just let me know.
JavaBeing
Posts: 208 | From Portland, OR USA | Registered: Oct 2004
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posted
I'm really sorry your children are having such a rough time! Most children are very resilient, so you have a very good chance they will recover nicely once they get on the right abx.
I know several people who have taken their children to Dr C. He is my LLMD as well. Why don't you go ahead and make an appointment for them, and figure out the money angle later. You have at least 2 mo to figure that part out.
[you can always cancel the appointment]
Will your insurance pay PART of the dr's charges? I would really push them on it. It's unethical to say the least!
I would definitely make sure your kids get the acidophilus!!!! You don't need additional problems from the yeast, which they are sure to get if they don't take the acidophilus.
I wish I could do more for you. Hopefully, others with children will be along soon!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
I am so sorry to hear about your whole family having problems. Especially the children. Hopefully, if they start treatment soon, it will go away all that sooner.
I would call your state's insurance commission to see if what your insurance company is doing something illegal.
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
posted
Thank You so Much for all of the input! This is GREAT! I never imagined I could get this much information in a couple of hours.
So they have acidophillis for children? I guess I can just call and ask if they have some I can give for children. Now they do recommend to take acidophillis by itself right? Not with antibiotic or nystatin. Should children be on nystatin?
Java Being that was a really nice offer, but you need to meet with him he is a great doctor. Atleast right now he is working with my childrens peditrican. And I have been seeing him since May.
I went from almost losing my vision, and lost use of my right arm and couldnt walk and he has made me BETTER! Complete turn around.
I guess my big question is should I just stick with Dr.C in springfield MO for my kids or should I check into the CT doctor? Which I am not sure who that is and what his full name is?
I know what the insurance company is doing is not right. I know all lyme doctors are out of network but back in May I appealled the insurance company they allowed me to see Dr.C as if he was in network.
Then when my husband and two boys were diagnosed they have been playing games. They are still standing there ground on not covering for my husband and my kids. Its sad!
Its funny, I first was diagnosed with MS and the insurance company pays 100% of that. And I just kept getting worse. They dont know what causes MS they dont have a cure for MS..
Here we know what causes LYME and we know what CURES lyme and we fight the insurance company for treatment. Something isnt right here.
Thanks Everyone..
Posts: 61 | From ILLINOIS | Registered: Nov 2005
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quote:Originally posted by BBWagoner: Here we know what causes LYME and we know what CURES lyme and we fight the insurance company for treatment. Something isnt right here.
Makes absolutely no sense, does it?
I would do as "gramma" said...call the insurance commission. You can also appeal ... again.
Dr C can take care of the kids if you want him to.
A great site for supplements is www.vitacost.com [I need to buy stock in that company!! ]
They have all kinds of acidophilus. I don't know about Nystatin for kids. I think it's very safe, but I don't know for sure about kids.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
I responded to the same info in General Support before I saw this. Don't know how to copy the info here, so I hope you'll read what I posted.
Acidophilus - You're right about not taking abx & acidoph together. Be sure to have at least 2 hours between antibiotics & acidophilus (before & after) or the antibiotics will kill the acidoph before it has a chance to help.
I always plan mine so the acidophilus is 2 hours after the last dose of abx each evening. That gives it all night to work before hitting it with more abx in the morning.
I hope you're making sure you get enough acidophilus, too.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
My heart goes out to you. It is sso difficult to see children in such pain. My sister, her husband and their 3 children have lyme too. Children ages, 6, 4, and 2got it congentinal also. They all just found out within the last 4 months.
The children have similar problems, but much milder than yours. Oh, how I pray yours will feel better soon.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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lyme_suz
Unregistered
posted
BB-
Wow. I am so sorry to hear that your kids are so sick. My two have had lyme for 5yrs. Been treated for about a year. I have it too, we all got bit together. Like you, I have improved tremendously. Which is bittersweet with kids progressing more slowly.
Just wanted to encourage you that my kids have improved a lot with the antibiotics. They were so sick they were on the couch or in bed all day. They went for a time where they would hardly even talk during a day. I was so happy when they had energy to joke. Now I end up telling them to settle down and stop making so much noise. They are very good friends having been together so much and going through so much.
You are doing well to have them on antibiotics. Some of their symptoms could be a herximer reaction from the lyme getting killed.
And you are choosing between excellant doctors.
The up at night was very hard on kids and me. Benadryl was a life saver.
posted
Sorry to hear you and your family are sick and having to deal with this. I have Lyme as well as my 3 year old and my 20 mos old. My husband is being tested.
I to, recommend Dr. Jones.
I give my kids primadolphilus (sp), you can get it at a drug store or health food store and there are other brands. Make sure they keep it in the coolers in the store and keep it in the fridge at home.
I feel for you because it's so hard when they are so little and can't tell you what's wrong. My three year old can but the 20 mos old can't and I'm constantly worrying. It breaks my heart when they are sick.
I worry about the same things as you and some days are better than others. I guess I try to focus on the here and now and get done what I can. Right now I'm fighting the insurance company as well for appts to see Dr. Jones.
Hang in there the best you can. This is a great place, there are many moms and others who are so helpful!
Posts: 441 | From USA | Registered: Jul 2004
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