map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
My goodness, I'm am so frightened. Even though I've been scared since the first week of June that my grandson could possibly have lyme & company.
Monday after my daughter was called to meeting with his 1st grade teacher, I am beside myself. The school & teacher are extremely worried that my grandson has ADHD.
I have many notes on him since he came down with strep throat(?). 12 days of amoxicillian. I pulled a deer tick/nymph off him couple of days later. Actually, I went to get the tweezers when I seen it on his neck. He scratched at it while I went in the house. When I came out to him and touched tick with tweezers it fell to the stone pebbled patio. Gone. Like looking for a piece of sand in the desert.
I watched him the majority of days this summer. Swollen glands the size of golf balls, flu-like illness off and on all summer, lathargic, weird stomach pains, fevers coming and going. The list goes on and on.
Now with Dr Jones ??????....I will and would travel or pay for my grandson to go to the best pediatric doctor. I hope I don't have to meet this man that so many talk so highly of.
But if I must, I must. But first I must get my daughter (who I'm barely having a relationship with for the last several months) and my grandsons father (my daughter divorced him recently). I am proud to still call him my son-in-law, but he too needs to understand that Nana (that's me)is not crazy to think it's possible my grandson has been as unfortunate as his grandmother.
Oh God, please help with prayers. I printed off copies of the ABC's of Lyme Disease. This is pediatric information for parents, teachers and doctors about children and lyme & company. All parties involved will be hearing and reading this and realizing the real possibilities.
I've worried about Dr Jones and I've been sympathic to all parents and children of his for months. All I can do to help Dr Jones now is donate to his legal fund.
Pam
I realize I probably shouldn't of interrupted the Dr Jones thread with my story on grandson, but I was so emotional after reading all this horrible stupidity that was said at his hearing.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Up, for mothers and grandmothers of young children and lyme & company. I've read and printed off some posts in searching on lymenet the last few days.
I know what I'm up against in fighting for testing and dx in Louisville, Ky. I had him to his peditricians office twice this summer. Ten days prior to school, I took him back for another strep test because of long list of sx that kept popping up.
Doc said he might have mono but testing in younger children was sometimes not covered by insurance due to him being only 6 and this test might be considered unnecessary???? I believed the pedi?
He said even if he does have mono, there's not meds for him, only rest. Duh? I watched and listened to my grandson's sx long enough. ADHD from teacher has got me very vocal.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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bettyg
Unregistered
posted
pam, i'm so sorry to read this story of your grandson too! plus your family sitation is so awkward as well.
glad you are looking out for the BEST INTERESTS OF YOUR GRANDSON! don't worry you put comment in the dr. jones thread; you are distraught, and needed to release tension.
you started your post here! best wishes, and don't beat yourself up ok!
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I am so sorry you are going through this.
I know how you feel, except it was my own children.
I had them both tested via Igenex and they both had Lyme specific bands.
They are both being treated and are doing better.
If nothing else, pay for the Igenex testing if this helps get the test done.
Tell your daughter and son-n-law that it can't hurt him to be tested, (other than the stick)
And that this may be the most important test of his young life (to date).
You can get some numbing cream to put on his arm about an hour before the blood test.
I did that for my two and they didn't feel a thing.
I should also add that with a known tick bite and the multitude of symptoms
Your grandson is showing, I would definitely get an appt with a LLMD.
Hang in there. Take a deep breath. You are doing the right thing.
My children are 4 and 6 now and I am hoping for a cure.
They were 3 and 5 at time of diagnosis.
Sending you and your family positive thoughts and prayers.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
God Bless you all for your words of encouragement. The day after Christmas this grandmother is going into action.
Geneal, thank you so much for the advice and tips. I will be on the phone with Igenex on Wed. and that was already step #1. But you know I might have issues at his pedi doc with doing that test?????
Advice on getting him to do Igenex? I have already decided that I will have a 5 minute consult with this pedi before my grandson is seen in the room. This pedi will know this woman has lived, breathed it for over 7 yrs.
I plan to be firm, but kind. My son-in-law will be with me, I'm sure. My name is on pedi list for allowing this child to get care in my presence.
My daughter is bi-polar. This has all hit the fan in the last year. I hadn't had any problems with her since she was 20 yrs old. I thought the problems were typical teen age stuff years ago. Other than my heart always told me she wasn't normal. She's 28.
A year ago someone told me you do realize your daughter is bi-polar and this behavior she has again started betraying is a manic episode? I almost feel to the floor.
Betty, thank you and I will not beat myself up. I just pray for help with her. Yes, I've wondered if my daughter is also suffering from lyme & company. But she displays nothing else that I know of except the bi-polar sx. So, I really don't think so.
Merry Christmas to all, Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
MONO? Is this dr kidding?? Which symptoms point to that??
I'm SOOO sorry to hear this, Pam!!! Stay calm so the pedi won't think you're nuts. Go armed with info!
I think I have some info on ADHD/Lyme somewhere.
Hugs, my dear friend!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Tell the pedi you want your grandchild tested for Lyme disease through Igenex.
Tell them that you will pay for them to draw the blood and the test results
Will be sent to them. Of course Insist they call you and fax the results to you
As soon as they come in (2-3 weeks). I am sure they won't know how to interpret them.
Tell the pedi the child has a known tick bite and as Lyme is in your area,
You want to rule Lyme out. They usually fall for the rule out stuff.
My pedi agreed to draw the blood for Igenex (I later had my RN neighbor do it),
But when given the results all she could see was CDC Negative.
Not the numerous Lyme specific bands.
Waste of my time and energy at that point.
Now you have a plan. Try to enjoy your Christmas with your family.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
June 11th, he's had sore throat, fever and I notice when his Dad drops him off, that his lymph nodes in his neck are huge. One side is as big as a golf ball. The other side is not quite as big.
He had a full body rash 7 days before and my daughter had called the doc on call. She described his rash as sand paper feeling and until he took his shirt off and laid on floor, she didn't notice it.
I'm mad when I see his lymph nodes and call pedi and have him there within 2 hrs. For days he had complained of this and that.
August 2nd, I'm back at the pedi office with a list on paper of things that have happened off and on all for all those weeks. Thinking strep and 11 days of abx had just sent the strep into another body organ and all this:
positive strep 7 weeks prior
lathargic- some days (totally out of character for very active 6 yrs old)
complaints of trouble sleeping at night
complaints of bloating in stomach
aches and pains moving from his foot, hand, hip???
dizzy off and on
food makes his belly hurt more-doesn't want to eat
says he feels feverish off and on-but no fever in last 7 days
sleeps alot-falls back asleep when Dad drops him off at 6:30 on couch and then says after lunch he needs a nap. Totally out of character
Told me one day, my legs didn't work last night and I couldn't walk.
I just keep telling myself there's no way it could be lyme. No way. It's still strep bacteria or mono. After being strep positive and his glands slowly but surely went down. Pedi even had him back after 3 weeks to feel nodes and they were still not completely gone. He said when they were as big as his that sometimes it takes a long time for them to return to normal
I asked pedi could he have mono? (after I told him all his coming and going complaints), that's when I got the mono excuse in above post.
School started Aug 7th and this child had to catch bus at 6:15 am. They live in surrounding country county to Louisville. I would be at house to see him off school bus at 3:15 and watch him till Dad got home at 4.
That's why I've been so involved. There's already one younger brother in day care, they couldn't afford another in day care during summer & after school.
One month ago, walking up the pretty long gravel driveway he told me his knees hurt him all day long today. I asked him if he fell on his knees at recess. No, they just hurt me so bad. I said show me where and he touched both knees.
He knows that I don't work because I'm sick from tick bite, but I don't say anything around my two grandchildren about my aches & pains. I don't want them to know the details. To young.
I sat down the other night and made a list of everything I could recall that he's complained about since school started. Things he said that made my radar go up. Anyone like myself whose radar goes up when you hear someone complain of something you've experienced with this illness.
This lists screams at me. Thanks for thoughts and concerns. Geneal, thank you.
Pam
ps: four months later and I'm still carrying this list that I took to the pedi office in my purse size calendar. I must know it's important for some reason.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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pam, i'm so sorry to read this story of your grandson too! plus your family sitation is so awkward as well.![[Smile]](smile.gif)
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