Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hi, I have been trying to find a lab to do the draw for my seven year old son, called Quest and labcorp, they said they can't do Igenex since it's not on their 'list'.
I'm thinking about just taking him to WI over his spring break to see Dr. H.
His symptoms are: tiredness, always seems sleepy.
Inability to remember words...sometimes when he's talking, he will stop and say, "what was I going to say?"
Seems to be in 'dreamland'...when we talk to him sometimes, it almost seems like he doesn't hear us. We have to repeat it several times.
He has complained of sore feet in the past. Also has run before and stopped and held his chest saying his heart hurts. Pediatrician said he sounds fine.
He has had problems with light colored stools since he was about 2.5.
When he was born, he was the only one of the three in which he did not scream after birth. The midwife had to give him blow-by oxygen and he did cry soon after and seemed to be fine.
He has a lot of irrational fears. For instance, he is in first grade and will not use the restroom. He did once and another boy tried to look at him under the door. We've tried to get him to go, but he 'holds it' all day long until he gets home at 3:45.
He once had a dream about overflowing toliets (and yes, this SOUNDS funny, but was very real to him) when he was 4 and refused to flush toliets for a long time and even now he often won't. When we ask him about it, he looks sheepish and says, "Oh, I forgot."
The thing is, academically, he is doing fantastic in school. He reads a Junie B Jones book every day after school (he doesn't have many left to read). His teacher has told us he is a really good reader for his age and his math skills are very very good.
Do any of these sound like congenital Lyme to you?? I had gotten Lyme (undiagnosed) 4 years before I got pregnant with him, and while I was better, I certainly wasn't 'well' either.
If you'd like to PM, I understand that. I would really appreciate all responses as I know my extended family will think I am crazy to drive 9 hours one way to see a doctor when we don't know if he even has Lyme.
I forgot to add that we have 2 other children and so far they don't seem to have symptoms. The middle one has had some definite rage issues, so it's possible she could have it, but she's got LOTS of energy, but doesn't seem ADD, she concentrates very well, can play well with others, ect.
Geneal has a great list of lyme symptoms in kids, including congenital. If you use the search feature, you should be able to find it.
I don't have time right now, but when I get a chance, I'll pm you re: our experiences with a lymie kid. I'm sure others will come along soon with responses, but my first thoughts are bart and babs with the sxs that you described.
Take care, I'll get back to you when I can, probably tomorrow. Or, check my response to the lyme or OCD thread over in medical, it covers some of my son's lyme symptoms.
kp
ps, my son won't use the potty at school either, at least not for bm's, for the exact same reason. Some other kid walked in on him, and thought it was funny to stand there and watch. Haven't figured out yet how to help him get over this!!
Posts: 394 | From tinton falls nj | Registered: Jul 2007
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posted
My daughter's main symptoms are OCD and a constant headache. She does have ADD-like symptoms but is not dx'ed with that. She also had muscle twitching and complained of not sleeping well.
LabCorp drew the blood for my daughter's IGeneX test and gave it to me to take back to the doctor. Another lab did this for me, but I had to mail it.
I don't know about congenital Lyme since my daughter got it later but I would take him to the LLMD to get an expert's opinion.
Posts: 984 | From US | Registered: Dec 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Hi.
Some Lyme symptoms in children are subjective....
Such as red pinnas of the ears, developmental delays, etc.
My son has those and more.
Some are more objective such as joint pain, headaches, stomach aches, etc.
My daughter has these. She is 7 also.
Both of my babies have congenital Lyme.
My daughter does very well in school.
Straight E's for excellent, is in an Accelerated Reading program, etc.
My son struggles.
So....good grades unfortunately do not negate the possibility of lyme.
You can go to your local walk in clinic.
Get the blood drawn.
Send the test off yourself. Ask your son's pediatrician.
I knew in my heart of hearts before getting my children tested
That they had Lyme. I was hoping and praying they didn't....but I knew.
They are both responding well to treatment.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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bettyg
Unregistered
posted
someone mentioned MDL labs in NJ!! good luck!
posted
Ocean, you are not overreacting. Have your children tested.
I have 3 with what I believe, b/c there is no way at this point to prove it, is congenital lyme and coinfections.
I would make an appt to see the llmd.
All 3 of mine are different in their symptoms. The oldest went the longest w/out the correct dx. She is very smart, studying biology in college and doing really well. In grade school could not concentrate, and dx with ADD. Second child was just always very sleepy, and then when puberty hit she had chronic fatigue, vision problems and numbness. Third child had pain. A lot of it.All tested pos, all tx, all doing fantastic now.
Go with your instincts. I have been able to pick up on the subtle symptoms after my dx and I started tx. "It takes one to know one" seems to apply here. Your children have the advantage that you know about TBDs. Again, you are not overreacting.
I am not dx your children, just suggesting that there is no harm done in contacting the expert. The alternative is to do nothing, and you know where that will lead.
My best wishes for you and your family.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
Just a note: Someone once asked, after hearing that our entire family is infected, "How can this happen, itsn't this odd"?
Well we know that it is not odd. The advantage that we have is that we are educated about these diseases. If I was not an infected Mom, I would not have had my children tested for TBDs.
Where would they be now? My guess is the oldest would be ADD dx still and not pursueing a degree in science. My second, whose symptoms were like mine in my 20's, most likely would have ended up with a MS dx. My baby, they wanted her on migraine meds. They also thought that she had arthritis and fibromyalgia.
They all would have been misdx with other chronic illnesses I am sure. Like many of us here.
Just my opinion.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Thank you all for your responses!
I made an appointment for our oldest for April 7 with Dr. H.
I actually have the Igenex lab kit. My uncle is a DC and he ordered the test. I cannot find anyone to draw it.
I was going to draw it with a Butterfly needle, but saw that the blood needs to be separated with the centrofuge thingies. I'm an RN, so I can do it.
In CA when I had the Igenex drawn, the labs there said that they would have to send it, they are not legally allowed to give you your blood back.
I am going to call the local hospital today to see if they will do it. Otherwise, we'll just have to wait until April.
Someone mentioned OCD. Yes, he is very OCD. Has been displaying symptoms since he was one! My parents can vouch for that, as he did a peculiar thing there once with picking up a toy, getting into grandpa's lap. Getting down, putting the toy down, picking it back up getting into lap again.
This went on for about 5 mins and he did not appear to be having fun, he looked serious.
Now, he is obsessed with germs, washing his hands, ect. He definitely has issues with OCD.
NJlymemom, yes, I do not want him to go through his life with Lyme. I've read that kids often heal faster than adults with Lyme, so am hopeful that he will be better before me, anyhow.
I guess it's difficult because I have done a lot of research about lyme and my parents having. I think they think we are crazy! My husband is 100% on board, which is nice. I told my mom yesterday that we were going to WI and she said, "well, can't you get him tested first to see if he even has it?"
Thing is, after reading your reponses, I am almost sure that he does.
Then, someone here mentioned joint pain. Our 5 year old daughter used to complain about her knees a lot last year. I figured it was growing pains, then when I found out I had Lyme, I thought, 'oh no!'
I was the most symptomatic with her pregnancy. Extreme panic nearly the whole pregnancy. When I was in labor with her, instead of worrying about the pain, I could only think of having a panic attack in labor or dying in labor. It was awful. As a result I did not connect with her in the same way as I did our first child either.
So I think probably all of them may have Lyme. This disease is just the worst. Of course with no one comprehending the true nature of it, it just makes it worse.
Thank you all. I found a really great hotel to stay at with water slides, ect, so the kids are excited about going now.
I went to my local hospital and took my doctor's order with my Igenex kit. They drew my husband and my five year old daughter.
You are not crazy, I would go to the moon to get my child tested. I cried to my daughter's pediatrician who said she would be retarded if I gave her Lyme.........
We pray that your son does not have Lyme, but he is very lucky if he does have Lyme and you cared enough to have him tested.
Luck to you and your son.
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hey Need Lots of Help!
I think you were reading my mind, yesterday I finally got a hold of the local hospital. I was sure they wouldn't do the draw if Labcorp and Quest wouldn't.
They had to put me on hold several times, but they said they will do it and they are giving the blood back to us so we get to ship it!!
So I get to KNOW for sure that it will be sent on Monday!!!
In CA, when I had my blood drawn for Igenex, they said they couldn't give me the blood back. Charged me $50 for Pleb fee and for the 'handling' part. I'm hoping this will end up cheaper too. Maybe insurance will even cover the draw.
Thank you for your kind words. Did your daughter and husband test positive for Lyme too?
posted
I had the same exact problem when trying to test my boys a few weeks ago. I went to the local Children's hospital thinking it would be the best place since they both have sensory problems and need extra TLC when drawing blood. Well the refused me for the same reason you said.
Then I called Igenex right in front of them. The lady at Igenex said that it is not illegal for them to draw it and give it back to me so that I can mail it myself. That is how I did my test. So I told them that and they still refused to do it. Saying that they can do the same test (which isn't true). So it all came down to money!! They weren't making the money off the test so they didn't want to do the draw.
I was sooo mad!! So we did find a lab. The same one that did mine. But they weren't so kind with the kids and one almost fainted and the other cried. It was crazy but we got it done and I took it straight to fedex myself.
The tests came back positive. Weak positive but they have it.
I was just like you in wondering if they had it. My youngest is most symptomatic and my older son just had some vague symptoms. My oldest daughter hasn't been tested yet but I think she has it also.
See my mom has it and so do I and we both found out recently. So I may have been born with it and then my kids. Its crazy!
But trust your motherly instincts and test them all if you suspect it!!
I can email you a list of what symptoms mine had. I actually went through their past health issues and listed those too. Some that you wouldn't think were from lyme probably were.
Anyways, please keep us posted!!
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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My daughter got lyme about 2 years ago. She was diagnosed as having Central Nervous System Lyme. She is almost 8 years old now.
I hope you have been able to find someone to do the blood draw for you. I think our local lab, Quest, did it for us. My daughter's symptoms were, physical: headaches, exhaustion, inability to fall asleep, pain in legs and feet (check on Bartonella,and Babesia); Emotional/Psychologial: rage, hitting, bitting, irrational behaviors, acute fears etc. Cognitive: memory loss, confusion, loss of concentration, inability to read what she previously could read, Eyes: Limited field of vision causing tracking problems (this is our newest discovery.)
Her treatment has been: 6 months oral antibiotics, 5 1/2 months IV Rocephin and Azithromycin (shunt removed due to bacterial blood infection), Mepron, Rifamphin, Cultural (for stomach). She started meds. 12/07 and we hope to have her off everything 8/09. She probably had LD since at least 5/07.
Do the best testing you can find, don't worry if people think you are crazy as waiting to treat lyme and co-infections can be devastating. Do all you can do as soon as you can. If you stop meds. and see symptoms returning get back on meds. Make sure you are with the right doctor that will look into co-infections and treat your child for a long enough time.
I wish you all the best with your children.
-------------------- Ansel Posts: 10 | From Connecticut | Registered: Mar 2008
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