13 yr old son tick in back-no spleen (freaking out)

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kimmy2
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 1/5/2009 3:55 PM (GMT -7)   
I am a regular on the Crohn's site and saw this Lyme site here.  Today, my 13 year old son had a tick in his back that had to be there since he was building a fort in the woods yesterday.  We removed the whole tick, but he already has a round red spot the size of a dime around the burrowed site.  This June he was in a near fatal boating accident and had to have his spleen removed.  We were warned about his body's inability to fight off serious infections, so I'm really concerned!  I don't know anything about Lyme Disease and didn't know if anyone here had gotten it without having a spleen.  I called his pediatrician, and they just said to watch for rashes, fever, headache, and lethargy.  Is there anything else ya'll could suggest I watch for?  I may be overreacting, but we almost lost him 6 months ago.  Any information would be greatly appreciated!
 
kimmy confused
diagnosed CD '03 after suffering for 10 yrs.
 
re-section surgery '05, Chronic Pancreas problems, joint and muscle issues (from Remicade)
 
meds been on-Asacol, Pentasa, Lialda, Remicade, Humira, 6-MP, Methotrexate, Rowasa, Prednisone, too many pain meds to list
 
Currently on-Cimzia, Cymbalta, Reglan, Pamine Forte, Methotrexate, Folic Acid, Probiotics, Phenergan, and Klonopin(RLS)


Jendays247
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Date Joined Jul 2006
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   Posted 1/5/2009 4:33 PM (GMT -7)   
This is BY NO MEANS a professional response, but if I were in your case, I'd find an LLMD immediately, explain the exact condition and circumstances, and see if you can get a 30 day course of Doxycycline JUST IN CASE.

See what everyone else has to say...I'm totally paranoid about everything, so again, this is just what I would do.
http://profile.myspace.com/index.cfm?fuseaction=user.viewprofile&friendid=399827188


bcaring
Regular Member


Date Joined Feb 2006
Total Posts : 346
   Posted 1/5/2009 6:40 PM (GMT -7)   
I don't mean to scare you but it is not worth the risk of him becoming infected with a potentially very serious disease. The doctors office response is almost irresponsible. It is a FACT that some patients never display a bulls eye rash. It is a FACT that ticks can transmit other infections, such as babesia which is very serious in people who do not have spleens. In my opinion, he should be given antibiotics to rule out any possibility of infection.

I don't know where you live to give you guidance on who to see. I hope others on the forum respond as strongly.

Deejavu
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Date Joined Aug 2005
Total Posts : 4306
   Posted 1/5/2009 8:19 PM (GMT -7)   
Hi Kimmy,
 
I am so sorry to hear about your son, this tick and his spleen from the accident.  If this is the first time he has been exposed to ticks or vectors carrying lyme bacteria's then you may be lucky and get any doctor to put him on antibiotics right away. 
 
What you could do right now which I feel is very important is to photograph the rash using a ruler or coin next to the rash and keep on taking pictures of the rash as it changes, you may need it later on for documentation (just to be on the safe side).
 
The next thing you need to do is contact IgeneX Labs for testing.  They are the most accurate lab we have in the U.S.   You can e-mail or call them.  Their website is:
 
 
Below I cut and paste our expert named Ticker's post to newbies:

Many people who have Lyme were first diagnosed with other illnesses including Fibromyalgia, CFS, MS, ALS, and Lupus.  Below is a Lyme symptom list.  You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

When Lyme disease is a possibility, it is very important to see a knowledgeable doctor.  Many doctors do not understand Lyme and under treat.  Besides Lyme ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma.  It is estimated that 60% of people who have Lyme are co-infected.  It may affect treatment choice and progress.  It is important to be tested by a Lyme lab such as IgeneX in Palo Alto, CA. If you would like a doctor recommendation, you can email me at ko_@bellsouth.net

It is also important to learn as much as possible.  I recommend reading "Everything You Need To Know about Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner and Dr. Joseph Burrascano's treatment guidelines at http://www.ilads.org/burrascano_0905.html  He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols.

I don't know if Ticker is available to read e-mails.  If you can tell us where you are located, perhaps one of us could recommend a LLMD (lyme literate medical doctor) for your son.   

Please try and stay calm, yes, easier said than done.   Many people are in remission from lyme including myself and have stayed well for years.   I know children who have been well for years as well.

I hope this helps, Denise


It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing
 
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:
 
 


kimmy2
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 1/5/2009 8:47 PM (GMT -7)   
We live in The panhandle of Florida. We have Sacred Heart Children's Hospital here and also a Nemours Clinic. They were both invaluable in treating my son in June. I'm not sure about a LLMD doctor, I don't really know what that is. I plan on starting with the pediatrician again and if he doesn't want to listen, I'll try the Children's Hospital. I got fairly close to the PICU team while he was there and I may go see them for suggestions. Thank you all for your help. I know I may be overreacting, but it wasn't that long ago we were in Life Flight not sure if he was going to make it. He is my youngest and still my baby. I hope all this worry is for naught, but I appreciate all your input!!

kimmy
diagnosed CD '03 after suffering for 10 yrs.
 
re-section surgery '05, Chronic Pancreas problems, joint and muscle issues (from Remicade)
 
meds been on-Asacol, Pentasa, Lialda, Remicade, Humira, 6-MP, Methotrexate, Rowasa, Prednisone, too many pain meds to list
 
Currently on-Cimzia, Cymbalta, Reglan, Pamine Forte, Methotrexate, Folic Acid, Probiotics, Phenergan, and Klonopin(RLS)


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4306
   Posted 1/5/2009 9:05 PM (GMT -7)   
Hi Kimmy,
 
I believe we have at least 2 members here who see a Lyme Literate Medical Doctor in Florida, don't know exactly where.
 
If you can, please take photographs of your son's rash.  That is proof enough that he has been exposed to lyme disease.   Below is a website of lyme rashes:
 
 
If you believe you son's immune system is not strong after what he has been through, then I suggest using alternative (natural) medicine.  That is what I used and that's how I became better. 
 
Can you give your son a bath tonight mixed with Epsom Salts using warm water (not hot) to start drawing out the toxins?
 
I am a strong believer in heavy detoxing as that also builds up the immune system.
 
Stay in touch and let us know what happens, okay?  There are many wise people here on this forum.
 
Hugs,
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing
 
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:
 
 


judy3
Veteran Member


Date Joined Nov 2006
Total Posts : 667
   Posted 1/6/2009 7:13 AM (GMT -7)   

HI Kimmy,

It is a very scary situation but please remember we over here are suffering from LD for many years, some of us were not diagnosed for years and we go crazy when we hear someone had a tick, but it may be an uninfected tick, to play it safe request at least 30 days of doxy or amoxy from your pediatrician, tell  him your a nervous mother and would greatly appreciate it or tell him whatever just try to get the meds, please remember it may take a while to get to an LLMD, as long as you get him started on treatment he should be fine


Clear-sky
New Member


Date Joined Feb 2010
Total Posts : 6
   Posted 3/6/2010 5:33 AM (GMT -7)   
I have this friend that works with me and he is having some issues lately. He is feeling extremely fatigue and he is having fever from time to time. His doctor told him that he might also have enlarged spleen. I was wondering can all these symptoms be related to enlarged spleen? I am wondering is it able for him to live without spleen? Please give me some info. Thank you.

GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 3/6/2010 8:03 AM (GMT -7)   
I believe that you really need to get your son to a LLMD as soon as possible. Most doctors, as good as they may be in their specialities, no next to nothing about Lyme disease. This disease, if treated immediately, will save your son years of misery and suffering.

I'm sending you a link to a website where you can get names of LLMD's in your area. Your son's pediatrician (unless he's lyme literate) will most likely downplay the significance of the tick bite. Even the Children's Hospital will most likely downplay the significance of the tick bite unless they too have experience with this.

Please, do not under any circumstances take the word of anyone except a Lyme Literate Doctor. Time is of the essence. The sooner you have your son seen and diagnosed, the better his chances are to get better. This disease is hard enough for an adult to handle, it's much more difficult for a child.

Read this article about a child who had lyme disease and recovered from it:

http://www.cleveland.com/healthfit/index.ssf/2010/03/youth_recovering_from_lyme_dis.html

Gary

GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 3/6/2010 8:35 AM (GMT -7)   
By the way, what deejavu said is very important. Her suggestion of having your son take an epson salt bath is excellent. Also, since your son doesn't have a spleen, what deejavu said about natural treatment is important.

After you get your son's diagnosis, if it turns out he needs treatment feel free to contact deejavu and myself to ask us about natural treatments that are available if you're interested in knowing more about it.

Please keep us updated on your son. We will be very anxious to hear what the outcome is.

Praying for you and your family.

Gary

merrygirl
Veteran Member


Date Joined Jun 2007
Total Posts : 702
   Posted 3/6/2010 1:14 PM (GMT -7)   
 You are right about the lack of a spleen being a problem.. My dog has no spleen and he told me to never ever let her get lyme disease because it would be life threatening.


please do not wait to get antibiotics. "If you have to go to the ER and wait 10 hours to be seen, get your kiddo on doxy or amoxicillin asap. then find a llmd.

best of luck, PLEASE do not wait on this.

melissa

Post Edited By Moderator (1bitten2xshy) : 3/6/2010 6:23:58 PM (GMT-7)


GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 3/6/2010 1:36 PM (GMT -7)   
merrygirl said...
why wait till he gets sick? that is the dumbest response i have ever heard. You are right about the lack of a spleen being a problem.. My dog has no spleen and he told me to never ever let her get lyme disease because it would be life threatening.


please do not wait to get antibiotics. "If you have to go to the ER and wait 10 hours to be seen, get your kiddo on doxy or amoxicillin asap. then find a llmd.

best of luck, PLEASE do not wait on this.

melissa


You're exactly right!

Gary

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 3/6/2010 5:41 PM (GMT -7)   
Kimmy,

You've got excellent advice here. I agree with everyone. These doctors wait for symptoms and by the the time symptoms start, it's too late. It's all downhill from there. If he already has a rash, get him on antibiotics right away. This disease is horrible and it can bring someone to their knees. Get him help ASAP!

LLMD means Lyme Literate Medical Doctor. These doctors are experienced with Lyme Disease and know how to treat and what to look for. Most regular pediatricians are not trained enough but some do listen if you go in and explain to them what's going on and what you want. If you need an LLMD recommendation, email me and let me know.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 3/6/2010 8:39 PM (GMT -7)   
wow. this is terrible for a little kid to go through! Who is on that long list of meds? is it him or you?

I wouldn't mess around with just any doctor. How did he gt the crohns disease.? are you sure he was never tick infected before?

where is the pan handle? Isn't Dr, B down in florida and what about Dr. S.

this is a drag not being able to give names. Doesn't Dr. S take 5 minute consultations?

This is a very extreme case and I'm sure one of these guys would pick up the phone.

why can't I just say the name. I hear Dr. S. is great with kids

good luck with your little boy

Post Edited By Moderator (CajunGrl) : 3/7/2010 1:24:05 AM (GMT-7)


Tala3
Regular Member


Date Joined Sep 2009
Total Posts : 233
   Posted 3/6/2010 8:55 PM (GMT -7)   
Just so you know, most LLMD's do not take insurance...none of us can afford it either, we have no choice.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 3/7/2010 1:25 AM (GMT -7)   
The reason we do not post doctor's names is out of respect for them....no matter how popular they are. They have been under fire for a long time so please do not post doctor's names here. If you need to tell someone a doctor's name, you can do so privately through email.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 3/7/2010 11:54 AM (GMT -7)   
thanks for the edit, cajun.. don't these doctors have websites about what they do? They aren't under cover. I don't even know if Dr B is still practicing or if he is more involved in writing and researching ?

so it is OK to list LL ND name but not LL MD ?
hep c , lyme
Dad has lyme


1bitten2xshy
Veteran Member


Date Joined Jun 2007
Total Posts : 849
   Posted 3/7/2010 2:00 PM (GMT -7)   
Any type of  Dr.'s that will treat Lyme do we give out thier names here on the forum. Only thru Email or PM.

Dr. B has been retired for sometime now, however, I hear he is still active in research.


 Co-Moderator
Lyme Forum


Clear-sky
New Member


Date Joined Feb 2010
Total Posts : 6
   Posted 3/8/2010 6:41 AM (GMT -7)   
Regarding my friends problem posted few posts upper. It seams that his liver is fine. He now has pressure on his right side. He is becoming very worried because he has new symptoms and things are happening fast. His doctor scheduled him for an ultra sound and he took some blood to test his spleen. Could this really be splenetic problem?

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 3/8/2010 7:05 PM (GMT -7)   
Hi Ckear-sky,

This is just an opinion because I am not a doctor but there are many organs on that side. You can live without a spleen if your friend needs that removed. It's great that their liver is okay because we only have one of those. The gallbladder and one kidney is on that side too so it can be a number of things making their side swell. I have the same thing going on right now and just had an ultra sound done recently. Still waiting on results.

Was your friends liver enzymes elevated?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Clear-sky
New Member


Date Joined Feb 2010
Total Posts : 6
   Posted 3/9/2010 6:23 AM (GMT -7)   
Hi CajunGrl,
I think he said that doctor told him that liver enzyme are normal, if I remember correctly they are around 40. Is this normal? On the other hand I have to say that my friend is getting better. His breathing is back to normal, and the pressure is getting lower. He now has diarrhea but I think that this is much better then breathing issue. I have found that he has similar symptoms as some of guys that are discussing the spleen problems on another forum. So I just wonder could all this be caused with enlarged spleen?

Post Edited (Clear-sky) : 3/31/2010 6:17:41 AM (GMT-6)


rosesinjanuary
Veteran Member


Date Joined Oct 2007
Total Posts : 748
   Posted 3/9/2010 8:37 PM (GMT -7)   
Hi Kimmy
You caught it fast that's good.
I am with the better safer than sorry group
get him to a physician, (wthout panicking him duh but it'd be hard not to) and like suggested take a pic.  I too am aspleenic, and I would doubt that is a good thing since spleen helps fight disease but since you caught this so soon I am very hopeful.  I would get him on prolaphyic (is that a word)  antibiotic for at least 6 weeks.  Good luck i will say a prayer.  lisa  My daughter had a remarkable recovery and I didn;t catch it like you did.

rosesinjanuary
Veteran Member


Date Joined Oct 2007
Total Posts : 748
   Posted 3/9/2010 8:43 PM (GMT -7)   
Merry girl
hi I saw your post on your asplenic dog and vet's opinion. Could i ask what state u are in? I am aspleenic too like your puppy dog and got sick in 96.i live i Michigan we bought a home in a very wooded environment. my email is rosesinjanuary@hotmail.com in case u want to share the state u live in. thank u lisa
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