Sick toddler HELP
09-24-2002, 01:51 AM
My 3 1/2 year old son was bit by a tick four months ago. We have the tick, it was in him at least 30 hours, most likely at least 48. Never got a rash. about a month ago, he started having symptoms (bizarre fever, loss of appetite and he normally eats like a horse, tingling in his arms, fatigue, muscle aches, a few strange eye episodes).
I talked immediatly at the time with the doctor, the state lab, and they said they dont test anymore for it because its inconclusive. If he became symptomatic, they'd probably just treat him. HOWEVER, the antibiotics are not reccomended for anyone under the age of nine, and this scares me. ALSO...the fact that I dont know if he is having pain, loss of sleep, fatigue etc... because he is just a growing boy who is having normal growing pains and interrupted sleep, how do I know ?!!! ACK. Im gonna go nuts wondering or waiting like they suggest. But I DO NOT want to just dump antibiotics in him either. He has been healthy his entire little life, never had an ear infection, cold, flu (once only) nothing. He has been very healthy and a good eater. His fatigue is so bad, he is skipping meals on ocassion and my child who can usually out eat any adult (were vegetarian) is not eating. He had a strange mild chicken pox type rash in a small area of his body, has the lymes rash ever presented in this way?
Has anyone else dealt with a child who had this? How/were they diagnosed? Treated? Any advice would be greatly appreciated. Im a nervous wreck :-(
Do I go for the ELISA followed by a western blot? My doctor will run what ever we want I think, even If I have to pay for it out of pocket, I want to know for sure.
Ack. there is probably more im leaving out.
Anyone?
Thanks so much,
Melissa (Mel)
I talked immediatly at the time with the doctor, the state lab, and they said they dont test anymore for it because its inconclusive. If he became symptomatic, they'd probably just treat him. HOWEVER, the antibiotics are not reccomended for anyone under the age of nine, and this scares me. ALSO...the fact that I dont know if he is having pain, loss of sleep, fatigue etc... because he is just a growing boy who is having normal growing pains and interrupted sleep, how do I know ?!!! ACK. Im gonna go nuts wondering or waiting like they suggest. But I DO NOT want to just dump antibiotics in him either. He has been healthy his entire little life, never had an ear infection, cold, flu (once only) nothing. He has been very healthy and a good eater. His fatigue is so bad, he is skipping meals on ocassion and my child who can usually out eat any adult (were vegetarian) is not eating. He had a strange mild chicken pox type rash in a small area of his body, has the lymes rash ever presented in this way?
Has anyone else dealt with a child who had this? How/were they diagnosed? Treated? Any advice would be greatly appreciated. Im a nervous wreck :-(
Do I go for the ELISA followed by a western blot? My doctor will run what ever we want I think, even If I have to pay for it out of pocket, I want to know for sure.
Ack. there is probably more im leaving out.
Anyone?
Thanks so much,
Melissa (Mel)
Sponsor
ticker
09-24-2002, 06:07 PM
Hi Melissa. Please read the post "Lyme Disease Information" on this forum. I am so sorry your son is sick, I know it is heartbreaking. How was the tick removed? It is good that you saved it,it can be tested for disease at IgeneX Lab in Palo Alto, CA.
There are antibiotics that can be given to young children. There are many different types of Lyme rashes. Also, the kind of rash you describe could be from other tickbonre infections such as Ehrlichiosis or Rocky Mountain Spotted Fever. It is a good idea to photograph his rash for documentation. Place something near it, like a coin or ruler, before photographing it to give it size definition.
There is an excellent Lyme pediatrician in New Haven, CT. I suggest calling his office to see if he could consult with your son's doctor about testing and treatment. He has helped many chidren all over the country. His name is Dr. Charles Ray Jones. The lab in CA mentioned above is an excellent one for testing Lyme and other tickborne infections.
Hang in there okay? There is good help available.
There are antibiotics that can be given to young children. There are many different types of Lyme rashes. Also, the kind of rash you describe could be from other tickbonre infections such as Ehrlichiosis or Rocky Mountain Spotted Fever. It is a good idea to photograph his rash for documentation. Place something near it, like a coin or ruler, before photographing it to give it size definition.
There is an excellent Lyme pediatrician in New Haven, CT. I suggest calling his office to see if he could consult with your son's doctor about testing and treatment. He has helped many chidren all over the country. His name is Dr. Charles Ray Jones. The lab in CA mentioned above is an excellent one for testing Lyme and other tickborne infections.
Hang in there okay? There is good help available.
Sick toddler HELP
09-25-2002, 12:22 AM
Thanks Ticker, for the info.
I removed the tick all wrong, did the vaseline thing, not knowing how and I had heard someone mention it just the week before that you do it that way. (More I can blame myself for). Lets see. I guess having the tick tested would show if it was infected or not right? If the tick is negative, lymes is less likely right? But if its positive, that doesn't necessarily mean that he contracted it.
I will try to contact that peditrician tomorrow that you spoke of, thank you.
I suspected lymes in myself years ago when I was pregnant with my son, did indeed have a deer tick in me during that time as well. No one around here knew of it much and my OB did a test but it was "inconslusive" as well. Grrrrr. (Im getting irritated with this entire disease and its introduction)but I digress....
I NEVER thought of photographing the rash! GEEEZE, I work with photography for a living, and it never entered my mind. Crud!
I am very thankful for you post, I am so frustrated, and feelings of guilt, Angry...I see now that this is not going to be an easy diagnosis of any sort, and something I feel like I will worry about for the rest of my life. But, you give me hope. I remember seeing some sites with organizations in our area, i'll look there as well for a ped who specializes in this here. Im in Wisconsin, you'd THINK theyd know something about it here.
Bless your heart. THank you, from the bottom of mine. And if anyone else has any input, id still really appreciate it. Anything.
Hugs, Mel
I removed the tick all wrong, did the vaseline thing, not knowing how and I had heard someone mention it just the week before that you do it that way. (More I can blame myself for). Lets see. I guess having the tick tested would show if it was infected or not right? If the tick is negative, lymes is less likely right? But if its positive, that doesn't necessarily mean that he contracted it.
I will try to contact that peditrician tomorrow that you spoke of, thank you.
I suspected lymes in myself years ago when I was pregnant with my son, did indeed have a deer tick in me during that time as well. No one around here knew of it much and my OB did a test but it was "inconslusive" as well. Grrrrr. (Im getting irritated with this entire disease and its introduction)but I digress....
I NEVER thought of photographing the rash! GEEEZE, I work with photography for a living, and it never entered my mind. Crud!
I am very thankful for you post, I am so frustrated, and feelings of guilt, Angry...I see now that this is not going to be an easy diagnosis of any sort, and something I feel like I will worry about for the rest of my life. But, you give me hope. I remember seeing some sites with organizations in our area, i'll look there as well for a ped who specializes in this here. Im in Wisconsin, you'd THINK theyd know something about it here.
Bless your heart. THank you, from the bottom of mine. And if anyone else has any input, id still really appreciate it. Anything.
Hugs, Mel
jane7178
09-26-2002, 10:04 AM
Hi Melissa,
I just saw your post. I am impressed with anything and everything that ticker says here. Since he knows of an excellent pediatrician who knows exactly how to treat Lymes in children, I would contact that person without delay. There are quite a few doctors who kinda know, but do not exactly know, how to treat this disease. And with the nature of this illness, time is crucial. Your son needs the exact treatment necessary now to get better and not have to deal with this the rest of his life. The pediatrician that ticker mentioned is your son's ticket to getting well. Please contact him without delay. I have had Lyme disease for eleven years. The long term effects are life altering. I finally found a doctor who diagnosed me and got me back on my feet, but I still deal with the effects of Lyme daily. I just did not find her soon enough, and now I have chronic Lyme disease. Your son can make a complete recovery at this stage, so don't waste time trying to find a Lyme doctor for him in your area. Get in touch with the specialist immediately. I wish you the very best. I always said that the only way I could deal with having Lyme is to know that my children did not have it. This is a terrible illness that affects you all over. I do not wish this on anybody! Keep us posted here please, as to his progress. And take care of yourself too!
I just saw your post. I am impressed with anything and everything that ticker says here. Since he knows of an excellent pediatrician who knows exactly how to treat Lymes in children, I would contact that person without delay. There are quite a few doctors who kinda know, but do not exactly know, how to treat this disease. And with the nature of this illness, time is crucial. Your son needs the exact treatment necessary now to get better and not have to deal with this the rest of his life. The pediatrician that ticker mentioned is your son's ticket to getting well. Please contact him without delay. I have had Lyme disease for eleven years. The long term effects are life altering. I finally found a doctor who diagnosed me and got me back on my feet, but I still deal with the effects of Lyme daily. I just did not find her soon enough, and now I have chronic Lyme disease. Your son can make a complete recovery at this stage, so don't waste time trying to find a Lyme doctor for him in your area. Get in touch with the specialist immediately. I wish you the very best. I always said that the only way I could deal with having Lyme is to know that my children did not have it. This is a terrible illness that affects you all over. I do not wish this on anybody! Keep us posted here please, as to his progress. And take care of yourself too!
ticker
09-26-2002, 12:51 PM
Hi Melissa, I am in photography also!
Do not blame yourself, it is not your fault that your son is sick. I recommend getting the tick tested. When you contact the lab that does the testing, I would ask how reliable this testing is. It usually takes weeks to get the results back, and since your son is already sick he should be evaluated as soon as possible. Have you got in touch with the Lyme pediatrician?
Lyme Disease can be passed through pregnancy and breastfeeding. What did your doctor mean that your tests were inconclusive? Are you having symptoms?
Hang in there okay? There is hope! You are not alone, and there is good help available.
Do not blame yourself, it is not your fault that your son is sick. I recommend getting the tick tested. When you contact the lab that does the testing, I would ask how reliable this testing is. It usually takes weeks to get the results back, and since your son is already sick he should be evaluated as soon as possible. Have you got in touch with the Lyme pediatrician?
Lyme Disease can be passed through pregnancy and breastfeeding. What did your doctor mean that your tests were inconclusive? Are you having symptoms?
Hang in there okay? There is hope! You are not alone, and there is good help available.
ticker
09-26-2002, 12:52 PM
Jane, thank you for your kind words!
Sick toddler HELP
09-26-2002, 02:54 PM
OH CRUD! The test I had during pregnancy: All they said was that it was inconclusive and that we'd follow up on it after birth and according to how I felt.
O My. (ANd thats NOT what I want to say) This is going from bad to worse. Yes, I was very symptomatic been up and down over the years, have had undiagnosed junk for years. AND, I am currently nursing my second child! ACK!!!! THis is not good at all.
Ticker. THANK YOU! and Jane also. I suspect I will be here frequently until I can sleep well. S* I'll be SO angry if I gave this to my girl!
OMG!
THank you,im off to make phone calls.
!!!!!!!!!!!!!!!!!!!!!!!!
Bless you,
xo
Mel
O My. (ANd thats NOT what I want to say) This is going from bad to worse. Yes, I was very symptomatic been up and down over the years, have had undiagnosed junk for years. AND, I am currently nursing my second child! ACK!!!! THis is not good at all.
Ticker. THANK YOU! and Jane also. I suspect I will be here frequently until I can sleep well. S* I'll be SO angry if I gave this to my girl!
OMG!
THank you,im off to make phone calls.
!!!!!!!!!!!!!!!!!!!!!!!!
Bless you,
xo
Mel
ticker
09-26-2002, 03:13 PM
Melissa when you call the pediatrician, tell him about the possibility that you may have Lyme and that you are currently nursing.
Please post back and let us know how you are all doing.
Please post back and let us know how you are all doing.
Sick toddler HELP
09-26-2002, 04:48 PM
Here is the update:
Blick. They are pretty sure my son has it. I see our doc. tomorrow and will urge him to start antibiotics while we wait for the rest of the results. He most likely will, he's pretty good.
btw, this is via the office of the ped. you reccomended, thank you.
Lab kits are being sent so we can both follow up with all the other tests. Mr. Tick is being sent off as well, to the place in CA. I suspect that if I show positive, we will then test my nursing daughter. Hurumph, what a mess!
CRUD! I really talked long with the office there, they were very very helpfull, so again, thank you so very much for the referral. Im not understanding why, insurance companies and government, as they are, do not jump on this financial bandwagon. Something rotton is in denmark, so to speak. Anyway...
Im not freaking out as bad anymore, there is light in the tunnel, if not the end in sight yet, there is hope.
THanks from the bottom of my heart for listening and helping me so much.
xo
Mel
Blick. They are pretty sure my son has it. I see our doc. tomorrow and will urge him to start antibiotics while we wait for the rest of the results. He most likely will, he's pretty good.
btw, this is via the office of the ped. you reccomended, thank you.
Lab kits are being sent so we can both follow up with all the other tests. Mr. Tick is being sent off as well, to the place in CA. I suspect that if I show positive, we will then test my nursing daughter. Hurumph, what a mess!
CRUD! I really talked long with the office there, they were very very helpfull, so again, thank you so very much for the referral. Im not understanding why, insurance companies and government, as they are, do not jump on this financial bandwagon. Something rotton is in denmark, so to speak. Anyway...
Im not freaking out as bad anymore, there is light in the tunnel, if not the end in sight yet, there is hope.
THanks from the bottom of my heart for listening and helping me so much.
xo
Mel
ticker
09-26-2002, 07:56 PM
Hi Mel, I am happy to help! Thanks for the update. I am glad you got in touch with the CT pediatrician, he is the best. I am also glad the testing will be done at the lab in CA.
Lyme Disease is the second fastest-growing infectious disease in the US after AIDS. This is very significant, yet nothing is being done to educate people. I don't understand it either.
Yes, there is hope and your son can get better. You are a wonderful mom!
Lyme Disease is the second fastest-growing infectious disease in the US after AIDS. This is very significant, yet nothing is being done to educate people. I don't understand it either.
Yes, there is hope and your son can get better. You are a wonderful mom!
Sick toddler HELP
09-27-2002, 11:00 PM
Saw our doc. today :-( DID NOT go as expected. In a nutshell, we were scoffed at, made to look foolish and ubsurdly pigeonholed into "Internet People" you know, the kind who know TMI, spread rumors etc....
NOT HAPPY to say the least. But, he did a great job making me second guess myself. ? And I thought we did a wonderful job very tactfully approaching the topic. I guess not.
So. The doc. spouted of untrue "Facts" about Lymes. He really is clueless, and I hate to even say that (because until today, we really did like him), but some of the info I presented him, excuse me, rebuttled with, was right off the State Lab Statistics. Instead of even considering the possiblity, EVEN IF REMOTE, of lymes in my son, I was lectured on nutrition and told to make an appt. with a neurologist about the tremors and constant tripping.
Can you see the steam?
Not a good day. Came home, blew up, freaked out and ran away. Im not coping.
He did, "for our benefit" run a lymes test. However, he didn't know WHAT kind of test it was, just that it was sent to central lab and they will do it. ! No faith in that at this point, I fully expect them to screw it up and call it negative to save face.
In the meantime, we are waiting for the kit to come to send to the place in CA, I guess, for our second opinion.
"he looks good to me" is NOT EXAMINATION! I could spit nails, but surely my head will explode first.
That is the short version of the update, if I think much more about it at this point, im gonna stroke for sure.
Thanks for the ear/eye :-)
Mel
NOT HAPPY to say the least. But, he did a great job making me second guess myself. ? And I thought we did a wonderful job very tactfully approaching the topic. I guess not.
So. The doc. spouted of untrue "Facts" about Lymes. He really is clueless, and I hate to even say that (because until today, we really did like him), but some of the info I presented him, excuse me, rebuttled with, was right off the State Lab Statistics. Instead of even considering the possiblity, EVEN IF REMOTE, of lymes in my son, I was lectured on nutrition and told to make an appt. with a neurologist about the tremors and constant tripping.
Can you see the steam?
Not a good day. Came home, blew up, freaked out and ran away. Im not coping.
He did, "for our benefit" run a lymes test. However, he didn't know WHAT kind of test it was, just that it was sent to central lab and they will do it. ! No faith in that at this point, I fully expect them to screw it up and call it negative to save face.
In the meantime, we are waiting for the kit to come to send to the place in CA, I guess, for our second opinion.
"he looks good to me" is NOT EXAMINATION! I could spit nails, but surely my head will explode first.
That is the short version of the update, if I think much more about it at this point, im gonna stroke for sure.
Thanks for the ear/eye :-)
Mel
ticker
09-29-2002, 03:22 PM
Mel, I am very sorry to hear this. I cannot understand doctors resistance to the possibility of Lyme Disease. What matters most is to find out why your son is sick. It is a doctor's job to help people find out. People who have Lyme can look fine because the infection is in the blood.
I am glad you are getting the test kit from CA. Do not give up! Mothers know their children better than anyone.
I am glad you are getting the test kit from CA. Do not give up! Mothers know their children better than anyone.
jane7178
11-03-2002, 11:19 AM
Hi Mel,
I would love an update on your child. I sure feel for you. I know how hard it is to be so sick and for the doctors to not help you. Keep trying. Don't give up.
Ticker is right on the mark. Follow his lead and get your child the help he needs. Fight, girl, fight!! I'm with you all the way. Please keep us posted, and if there is anything I can do to help you, please do not hesitate to let me know. I live in Georgia now, but my Lyme doctor is in Dallas, Texas. She is wonderful, and she is particularly interested in helping diagnosis children and in getting them better.
Jane
I would love an update on your child. I sure feel for you. I know how hard it is to be so sick and for the doctors to not help you. Keep trying. Don't give up.
Ticker is right on the mark. Follow his lead and get your child the help he needs. Fight, girl, fight!! I'm with you all the way. Please keep us posted, and if there is anything I can do to help you, please do not hesitate to let me know. I live in Georgia now, but my Lyme doctor is in Dallas, Texas. She is wonderful, and she is particularly interested in helping diagnosis children and in getting them better.
Jane
Sick toddler HELP
11-04-2002, 09:39 AM
Hi Jane,
You were just the pep talk i needed. We are still waiting for the blood work to come back. I will call yet again, today. They were so convinced he had it, that we didn't run the wetern bloot test. So, if the results come back negative, we will run that just incase it was dormant when we drew. But if its positive, that of course will not be good news either. Everyone around me is just looking at me like im nuts. All I know, is that my kid is tired and feels like crud all the time, and a four year old should not have to push himself like he does. Makes me so sad. He actually picked up some weights and started working out because he thinks he's out of shape and that is why he cant keep up with his friends.
I am very disatisfied with our doctor, shocked at his attitude with this. Working with a ped. out of state right now. Sigh.
Thanks so much for the note, and the referral if we needed one. Im hesitant to learn of my results as well, it would explain soooo much that has been going on, yet then, I would have to have my baby tested.
:-(
Thanks again :-)
Melissa
You were just the pep talk i needed. We are still waiting for the blood work to come back. I will call yet again, today. They were so convinced he had it, that we didn't run the wetern bloot test. So, if the results come back negative, we will run that just incase it was dormant when we drew. But if its positive, that of course will not be good news either. Everyone around me is just looking at me like im nuts. All I know, is that my kid is tired and feels like crud all the time, and a four year old should not have to push himself like he does. Makes me so sad. He actually picked up some weights and started working out because he thinks he's out of shape and that is why he cant keep up with his friends.
I am very disatisfied with our doctor, shocked at his attitude with this. Working with a ped. out of state right now. Sigh.
Thanks so much for the note, and the referral if we needed one. Im hesitant to learn of my results as well, it would explain soooo much that has been going on, yet then, I would have to have my baby tested.
:-(
Thanks again :-)
Melissa
ticker
11-04-2002, 12:08 PM
Hi Mel, I have been wondering how things were going also. I am sorry your appointment went so badly.
Moms know their children better than anyone, and they know when something is wrong. It is a doctor's job to help people find out what is wrong. They are getting paid by you. If your doctor is unable to help or unwilling to help, it is time to find one who will. Do not give up! You deserve answers. I suggest that you get copies of any tests that are run.
Hang in there okay? You are a great mom, and you will get answers.
Moms know their children better than anyone, and they know when something is wrong. It is a doctor's job to help people find out what is wrong. They are getting paid by you. If your doctor is unable to help or unwilling to help, it is time to find one who will. Do not give up! You deserve answers. I suggest that you get copies of any tests that are run.
Hang in there okay? You are a great mom, and you will get answers.