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Old 07-09-2004, 02:51 PM   #1
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5 yeal old son in hospital now for lyme disease

My son was just dx. with Lymes disease with a + western blot. He is in the hospital with lyme meningitis. I wanted to check to see if his treatment is correct. The doctors want him on IV antibiotics (I believe ceftrioxine) for a total of 3-4 weeks. Is this correct or should it be more?

 
Old 07-09-2004, 04:12 PM   #2
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Re: 5 yeal old son in hospital now for lyme disease

oh my, poor little guy. i am so sorry he is having to go thru this. i do not know if the treatment is correct or not and hopefully someone will come by to tell you. i just feel so bad for you and your little man. i'll be thinking about him and hope he gets better real soon. is the dr a lyme literate dr? he definately needs to be treated. the best of luck
karen

 
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Old 07-09-2004, 04:37 PM   #3
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Re: 5 yeal old son in hospital now for lyme disease

momof3boyz, I am so sorry your son is sick.

Besides Lyme disease, ticks can transmit several co-infections--Babesiosis, Ehrlcihiosis HME & HGE, Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. Please make sure your son is tested for these also, and by a reputable lab such as IgeneX in Palo Alto, CA. Many Lyme doctors believe the co-infections need to be treated first.

It is very important to see a Lyme knowledgeable doctor. I highly recommend calling the best Lyme pediatrician in the country. His name is Dr. Charles Ray Jones, and he is located in New Haven, CT. He sees patients from all over and he has helped many children. Maybe he could consult with your son's doctor.

From what I understand, three weeks is never long enough treatment for Lyme. Even if an infection is caught within two weeks of the bite (which is rare) six weeks of the proper dose of antibiotics should be the minimum treatment.

It is good your son has been diagnosed and has started treatment. Please post on how he is doing.

Last edited by ticker; 07-09-2004 at 07:20 PM.

 
Old 07-11-2004, 12:19 PM   #4
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Re: 5 yeal old son in hospital now for lyme disease

Thank you for your reply... My son is feeling much better and he has been headache free for 2 days. We are still at Children's Hospital of Pennsylvania. He is coming home Tues. and we will be continuing his IV antibiotics for another 3 weeks. That will be a total of 4 weeks . Do you think he needs more blood work after that to see if he needs more meds? Also, what can I expect from this disease in the near future for him. He starts school this year and I am concerned. Should he see a specialist on a regular basis for this? The internet posts a lot of "crazy" treatments for lyme disease most of all which I am uncomfortable with, what are your thoughts?
thank you for the support.

Last edited by momof3boyz; 07-11-2004 at 12:20 PM.

 
Old 07-11-2004, 05:00 PM   #5
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Re: 5 yeal old son in hospital now for lyme disease

momof3boyz, I am glad your son is improving. How long was he sick before getting diagnosed?

Four weeks of treatment is not long enough even if the infection was caught right away. From what I understand, the antibiotics kill the bacteria only when they are reproducing, which is approximately every four weeks. Four weeks of treatment would not even kill one growth cycle if a person started treatment two weeks into the infection. Usually when IV treatment is stopped, it is follwed with oral antibiotics.

Was he tested for the co-infections? This is extremely important. Many people who have Lyme are co-infected and if he is, it will affect treatment choice. Many Lyme doctors believe the co-infections need to be treated first before Lyme treatment is effective. Learn as much as possible. The seriousness of tickborne illnesses is gravely misunderstood by many doctors and patients are the ones who pay.

I cannot stress enough how important it is to see a knowledgeable doctor as soon as possible. Many doctors grossly undertreat Lyme which can lead to it becoming chronic. Once the infection becomes chronic, it can be difficult to eradicate. If your son's infection is early and he gets the proper aggressive treatment now, he has a wonderful chance of complete recovery. I highly recommend calling the Lyme pediatrician in CT to ensure he receives the proper treatment and is tested for the co-infections. Knowing what I know now, if this was my son I would contact the Lyme pediatrician as soon as possible.

Please be aware of the Jarisch-Herxheimer reaction (herx). Often, when people with Lyme take antibiotics, their symptoms may become worse or they may get new ones. When the antibiotics are killing the bacteria, toxins are released making the person sicker. It can be very scary but it is a good sign that the antibiotics are working. People experience this reaction differently, but it often occurs approximately every three to four weeks.

Your son is lucky you are his mom! Please let me know how he is doing.

Last edited by ticker; 07-11-2004 at 05:02 PM.

 
Old 07-11-2004, 05:36 PM   #6
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Re: 5 yeal old son in hospital now for lyme disease

He started with mild headaches and achy knees and low grade temp on June 21. The headaches became more severe on July 4...our first hospital ER visit. He was + for Epstein Barr and sent home. Then 3 days later positive Lyme test came back and we started him on a dose of amoxicillin. By that evening on July 7 I took him to CHOP with severe headaches and LP was done and dx with lyme meningitis. Tx with IV antibiotics started immediately. Picc line being placed tomorrow and to come home. I brought up the idea of co-infections and it was said that the anitbiotic he was on covered the type of infections named. The MD says he is responding so well with the treatment that he forsees no problems at all. They have seen a lot of children coming in with lymes recently. I will double check about the co infections. Thank you for advice.

 
Old 07-11-2004, 06:26 PM   #7
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Re: 5 yeal old son in hospital now for lyme disease

Ceftriaxone is a good IV med for Lyme. Ehrlichiosis (HME & HGE) is usually treated with Doxycycline. I do not believe Doxy is prescirbed for young children and I think Rifampin is used. The co-infection Babesiosis is similar to malaria and is treated with a combination of an anti-malarial with an antibiotic. This is usually Mepron and Zithromax. Bartonella is usually treated with cipro, erythromycin, or Doxy. I have had three of four of the co-infections and was treated with the meds mentioned. I have been on Ceftriaxone for Lyme only, not the co-infections. Please do research this.

There is an excellent book entitled "Everything You Need To Know About Lyme Disease." The second edition was printed in March of this year.

You can get a cover for your son's PICC line so he can take a shower or bath without getting the site wet. Websites cannot be posted here but if you do a search on PICC line cover or cast covers, you should be able to find where you can order one. They are a great help!

I am sure you and your son cannot wait for him to get home!

Last edited by ticker; 07-11-2004 at 06:27 PM.

 
Old 07-14-2004, 06:32 AM   #8
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Re: 5 yeal old son in hospital now for lyme disease

I agree with ticker that you should contact Dr Jones in new Haven, CT. This is my daughter's doctor and he is excellent! I my opinion, doctors tend to quit treatment to soon... just because symptoms seem to be better. Dr. Jones always says to treat for 3 months after symptoms are gone. Co- infection testing must be done... treatment is not the same as Lyme treatment. I hope your son feels better soon. I know it is a scary thing for a child (and a parent)!

 
Old 07-15-2004, 10:51 AM   #9
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Re: 5 yeal old son in hospital now for lyme disease

Ok, so what needs to be done to get tested for these other co-infections. Can my pediatrician order them? We have an appointment with her tomorrow and I will have her order them. I will Google this doctor in CT. Does he take phone calls from other doctors on his treaments?
General question. I have seen a couple of posts about certain foods to stay away from, can someone elaborate on that for me.
What type of oral antibiotic did your doctor precribe after IV?
thank you so much for your support

 
Old 07-15-2004, 07:02 PM   #10
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Re: 5 yeal old son in hospital now for lyme disease

momob3boyz, Lyme testing needs to be done at a reputable Lyme lab such as IgeneX in Palo Alto, CA. Maybe your son's doctor can use this lab? My bet would be that Dr. Jones would consult with your son's doctor. He and his staff are wonderful.

Each case is different as far as what meds are prescribed. I have never heard of a knowledgeable Lyme doctor stopping IV without following up with oral antibiotics. I hope you can get in touch with Dr. Jones.

Many people who have Lyme avoid sugars and processed foods. Ask your doctor about what acidophilus your son could take while he is on antibiotics. This will replace the good bacteria and prevent yeast overgrowth. Make sure he waits at least two hours before or after taking the antibiotic to take the acidophilus or the antibiotic will not be absorbed properly.

 
Old 07-21-2004, 04:46 PM   #11
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Re: 5 yeal old son in hospital now for lyme disease

My son has commented on a tender spot on the top of his head. Could a tick have embedded itself under the skin without any other signs? The site is not red, it is not swollen, there is no cut or skin break. It is basically very tender to touch. Am I being paranoid?

Last edited by momof3boyz; 07-22-2004 at 06:02 PM.

 
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