Any advice regarding IV antibiotics

[bubblegum]

Poor dd had IVIG last wed and thur.They almost wouldn't complete procedure due to dd would not take Benadryl and Tylenol first.(We got some of it into her but on the 2 nd day they had to give her a dose of Benadryl IV)Somehow we got thru it.We give her the melt aways and she has taken them before.It's difficult to figure out the reason for refusal but here is my list,1.Tired of taking medications2.OCD is bad and has been for several weeks.She thinks she caused the ocd and that she can just make it go away.3.She has had a few episodes of vomiting and diarrhea so now worried about vomiting,especially in the car.She vomited again on our way home the next day after IVIG. We have tried different ways,mix with ice cream,yogurt,in juice(Depending on what we are trying to get her to take)She does c/o abd pain so maybe part is real and part is the ocd.Also she c/o her throat being scratchy but has never come up + for strep(Last time I tried to swab her throat I could only do her tongue because she would not open her mouth)So we sent it out for culture but it showed nothing.We are still waiting for Dr.J report but I don't know if we wait a week or so and then try meds again.(You know with ocd things change)We were hoping that IVIG would help and then we could get meds into her again.Here is what I do know,1.Doesn't make a response to strep per Dr.B,2.Has had EBV,CMV,Mycoplasma P(Dr.J and Dr.B said due to not current not to worry about them)3.Babesia(Fish)thru Igenex +,bands 31 and 39 Ind.for BB(Lyme)and bands ++41.Has anyone gone the IV route for their children?Also we would need to find a Doctor closer by to Lancaster,Philly or Md area.Does anyone know if there is a Doc at CHOP or John Hopkins?(We did go to John Hopkins pediatric ED one time because it was a weekend and at night and dd was sick but they wouldn't order anything.We had to wait until Monday to see her pediatrician to order yet another antibiotic.)We have seen Doctors whom have not helped at all and wasted time and $.So any input would be appreciated as you can see we need help!Thank you for all of the people that post on here because it gives me hope that we have to keep trying and something will make our Beautiful daughter better.I have to stop writing because now I am crying!Sorry!

[lyme_mom]

Dr Paul Beals outside Annapolis is excellent and his fee is reasonable. He and dr jones take same approach. His office is 35 minutes from bwi airport. My son has a picc line for five weeks in the summer. It isn't necessary unless oral meds don't work. It's such a difficult thing to keep the picc clean and keep an active child from pulling it. Dr j or Beals will know the right combo for Lyme, Babesia and strep. Iv antibiotics don't help babesia. Beals treats pandas... He has seen it all in his 35 years as an integrative family doctor. I'm certain he can help you-he has treated many family members and friends.

Sounds like she has Lyme and babesia. Hopkins is not a good place for Lyme. You need an ilads trained doctor like jones or Beals.same thing is true of mayo clinic. You should read their website - it says lyne is hard to get and easy to treT :-). Clueless. Pm me if you need more info.

[bubblegum]

Thank you Lyme mom!Maybe if we can get her on IV antibiotics we can make the ocd better,and then go back to po meds(By mouth)She was on Clindamycin last year but would only take it for 10 days(She took the liquid,can t take pills)and she was better on it.It taste/smells nasty but it made ocd s/s decrease.Did they do the picc line at doc office?I will call tomorrow,thank you!!!!!!!

[philamom]

Thank you Lyme mom!Maybe if we can get her on IV antibiotics we can make the ocd better,and then go back to po meds(By mouth)She was on Clindamycin last year but would only take it for 10 days(She took the liquid,can t take pills)and she was better on it.It taste/smells nasty but it made ocd s/s decrease.Did they do the picc line at doc office?I will call tomorrow,thank you!!!!!!!

 

Gatito-

Sending you a pm!

[bubblegum]

Thank you!

[smartyjones]

. Hopkins is not a good place for Lyme.

 

 

interesting. . . hopkins is not a good place for pandas either! if you do somehow end up there, i'd suggest searching this site for info about some of our experiences there so you go with knowledge of what others have experienced. i think if you put in 'hopkins' or dr. singer for the search, you could turn up something.

 

good luck.

[lyme_mom]

Thank you Lyme mom!Maybe if we can get her on IV antibiotics we can make the ocd better,and then go back to po meds(By mouth)She was on Clindamycin last year but would only take it for 10 days(She took the liquid,can t take pills)and she was better on it.It taste/smells nasty but it made ocd s/s decrease.Did they do the picc line at doc office?I will call tomorrow,thank you!!!!!!!

You can get one dose of iv antibiotics in the doctors office via an iv but one dose is not enough and sometimes it causes a bigger herx. Kids dont usually lime ivs. My son had a picc line which is a port in his arm where I gave him his daily dose of rocephin. I don't recommend it u ness you really need it: no pool, need help bathing so it doesn't get wet, no basketball, tennis, etc. We had to rush to get an xray of the line three times that summer to make sure it hadn't moved from the right spot. It was very stressful! A nurse comes once a week to remove the bandage and clean it and that is a delicate process. You can't move e cord at all as you pull off the thick tape cover with gloves that stick to it. Have you tried a month of the right antibiotics yEt to see how much it helps?

[melanie]

Is Dr J from uNDMJ?

[lyme_mom]

Is Dr J from uNDMJ?

Dr Charles Ray jones, new haven,famous Lyme pediatrician.

[MichaelTampa]

I'm an adult, so, for what it's worth, I was helped enormously with IV antibiotics. I definitely had/have lyme, PANDAS is questionable. I don't have a response to the vaccine for strep, and had a high CamK score, but the CamK score could be from lyme too. I haven't noticed big flare-ups of symptoms, perhaps more distinguishing of PANDAS than lyme, but then my symptoms are actually sensitivities to things I generally avoid, so, it is difficult to conclude to much there.

 

But, anyway, the IV did help quite a lot with the lyme. I took 1000mg of Invanz daily for 2 months, along with tindamax and alinia being rotated for their cyst-busting properties.

 

Michael