New and Have Questions

[NewBeginnings]

Hi,

 

I am new to this forum but have been reading a lot. (lots of great info!) I know every person responds differently to medicine, and I'm just trying to get some idea on what to expect.

 

We've been dealing with Lyme for almost a year now (took 5 years to diagnose), and recently discovered the strep connection.

 

Approximately how long was/is your child been on the high dose antibiotic before going to the prophylactic dose?

 

Also, how often do you give your child ibuprofin/motrin?

 

I've been given names of a few Dr's in my area to see, but I'm just trying to get a grasp on all of this before we go.

 

School starts in a week and I'm a nervous wreck. Any advice you are willing to share with me would be greatly appreciated!

[thereishope]

I'm bumping this question up since it is about to go onto the second page of the forum without a response.

 

The reason I haven't responded is because I'm not sure how Lyme protocal differs from PANDAS.If you've been reading the Lyme posts lately, they are explaining how someone with Lyme can have a ramp in symptoms due to strep. So, is that a PANDAS reaction or part of the Lyme? Does that affect the antibiotics, dosage (full strength vs prophylactic), etc? I don't know.

 

As for the Ibuprofen, the duration of giving it varies on here. With my child, I think the longest straight I gave it was 2 weeks.

[KaraM]

Hi and Welcome,

 

Like Vicki, I can't comment on the Lyme part. As for abx, my daughter initially did 5 days treatment dose, then 2 months prophylactic. That was prescribed by the pediatrician and was intended to be a stop gap until we saw a specialist. When we finally saw Dr. Bouboulis, he upped her abx dose to a treatment dose for one month, then went back down to a prophylactic dose (which she has been on since July).

 

I would give her Motrin in the morning and afternoon every day at the beginning. We are slipping now, but I kick myself every time. I do believe it helps.

 

Kara

 

 

[NewBeginnings]

Thank you for your replies. I took my son to GP for bright red throat and swollen tonsils (neither of which hurt) and he put him on Augmentin. For the first time in 10 months, we had a significant response to an antibiotic. And it was within 48 hours we noticed a difference. He was on it for 2 weeks. When the two weeks was up and we went a few days not on any abx all symptoms came roaring back. He was put back on Augmentin but not as strong of a dose and again, improvement, but not enough. He is now on a higher dose and making progress.

 

 

That's why I'm curious to see what the average is on how long the higher doses may be needed before we back down. I don't want to pull back too soon, but at the same time, the dose makes me nervous. Thank you for any input.

[EAMom]

Many PANDAS parents find they need to keep there child on full-strength antibiotics long term. Take "Saving Sammy" for an example. He initially responded to regular Pen (a bit) but eventually needed "bigger guns". He wound up being on 1000mg of Augmentin XR twice a day for a YEAR (he weighed about 100 pounds at the time). Then he went to a lower dose for another 2 years.

 

My dd has been on Azithromycin 250mg/day for over 2 years. This is full-strength for a child of her size (currently 64 pounds.)

 

What antibiotics has your child received for Lyme treatment? What were his Lyme symptoms?

 

re Advil/ibuprofen...you can give whatever the dose is on the bottle (depends on the kids size) short term (days). Long term (weeks, months, years) you might want to give it less frequently. We give 200mg Advil once a day long term. Our immunologist said this was a safe long term dose.

[NewBeginnings]

Thanks for responding.

He was on Amox for 90 days, (At the initial start of Amoxy, we noticed some slight changes) then moved to Ceftin for a bit. After Ceftin, he was put on Omnicef for a suspected UTI and all of his symptoms increased. He then went for a bit not being on anything and his symptoms progressed. He was put back on Ceftin for 30 days with little change.

 

He has had a long list of symptoms:

Nausea, weight loss, anxiety, anxiety, anxiety, facial twitching, vocal tics, dilated pupils, forehead headaches, eye pain, sensitivity to light, always tired, joint pain and did I mention anxiety?

 

Augmentin isn't in the top list of drugs for Lyme but it has made the most impact. He was just about symptom free on Augmentin, but then we tried the XR version bc it's obvious when the regular Augmentin is wearing off and he had an awful reaction to it. Turns out, Augmentin XR is not gluten free and our son has been gluten free for 3 years and he is super sensitive to it.

 

What do you do when your dd is in school and she has a flare? I noticed last year his anxiety and twitching would get much worse whenever someone in his class was out with strep. That's what caught my attention and I started to look further.

 

I have read Saving Sammy, but I was just curious if high doses for long periods of time was common.

 

I don't have to give him Mortin often, but do notice when I do it really helps.

[EAMom]

Hmmm. I did not know that about Aug. XR!

 

You might try Azithromycin. Or even a combo. of Azith. and Augmentin, at least for a while.

 

Have you read the FAQ 's thread? http://www.latitudes.org/forums/index.php?showtopic=6266

Edited August 19, 2010 by EAMom