What to Do Next?

[cidermill]

My 7-year-old son was diagnosed with Lyme in mid-September and I could really, really use some help. My heart is breaking.

 

He started 1st grade early September and from the 4-5th day on he came home crying and saying his throat & tummy hurt, that the day was too long, it was too hard, etc and that he didn't want to go. We all thought he was just having trouble getting used to the longer day of 1st grade. He was having panic attacks before bed and in the morning, getting himself so upset. He was like a different kid. Three weeks later we took him to Disney and the entire vacation he was saying he was so tired and asked to go back to the hotel. Then one knee joint swelled up. His eyes looked gaunt. Then out of the blue his hands/fingers would not stop moving. We immediately suspected Lyme, which was confirmed when we came home. Our ped put him on Amox 2x/day. I took him to an ID dr and he upped his dosage to 3x/day. He wants to test for co-infections, which we still need to do. He said any and all changes in his personality should be b/c of the Lyme. Once it's out of his system all behaviors should fade. It's not happening yet...

 

Since starting meds, his fatigue is decreasing, joint not swollen, but his anxiety has good and bad days. It's still there though. He's doing well in school, but he's still not himself. My biggest concerns are his heightened anxiety and also his finger movements. He is always, always moving fingers on one of his hands. It has me so upset when I see him do that. He told me he can't stop them and he wants to. I want to cry. My heart is breaking for him. It's been about a month and a half now. Can anyone tell me what I should be doing next to try to help him?

 

 

Just a note -- both my niece and nephew are Pandas. I, myself, have anxieties of my own, but nothing like movement disorders or panic attacks. My daughter had transient nervous facial tics for about 2 years, but are (knock on wood) seeming to be gone now that's older and more relaxed. Should I take him to a Pandas dr? Dr. T is in-state. Any and every idea or thought would be soo much appreciated. THanks ladies.

 

Cidermill

[momcap]

I would see an LLMD recommended by ILADS. I'm pretty sure most lyme docs would treat with combo antibiotics, rather than just amoxicillin. You could also go to lymenet.org to their flash discussion and post under seeking a doctor. We treated PANDAS via Dr. T before finding out about lyme. DS only got worse, until we figured out he had lyme. Now that we're focusing on lyme he's getting better. We're hoping that PANDAS will go away once lyme is treated, but that remains to be seen.

[lismom]

I ditto seeing a LLMD. You'll need more than amox. My son has had finger movements as one of his motor tics. It comes and goes. I have also seen his toes do this.

[cidermill]

momcap - Any chance you see a LLMD in NJ? Or is Dr. T treating his Lyme? It seems hard to find a really good one. I'm a big fan of referrals. Can you email me if you know of a very good one?

 

lismom - Good to know I"m not the only one seeing the finger movements. It's his one and only motor tic and I guess I have to learn not to let it bother me, but it's hard. Is your son still fighting Lyme? Is he doing better? If you don't mind sharing, I'd love to know what kind of meds and/or supps he's on.

 

Thanks ladies.

[rowingmom]

My 10yo daughter has been on two Abx (baixin/rifampin) for 5 months now with a diagnosis of lyme/bartonella, but it has just been within the last month that we have noticed her symptoms really resolving. Her LLMD has taken her off rifampin (for bartonella) and has replaced it with A-Bart. She is still on biaxin (for lyme), as well as boluoke, Interfase, transfer factor multi-immune, lyme transfer factor, DMG, liposomal glutathione, omega-3, a homeopathic lymph and liver drain, and a couple of probiotics. Her motor tics have stopped and she only mentions her symptoms in the evenings when she is tired or after celtic dance class. Her fatigue is gone. It is so nice to see her playing with friends, not just sitting on the curb watching.

 

She presented with similar symptoms to your son. Stomach/throat/head/shin pain, anxiety attacks, motor tics, severe fatigue (had to sit at the top of stairs)/dizziness, weight loss, dark circles under the eyes. After beginning treatment she improved for a couple of weeks, but then had a herx reaction for two weeks. We were on vacation and had to find a wheelchair for her because she was so fatigued and in such pain. I wish I had known more about detoxing then, or had at least taken the Epsom salts along.

 

Before her lyme/bart diagnosis she took two rounds of penicillin for strep (mostly asymptomatic but with exacerbated lyme/bart symptoms and motor tics). The doctor said it wasn't strep (no red throat w/ white spots, no fever) but I pushed for the swab - it was positive. Penicillin resolved all her symptoms while on it, but symptoms returned within 3 days of discontinuation. Biaxin/Rifampin did not resolve her symptoms immediately like the penicillin did. It has taken 5 months to see pretty good improvement, but this improvement does remain with the discontinuation of rifampin (1 month off now and with a pretty bad cold for the last 3 days as well). I am really nervous about discontinuing biaxin.

Edited November 10, 2011 by rowingmom

[cidermill]

Wow, that is amazing how her symptoms were/are so similar. How wonderful that you see her improving now. So happy for you. So I guess the LLMD's really know the meds to use to treat this. I just took him in today to test for 5 co-infections, including the Bartonella of course, so we'll see what that brings. I meet with our infectious disease dr. on Wednesday. I'm very curious to see what he says. His "brain fog" has disappeared and his physical strength seems to be coming back, but it's the anxiety and nervousness that really concerns me. Poor kid. Thanks ladies for all the support. I hope everyone has a good night.