How can I help my daughter? Lyme & PANDAS?

[connticks]

My 7 year old daughter has Lyme and is being treated by my LLMD. In addition, her last blood test showed a high ASO and my LLMD said that means she could additionally have PANDAS. She felt like she could justify the LYME treatment more now due to the PANDAS because perhaps the insurance companies will not question the long term antibiotics? I am not sure I understand exactly. We go back this week for a follow up but in the meantime I am trying to figure out how PANDAS is treated.

 

My daughter's symptoms are mostly related to her mood. She is VERY difficult; she has tantrums like a 2 year old; she is almost impossible to reason with about anything; she is soooo defiant; she is generally in a bad mood, unless she is doing something she loves, like swimming or playing with a friend. Her behaviors make each day a challenge. However, once in school she is fine, she excels there and her teachers insist that she has excellent behavior.

 

She has been this way for as long as I can remember. She has had motor tics recently which change in sound every few weeks. She whines more than any kid I know. She can be downright MEAN to me and her siblings. I put her in time out when she needs it, which results in her wreaking havoc in her room and ending up with a headache from crying so much.

 

She can be very sweet and adorable but these behaviors make it so stressful. I know they are NOT in her control and I feel so bad for her.

 

I believe she definately has LYME and perhaps the moods are related to this or to a coinfection. But now that I have learned some about PANDAS, she seems to show PANDAS symptoms too.

 

How is PANDAS treated? What can I do to make each day easier? I would appreciate any feedback from someone who can relate to this. Thanks,

[Bill]

My 7 year old daughter has Lyme and is being treated by my LLMD. In addition, her last blood test showed a high ASO and my LLMD said that means she could additionally have PANDAS. She felt like she could justify the LYME treatment more now due to the PANDAS because perhaps the insurance companies will not question the long term antibiotics? I am not sure I understand exactly. We go back this week for a follow up but in the meantime I am trying to figure out how PANDAS is treated.

 

My daughter's symptoms are mostly related to her mood. She is VERY difficult; she has tantrums like a 2 year old; she is almost impossible to reason with about anything; she is soooo defiant; she is generally in a bad mood, unless she is doing something she loves, like swimming or playing with a friend. Her behaviors make each day a challenge. However, once in school she is fine, she excels there and her teachers insist that she has excellent behavior.

 

She has been this way for as long as I can remember. She has had motor tics recently which change in sound every few weeks. She whines more than any kid I know. She can be downright MEAN to me and her siblings. I put her in time out when she needs it, which results in her wreaking havoc in her room and ending up with a headache from crying so much.

 

She can be very sweet and adorable but these behaviors make it so stressful. I know they are NOT in her control and I feel so bad for her.

 

I believe she definately has LYME and perhaps the moods are related to this or to a coinfection. But now that I have learned some about PANDAS, she seems to show PANDAS symptoms too.

 

How is PANDAS treated? What can I do to make each day easier? I would appreciate any feedback from someone who can relate to this. Thanks,

 

 

My son - after a very long road - started with Pandas and then he tested positive for Lyme, bartonella. We eventually came to Lyme when the PANDAS treatments were not working. My understanding is that Lyme treatments should also treat the PANDAS though I guess this depends upon the treatment route taken. My LLMD believes that bartonella is responsible for OCD and behavioral issues - just like strep. It is very hard for any of us to really know what is causing which symptoms.

 

I have no real answer for how to make each day easier. Keeping to a routine helps. Avoiding situations that are likely to invoke negative behavior helps. Picking your battles, helps.

 

On the positive side, my son does not remember the times when he was out of control. We will be forever scarred from the experience but I am thankful that he will not have to deal with any regrets (if his sister doesn't keep reminding him!).

 

Good luck.

 

bill

[nicklemama]

My DS7 had very similar behaviors as you describe in your daughter. He has PANDAS and his initial presentation was anger, irritibility, rage, severe separation anxiety, then came the ocd's, of which he had many. He also developed sensory processing disorder caused by PANDAS. Finally came the tics. He had so many things going on I can't possibly list them all and keep this short. Like your daughter, he behaved very well at school, however, he had a huge drop in social skills. He basically kept to himself. His ocd's were a large part of it. We could NOT reason with him. The treatment that got him to where he is today is long term antibiotics and then intraveneous immunoglobulin therapy. You'll find many parents on here dealing with both PANDAS and lyme. They will be your best source of information.

 

One of the best things I did was get the book The Explosive Child by Ross Greene. It really helped us learn to deal with and manage our son to try and keep the explosions to a minimum.

Edited August 28, 2011 by nicklemama

[LNN]

I was about to write nearly everything Bill said. Check for bartonella, which in my experience, shares a majority of symptoms with Pandas, only has a different bacterial trigger (bartonella v. strep). A combo of abx is usually used for bartonella - at least one intra-cellular and one extra-cellular. We used zithromycin+bactrim+augmentin and then later zith+bactrim+omnicef for 8 months total. We dropped bactrim two months ago when bartonella symptoms seemed to be gone (no tics, no OCD, no more asymmetrical swollen glands). Now we're focused on "just" lyme. I initially thought DS9 only had Pandas, due to strep exacerbations, but he hasn't had strep in almost 2 yrs since a T&A (and continued antibiotics).

 

I'm curious about your LLMD's thoughts that a Pandas dx would make it less controversial to prescribe antibiotics. Your screen name makes it look like you're in CT, which has a law allowing doctors to prescribe long term antibiotics without legal consequences or second-guessing.

 

Anyway, to your question, combo antibiotics for lyme would also help Pandas. Some on the forum also use IVIG, which is not a common treatment in the general lyme community. But its efficacy is very individual, helping some and not helping others. I would give the abx time to work before deciding on any other course of treatment.

 

The other treatment I highly recommend is cognitive behavior therapy (CBT). Regardless of which bacteria is the trigger, CBT can have a big impact on your child's behavior and your family dynamics.

[beeskneesmommy]

Thank you for this info. DS (almost 5) started with classic Strep:PANDAS 2.5 years ago, had an acute episode last Sept. after a tonsillectomy while strep infected. We have been up and down, gradually getting better on 2x D Augmentin from 9/10-1/11, then switching to 2 x D Cefdinir from 1/11-7/11. We saw Dr. Bouboulis for the 1st time in late July because DS started to have more dramatic PANDAS presentation intermittently after a fever in early May. He strated a regime of Augmentin 2 x D and Azith 1 x D on 7/27. After initial herxing, he has been completely asymptomatic for almost 2 weeks now without a glitch. Last week I had a teleconference w/Dr. B who informed me that his IgeneX results found Lyme and Bartonella (not to mentiont he Myco that we knew he had last Oct. with a bout of walking pneumonia). I did not know that Bartonella influenced further OCD and irritibility symptoms. This is good info. Hopefully, we are kicking it all out and will not have to go on to IVig or PEX. He's just so little!!

 

Warm wishes and positive Chi to you all -- Kath

[connticks]

Thank you everyone for the replies. It has been an especially difficult time with my daughter over the past week; I am not sure why, but she has been truly defiant and rotten, for lack of a better word. She also will start to cry and say "I feel sick, Mommy," and this just breaks my heart because she clearly IS sick.

 

LLM - I am actually in NY, but my screen name is "Connticks" because it was Connecticut ticks that gave me Lyme and coinfections many years ago (and I passed these on to my kids). My LLMD is wonderful but she is very careful with prescriptions because she treats kids with lyme much like Dr. J does, and she has had red flags go up several times with the insurance companies for how she treated lyme patients. It is horrible how these doctors cannot treat patients properly without fear of losing their licenses.

 

I do believe my daughter has Bartonella also as I know her symptoms match with bart, and she has had skin rashes randomly and bart "streaks" in the past.

 

Thank you for your help, I really can't tell you how helpful it was.