Help Needed for son (13)

[mom2ty]

Hi all and thank you for the opportunity to post in such a helpful forum,

 

My son Ty (13) was diagnosed with Lyme Disease in October, 2008 and has been on an extensive antibiotic treatment since that time. We've been on Augmentin (about 1 mos.), Minocycline (about 4 mos.), when OCD behaviors started. Bloodwork (ASO) has been tested the last 3 mos., April, March, Feb. (1043, 1482, 1309). Lyme specialist thinks we may be battling PANDAS and switched antibiotic to Zithromax (last 2 mos.). Have called and enrolled in a NIH study being conducted in Bethesda, Maryland. Study is research and not treatment based, so I'm not sure how much this will help us but hope it benefits the ongoing research on PANDAS.

 

Looking for help finding a specialist in the DC metropolitan area who specializes in PANDAS and also if anyone has any knowledge of any link that may exist between PANDAS and Lyme Disease or the long term affect of antibody treatment. Also, are there any good books written on PANDAS? I feel like I've lost my son to these very debilitating illnesses and in the process my family is spiraling downward.

 

Ty has been on home and hospital care from school since September and becoming extremely reclusive. We are seeing a psychologist who is helping with behavioral therapy. Not currently taking any medication or supplements for the OCD/PANDAS.

 

Thanks so much, my heart and prayers are with each of you.

 

Mom2ty

[T_Mom]

"Bloodwork (ASO) has been tested the last 3 mos., April, March, Feb. (1043, 1482, 1309). Lyme specialist thinks we may be battling PANDAS and switched antibiotic to Zithromax (last 2 mos.). Have called and enrolled in a NIH study being conducted in Bethesda, Maryland. Study is research and not treatment based, so I'm not sure how much this will help us but hope it benefits the ongoing research on PANDAS.

 

Dear Mom2Ty,

I am so sorry you have been going through this horrible time--Lyme disease was suspected with my daughter's illness at first, (but negative), I understand Lyme can cause a variety of issues.

 

Can an elevated ASO titer be the result of Lyme disease ???

If you have one, would you mind posting a link to the NIH study--is it the riluzole (sp?) study for OCD?

Has the Zithromax been therapeutic strength for the last 2 months?? any changes with the OCD as a result??

 

We have the names of a few doctors in the Washington area, I will PM you--

T.Mom

[Worried_Dad]

Hi, Mom2ty:

 

Our son (turns 13 in 2 months) has been battling this for 2 years now. Boy, can we sympathize with you: not only does this illness traumatize the afflicted kids, but it haunts the whole family! The local doc who ultimately diagnosed our son originally suspected Lyme, too, but the Lyme tests were borderline. When the ASO titer turned out to be off the scale, he diagnosed our son with acute rheumatic fever with Sydenham's chorea. (Our son's symptoms started with arthritis-like pain that moved from joint to joint, muscle weakness, difficulty walking, then seizure-like episodes of motor tics). Later changed the SC diagnosis to PANDAS. From what I've read, the neuropsychiatric symptoms overlap considerably between Lyme, SC, and PANDAS, so that can't make it easy for the docs. (We're waiting on a 1st appointment with a local pediatric infectious disease specialist because we want to make absolutely sure our son isn't fighting secondary / co-infections.)

 

Our son, too, has been homebound for these past 2 years. Managed to complete 6th grade with a homebound instructor, but he's missed all of 7th grade this year. He, too, has become very reclusive (separation anxiety big-time). He did ok while on prophylactic amoxil for 10 months (not great - things smoldered - but no major exacerbations). Then when his diagnosis changed to PANDAS in June of 2008, the local doc advised us to stop the abx, and things went downhill fast. In August 2008 he had an overnight explosion of "classic" PANDAS symptoms (massive OCD contamination fears, motor and vocal tics, anorexia, urinary frequency, emotional lability, etc.) that abx didn't resolve. We did IVIG in October and things went great for 2 months afterward, then a sinus infection this past Janary set him back considerably. (He's on augmentin for prophylaxis, but we had to supplement with zithromax to clear the sinus infection.) A couple of weeks ago (3/29), he had another major relapse, and we're back in the "nightmare zone" of crippling OCD / tics. Scrambling to try to arrange a 2nd round of IVIG locally and praying it will help again!

 

Haven't found any books devoted to PANDAS, but there are some good articles out there. Many of these articles are cited on threads in this forum.

 

We, too, have started our son in therapy with a psychologist who specializes in OCD and anxiety, but he doesn't want to start CBT until our son has the 2nd round of IVIG: feels it would be "aiming at a moving target." (The psychologists at least seem to "get it" about this disorder, acknowledge that it exists and has to be handled differently than classic OCD or Tourettes!) Our son is not on psych meds currently, either; a local psychiatrist prescribed ativan and zyprexa after last August's exacerbation, and they were a total disaster! Made things much, much worse. We're pretty gun-shy about psych meds now; I'd suggest great caution, very low initial doses, and very slow dosage increases.

 

You're on the right track searching for a local doc who is at least open to PANDAS as a diagnosis. The local doc who diagnosed our son (DAN! doc) was great, but he passed away late last year, and we haven't found anybody else like him yet. If you can find that "local medical ally" you're halfway home!!!

 

Best of luck, and hang in there. Things will get better for our kids and families. They have to!

[dcmom]

worrieddad-

 

Were you able to get insurance to pay for IVIG? If so what diagnosis/ reason did the doctor give?

 

I am considering IVIG for the future. I have a fried whose daughter gets IVIG treatment every month at home for severe asthma issues.

 

I find it so unfair- our kids would probably really benefit from more frequent IVIG. If I took my daughter to the doctor and she couldn't breathe- they would do everything they could. It seems like (most) medical doctors are not interested in helping with mental health issues. And the mental health doctores are satisfied to treat with therapy and psych meds.

[Worried_Dad]

Sigh... Before we went to Chicago for the 1st IVIG with Dr. K, we were told (via our HR Benefits folks and our assigned BCBS coordinator) that we were pre-approved for the diagnosis and procedure codes supplied by Dr. K. We still had to pay up-front, per the surgical center policy. That was over 6 months ago, and we still have not been reimbursed. (BCBS just says the claim is in "Special Processing" but won't say what's holding it up or when it might be processed.)

 

That's the biggest obstacle we faced trying to arrange Round 2 of IVIG. We can't afford to pay up-front again and go to Chicago. We are pre-approved (using the 2009 diagnosis and procedure codes Dr. K supplied) for IVIG and won't have to pay up-front if we get it done locally at an in-network facility. But in our state (MI), an out-of-state doc like Dr. K cannot order the procedure. (He can order the Ig medication, but not the administration of it.)

 

And since our really cool local doc passed away, we have not been able to get any other local doc to order it for us. Finally requested an appointment with a different doc at our Family Care facility and begged for his help. He's supposedly in the process of ordering it for us locally, using Dr. K's protocol, which will be wonderful. (The travel alone would have been tough, given our son's current condition and crippling OCD.)

 

I share your frustration, dcmom. As you said, IVIG is administered routinely (at home) for some conditions, but getting somebody to help arrange this for a PANDAS kid is an uphill battle. Still shocks me that the insurance company approves it, but the MDs won't order it; that seems backwards.

 

Good luck to you!

 

 

worrieddad-

 

Were you able to get insurance to pay for IVIG? If so what diagnosis/ reason did the doctor give?

 

I am considering IVIG for the future. I have a fried whose daughter gets IVIG treatment every month at home for severe asthma issues.

 

I find it so unfair- our kids would probably really benefit from more frequent IVIG. If I took my daughter to the doctor and she couldn't breathe- they would do everything they could. It seems like (most) medical doctors are not interested in helping with mental health issues. And the mental health doctores are satisfied to treat with therapy and psych meds.

[melanie]

I thought dr k didnt think that iv was good for 13yr olds? Im confused did you find it worth while my son is 15

[P_Mom]

Hi,

Your son's Lyme diagnosis...how did they diagnose it? Did he have a positive Elisa or Western Blot? Or, did they diagnose on symptoms?

[P_Mom]

Hi,

Your son's Lyme diagnosis...how did they diagnose it? Did he have a positive Elisa or Western Blot? Or, did they diagnose on symptoms?

[mom2ty]

Hi,

Your son's Lyme diagnosis...how did they diagnose it? Did he have a positive Elisa or Western Blot? Or, did they diagnose on symptoms?

 

 

Sorry that I've been away from the forum for a bit. Enjoyed some time away with my daughter visiting family.

 

Ty's LD was not originally detected through the Alisa or WB test. The initial testing was conducted by Quest Diagnostics (the insurance specified lab). The initial round of testing was reluctantly consented to by the first pediatrician, who we had seen for 16 years, 13 of those with my son - 16 with my daughter. The initial pediatrician wanted to treat his OCD behaviors with an anti anxiety medication without running any tests. Due to the rapid onset of his symptoms, my husband and I neither one felt this was the correct approach. A bit like putting a band-aid on an open wound without determining the underlying cause. We insisted that she perform a Lyme test and after the initial drawing of blood and a botched test (the lab failed to perform the requested testing), the pediatrician's office ended up adding on the Lyme test and used the same blood sample that had been drawn the prior week (not a fresh sample). I'm not sure if this would have altered the results, but in my heart I believe it is a strong possibility. First Lyme test came back with 3 reactive strands (not enough to render a positive test according to CDC standards).

 

After getting an inconclusive test from the first round of testing, compounded with the lack of compassion and understanding from the doctor, we switched pediatricians. We knew that my son had been bitten by a tick in June (we pulled the tick off of him) so we continued to press for a Lyme literate pediatrician. After treating him for a month with Augmentin and not seeing a change in his symptoms, the second pediatrician suggested another Lyme test. At this point, we requested that the blood be forwarded to a Lyme lab (Igenx in California). She then referred us to a specialist (infectious disease doctor). He tested for LD and the test Western Blot came back with 9 reactive IGG strands.

 

Now that we've been diagnosed as having LD we were going through the regime of Lyme treatment, when the psychological symptoms really went haywire. Before knowing about PANDAS I just kept telling friends and family that the Lyme seemed to now be affecting my son nuerologically. Now it seems that we have a possible situation with PANDAS. It is a bit disheartening because as with LD it seems that there are no hard and fast rules/tests for diagnosing PANDAS (also a clinical diagnosis.)

 

I will continue to seek information regarding links between LD and PANDAS. After reading many of the posts here, it seems extremely likely that there is some connection, even if its as simple as just being similar to one another.

 

Hope this helps P.Mom

[mom2ty]

Best of luck, and hang in there. Things will get better for our kids and families. They have to!

 

 

Hi Dad,

 

Thanks for the post prior to spring break...I was blown away by your son's story (it was so familiar to our own). I really appreciated the information you posted and the encouraging words your post brought to me and my husband. I'm not sure how to add friends to my friends list but when I figure it out would like to add you to my list. New to this blogging, I'm slowly getting it!

 

Thanks again and I will continue to check in on your son's progress and update on Ty.

 

Healing wishes.....

 

Mom2ty

[Pezmom]

Hi,

Your son's Lyme diagnosis...how did they diagnose it? Did he have a positive Elisa or Western Blot? Or, did they diagnose on symptoms?

 

 

Sorry that I've been away from the forum for a bit. Enjoyed some time away with my daughter visiting family.

 

Ty's LD was not originally detected through the Alisa or WB test. The initial testing was conducted by Quest Diagnostics (the insurance specified lab). The initial round of testing was reluctantly consented to by the first pediatrician, who we had seen for 16 years, 13 of those with my son - 16 with my daughter. The initial pediatrician wanted to treat his OCD behaviors with an anti anxiety medication without running any tests. Due to the rapid onset of his symptoms, my husband and I neither one felt this was the correct approach. A bit like putting a band-aid on an open wound without determining the underlying cause. We insisted that she perform a Lyme test and after the initial drawing of blood and a botched test (the lab failed to perform the requested testing), the pediatrician's office ended up adding on the Lyme test and used the same blood sample that had been drawn the prior week (not a fresh sample). I'm not sure if this would have altered the results, but in my heart I believe it is a strong possibility. First Lyme test came back with 3 reactive strands (not enough to render a positive test according to CDC standards).

 

After getting an inconclusive test from the first round of testing, compounded with the lack of compassion and understanding from the doctor, we switched pediatricians. We knew that my son had been bitten by a tick in June (we pulled the tick off of him) so we continued to press for a Lyme literate pediatrician. After treating him for a month with Augmentin and not seeing a change in his symptoms, the second pediatrician suggested another Lyme test. At this point, we requested that the blood be forwarded to a Lyme lab (Igenx in California). She then referred us to a specialist (infectious disease doctor). He tested for LD and the test Western Blot came back with 9 reactive IGG strands.

 

Now that we've been diagnosed as having LD we were going through the regime of Lyme treatment, when the psychological symptoms really went haywire. Before knowing about PANDAS I just kept telling friends and family that the Lyme seemed to now be affecting my son nuerologically. Now it seems that we have a possible situation with PANDAS. It is a bit disheartening because as with LD it seems that there are no hard and fast rules/tests for diagnosing PANDAS (also a clinical diagnosis.)

 

I will continue to seek information regarding links between LD and PANDAS. After reading many of the posts here, it seems extremely likely that there is some connection, even if its as simple as just being similar to one another.

 

Hope this helps P.Mom

 

Mom2Ty - How are you guys treating the Lyme? Just curious. My little guy also has the Lyme diagnosis on top of PANDAS and Aspergers.

[mom2ty]

Mom2Ty - How are you guys treating the Lyme? Just curious. My little guy also has the Lyme diagnosis on top of PANDAS and Aspergers.

I'm sorry to hear about you son. We've been treating the LD since October. First round of abx was Augmentin for 30 days in October. Ty didn't respond as much as the pediatrician would have like so she then referred us to the IDD. The IDD prescribed Minocycline 250 mg a day and upped this to 500 mg after about 2 weeks. He discontinued the Augmentin. We were on the Minocycline through January, even though Ty's OCD kicked into high gear. After we complained about the paranoia, anxiety, depression, separation issues, etc. the IDD discontinued the use of Minocycline, indicating that Minocycline in some people can have a negative affect on the nuerotransmitters in the body. We've been running blood work every month, watching Vitamin D levels, ASO titers, white blood count, red blood count, etc. February the ASO titer level was over 1000 and has remained over 1000 in March and April. The last reading has fallen a bit but not as much as we'd like. When the IDD discontinued the Minocycline he put Ty on Zithromax and explained PANDAS to us.

 

I find it hard b/c both Lyme and PANDAS are clinical diagnoses. We can't know if we're still battling LD or if PANDAS is the culprit. If it's PANDAS, how do you know when the PANDAS is in remission and if so, are we still battling Lyme? So many questions, and so few answers. I believe now we're up to 500 mg of Zithromax. Ty has experienced severe stomach discomfort from the onset of Lyme. We are going to change to liquid with the next abx order. Doctor seems to think that the stomach will tolerate liquid a bit better than the pill.

 

Do you have a sense for knowing what you're treating when with all three conditions overlapping? Also, I'm trying to find if there are any studies that have looked at a connection b/t Lyme and PANDAS>. Do you know of any?