Need advice again with 7 y/o sons tic

[nurseg]

Hi everyone,

 

I really need some help on what thoughts you have regarding my 7 yr.old son. I've posted his history before, but just a refresher.. He started having an intense neck jerk two days after being diagnosed with strep. He never had any tics before (or strep that I know of), and has never had issues with behavior, school, sports, ect. He has always been healthy with the exception of his first year of life, when he had multiple ear infections. He has always been a sensitive kid, but since all this started he has shown some anxiety/OCD symptoms.

His first titers 5 days after the strep were normal. His pediatrician sent us to a ped. neuro, who thought he had TS, PANDAS, or Sydanam's Chorea. Put on Tenex for 4 wks, which helped reduce the tic about 70%. Thankful to have something to help, but I know this only maskes the tic. I want to know why it's there, and treat the cause. Between follow-ups to the neuro my son got a stomach bug and a sinus/ear infection,and was put on 10 days of Suprax. This, along with the Tenex, almost completely resolved the tic for the 10 days on the ATB. At f/u with ped. he then felt my son had PANDAS, and put him on Pen VK. No change after six wks of this, and started twirling his hair and popping his jaw, which were new.

Seen a DAN after that was recommended on this site, and he felt my son had PANDAS. Put on Zithromax for 4 wks with no change, maybe some worse as the neck jerk was mainly single jerks and now most are double, triples, or more. We seen him today and he thinks now he's not PANDAS. He did more labs(titers included), and said he didn't want to continue the Zith unless his titers are high. Problem is he doesn't want to say what he thinks the tic is related to. Would rather the neuro determine this??? He wants us to send off urine samples for Microbial OAT profile , Porphyrins, and Pterins.

I'm thankful my son's case is milder than some I've read about here, and that so far the docs have all been trying, but I can't help but feel the correlation of the strep with sudden tic onset is not just a coincidence. Am I crazy to think this? Any thoughts on any other diagnoses? Should I proceed with the urine testing as it's fairly expensive, even with partial insurance coverage. My son has never really had allergies/asthma problems? Any supps that could help?

 

I apoligize for being so long. Thank you all. This site is the only thing keeping me sane. Glenda

[Pudgeo]

Sorry to hear things are not better at your house...

I always knew there was a correlation with my sons symptoms and his sudden onset of panic/anxiety...The Dr's didn't believe me until they ran the PANDAS/OCD panel and it showed high antibodies. Has your DAN recommended this test?

 

What I am now realizing is it's not easy to get rid of this...My son is on LDN cream too which I had to stop & restart at a lower dose because it was giving him headaches. It's supposed to help modulate the immune system.

We are trying acycolvair an anti-viral right now. ALot of Dr feel that viruses can linger in the body and help contribute to mess up the immune system,

 

I find interesting that the azithromycin didn't help..it seems to have a good record for helping and after my 30 day trial of antiviral I want to try it...

I don't know if your Dr would look into IVIG? We have had 2 and no improvement..but I was told it would take 3-4 to help my son...all this waiting is driving me crazy! I seriously might have to put my son on an anti-psychotic med in the meantime..his OCD is horrible.

I guess everyones kid is different and we all have to find the right answer...Sarah

P.S I'm sure I have spent at least $5000. of my own money on Dr visits DAN! ,testing & supplements and nothing is helping!

[dut]

Hello

 

Did wonder if you were not seeing improvement as titers can still rise after the infection has gone or maybe it would be worth trying suprax again.... I've read that there aren't supposed to be any Pen resistant strep A but who knows... good luck

[ilovedogs]

Sorry to hear things are not better at your house...

I always knew there was a correlation with my sons symptoms and his sudden onset of panic/anxiety...The Dr's didn't believe me until they ran the PANDAS/OCD panel and it showed high antibodies. Has your DAN recommended this test?

 

What I am now realizing is it's not easy to get rid of this...My son is on LDN cream too which I had to stop & restart at a lower dose because it was giving him headaches. It's supposed to help modulate the immune system.

We are trying acycolvair an anti-viral right now. ALot of Dr feel that viruses can linger in the body and help contribute to mess up the immune system,

 

I find interesting that the azithromycin didn't help..it seems to have a good record for helping and after my 30 day trial of antiviral I want to try it...

I don't know if your Dr would look into IVIG? We have had 2 and no improvement..but I was told it would take 3-4 to help my son...all this waiting is driving me crazy! I seriously might have to put my son on an anti-psychotic med in the meantime..his OCD is horrible.

I guess everyones kid is different and we all have to find the right answer...Sarah

P.S I'm sure I have spent at least $5000. of my own money on Dr visits DAN! ,testing & supplements and nothing is helping!

Hey Pudgeo,

My ds had some very bad OCD for a while but I started him on a supplement that really helped ALOT! Our naturopath works with NeuroScience and they have a product called Kavinace, it has done wonders for us. Here's the website, www.neurorelief.com, and you should be able to find a list of doctors who distribute their products. I have not seen a reduction in tics, though, but the OCD was soooooooooo bad so I'm just happy that he has relief from it for now.

 

On the PANDAs front here on this thread: I have read that you may have to try MANY different types of antibiotics to help the body heal. Unfortunately, the money spent can really add up. My ds has not been diagnosed with PANDAs but I'm considering getting his strep titers checked just in case b/c he started the OCD stuff after a strep infection this winter while the tics had started a few months prior.

Bonnie

[nurseg]

Sorry to hear things are not better at your house...

I always knew there was a correlation with my sons symptoms and his sudden onset of panic/anxiety...The Dr's didn't believe me until they ran the PANDAS/OCD panel and it showed high antibodies. Has your DAN recommended this test?

 

What I am now realizing is it's not easy to get rid of this...My son is on LDN cream too which I had to stop & restart at a lower dose because it was giving him headaches. It's supposed to help modulate the immune system.

We are trying acycolvair an anti-viral right now. ALot of Dr feel that viruses can linger in the body and help contribute to mess up the immune system,

 

I find interesting that the azithromycin didn't help..it seems to have a good record for helping and after my 30 day trial of antiviral I want to try it...

I don't know if your Dr would look into IVIG? We have had 2 and no improvement..but I was told it would take 3-4 to help my son...all this waiting is driving me crazy! I seriously might have to put my son on an anti-psychotic med in the meantime..his OCD is horrible.

I guess everyones kid is different and we all have to find the right answer...Sarah

P.S I'm sure I have spent at least $5000. of my own money on Dr visits DAN! ,testing & supplements and nothing is helping!

Hey Pudgeo,

My ds had some very bad OCD for a while but I started him on a supplement that really helped ALOT! Our naturopath works with NeuroScience and they have a product called Kavinace, it has done wonders for us. Here's the website, www.neurorelief.com, and you should be able to find a list of doctors who distribute their products. I have not seen a reduction in tics, though, but the OCD was soooooooooo bad so I'm just happy that he has relief from it for now.

 

On the PANDAs front here on this thread: I have read that you may have to try MANY different types of antibiotics to help the body heal. Unfortunately, the money spent can really add up. My ds has not been diagnosed with PANDAs but I'm considering getting his strep titers checked just in case b/c he started the OCD stuff after a strep infection this winter while the tics had started a few months prior.

Bonnie

 

Thanks for all the advice. I really appreciate it. Our DAN ordered alot of labwork yesterday. I know the titers were rechecked, but not sure what else. I'm not familiar with a PANDAS/OCD panel. What does this consist of? I'm really hopeful the labs will show something, and luckily our BCBS insurance pays all of the DAN visits except the $15 copay. He did say we could try a steroid burst if the titers were normal. The OCD part (so far) is not as much of a problem as the neck jerk. He had the worst one I've seen last night. I had tucked him in, and was reading a story when he bolted up in a sitting position and jerked back 6 times in a row. Are there any particular supps for mainly tics? We've tried epsom salt baths and kids calm at the initial onset for 3-4 wks without a change. I'm just so frustrated that I can't do more to help my little boy. Our neuro mentioned IVIG at our first visit, but said this was a last resort. Our ped. said we couldn't use the Suprax long term, so that's out. We also saw a professional councelor yesterday for the first time b/c I'm worried mainly about the social aspect of this problem. Kids today are so mean, and Austin is so sensitive. I just wanted him to be prepared in case someone did say something, and how to react to them. She felt he had alot of anxiety issues that he was keeping inside, She said his neck muscles were tight and she felt him clenching his teeth while feeling around his neck. She wants us to check with the dentist about TMJ, as he had some tenderness too. So, I feel like everyone we see has different answers to my same questions, and I'm constantly worried I'm going to give Austin a complex about seeing these different doctors so often. I just try to remember how lucky I am to have my little man with me, as I know it can always be worse.

 

Thanks again for listening, Glenda

[Chemar]

Sorry to hear things are not better at your house...

 

 

 

We are trying acycolvair an anti-viral right now. ALot of Dr feel that viruses can linger in the body and help contribute to mess up the immune system,

 

Hi Pudgeo

have they dx your child with a viral infection as well?

Strep is a bacteria and so needs antibiotic not antiviral?? Acyclovir, as far as I know, is antiviral in that it stops the reproductive cycle of the virus, hence preventing symptom outbreaks. It makes the virus dormant.

 

however, with streptococcus being a bacteria not virus....how does your doc feel this will help???

 

 

 

Nurseg, so sorry your child is going thru a waxing phase.

Are you giving extra magnesium? (at least 400mg per day) that made all the difference for my son when he had "whiplash" tics of neck. also maybe try rubbing the epsom cream into neck? also a good NUCCA chiro can help much to ease the tensions in muscles and realign the cervical vertebra which get put out with those tics, so contributing to more tics. Its a cycle I know well!

 

doing the food allergy tests as well as maybe pyroluria, metals, candida etc is maybe worthwhile as well

 

I sure do hope things settle as I know how scary those neck tics are.

[faith]

nurseq,

have you explored any other types of treatment besides the PANDAS angle? Is your son on any other supps now?

 

With the head jerking, I can tell you that is quite an upsetting one because it is so obvious. But if it makes you feel any better, it seems that one does resolve after a time. My son has had two episodes of that and they both lasted about 1-2 months. There may be something triggering a worsening of his symptoms, and it may be other things besides the strep connection. With all those antibiotics you have tried, is he on probiotics at least too?

 

Faith

[nurseg]

nurseq,

have you explored any other types of treatment besides the PANDAS angle? Is your son on any other supps now?

 

With the head jerking, I can tell you that is quite an upsetting one because it is so obvious. But if it makes you feel any better, it seems that one does resolve after a time. My son has had two episodes of that and they both lasted about 1-2 months. There may be something triggering a worsening of his symptoms, and it may be other things besides the strep connection. With all those antibiotics you have tried, is he on probiotics at least too?

 

Faith

 

Chermar and Faith

Thanks so much for your input. I have thought about the chiropractor, but have not tried it. I'm not sure how aggressive they are with kids. I would be uncomfortable letting them manipulate Austin's neck to much. With the ones you've used do they manipulate much? How often does your son go? Does insurance usually cover this? I haven't tried any magnesium other than the Kids Calm (powder that he hated to drink, even in juice), and the epsom salt baths. Neither seemed to help, but we are trying an epsom salt bath tonight. Are there other forms of mag in pill for kids, or is there a certain mg to start with. I'd like to try some supps, but have been unsure of what to use and the proper dose for his age/weight(7yrs-approx 70#).

We haven't had any other treatments outside of the ATB's, and the Tenex. The neurologist mentioned Tourette's, but there is no documented family history of this. I do however, knowing a little more about tics now, think there may be some tics within our family. We did give him a probiotic while on the Zithromax, and milk and yogart with probiotic cultures in them.

I'm going to call tomorrow and check on his labwork. Hopefully, the titers are back. If they're not elevated do you guys think he could still be PANDAS? I've read of some cases where the titers weren't elevated? I just can't get past all these major changes starting after this strep. If the titers are normal, I'm going to request a steriod burst. Anyone seen improvement with this? Is it more a temporary relief?

 

Glenda

[Pudgeo]

Glenda,

Titers do not have to be elevated to indicate PANDAS..We have never done a steriod burst..My pedi did put my son on 5 days of prednisone and it didn't seem to help.

WE are on a ton of supplements and nothing is helping..omega-3 is supposed to help. We are on an anti-viral to try that angle..so far nothing has worked. sarah

[nurseg]

Glenda,

Titers do not have to be elevated to indicate PANDAS..We have never done a steriod burst..My pedi did put my son on 5 days of prednisone and it didn't seem to help.

WE are on a ton of supplements and nothing is helping..omega-3 is supposed to help. We are on an anti-viral to try that angle..so far nothing has worked. sarah

 

Hi Sarah,

We heard from our DAN's partner yesterday regarding the labwork. His AntiDNase b was "normal" at 168 with the cut-off at 170. I explained to her this is an increased number from the less than 50 range from his titer in March. She said this doesn't confirm or exclude PANDAS, but did want Austin to continue his Zith regimen until Dr. Kalb returns on Friday. She also called him in a Prednisone taper he'll start tomorrow.

She also said he had a positive Epstein Barr test, but no acute Mono. She mentioned some kids get tics after viruses, and this could possibly be related.This just confuses me more, and gives more questions that I'm sure will get different answers.

We started epsom salt baths Thursday, and I have noticed(?maybe) some help in the tics. He has slept through the night every night since re-starting these(usually ends up in the bed with me and his dad 3-4 per wk).

How much of the omega 3 do you start on in children, or is there a childs version? Anyone with any additional input would be much appreciated. Glad the site is back up, almost went into panic mode.

Thanks, Glenda

[Chemar]

Hi nurse

 

PITANDAS is a condition similar to PANDAS, but where PANDAS is strep induced, PITANDS is general microbes

 

my son also tested negative to mono but positive to epstein barr and we did see associated waxing of symptoms

 

The monolaurin, olive leaf, garlic, honey and uno de gato(cats claw) are natural antimicrobials that help