On to specialist? Where? Also homeopathy quest?

[Kimflow]

Hello,

 

Yesterday, I took my son with autism to get a reculture. It had been 5 days off of Zithromycin. Rapid negative and waiting on culture with sensitivity which will take up to 5 days to get back. He is still demonstrating the tics and choreiform movements that developed WHILE ON zithromycin. Also has kept the OCD and auditory sensitivity and tactile sensitivity. While in the pediatrician's office, she saw some of his remaining choreiform movements and tics. Basically, she sent me off to a specialist...one she couldnt' recommend. She said just call phone numbers and ask. She also irritated me as she said go to specialist in autism.....I tried to explain to her that my son had autism before he had PANDAS. Like his choreiform movements related to his autism, not the strep throat he had before they developed. So many people use autism as an excuse instead of a clue to poor immune function.

 

So now I guess I call for appt. with Dr. Latimer as she is an hour away from me. Has she been helpful to you? I read on here she has wait until June. I don't know if I can stand this until June. Our whole family is reeling from this. First you lose them to autism, get them back and he and family's life changes for the better and now strep and PANDAS steals him away again. yes, I am havign a pity party. I'll pull myself out of it and fight as I did with the autism. Don't worry.

 

I have a DAN doctor familiar with PANDAS and using IVIG as well. he sent me homeopathic strep. I moved Ryan up to 2 drops yesterday adn last night, he had horrible exacerbation of anxiety related to tactile which turns into OCD. If I touch his shoulder for example, that touch sends him into high pitched SIT DOWN SIT DOWN and then I must physically sit him down and say sit down. This can be head down, leg down, fingers down. Anyhow, I think I'll stop homeopathy. Last night was horrible for entire family.

 

The immunovir the DAN recommended is supposed to be coming. Scared about that too as I read it made so many people feel worse. These were CFS women. I haven't seen much about it used with PANDAS but I guess the theory is to modulate immune system.

 

Big deep breath. so glad to have this forum to talk to. Thanks,

Kim

[PowPow]

Dr latimer is great. we travel about an hour and a half to see her. I cannot tell you how many times I have so thankful to live so close to her. She has all options.available to her for PANDAS treatment. Call right away, and tell them you live so close, in case they get a last minute cancellation.

My kids have had IVIG,steroids and pex with her . You have a long road ahead, but you can do it.

Are you in virginia? There is a support group in northern virginia that has many parents of autistic kids who are looking into PANDAS for their kids.

[Kimflow]

Thank you for replying.

 

I called the Latimer office already....can't get in until August 15th. Told them I live close and can come within 90 minutes of a call.

As I type this, my son has come over to me for a hug while he is experiencing choreiform movements. this all can easily bring me to tears.

 

Please let me know how to contact the Virginia biomed group that is looking into PANDAS for their children. I am grasping at straws at how best to proceed now in the 5 month wait. You can email me Kimberlyharding@comcast.net.

 

I am considering calling the DAN doc. to prescribe the zithrom. weekly prophylaxis in the interim as he does seem to worse today with all that I described and his extended release effects of the zithro. ran out yesterday. The culture won't be back before Friday and even if it comes back negative, something is making his symptoms worse since off antibiotics.

[PowPow]

I just emailed you!

[Stephanie2]

If you don't mind me asking, who is sending you homeopathic strep? If it is not coming from a reputable homeopathy pharmacy (we use Helios in England) then it is probably not any good. Also, any time one is using homeopathy, it really needs to be managed by a reputable homeopath who specializes in pandas. I have never seen that type of reaction from a strep nosode (and there are three pandas people in my house, we use it a lot!).

 

Regarding getting your son back from autism and then losing him to pandas, this is actually a very common occurance. This happened to my youngest son when I first started biomed. It was really horrible. Both of my sons are doing really amazing now with classical homeopathy in terms of autism and pandas. Our lives are so much easier.

 

I hope you are able to get things settled down, it sounds really tough for you right now

[Kimflow]

Stephanie,

 

The DAN doctor from Florida sent the homeopathy to me. I stopped it. I couldn't tell whether it was causing issues or not. Would you share with me the name of the doctor who is doing your homeopathy?

 

He is also sending me Immunovir...is that a dud too? It is supposed to be an immunomodulator and antiviral (I guess less viral exacerbations of PANDAS symptoms).

 

Yes, I am beside myself as is my husband and my son's sister. Since we got him "back", we have always felt this would be our worst nightmare and now it has happened. But I just keep trying to say it could always be worse. We haven't gone back 8 years, only about 3 as far as sensory issues, OCD, etc. and we have added in some choreiform like movements/tics. It coudl always be worse...I am just glad he has retained what language he does have.

 

I will post a longer update on my son but the short version is:

the throat culture taken 5 days off of zpack came back negative. The tongue protrusion tic left about 1st day on antibiotics.

he still has some eye squinting, alot of uncontrollable head/neck/truncal movements but now I question if some of them have morphed into OCD type movement/behaviors. He has a tendency to attach his anxiety to different words/memories. Why would uncontrollable movements be any different?

It is strange as much of his OCD/Anxiety centers around motor movements as well as comments on what he is doing/asking him to do something causes OCD/anxiety responses/behaviors. It has been this way for so many winters but I never knew. It was just the actual "catching" of strep throat that has caused this huge exacerbation and clued me in. He gets so very upset as I am trying to help him through some of the rituals. Yesterday, had to pull over twice as he had to have me "help" him complete a motor movement...he is so upset and crying during it.

 

He also has a phrase he says probably 20 times or more a day now that we all have memorized. It makes little sense and he says it out loud out of the blue. I suppose this could be intrusive thought. My son can't tell me.

 

He is on prophylactic zith now (doctor gave me 1 250 mg a week of Zithromycin....I tried for longer duration but only got the 1Xweek) until I figure this out. bloodwork tomorrow. Latimer visit in August. Not sure if I should go to some other doctor sooner but Dr. Latimer is only about an hour away. Nice to have a doctor close to see and if necessary, receive treatment.

 

Kim

[Stephanie2]

I have a feeling I know the DAN from FL you are referring to...south florida? Anyway, I have to go up to very high potencies of strep nosode to clear out strep here, I doubt what he sent you even comes close.

 

As far as Immunivir, I have no experience with it. I HAVE used spironolactone and LDN which helped but not nearly as well as what we are doing now.

 

Our homeopath is Angelica Lemke, ND (she is a natural doctor as well as a certified classical homeopath). www.asdhomeopathy.com

She works with Pierre Fontaine