nicklemama

We have a Michigan PANDAS forum on Yahoo. GreatLakesPANDAS. Come request membership. I will tell you upfront there are very few resources in Michigan. My son is Dr Ks patient too.

I would add that RLS is commonly caused by low ferritin levels. Guess what uses iron? Babesia.

My son swallows pills. He takes 100 billion(2 pills) of Klaire Labs Thera Detox. I thin it has 5 strains, no strep thermopolis. He also takes one saccromyces boulliardi.

It is not. The strep pneumonia serotypes is testing to see if your child has mounted a response to the HIB vaccines given. Basically its seeing if your child's immune system is working. The tests for strep infection is ASO (antistreptolysin O) and antiDNase B.

Am I understanding this correctly, you paid $600 for a 10 min appt? That is a steep charge. I'm sorry it didn't go well. Seems to be the rule for PANDAS. No respect for the diagnosis.

Texlag- he was tested for lyme they Quest. He was band 41 positive and positive for ehrlichia and anaplasma. Doc thinks he also has babesia. I have not done Igenex testing. May do that after treating for the coinfections. I'm going back and retreading that article. I did not catch that about Lyme and tubulin. The Cunningham paper i read says high tubulin and CamK is associated with SC. DS CamK was not SC range but he's had adventitious movements. If he gets them again, I'm taking him to the neurologist for documentation. Dr K saw them. I have them on video.

I did notice it was different. What interested me was the talk of autism being related to autoimmune neuropsych disorders, which have raised anti-gangliosides. Hello PANS. The call for more research was there too.

My 60 lb son took 25 mg once a day for 5 days.

Very interesting.

The symptoms we've seen relief from is better sleep and less hyperactivity and restlessness during the day. My son was sleeping all over a full sized bed and night waking. It has taken four months of low dose supplementing to raise ferritin levels to just barely within normal levels. It has not affected OCD or irritability.

I should have said, I would not supplement without guidance from a dr. DS gets blood draws every other month and is being strictly supervised by a doctor.

No info but I can tell you this is a nearly identical result as my DS. We had it done in the study back in 2010. Tics and adventitious movements have never been his main presentation of PANS. He had blood drawn for the study about 6 weeks after starting biaxin for PANS. He was not ticcing when blod was drawn but he had been ticcing quite badly when diagnosed a little more than a year after the symptoms started.

I use Klaire Labs P5P, cut in half, half 30 min before breakfast and dinner. That is how it was recommended for DS. He's been taking it for about a 1.5 yrs now. Tics are not a major issue. He occasionally has transient mild eye tics that seem to go with illness. His main presentation is anger, irritability, OCD. He had chorea last summer that was cleared up with a 5 day steroid burst. He's got a virus now and is rolling his shoulders a bit. I've seen nothing I could relate to P5P. Everything I've started him on has been started one at a time.

Ferrochel iron chelate is iron bisglycinate. DS tends toward constipation and we've actually not had any issues with constipation since starting it, not that I'm saying its helpful for constipation. It certainly has not caused or worsened things. In actuality, my son is better than he has been in a very long time. My sons low ferritin was low for 3 yrs and the docs we consulted said to ignore it. Our new doc thought he needed to supplement and felt we would not see problems with it and would potentially see benefit and she was right.

Yes. DS was 14 and then 7. He is currently on Ferrochel iron chelate 27mg by Designs for Health. Got it from biomed doc but it can be ordered online. It's a very gentle form of iron and a low dose to slowly increase ferritin levels. We retested two months after starting and DS levels are now in the low normal range. He'll be taking it at least until we get him in a good mid range. I highly recommend this form of iron. We've seen no gastric side effects and his sleep, restlessness and restless legs at night are much improved. Have you checked for babesia? It uses iron and causes low ferritin. I think ehrlichia or anaplasma may use iron also and my son is positive for both.

My sons was high and he was tested after he'd started abx and was doing much better. His was 144 and his tubulin was very high and D1 high. The cutoff at that time was 130 but the ranges have changed since the new lab opened up, so comparing is a little more difficult.

I second the notion to go to a walk in clinic if her doc doesn't see the light when presented with idsa guidelines. And make an appt to see a llmd.

Local biomed doc who is learning and listening to PANDAS radio. We see ped only for well visits or illness. She prescribes nothing nor has she taken any interest in PANDAS. You'd think after 4 yrs she'd do something. I'd switch if I knew of a good ped who would be open minded. Biomed doc does not take insurance. I submit it and get back 60% of the cost. She does regular lab work too thru quest so its covered.

Another no herx here. We did 150 mg for a week, then added 150 each week until we reached 600. Been doing 600 for 2 months. DS doc is considering raising the dose again when we see her in Aug. With insurance, I'm paying $9 plus shipping each month.

Started enhansa three months ago or so. I've been able to get DS off Motrin and he's doing pretty well. I recommend trying it. We started out low and worked our way up to the current dose of 600 mg. DS doc wrote a prescription for it and our insurance pays for it, less our 20% copay.

I can't speak to pyrolurria. My sons biomed doc says you need to keep omega 3&6 in balance. DS takes 1000 mg of a good omega 3 every day and 1000 mg omega 6 M-W-F. He's doing really well now, if the cold he caught a few days ago doesn't set him back.

I'm in.

This is not a peer reviewed research journal.. This was not a double blind study. They can't even tell you how many in the study ate oily fish vs took supplements, how much of the omega 3s the subjects took, what other supplements were taken, what other health issues, if any, the participants had. My take on it was the participants all had prostate cancer and they were questioned about omega 3 intake. A poorly designed study that I would not put a great deal of faith in unless I could see the actual research.

When explaining your daughters coming and going emotional outbursts and how they've always been there because they've been coming and going for a long time, are you aware that PANs waxes and wanes? Early on it may appear and disappear. Episodes may get longer, more frequent and worse without treatment. I'd be willing to bet PANS started in your daughter a long time before the tics.

So sorry to read this. DS was suicidal on Celexa at age 6. He'd had no exposure to the idea. This was before diagnosis of PANS. We took him off Celexa. Not seen suicidal behavior since. I'd start with examining what abx she is on. If its not treatment dose, I'd get her on treatment dose ASAP. If she's on treatment dose, I'd do some labs and switch abx. Consider Lyme and company. I would stay away from the psych ER or any ER as long as possible if you feel you can keep her safe. We've been to the psych ER. They basically tried to pin his issues on us and when DS was openly truthful about his behavior and they'd talked to his therapist and psychiatrist, he was sent home without so much as a suggestion, other than to let his psychiatrist know he was inflexible and rigid in his thinking. In other words, he was ASD. I understand how scared and upset and worried you are. Try and hang in there.