nicklemama

I started New Chapter lemon balm about a 6 wks or so ago for me! It's working. I have no experience with SSRI's but this was a last ditch effort to avoid them for me. I take one morning and evening. I am sleeping soundly through the night and I am much less edgy, irritable and quick to anger. Like an SSRI, it takes a while for the effects. It's not immediate. I wasn't sure it was going to work but decided to go a month before discontinuing.

DS has always been worse after IVIG before things get better. We've done it twice.

I am so sorry. It can be a he$$ hole when kids are in that place. Here's my recommendation. Check for infections and add or change abx to get things back to a better place. Give Motrin 3x a day until things improve. Lastly, if you are considering psych meds, I recommend trying lamictal. It has anti anxiety properties and its glutamate modulating. You give it twice a day and it has a good safety profile and less side effects than other choices. The downside is it takes weeks to get to a therapeutic level due to the fact that you have to slowly titrate up due to a slight risk of allergic reaction. My son was on lamictal for more than a yr. We started it 6 months before his PANDAS dx and it helped.

Low ferritin can cause hyperactivity and poor sleep due to restless leg syndrome. DS was all over the bed during the night. He had ferritin levels of 14(where 22 was lowest normal) for 3 yrs. We've been supplementing for about 6 wks. His retesting is in another month. Can't wait to see if I'm right. His doctor told me iron was essential in having a healthy immune system. Dr K and Dr T said not to supplement because it could be feeding bacteria and we might get increased symptoms, so I left it alone all these years. We know we are most likely feeding his babesia but we've seen no flares or worsening of his symptoms. He's actually in a pretty good place right now.

They are looking for both. My son is PANS and we've already done the interview at my home. I know Mary Crombez personally. She lives nearby. She is a member of this forum and occasionally posts. She is professional and caring and will maintain confidentiality.

My son was hyper but managed to keep it together in school and never get in trouble. He's also an excellent student. How's he's managed, at times, is beyond me. Abx helped a lot but not completely. What has given additional help is working on getting his very low ferritin levels up. A new doctor we started seeing a few months ago wanted to treat it and gave me a very gentle iron in a different form called Ferrochel. DS is sleeping better. I've been able to lower the melatonin. He able to sit in his chair at dinner better. Overall, we are encouraged by the improvements we've seen. If you haven't checked ferritin, iron sat levels, I would encourage you to and treat under a doctors care. I was told by two PANDAS experts not to treat the low ferritin. His new doc told me she's being seeing a lot kids with low ferritin, they've all had babesia and they are better when the low iron stores has been addressed. She actually asked me if the recommendation not to treat low ferritin was for a specific reason or because the other docs didn't really know how to address it. My son has babesia but we haven't started that treatment yet. Babesia uses iron.

We are another family getting treatment out of the mainstream. DS's PANS doc, Dr K is mainstream. The doc treating coinfections and methylation is not.

One more ditto for getting a PANDAS knowledgeable doctor to guide the treatment of your son. Most doctors don't know enough about to form a proper treatment plan. I'd also recommend ruling out Lyme disease and its coinfections. Two and one half years after diagnosis of PANDAS, we found our son has ehrlichia, anaplasma, and babesia infections which are currently being treated.

The light I can shed is I should not post at bedtime lol. I meant folate but my brain was already asleep.

He has high copper on blood tests and did have normal zinc. Now the zinc is high from me supplementing. I decreased zinc to MWF and found a 30mg tablet that I start today.

Yes. Shows past exposure but nothing active.

I read the book months ago. Like PANS kids, if it weren't for her parents, she would not have been properly diagnosed. Pandasphilly- when I was reading the book I kept wondering why our kids cannot get the treatments that Susannah Cahalan received. That treatment is now recognized as standard treatment. It's a "new " disorder. Here our kids still are struggling for treatment and insurance coverage and acceptance. Doesn't seem quite right.

I started supplementing my son with 50 mg of zinc. He has high copper, per testing. I saw no symptoms. A month or so later, we tested the zinc and now its high, so I have backed down to MWF dosing. It never ends, really. Moosiebell- are you giving B12? I thought B6 needed to be balanced with B12 but I could be wrong. I supplement with the P5P form of B6, as well. I used Klaire labs brand and was giving B 12 shots. DS's new doc told me too much B12 could cause aggression. Sure enough, his B12 was very high. I have stopped the shots. I am now using a product recommended by his doc called Neuroimmune stabilizer. It has 5 MTHFR, hydroxycobalomin(a form of B12), methlycobalomin(B12), P5P and vit D in a cream you rub into the skin. I love not having to give DS shots and it reduces the number of pills he takes each day. He's doing fine on it. It was developed by Dr Kendall Stewart and is made by Neuro Biologix. I am also using their Calming Cream with GABA, l-theanine, l-tyrosine, 5htp and magnesium in it. It seems to be working. I give it morning and bedtime.

Gradual. Never sudden.

Timely. Tomorrow is one week since we started enhansa at 150mg. No herx. No hyperactivity that I have read about. Could be because I was giving him Meriva SR form of curcumin before we started enhansa. I am upping the dose to 150mg twice a day on Sat. He's falling asleep when I am reading to him at bedtime. It could be the iron we started supplementing over a month ago or a combo of the two. Unheard of for him. He's had sleep issues that require us to give him melatonin since this nightmare started in 2009. I am dropping him down from 2mg to 1 mg tonight to see how it goes.

I would consult with a neurologist to be on the safe side. Back and forth eye movements are signs of neurological issues.

DS saw new dentist in same practice yesterday. Had a great conversation. She told me taking the same abx in treatment dose for dental appts is not enough. She wants DS on clindamycin for every appt and told me she was sending a note to his ped to rx it next time! Woohoo!

Very common for the culture to be negative. My son was 5 when this started. He is now 9. He's doing pretty well right now. He started off taking biaxin. Took that and was then placed on azithromycin prophylactically. That wasn't enough and he started taking azithromycin treatment dose every day. Had IVIG 7 months after it all started and was placed on augmentin prophylactically. Had a few illness here and there and would go back to treatment dose for a while. Caught pneumonia last fall and had a terrible exacerbation. Had IVIG again. Discovered about a month ago that he has ehrlichia, anaplasma and babesia infections from a tick bite that we never knew about. Currently he is taking augmentin and biaxin.

Welcome to our forum. How old is your daughter and how many milligrams are in 5mls of the cefdnir? You are fortunate that her doctor recognized PANDAS. That is a huger hurdle. I recommend going to pandasnetwork.org and choosing some of the articles and peer reviewed literature from that site, copy it and take it to your pediatrician. I also recommend you consider trying to get into the NIH research IVIG trial. Info is found at pandas network. Lastly, I would recommend you try and find a PANDAS knowledgable doctor in your area for treatment. Let us know where you are and maybe some names can be recommended. I know you are eager to see your daughter get better. Five days is not long enough to see major improvement. Look for small improvements. She is going to need at least 30 days of antibiotics before you can expect to possibly see major change. It will happen slowly over the course of taking the cefdnir. If you don't, a different antibiotic needs to be considered. I would also caution you not to count on a dramatic and lasting improvement. Take it one day at a time. You are ahead of the game by being diagnosed so quickly after onset. It took me a year to get my son diagnosed and treated. Prepare yourself for what may be the long haul. Some kid get better and move on, especially diagnosed early. Some don't and its a long process. I don't want to discourage you, but keep an open mind about how things may go.

I would pursue the IVIG. I would only hospitalize as a very last resort. I'm too afraid and too leery of letting a hospital have any control over my son.

Thanks LLM. I am forging ahead. Just wanted to try and be prepared. Mayzoo, DS already has more than enough hyperness. Lol. I am considering asking my doctor to write a script for it. I could use a little hyperness myself .

Thanks everyone. LLM, I fear a reaction like you describe. We have not done 23 and me yet, so I don't know his status. I read on autism sites that hyperactivity is common. I'm going to start it on Sat and go slowly and see how it goes. He is doing pretty well right now.

Just received the Enhansa DS's doc wrote a script for (and my insurance paid for). I am planning to give him the first 150mg on Sat. What should I expect or be looking for?

I should add that it took a week or two to notice a difference. I'm taking it morning and bedtime but I'm thinking of taking the second dose in the afternoon to better cover the evening. I'm really snappy in the evening when I'm tired from dealing with DS.

Great news! We are still working toward that light switch.