nicklemama

Go to urgent care and see if they will do a rapid swab, culture and titers.

My DS's symptoms were very similar to your daughters. He has never tested positive for strep or any other thing. The rages and severe separation anxiety were the worst! He was 5.5 when this started. Today he is 8.5 and no rages or separation anxiety. He's been treated for PANDAS for nearly 2 years now. He was diagnosed by Dr T and then subsequently that was reconfirmed by Dr K, who we see currently. Never heard of that type of pulsing. DS was put on azith 2x weekly for prophylactic dosing but that did not work for him. He must take daily abx at this point.

I wouldn't say my DS8 was a milder case. PANDAS hit him very hard. He was doing what we thought was pretty good on abx. He responded to abx right away and the improvements he made were tremendous. However, he hit a plateau of improvement after 7 months on abx. We really struggled with accepting how well he was doing verses pursuing ivig. We decided to go ahead w/ ivig while he was young (7, at the time). We had no idea the further gains he would make after ivig. He improved in ways we couldn't have imagined. He saw Dr K this past Monday. Dr K was amazed himself. Told us our DS was a new boy, had aged 5yrs in the 14 months since he'd last seen him. That said, DS has some flares whenever exposed to strep and he's still on prophy abx and will be for at least another yr. We visited Dr K because DS has started having adventitious movements w/out the other behaviors returning. IVIG may not be a cure all. DS is currently on treatment dose again for 14 days and will be evaluated after that time for our next move. If I'd known the improvements we'd gain from ivig, I'd have done it sooner. This is not the story for everyone and I certainly don't know if its right for you or not. Just wanted to share our experience.

Here's what has helped DS, who took hours to fall asleep and then got up in the middle of the night and got in our bed. We started giving him melatonin at age 5.5. That was nearly 3 years ago. You can find chewables at Trader Joe's in 0.5mgs. It worked in getting him to sleep. It does not keep them asleep. He still takes the Trader Joe's but we upped the dosage to 1mg this spring. Unfortunately, he still needs it. We found out why this past March. We took him to see a biomed doctor who treats kids w/ autism. He was given an OAT (organic acids test) test and we found out he barely has any blood levels of tryptophan. Tryptophan is broken down from the foods you eat, synthesized into serotonin which is used to synthesize melatonin. Is there any wonder he has trouble falling asleep?! Its part of the methylation cycle which is not functioning well in our DS because we recently found out he is compound heterozygous for MTHFR mutations. We are treating him for this with the help of his biomed doctor. Since Jan of this year, 8 months after IVIG, he no longer wakes and gets in our bed in the middle of the night. If he does wake, its to use the bathroom, then he falls back asleep on his own. We will continue w/ the melatonin until we get his methylation cycle regulated and he is able to metabolize tryptophan.

This may sound terrible but we just made DS take a bath. Twice a week. On a schedule. Every Tues and Sunday night. It was like trying to bath a cat and many times took the two of us. However, we would not give in. We could not let him be dirty and stinky. That said, he was 5-7yo. Now, it might not be as easy. As he got better from treatment for PANDAS, the bathing got easier. Once we could get him in and get water on him and soap him up, he'd take it but he'd cry and couldn't wait to get out. At the same time, he had no qualms about swimming at the pool. Go figure.

Before we knew my DS had PANDAS, he was placed on lamictal and it worked well for tampering down anger and irritibility. We weaned him off last fall and he hasn't taken it since Dec and hasn't needed it since he had ivig.

Unfortunately, most of us here have to travel to get treatment for our children. Its a sad reality. We are leaving for Chicago today to go see Dr K. My DS had ivig w/ Dr K a yr ago last May. My pediatrician is clueless and doesn't seem to want to try and educate herself still, after 3yrs of PANDAS in my DS. I send her the latest in peer reviewed articles/research/clinical trials and when we have an appt, she acts like I'm talking Chinese. We are getting ready to find someone new that will be willing to at least educate themselves a little on PANDAS.

Your story sounds like more to me. I would have him evaluated for PANDAS. Have titers drawn and a throat swab for a strep culture. Keep in mind, even if he is negative for strep, it does not rule PANDAS out. PANDAS waxes and wanes. PANDAS experts will tell you its common to see anxiety and ocd in the families of PANDAS kids.

I think its an ocd. My DS says sorry for EVERYTHING and I think that is ocd.

We are seeing a biomed doctor. Just found out DS is compound heterozygous for C677 and A1298. He started ticcing a few months back now. He's not sick. The biomed doctor added L- Theonine and Taurine to the mix after I took him back w/ tics. DS's behavior is great. His tics are still there. We are heading for Chicago tomorrow to see Dr K on Monday. Checked his titers w/ the ped. Normal, as always. His ferritin levels are still 14!!!!!!!! VERY LOW. I am talking to Dr K about that on Monday. It never ends does it?

We finally got my DS8's MTHFR results back today. He is compound heterozygous. He has one mutation each, C677T and A1298C. Since he is already being treated for methylation deficiencies there is probably nothing else to do. He's on b12 shots and taking methlyfolate, among other things. Just thought I'd post as an FYI.

If any doctor we've seen had followed this advice, my DS would not have been treated. No IVIG outside the research setting? Are you kidding? What should happen to those who don't meet the research criteria? That would be most of us here, since it takes so long to get properly diagnosed, in most of our cases.

Five weeks post IVIG is way too early to expect results. My DS was doing very well at 3 months post IVIG. At five weeks, it was up and down.

I would try adding melatonin. It was a life saver for us. If she wakes again in the night, give her a little more. We started DS on melatonin at age 5.5. We did not know what was wrong w/ him at the time but he could not fall asleep and would wake in the middle of the night once he finally fell asleep. We started him at 0.5mg. He is currently 8.5 and he takes 1mg. PANDAS treatment has helped tremendously too. In his case, it was separation anxiety. He would always wake and get in bed with us.

Personally, I would not get the vaccine. A flu mist vaccine is what triggered my DS's major PANDAS episode. Dr K and Dr T told me "no more vaccines".

Many PANDAS kids are incorrectly diagnosed w/ autism or probably more commonly the Asperger's version. My DS is one of those kids. Once we started treatment for PANDAS, the Asperger's type behaviors slowly disappeared.

Sent you a pm.

My DS talked very loud. We were constantly asking him to lower his voice. We had no idea he had PANDAS. This has all resolved after 7 months of treatment dose abx and then IVIG. No experience w/ tinnitus or lyme.

I will send you a pm about the doctor you are asking about. Look in the upper right hand corner to access you pm's.

1.5mg/kg over two days. He's had one treatment a yr ago.

I read it and enjoyed it but I couldn't help but want to scream out its PANDAS!!!!!!!!!!

I'm glad I'm not the only one w/ this problem. Actually, I think DS could tie laces but he'd just rather have shoes w/ the bungee cord things and I lack the patience to sit and wait for him to tie shoes. I bought him a pair of lace athletic shoes this spring but it drove me crazy watching him fumble around tying them and they won't stay tied. I bought him a pair of Teva athletic/water shoes for summer, plus he always wears Keen sandals in summer. It is getting harder to find the bungee cords now that he's 8.5 and wears a size 4 shoe. Most Keens use the bungee and there are still some bungee athletic shoes. I find them on zappos.com. They have free shipping and returns and I have used them for quite a few years now. Just checked out the link. What a great idea!!!!!

I think your daughter sounds like PANDAS/PANS, also. If you are going tonsillectomy, do it before IVIG. My DS has PANDAS/PANS, although he's never had a positive culture or titers to strep. His symptoms are classic. IVIG has helped tremendously, keeping in mind he is now 8.5yo, had IVIG a yr ago and all this PANDAS business started just after he turned 5. He was having mild symptoms we did not recognize. Things fell completely apart after he had the flumist that fall, 9 months after his milder symptoms appeared.

fcefixer- The next time your daughter has a blood draw, I'd do everything I could to get this test done at that time. Sounds like it might be this weekend if you take her to the ER. FYI- My MTHFR was negative for the mutations.

I wouldn't get my hopes up that the rheumatologist will be of any help. We've gotten no help from anyone but PANDAS experts. One thing I would really like to emphasize is the fact that you do not need positive strep cultures or titers for a PANDAS diagnosis. My DS was originally diagnosed by Dr T and it was confirmed by Dr K. Dr K told us that he has seen about 100 kids over the years that are just like my son, never tested positive for strep by cultures or titers. I would also say that I don't believe Dr K is in it for the money. He has very strong feelings that IVIG is the only way to go. We waited to see him until we had given antibiotics a try for 6 months. When DS reached a plateau of improvement, we went to Chicago to see Dr K. DS had IVIG 14 months ago and he's doing very well.