colleendonny

Tiffani- Really wish I could go! But won't be able to If you do attend, please fill us in. Let me know where/ when you will all be meeting. Obviously, things are a bit crazy with my LO in the hospital but hopefully we can get some answers for her. I would love to get out and chat with you ladies I am in Kingston, 5 minutes from Plymouth.

Thanks everyone we spent the night amd she is now on an EEG moniter. We will spend the night again. She hasn't had anymore episodes. I wish it would happen at least once just to get it on the EEG. Anyone know is seizures are related to PANDAS? I know it can be a sign of Lyme. I just got tested myself at Dr. B's office last week. We saw someone from neurology in the ER last night. He may have been a resident. Taking family history, I mentioned kayleigh has PANDAS. He said, "You know, a lot of neurologists don't believe in PANDAS." I said, "Yes I know, but she is getting treatment amd is getting better, so I believe in it." And I overheard a nurse talking in the ER to someone. I think someone brought their daughter in and I caught that she was having bad words/ thoughts. They were saying behavioral. I wanted to jump out of my room and shriek PANDAS!! We are at non- PANDAS believing Children's Hospital Boston. They are taking great care of Lucy though!

Not for my PANDAS DD. She is currently well. But my little one is almost 10 months. It seems as if she had a few seizures tonight. I'm scared to death

Hi, I often feel the same way as you. Always thinking what is going to come next. That was always my thinking and I still frequently feel that way. But things WILL get better with treatment. And you just have to try to keep thinking this way. It's definitely tough, but on the plus side, you did catch this early and are not listening to the doctors who give their crazy diagnoses. I am relatively new in this, 6 months, but I can say now that since sudden onset back in October, my DD5, is now at 95%!! You are doing the right things by getting in touch with some of the best doctors. Stay strong and let us know what Dr. T and Dr. K say. Best of luck!

The only thing our LLMD about these results was that he expected her IgG serum to be higher, like over 1,000. He or Dr. B didn't mention her vitamin D, but I think I will supplement. Dr. B said that since DD is at 90-95% right now, then I can discontinue her Azithromycin. I did contact LLMD and her IgG ehrlichiosis is still the same as it was in December. I mentioned Dr. B said to discontinue it and he said it was ok. I'm nervous to do so, but they both have given the ok and said if symptoms come back, we can add it again.

I'm not really looking for help with the PANDAS aspect of the high TSH, just seeing if she needs treatment for it. But I will also check out MGH to see if they have any specialists for pediatric hypothyroidism.

I would love to sneak in!

Thanks. Maybe I will.contact children's hospital Boston. I'd like to hear the opinion of a specialist.

We see Dr. B. Chiming in to say, I think he mostly adds the azithromycin for kids who have Lyme and co.

Me!

Melissa, Did you get his teeth cleaned?

LLMD said it would be alright to discontinue... She has been on the azithromycin since the beginning on January, so 3 1/2 months. Both said to call back if symptoms reappear and either will refill the azithromycin. She is currently still on Augmentin 600mg 2x per day and the A-bart. I hope no symptoms return. But then again, she never really had the symptoms of Ehrlichiosis or RMSF...And if not I guess next step would be to retest her titers again in May with LLMD and again with Dr. B in February.

I was looking over some of DD's lab work from our first visit with Dr. B. I never realized that some things looked suspicious to me until recently, because they were in the "normal" range. Anyone have some insight for me for these:? Her Vitmamin D was at 32. Sufficient is 30-100. Insufficient it 10-30. So, I would call this borderline insufficient and not sufficient. I just feel like the normalness is too low... I mentioned this to Dr. B today and he said I didn't need to supplemet. It's still in normal range. Her TSH was "highly sensitive" at 4.02. Range is 0.27- 4.20. Again I would call this normalness "borderline high". Like hypothyroidism. Again, Dr. B wasn't worried. Her IgG subclass serum was 729. Reference range is 592-1723. Hers seems a little low. Her LLMD mentioned to me that he thought it shouldbe over 1,000. I mentioned this today and he said not to worry, she is young (5), and as they get older, the numbers rise. Her IgG 1 was 431. Reference range is 308-945. Hers again seems low. Her IgG 4 seems really low to me at 9.4. Reference range is 2-112. Am I just being overly concerned here? I just do not understand IgG's and what the subclasses mean. I tried to research, but I find I make myself more confused. She also has low granulocytes and high lymphocytes, which meand some kind of disease/ disorder.... Could this be from her IgG or ehrlichiosis or just her body fighting PANDAS?

Hi all. Was looking to get some opinions on this... DD4 has sudden onset PANDAS back in October. We got into see Dr. B 6 weeks later in CT in December. Her IgG showed ehrlichiosis. She also showed exposure to Rocky mountain spotted fever and typhus. We have since started seeing an LLMD. I just goit her results that RMSF and typhus were no longer detected. Her IgG for Ehrlichiosis has remained the same. He said keep giving her the same medicines: Augmentin 600mg, 1 teaspoon 2x per day, Azithromycin, 1 teaspoon 1x per day, and A-Bart for suspected bartonella. We are working slow on that as she was dizzy after the second day. So, she is taking one drop every three days for 2 weeks. Anyway, we did see Dr. B today for her 4th followup appointment. He asked how DD was. I said 90-95%. He tald me to discintinue the Azithromycin. But I will talk to our LLMD first... I would think that if the numbers haven't changed, I should keep the dosage the same, yes?

PS- The receptionist is the one who photocopies the lab results to give to me.

I usually just ask for a copy of the previous visits lab work at our follow up visit. Today, Dr. B just handed me copies without me asking. I have a feeling the only way one of his patients could get the lab results before a follow up visit, would be to have a phone consult discussing the lab results, then to ask for them to be sent... I could be wrong though.

He ordered the test for my kiddos

Peglem- Scary about your grandson. It sounds like things have pretty much resolved with the new formula? You guys must have been so worried. Cobbie- I just love when these pediatricians just brush off every behavior that parents think are concerning. Drives me nuts. Then when we finally think we know what is wrong, like when I told my pedi I thought DD had PANDAS, I think he thought that I was crazy. The thing about my DD10 months, Lucy, that really concerns me is the head shaking. Is it a tic? A stimming behavior? Or pain/ pressure response? When she first started doing it a few weeks after a vax at 6 months, I was concerned. She had an EEg to rule out shudder attacks, and it was normal. At the same time she was cuuting some teeth. After about three weeks, it pretty much stopped. Then it started up again about 2 weeks ago. Just so happens she also had an ear infection too. Maybe she is doing it because this is how she is dealing with the pain/ pressure? And I happened to watch a home video of when PANDAS DD was 12 months old, on Christmas, doing the same head shaking movement Not sure, and she's probably a little too young for any kinds of PANDAS testing. I find myself relating a lot of things to PANDAS, that I would think was normal behavior,until PANDAS hit us in October. And I read stories here. It seems that most? of the kids here also have a sibling, or all of their siblings, with PANDAS. I feel like I'm so restless at night because I think one of my kids is going to wake up with some kind of crazy exacerbation. Ay yi yi

For my DD, who is 10 months here is what I notice... She is just an awful napper. And we think she has had a partial complex seizure. And maybe a few absent seizures. A 30 minute EEG has been normal. I nurse her and she is pretty much attached to me throughout the night in my bed. And at 6 1/2 months, she started shaking her head back and forth, as if she were saying no. This started a few weeks after her PCV13 vax. Again, all could be normal, but I cannot help but worry

Curious, I read of some posts saying they believe their child has had PANDAS since infancy... What were the signs you saw?

Thanks ladies. I will ask him, and if not I will ask our LLMD next month.

I gave DD a cleaning and she started with a throat clearing tic the next day. Dr. B said they were fine. I will still get cleanings probably, bit without fluoride.

We are seeing Dr. B tomorrow. Was wondering if anybody has tested for the MTHFR mutation with him? I wasn't sure if that was something that he did. I'm trying to compile a.few questions for him before we go tomorrow. Thanks

Thinking of you and your DD! Sounds like you have a great plan in place!!!

You dont have to have strep to have PANDAS, if that is what you are getting at. My DD never had PANDAS-like titers, but she does have PANDAS. There are many triggers. You went to children's? We are from MA as well