lmkmip67

We drove to CT to see Dr. B again today. Ian has been on a steroid burst for 2 weeks now, and I am seeing some improvement. The rages and moods are MUCH better. OCD still the same. His handwriting is amazing in school over the last two weeks, I guess. lol Anyway, we have not seen enough improvement on the Azyth. and the Omnicef (I forget exactly which one), so we are stopping the two antibiotics and switching to just augementin for a while to see how that works. Dr. B is also going to work on getting everything oked through our insurance for IVIG. I think it should be fine, so likely we will do our first one in late March or early April. I am suppose to track again how Ian is doing on the augmentin, so I will do that. Things have been a bit calmer around here with the steroid, but that is almost up. I know it isn't good long term anyway. So on to the next step! Lisa

Well, I talked to Dr. B and he thinks we should do another steroid burst with how bad it is right now. Bless him, I just adore him. he is what all doctors should be! He did say we have to do something and feels that should help for the time being until we can get in and see him in 1 1/2 weeks. I also learned from my husband today that a little boy on his hockey team was out sick most of this past week....with guess what....you got it, strep. Ah HA! That alone makes me feel so much better. I at least can then see WHY. So I have hope that we can calm things down and get him back on track. Now I need a nap. HA!

We tried giving the antibiotic in the morning but he really complained about his stomach. He is not a big eater in the morning so I don't think he had enough to buffer it. He eats more at night so we switched and it helped that issue a ton.

I am giving a children's chewable one from the health food store that needs to be refridgerated. I give it in the morning and give his antibiotics at night after food.

No, no weighed blanket. Is that helpful? I know kids with sensory disorders and ADHD seem to benefit from that, but never thought of it for PANDAS as we don't have too much sensory stuff going on, just OCD rituals mostly.

We had such a bad night last night that I had Dr. B paged this morning. I am waiting for my callback. My poor guy is a walking zombie today because he only had about 6 hours of sleep after all the rages last night. He is on Omnicef and AZith. right now. He has been for about 3 1/2 months. Honestly I don't see any improvement over the last few weeks. He is awful. He seemed to get a bit better at the beginning of Dec. But even Dr. B said he would have liked to have seen more improvement by now. I am wondering if we should be trying something else for a while? Could Azith be causing the awful moods? Should I ask for another steroid burst? It has been 4 months since the first one. I suppose he will know what to do, but just curious what others would say.

Thank you all so much! It is SO hard right now.I am sure I will get used to it to an extent. This is the first really rough patch like this. I just spent 20 minutes holding him down until he exhausted himself. Then cried for 20 minutes. lol I know this to shall pass. I know he can't help it. I am trying to keep my patience in check. I really. We do yell sometimes. Night is the worst right now. The rest of the day is not as bad. Not great, but not as bad. lol I am going to try laying off benadryl and meletonin for now. And try round the clock motrin for a few days. I am calling Dr. B tomorrow morning. We need a break, even if just a little one.

Sooooo sorry you are having such a rough evening... I have so been there, so many times and it is horrible - we get shell-shocked. Please take good care of yourself... I hope he is resting now and you can get some rest yourself. Glider rocker!!!! I still have mine from when DD11 was born! Thanks for posting that suggestion! There are times that I've been able to rock her in the recliner and it does seem to help soothe her. Take care, Denise Yep, kind of hour I am feeling. lol whew. I will sleep good anyway, that is for sure. it has to get better. i am moving the glider into his room tomorrow and will see if that helps.

huh. I am thinking about this now. We are having rages at night. So bad, 11 p.m. and I think he might finally be calming down. I have bruises on my back from holding down a hysterical 7 year old. I am wondering if perhaps my glider rocker in his room might be useful.....

That is very helpful insight, Emerson. THank you for your post. It makes perfect sense.

I am so glad to hear I am not alone! I will admit I read some of the posts and get so scared he may get so bad he can't go. it is really closing in on a year or a bit more now, that I am sure he has dealt with this, treated and diagnosed 5 months ago. I am glad to hear (I certainly wish all the kids could have the choice to go to school and do well), that some do great in school and are holding steady there. I can almost handle the stuff at home if I think at least part of the day he is engaged, smiling and having a semi normal day on some level.

I know I should be thankful, and I am. Ian is fine at school. He sometimes has trouble focusing and needs some direction ro help with school work. He is in 2nd grade. But he is fine in every other way. He listens, is polite, socially doing very well in school, etc. yet at home he lets loose. I read so many posts about kids that can't go to school and it breaks my heart. I am thankful he can. I hope he can keep on. He, and I, need the break. But it made me wonder how many kids do fine in school, but fall apart at home. Lisa

I will try the Valerian! Thank you! And yes, Nancy, it does help! I had no idea this is where we were headed, when first diagnosed. So hard! I thought it was mainly tics and some little OCD. yeah, right. I would be willing to try psych meds if I thought they would help. But I have heard they don't really for Pandas kids. Do they??

Can you share your doctor's name and where he practices out of?

thanks! The house stuff does wait. LOL It is the business stuff that I need to tend to. I own my own business so have 3 babies in the end.LOL The two kids and that. But it still lets me be flexible to take him to CT for appointments, so I can't complain.

Thanks everyone. Brings tears to my eyes. I think I am just really tired from kids being home from school so much due to snow and trying work.

We did the total panel from Igenex. I forget all the names and am too tired to get up and look. lol We did the whole thing, coinfection panel and the western blot? Is that it? He ordered the thing. My checking account whined, but we have to find out. I know we will get through. It is just so hard some days.

I can so relate. I am sorry you are going through this. W are having some really bad nights here lately, too. Your not alone. ((HUGS))

I am sorry I don't reply to a lot of threads. I am so busy trying to run a business and take care of two kids. Ian has been struggling with bed time every single night this week. I try to be patient, I move to yelling to just leaving him screaming until he falls asleep. he is 7 and I shouldn't have to do this every night. It is going on 10 p.m. and he has been screaming for an hour. He needs this said that way, that said this way, and then said 10 times, blankets up a certain way, etc. It goes on and on and on. I need some down time. I need him to go to bed at a reasonable hour. I will be up until after midnight working because he has been up for the last 1 1/2 hours screaming. I know he is struggling. It breaks my heart. But at some point I need a break. DH helps, too. But by the end of every night we are both spent. I have tried meletonin. He rages right through it. Benadryl. Same thing. He is on Zith. and Omnicef is it? Two antibiotics. We are waiting on the lyme testing and going to talk to Dr. B in a couple of weeks about IVIG at our next appointment. But I won't be sane by then if this keeps up. he has been a bear for two weeks. I have no idea. He had a bad cold and I got it. But I am getting over it. I don't know what to do anymore. Should I ask for a steroid burst? We did one in Sept and it made such a difference. HOw long is a good length? The last one was maybe 15 days. Motrin helps a little, but he says his stomach hurts. I don't doubt it from two antibiotics and motrin everyday. Poor kid. Poor parents. I need some hope. Somewhere. Lisa

Thanks so much! I was able to call them from your post and they said to refrigerate and send tomorrow.

I took my son to get a blood draw for the in depth Lyme and I know I have to send it out myself. Can anyone tell me if I have to send it to tonight or can it wait until tomorrow? Dr. Bs office is closed now so I can't call and they are not sure here. Thanks! Lisa

We had out third appointment with Dr. B today. While Ian has had some improvement on the antibiotics (he is on two), Dr. B feels he really should have made more of an improvement. So he says we really need to make a decision about IVIG. He is also ordering the more fool proof Lyme test. Though he doesn't think that is it because of how great Ian responded to steroids in the early fall. So I don't know. But we have to do some more blood work and get pre qualified for IVIG. I didn't want to have to do it. But it seems like that may be our only option. I trust Dr. B, and really there is no one closer to us that specializes in this. We have an appointment next week with the guy in Mass. that says he treats it, but doesn't if the titers aren't high, and Ian's aren't. I don't know. I am nervous about it all. We switched do United Healthcare PPO, so it should be covered. But I get nervous it won't be for some reason. And I also wonder how many treatments of IVIG he will need. Dr. B said hopefully 1. But that didn't sound conclusive. I want to help Ian, it breaks my heart to see him struggle so. He actually had a good day so far today. We will see when it is time for bed, lately that has been his issue. Will one IVIG infusion really be enough? I hear so many people talk about ongoing infusions on here. Well, I am off to research IVIG in more depth. Lisa

Yes, well we will have see you tomorrow then! All that sounds so familiar. I can be patient to a point, but even his dad loses his patients after a while. I am going to ask about Lyme again. We shall see! Good Luck tomorrow, and thank you! It helps to know we are not alone, that is for sure!

Laura, I will be there at 11! We will very likely see you. It is also our third appointment. And yep, the wine comes out often after he goes to sleep. Only a glass, lol. But it helps to calm the nerves. And much coffee in the morning! Do you have a long drive? We are coming from MA, 2 1/2 hours. I wonder why sometimes I see replies to posts but nothing is posted. I see that once in a while. lol

Hi Nancy, Yes it is related to Pandas. We see Dr. B in CT. He is currently being treated with two antibiotics going on the 4th month.