amy s

bmom- thanks for your reply. I hope your son continues improving!! Is he in school all day? Maybe the fatigue is just something my dd has because of the waking up at night so much. She always just wants to come into our bed and 'snuggle'. I bet that is nighttime separation in which you speak of, except in my dd own way. My dd is 7 and since IVIg she hasn't been in school. She could take a nice long nap every day if we let her and also she doesn't wake up bright and early like she used to. She was always an early riser, before. I will keep your son in my thoughts. regards, amy s

Today has been one month since the IVIg treatment on my dd so I thought I would give an update. My dd is doing great and continues to be off all antipsychotics. She has very low level OCD symptoms that crop up once or twice per day, very low level anxiety that is hanging around but absolutely NO rages since the week of the IVIg. Her temperament is very happy almost all the time. She does have some emotional times but those are becoming increasingly rarer each day and she does have some issues at night time such as difficulty falling asleep but this is not a huge problem. She continues to have very mild hand tremors, too. I would say she is about 90-95% (?) back to her baseline. She had a follow up with her doctor today and it was lovely because we just didn't have anything to say! Yesterday we went to her school and brought the panettone to school and read the story to her classmates. Since she's been out for this past month or so, she was greeted very warmly and the kids were all so happy to see her and it made her feel good which made me feel good too. She says she feels like she is able to go back to school and so when we meet Jan 8th for the re eval (hopefully everything will continue to go well) hopefully she can go back to school. I'm thinking of starting with half days for the first week. She still seems awfully fatigued at times. Did anyone else who's had IVIg have fatigue issues a month later? Perhaps it is just the nighttime sleep issues causing her trouble during the day. regards, amy s

I can't remember... is your child is on any antibiotics?

One of the doctors that we took my dd to in sent the test off to Neuroscience along with a BUNCH of others tests that were sent out. As far as tics....I don't really think she had tics. But I was never clear on what a tic was. If she had one, I think it was a complicated one which was a hand lick touch thing and yes gone now. But we were also told that it was part of her OCD. She had severe disabling intrusive thought OCD, tremors sometimes to include her head and upper body and severe and frequent violent rages...urinary difficulties, and night time issues and just plain bizarre changes in personality and behavior...some PICA episodes, etc. Some symptoms changed as we went along and she had basically one remission that lasted for 2 months but other than that it was just one long huge pandas issue since August 2007. We did a telephone consult with Dr. K along with exchange of emails. We used his protocol for the steroid burst and his exact IVIg protocol- he sent it to my pediatrician. regards, amy s

Wow, your dd sounds just like my dd not too long ago. We had a very bad episode that lasted a LONG time and basically made life unbearable for everyone for a while. I started to question PANDAS too because of low titers but later found out she had a mycoplasma infection that was just festering I guess and I believe that was responsible partly. She also got a very high Streptozyme IgM level from Neuroscience (along with the pandas panel--a lot of others were high too but that was BIG) and still had low titers. I don't know why. Anyway, I know exactly what you meant when you said 'a simple ped OCD with co-morbid diagnosis would feel like a blessing at this time'. Sometimes you can get to a point so low that it doesn't matter in what form....these kids need HELP! And so you start looking at any avenue that you can get it. I caution you against the antipsychotics but understand things can become desperate to get these kids some relief. My dd is 4 weeks post IVIg and is doing really great. She is back to about 90% of her pre PANDAS self. It is completely AMAZING to me because we are finally able to see our child again after living through something I never dreamed people had to deal with since basically August 2007. Have you tried a steriod burst? It could also help confirm the diagnosis of PANDAs for your dd. I'm sure you already know that but I thought i'd bring it up. IMO, now's the time to try it while she's having such symptoms and also while NOT on any antipsychotics. good luck to you and don't forget to take care of YOU!!! regards, amy s

Good luck!!! Hopefully you will see clear results soon.

How often are you doing the HBOT and did you purchase your own? How does your son do while doing the HBOT treatment? Glad to see your update! Oh I have another question too. I read somewhere that your son takes transfer factors. I have just completed the book "Transfer Factors and Immune System Health" by Aaron White. I am amazed that there is not more information out there about these transfer factors. Is your son still taking them?

We did not see completely back to normal results with our dd but a definate huge improvement up and above anything we had seen in a very long time. We saw results beginning on day two but I am not sure that is very common.

With just a quick glance through the only amino acid I'm seeing is glutamine which is a precursor to GABA. It is made naturally within the liver.

My dd actually did not test positve for candida after 6 full months of daily antibiotics, but...she was only on PEN VK at the time and now she is on augmentin. Also I was not giving a probiotic during the PEN VK time period, just yogurt daily. Now we do give a very good probiotic plus daily yogurt. As far as my pandas dd getting symptoms after being around sick child with stuff other than strep.... I really don't know. But she had symptoms so many times that were unexpected...I really don't know what she was in contact with. I know of ONE time for sure when she had 3 positive strep kids in her classroom and that very day had an extreme exacerbation of symptoms but that was the only one I was able to pinpoint for sure. Still, the teachers contacted me whenever anyone had a fever and was sent home so I could try to track it. But it was hard because she constantly had symptoms. It WAS episodic but many times I had no idea where the fluctuations were coming from. I know one time she was exposed to a kid with chicken pox and did not have any different symptoms than she was already having. hope that helps.

Chrisw- Hi, I'm so sorry to hear that your child is ill. I do not know if Tricare would cover the expense. I doubt it. But I will tell you one thing that I think I could have won to get reimbursement, if it came to that. It is important to have as much documentation as possible in case that could happen. I have sent you a private message. good luck to you and welcome to this site. I hope our stories have been some help to you. Someday when you can please share your own. regards, amy s

Hi all- Just a 3 week post IVIg update and I'm happy to say that my dd is doing great. She is so calm and happy most of the time. ZERO OCD and her hand tremors are so much better. Emotional lability is still a bit there, but mainly she just has some tears and need for reassurance. NO rages whatsoever. She is working so hard on school work (here at home, still) and is reading chapter books and doing math, happily. She is switching gears easily. Sometimes at night having some sleep issues and therefore some fatigue issues during the day at times. But no night terrors or anything like that. Homebound school is going ok. The teacher comes out for one hour 3 times per week, but basically just does the testing with her (spelling tests, math tests, formative testing that she's missed while at home) And so that leaves it to me to teach new content. Luckily it isn't that hard yet. But there is enough to keep us busy almost all day long until about 5pm, with short breaks through out the day. She's wanting to get back to school soon and since she's doing so well lately that I kinda wish I could send her but the agreement is to wait and reassess her on Jan 8th. We are going out to her classroom to bring some Italian traditional Christmas cake "Panettone" and read a book to her classroom about the cake called "Tony's bread"...we've got that set up for next wednesday, Dec. 17th. Hoping that will bridge the gap and get her excited to see her friends in school again and vice versa. Basically we are really enjoying her. I hope this keeps up. Ok, well that is about if for my dd's update this week. I'll keep you posted. regards, amy s

Hi there, When you get time, I was just hoping you'd give us an update on how your son is doing. The last time you updated he had been doing much better but there was concern of possible Lyme disease. How are things? Regards, amy s

Today is two weeks since my dd had her first day of IVIg. The first week was hard...as was the IVIg itself due to rages. She had several difficult to handle meltdowns and had a strange bout of constipation which because of the discomfort, things were more difficult, I believe. The second week (all last week) we had a house full of family visiting type chaos so we weren't sure if we were seeing improvements or not but each day did get better. Currently she has zero OCD stuff going on and the emotional labilty is much much less. The rages are gone, in fact all my bruises have healed for the first time in a very long time. She has had a few moments of just mean behavior which was able to be gotten under control by basic parenting. Last night we were able to have one of my older children (age 22) babysit so we could go Christmas shopping and out to dinner. That was the first time we felt safe (for everyone) for someone to babysit her in months and months....well really since April and May 2008 when she was having a spontaneous remission. She seems happy almost all the time, just like she used to before August 2007. So it is nice right now. I am glad we did the IVIg but it is disheartening to hear some of the stories about behaviors coming back. I'd like to be hopeful that this will all be gone and stay gone but I guess I'll just stay on pins and needles until I know something more. She's still not in school. We have been picking up her classwork and homework and trying to work on it when we can. Her new homebound teacher called today and will start coming tomorrow. She will be here 3 times per week for one hour each visit. Hopefully it will work because my dd doesn't always do the best in the late afternoons. regards, amy s

For me it was that the laboratory that we had to use had to send it off to be processeed. And they only send it out on certain days, etc.

One of the times my dd got hers done it took 17 days to come back. I think that was the longest time.

Yeah, I feel like that all the time. I always say, 'ok, I should update about this weird thing' or whatever, but I just don't have it in me most of the time.

A steroid burst in the case of a pandas child is used as a diagnostic tool to see whether or not IVIg would possibly work for that child. I guess what I'm asking is, if I go to the doctor and ask for a "Steroid burst," will he say "oh, ok, right this way" or will he say "I don't know what that means." I know that in some cases of TS and tics...steroids makes the condition worse so I would not advise doing this unless you believe you have PANDAS (based on whatever your situation is). Most doctors would know what a steroid burst is. Whether or not they will just say, 'oh ok right this way' or not is anyone's guess. If you are interested in learning more about it I would thoroughly read Dr. K's website www.webpediatrics.com on the PANDAS/PITANDS and IVIg pages. Regards, amy s

A steroid burst in the case of a pandas child is used as a diagnostic tool to see whether or not IVIg would possibly work for that child.

I'm sure there will be someone who can answer this better than I can but I wanted to give you my experience with my dd. She had a negative culture with symptoms of fever and sore throat at the same time her brother was treated for strept with scarlet fever. 7 months later her strept titer that was FINALLY done (her pandas symptoms started about a month after the scarlet fever in her brother) at that time was positive for strept some time in the past. I don't know why she cultured negative. I think those tests are only about 85% anyway. I know there are multiple sites that strept can occur. People have written here about perianal strept and there is also impetigo which is caused by strept. If you don't already, I would definately change his toothbrush next time he gets on antibiotics for strep (about 24 hours after). Maybe also you could ask for titers. Good luck. regards, amy s

Oh, I also wanted to post an update that we are home and day two of the IVIg infusion is DONE. There were no reactions and were able to progress with Dr. K's protocol step by step. She had a couple very bad times with rages (we're talking hours each time) and there was some talk amongst the staff that they could not handle her at this hospital - that she needed higher care (psychiatric was what they were thinking) but those people didn't know the deal. Our ped just kept pushing for us to get through this there and so we were able to complete it because of him. He did tell me that if something should happen that IF she might need more infusions in the future, it couldn't be done there and I guess I understand that because he's been so great and actually kinda went out on a limb for us. I will keep you guys posted on progress. So far she's doing great, but she's also probably exhausted after today's events! Good luck to all these kids. ...and all of us parents just have to keep fighting to get some sort of relief for these children. Thanks everyone for the good wishes and all your stories. Keep posting your progress, please. Regards, amy s

They can only see military families at hospital/clinic located on post.