Mary M

I'll just reiterate how glad I am that you found this forum. I, too, have a 12 yr old daughter. She had her first exacerbation 4 years ago. So glad you will see a real PANDAS doc and finally get real treatment. The regular docs who might "believe in PANDAS" and "diagnose PANDAS", in my opinion, are still holding fast to the NIMH guidelines which provide so little valuable treatment. But the PANDAS pros are the ones who know what to do and how to do it. Blake, and the rest of your family, deserve so much more from life and Dr L will be able to make that happen. I know our daughter deserved to get her life back and since our time spent with Dr K, big strides have been made. Granted, it was a hard road and you have plenty of work ahead of you but the hope you see for Blake is REAL and it will happen. Your wife has every right to feel disheartened by the system but there is HOPE. This forum and the Dr L will help you every step of the way! Mary from Michigan

I can tell you that in the breastfeeding literature the research indicates that it takes 30 days for dairy enzymes to clear from the body. So nursing mothers who choose to eliminate dairy from their diets to see if it improves baby's function must do so for more than 30 days before determining dairy as the culprit. There are some ways to help ease the dairy enzymes out of the system (most don't work for breastfeeding moms as some babies will react negatively to the eliminator foods) but pineapple and pineapple juice are supposed to attract dairy enzymes and help move them through the system faster. Mary from Michigan

Our d12 was first diagnosed 4 yrs ago, had no symptoms between exacerbations. This most recent event was beyond horrible. PLEASE, PLEASE seek help from a PANDAS expert. Our ped had no problem using high dose augmentin XR until we saw Dr K. Ibuprofen definitely helps. And on a positive note: Our dd had IVIg 7 weeks ago and although the first 4 weeks post IVIg were extreme (such exacerbation), the change since week 4 ended has been quite positive and the change this past week has been remarkable. The brain is a very complex organ, requires time to heal itself, is extremely misunderstood simply due to lack of knowledge. Why does he say it feels like something is crawling in there? I don't know...but my dd said after IVIg that it felt like her brain was twisting inside her skull. So, to comment about how it feels is good and healthy, now we just need to find the best way to improve out childrens' conditions. A PANDAS expert will help you with that. Mary from Michigan

Buster, Please know you don't ever have to apologize to me for all the work and effort you invest in our children. I will gladly and willingly spend whatever time is necessary to fill out a survey, questionnaire, participate in a focus group, fly to Cali...whatever you ask, I'll do it. I'll do it twice, three times, even more if necessary...because I am grateful for all that you have done for our daughter and all the children represented on this forum. And if you ever need help, please don't hesitate to ask. I'm no scientist but I follow directions really well and would be willing to assist with even the most mundane tasks if it would be at all helpful to you. Thank you! Mary from Michigan

My dd felt the frequent urination (all day and all night) interfered so much with her life that she decided to do her own research (unbeknownst to us). This was prior to it joining with OCD and toileting becoming ritualized. Her hypothesis: if I don't drink anything I will not have to pee all the time. The result according to dd: still had to pee all the time, all day and all night. Next hypothesis: if I don't drink AND I eat only salty foods I will not have to pee all the time. The result: urinary frequency persisted. This certainly dismayed our dd as she thought she could beat it somehow. I explained that it had to do with how her brain was communicating with her bladder. I didn't have the science from the OCF conference but I had read something about it somewhere. Prior to IVIg the frequency had started to diminish (steroid burst effect?, enough long term abx by then?--who knows) but post IVIg the frequency has disappeared. My dd also had a voluminous amount of urine, even when she had just urinated 15 minutes before. She was checked multiple times for infections and diabetes (both types-mellitis and insipidus--even though she didn't have the other symptoms for those). Mary from Michigan

It would be invaluable for all of us...those in the first study as well as those of us muddling through this currently, to have the NIH look at some longitudinal data on the first 50 children and their families and compare that information to what is happening currently. Thank you for sharing your story, giving us all hope. I'm sorry that reading our current posts have stirred so many difficult emotions within you, but the information you have provided is a true blessing to us all. Mary from Michigan

I'll concur that it is most likely a sensory issue. Our dd went for many weeks without any clothes at all. When she did wear underwear she preferred it tight. Since week 2 post IVIg she has been clothed with only a few rare instances of turning back the pages to the anti-clothing period. Underwear is a big concern for many kids with sensory processing issues. Mary from Michigan

EmersonA, I'm so sorry about this new symptom. My dd12 went through a non-eating period. She complained of choking concerns. She would not eat with us, I can see why you are concerned about eating in front of friends but if I could have understood it better at the time I think I would have tried to explain to my daughter that eating is safest with others. I see, when I watch my daughter, that logical thinking and PANDAS don't always mix. But you are older and seem much more in control of yourself and aware of your symptoms. Keep trying to defeat this disease...you are an amazing young girl...you will get through this symptom too! Mary from Michigan

Exclusively breastfed until approx 1 yr then continued through age 2, she self weaned sometime between 2 and 3. She self weaned over such along period that I truly do not know when the process was complete. Never had formula or processed baby food. Mary from Michigan

The advice provided here is wonderful. I have nothing more to add other than to say we've all been where yo are now. It certainly feels overwhelming but this group is so supportive. Parents know their children best, and you know your child needs something more than what is being provided by the medical community. Keep pushing for you r child's well being and know that we are all here to support you. Mary from Michigan

Such marvelous news. Thank you for your time and commitment to all of our children...the media attention would be such an advantage. Mary from Michigan

Mary - this is a very interesting article and I love qualitative studies because they really show you what the people are experiencing. Hey - any graduate students who may be checking this site... we are a GREAT group to use to conduct online qualitative research!! We may not all be able to get to the same room, but we could all go into the same online webspace and answer questions in a focus group!! Kim, The full content of the article (which I have in print but can't seem to get online) contains the focus group questions. So is it plaigerism to simply post them to the forum and collect the answers? I am emailing the researcher right now to see if they'd like to design the same questions for us.

http://journals.elsevierhealth.com/periodicals/ymph/article/PIIS0891524509002090/abstract from the Journal of Pediatric Health Care, vol 24, #4, July/August 2010 I could only grab the abstract to this article but I think that the research/article could easily be re-done with PANDAS rather than Kawasaki's Disease...and provide a much larger research pool than the 25 parents they met with in focus groups. Mary from Michigan

That is such an amazing story. I literally called my dd12's dentist today to cancel her appt for Aug 9 as I just couldn't take the risk of having her receive dental work so close to the IVIg and this new, gradual progress we are seeing. Your dentist is AMAZING and should be commended for carinf so much about her patient. I am totally impressed by the care or to put it better "lack of care-that was the best thing she could have done" that she provided---wise and insightful and understanding. Mary from Michigan

Oh Joan, I am so sorry to hear that things are still not progressing. Interesting that Dr K suggests it's an age issue. If that's the case could your son need more IVIg? Dr K's website actually says something about monthly IVIg infusions. Has Dr K considered any other treatment options for your son? I know when we were begging for something he very confidently told us we had to wait and he was sorry things weren't progressing but we had to wait to see if the IVIg would take effect at some point. Is that still his take with your son...wait it out? So difficult when you are living it day in and day out and night in and night out. Mary from Michigan

It is always so reassuring to see positive posts after IVIg...or any tx for that matter! So happy for you all!

I think you need to find an elevator...and quick. How about a one story office building to just practice up and out, then down and out. Her progress continues to be something.... Mary from Michigan

Prior to the "not eating anything in the house" phase our dd went through, she would eat "shakes" which in our house consist of frozen bananas and other frozen fruits, a bit of yogurt, and a splash of pomegranate juice or some other 100% healthy juice to allow the shake to mix well. To this concoction I then added supplements to enhance her diet. She was unaware of the "other things" I mixed in, of course. Buffered Vitamin C powder, protein powder, carnation instant breakfast (as mentioned in another post) would work, too. During the time she would eat scrambled eggs or omelets, those were also prepared to enhance nutrition and increase fat content...I used heavy whipping cream.

Agreed, but getting anyone in the institution of medicine to "eat crow" is tricky business. Which explains, in part, why the name change seems so important to the institution. The docs who never believed need to save face by not having to now diagnose something they had denied for so long. And the mental health professionals are really going to struggle as they have denied any microbiological source to mental illness symptoms for so long. How many of their former and current patients have been misdiagnosed/ineffectively medicated? I know they were doing the best they could with the information they had at the time but it is time to see the new information for what it is and help children and families rather than wallow in their own self-righteous pride. Mary from Michigan

Our dd12 has had similar issues during exacerbations. Sometimes she would eat if no one else was in the room with her. But more reliably, we found that she would eat foods out but not in our house. So, just to get her to eat, we would take her out. Yes, going out was more expensive but we felt she had to eat and that was the most important thing. We didn't make a big deal out of it...we would just say we were hungry and felt like "such and such" to eat and off we would go...and she would eat. I did explain to our older dds that she wasn't being rewarded, that it was a matter of ensuring that the basic needs of the body were being fulfilled...eating is a specific priority. And since during most of that time she also wasn't able to sleep, meeting any of the basic needs was a priority. Since IVIg on June 14/15 she eats at least twice per day (if not many times more), eats in our home, food we've prepared or my mom has prepared and we are so grateful. The not eating is scary...we always had a very healthy diet but also succumbed to less healthy choices if she'd eat them. During her most difficult eating times, I would agree that it was soft foods that worked well. I can name at least 2 times when she and I ate in the car also. Non-PANDAS parents would balk at any of these suggestions but those of us who have been there know there are times in the course of this disease where we will do anything, even things that seem absurd. Mary from Michigan

We are 5.5 weeks post IVIg. I read about the "turning back the pages" and the "worse before it gets better" and our dd12 was in such excacerbation at the time that my dh and I literally said out loud, "how could it possibly get any worse". We were in a such a dark place...but it did get worse. And we did not see improvement until into week 4 but I know now that the IVIg is working. I think the de-tox, herxing is an excellent explanation although, as we learn more about the effect of IVIg on the PANDAS child, perhaps we'll learn that it is something even more than that. How I wish there was a way for healing to occur without the difficulties associated with turning back the pages and on good days I can hardly give myself permission to be happy about it because I know that another page will soon be turned but (and I like the dimmer switch analogy) the difficult moments are shorter in duration and less intense... I know none of this is really any help when you're in the middle of it...crying or wanting to cry..trying to figure out if it's a PANDAS behavior or some learned response (yes, psychologist mumbo-jumbo!) but at least there are good moments...and, I think, at least for me, deep down in my consciousness, even though I knew it might get worse before better...we were getting IVIg as a treatment to improve things and when it takes weeks and weeks, well, that just feels pretty discouraging. And if I'm feeling discouraged by the slow progress...how discouraged are our kids at the slow progress of their improvement? This disease is challenging and its treatments equally so...and I don't want to in any way misconstrue a cancer patient's experience but some comparison can be made to the challenges faced by the effects of chemotherapy...my friend Jim was never sick with his cancer, just tired, but he was horribly sick with his cancer treatment and was sick for many months from treatment. It's a horrible paradox...the treatment makes you sicker before you can get better. In my perfect world in my head, all IVIg families would be able to stay in a Ronald McDonald type facility for 4-6 weeks post IVIg so the child could be worse in a place that doesn't trigger as many issues and the family members could stay there to receive the necessary support to get through the difficult treatment phase. But first, I guess we need this disease to be recognized, insurance to cover its treatment and then get a post IVIg support system in place. Hopefully, just the reassurance that so many of us are with you will help... Mary from Michigan

When we were in Chicago in June Dr K said the same...the world would recognize PANDAS on July 18 and he was submitting his paper for publication in the Lancet. The white paper seems like a giant stopping point for Dr K's predictions. I have a request in with a Hospital medical librarian for either/or the white paper, pubmed, Lancet article---anything pertaining to this but this Forum usually gets stuff out to one another faster than the real world! Let's hope it's soon! Mary from Michigan

Weren't you consultng with Dr K? He should be able to get the prescription you need if you've consulted with him. Mary from Michigan

Just looked up skype-couldn't find an option for a group (doesn't mean it doesn't exist--I just couldn't find it). Also looked up gotomeeting.com. They have several options based on number of participants and a free trial option...that might work. I love the idea of a celebratory gathering...and wouldn't a once per month video conference be extraordinary?! Mary from Michigan

Thank you