ShaesMom

Hi Judy, Sorry to hear you are having such a hard time finding help for your Grandson. I'm wondering what type of Doctor you have taken him to and if they have done any blood work on him other than the ASO & Dnase? I would suggest trying an Immunologist is you haven't already. In the last month or so, we have discovered a lot of these kids have immune systems that aren't functioning correctly. You should check into having the following blood work done: IGG & IGG Subclasses IGM IGA Pneumococcal Titers Test Diptheria Titers Test Tetanus titers Test Go to this website and you can search for one in your area: www.jmfworld.com or you can call the Immune Deficiency Foundation at 800-296-4433 Sam

Hi everyone. I just have to share with a group of people who will understand where I am coming from today. Today is the first day of school and it sure was difficult to send Shae. She did great--anxiety level was maybe a 1--no tears until it was time to walk in without Mom. I, on the otherhand, am going to be a wreck today! First, summer was only ten weeks and she was probably sick for eight of those ten weeks. Needless to say we didn't do many fun things nor have any playdates. All of us feel slightly robbed of the good times you shoud have in summer. School came much to quickly this year. Second, she is doing so much better than last year and I really don't want to see her slide backwards now. The thought of her getting strep again scares the living daylights out of me. Third, with her recently dx immune deficiency I have to be concerned about her getting sick period. And-she seems to be one of those kids whose Pandas symptoms flair up when she is around other people of are sick. I spent over an hour meeting with her teacher, school administrator and nurse on Monday. New school policy because of swine flu is that no child may return to school until 24 hours after running a temp and being off of Ibuprofen. They tried to tell me they were going to strictly enforce this rule. It's a great rule, but we all know that sick kids are sent to school everyday because the parents are unable to take time off from work. The is just a fact of life. I am so thankful for this group of wonderful parents and the opportunity to share our experiences. No one close to us can even begin to understand what we go through with these kids and Pandas. I pray that everyone of our kids can continue on a road of healing this year. Now, and I think Michele will appreciate this, I'm going to go find some sugar and chocolate!! Sam

We've haven't tried the therapy route yet. I'm waiting to see how school goes this year since we have the dx, p. abx, and have done IVIG. If she is still having severe anxiety issues we may give it a try. When my dd is having a raging episode, there is absolutely no reasoning with her. She is not in control of the anger or her reactions. We've tried everything from one end of the spectrum to the other. So far, the only thing that seems to work is picking her up and putting her in the ice cold shower. It seems to snap her out of it enough that we can at least get her to calm down. It sounds absolutely horrible but it has worked for us when nothing else has.

EAMom-Yes, I like that article. I gave it to the school last year when we first suspected Pandas. Not sure how much good it did though. Michele--Tic/tourettes articles look great. My dd has not experienced this particular symptom yet. Hopefully they will come in handy for some other Moms. Here is the article on Separation Anxiety that I use. I like that it lists the symptoms, do's & don'ts, & mentions Pandas. http://www.schoolbehavior.com/conditions_a...yseparation.htm

this is the contact info I received from Diana P: Dr. Latimer 301-530-9200

Can't help with Latimer's dose but Dr K recommended 1mg/kg as a single morning dose.

School is starting this week and I was wondering if anyone has found any really good articles on PANDAS and/or Separation Anxiety that they are going to share with the teachers and nurses at the school. IMO they do not need all the medical jargon-just real life examples and simple explanations of what to expect. Last year I felt like no one understood anything about what was happening with Shae. I truly believe they thought I was in denial about my children having some major behavioral issues especially with her severe separation anxiety. Anyone have anything they would like to share.... Sam

Very interesting. How did they find it there and did she have any symptoms other than a tummy ache--such as constipation??

Welcome. My dd7 had IVIG a month ago without having a tonsillectomy. In fact, no one has ever suggested that she needed one. Has a doctor recommended having his tonsils removed? IMO-if it was me in your situation I would be asking myself the following questions: 1) Did my child have chronic infections prior to the Pandas/strep that may have caused the encrypted tonsils? Sinus infections, URI's etc... 2) Does my child seem to have Pandas flairs when he has an infection other than strep? 3) If yes to either above, would removing the tonsils reduce his chances of getting other infections thereby reducing his chances for the Pandas to return? 4) The nutritionist believes that if we heal his gut his tonsils will improve but do I agree or disagree? How much experience does a nutritionist have with tonsils?? 5) Is it possible that there is an underlying immune issue that we haven't found yet? 6) If we chose not to do a tonsillectomy and the Pandas returns/doesn't go away will we regret the decision not to have them removed? Sorry, I don't know of anyone in the Denver area who can be of help. In the case of my dd, she actually does have an additional immune system issue. She has normal levels of all immunoglobulins (ig's) but they do not work properly. Therefore, her body does not fight off infection. If we had not discovered this, I am completely convinced that IVIG would not work over the long term because the next time she comes in contact with strep or another illness her body still won't know how to combact the infection and she would just get sick again. The antibodies in IVIG naturally die off within 3-4 weeks. She will be receiving IVIG monthly (a smaller dose than what is recommended for Pandas). Sam

Sorry to hear you guys haven't seen more improvements. I understand how stressful it is waiting and watching constantly. That first week my hubby and I were ready to call IVIG a complete failure but she has continued to improve every day. We are a month out now and she still has some raging here and there but she asked me to take her out for breakfast this morning. She hasn't wanted to eat out for probably 8 months so this seemed HUGE! Hang in there!

EEEWWWW that doesn't sound very good. Hope he is okay. My doc examined the areas where you can find other lymph nodes (under arms etc) and didn't find any thing else that was swollen or cause for concern.

We've also seen an improvement with Ibuprofen. Seems to keep her moods more steady. I've also kept up nightly Benadryl. I stopped for awhile and it seemed like she wasn't sleeping as well which also caused some minor flares. The Benadryl knocks her out.

Immunologist said the nodules are just swollen lymph nodes. Possibly from a couple of mosquito bites on her head. He was glad we came in to check them out though because with her PID with need to keep on eye on those types of things. She has an increased risk for cancer now! Just what a Mother wanted to hear.

I may be wrong but I don't think any insurance covers IVIG for Pandas. It really isn't a "recognized" disease yet. To get insurance to pay for the IVIG you need to have a creative doctor. Our doctor used the code for Common Variable Immune Deficiency (279.06) but we still don't know if insurance will pay for the two day dose she received for her Pandas. Falling Apart had a post about two weeks ago which listed some other codes and ideas for insurance approval. Take a look at that post for some ideas.

The ped wasn't interested in taking a look at them--thought they were probably swollen lymph nodes due to a possible infection. So, I called her Immuno doc and he can see her tomorrow. With everything that has been going on with her, I would feel much better if someone at least took a look at them. Also, if she has an infection somewhere I kinda think we need to know that.

I wondered about the connection to rheumatic fever. I don't think they would show up if I took a picture. Should I put a call into the Ped Rheumatologist's office or call her regular Ped?

I just found two pea sized nodules on the back of Shae's neck . I'm trying not to freak out but I am. Has anyone else found anything like this on their kids?? Sam

What is "his" blood work???

Great Article! I am going to print this and share it with everyone who has doubted Pandas and the school!

I didn't realize you could order those online. I will definitely have to look into that as winter approaches. Unfortunately, I seem to get strep every time my kids do and most often I am the one who gets the sickest (with the exception of Shae's Pandas). Maybe it has something to with my Fibromyalgia. Somehow my dh never seems to catch it.

I hope she is feeling better by Saturday. I would be nice if she could have a great birthday!

What a great idea to keep the siblings on abx. We are almost 4 weeks post IVIG and my older son is complaining of a sore throat. Seasonal allergies are normal in my family this time of year and since he is complaining of also having a runny/stuffy nose, no fever, and the symptoms are worse in the morning after an evening of football practice by the tall weeds. I can't decide if I should run him to the doctors office or just relax and not panic. If he was on abx this winter it sure would make it easier to not stress out every time he complains of not feeling well. I took my dd in yesterday because she has a weird looking spot on her nose and the Doctor thought it might be impetigo--caused by either strep or staph! We were at the children's museum last week and I let her paint her face. I won't let them happen again! She has had two days of severe raging since this spot appeared and I'm not sure if its the spot or from the chlorine in the pool. Both episodes took place after swimming. She won't be happy if I tell her no more swimming. EAMOM-Overall our dd has been much improved. Maybe once a week she has had a really bad day and then some minor bad behaviors inbetween. It is great that both you and your husband are a part of this site. It must make communicating about this disease so much easier on your marriage. I can't even get mine to read any posts that I find important. He definitely wants to see her get better but he has left the research and "work" to me. Sometimes it is very frustrating.!

susan, With everything you've posted in the last couple of days-burning sensation in her limbs, headache, overall bad feeling, and now bedwetting for the first time in awhile--it really makes me think she has to have some kind of infection. Maybe she is so exhausted from whatever her body is fighting that she was just that out of it last night. If it happens again, I think you should have her checked for a UTI. When did the other symptoms start-was it over the weekend? Viral infections usually last approx 3-5 days. IMO-if you haven't seen any improvement by Thursday maybe you should call the doctor. I know what you are thinking--Another Doctor's visit-ARRGGGGG!!!! Sam

Is the Imitrex used to treat the pain once a headache begins or is it used as a preventative?? Thanks It is given at the onset of a migraine.

I can't give you any insight on the migraines/Pandas connection but I can tell you what I experienced personally as a child with migraines. I remember they started when I was very young and of course no one believed that I had headaches because I was so young. Each headache would last about three days and migrate from one side of my head to the other. They were always located on my temple and above my eye. Heat, humidity, light, sound and movement always made them worse. Over stimulation would lead to vomiting and vomiting would lead to more extreme headache pain. As i've gotten older the headaches have pretty much disappeared. My dd7 has been experiencing migraines since getting the IVIG. I was hoping my kids would not be blessed with this gift of heredity. Our Ped gave us a RX for Imitrex nasal spray. It is very expensive but the money.