ShaesMom

My older son contracted Group B strep at the age of 2 weeks. He was hospitalized and given IV abx for 14 days. His Group B strep turned into meningitis. I was tested during my pregnancy with him and it came back negative. I had two subsequent pregnancies-one resulting in a miscarriage and then Shae's birth. During these pregnancies I was tested numerous times for Strep B because it was believed that I was the carrier who had given it to my son. I was tested on the day Shae was delivered and it was negative. I am not the carrier-my son got it from someone else. I never even had strep throat until my son brought it home after starting preschool. My daughter has also had random unexplained fevers throughout her life. I can't say that they corrolate with her birthday though. I can tell you that they are a symptom of having an immune deficiency disease. IMO-the medical community may believe or think that all the different strains of strep are different. But if they don't have some genetic component in common-why are they all called strep?

I also think it is likely the strain rather than a genetic component. My older son is 9 and has often exhibited some minor symptoms of Pandas but never has had a full blown episode. He also has had a history of recurrent strep infections. At this point, I am too scared to have him tested.

Did you have your d's Pneumococcal titers tested? This test would show how her body actually responds when it has an infection and some doctors and patients believe that this number is actually more important. A person can have normal immunoglobulin (Ig's) levels and still have a problem fighting off infections. The opposite is true as well, a person can low immunologlobulins but have normal responses to the titers and not be considered as having a need for treatment. It is important to look at the overall picture of that person's health--not just the numbers. I would not mention the word Pandas until you get in to see the Immuno. I would send him a summary of her health history, your history during your pregnacy and mystery autoimmune illness and tell him you are wondering if something is wrong with her immune system.

FallingApart- I'm so sorry that she is slipping backwards. I hope this is only temporary. It's been five weeks since her IVIG and I think it is interesting to mention that all those IG's that she received have likely died off by now. They only have a lifespan of three to four weeks. If this is not a short term episode and it appears that her symptoms are back in full force, I would definitely consider doing the second round. At some point you should consider looking into the immunological tests to see if something is going on in addition to the Pandas. You will have to wait approximately 3-4 months after receiving IVIG to get accurate results.

What a find. Very interesting!

Ok Im depressed !! Im not seeing anything nothing !!!Tell me the truth maybe we waited to long ...When if you do ,do you see something be HONEST Please!!! Melanie- Take a deep breath and relax. After Shae's first IVIG my husband and I swore that we saw no changes and we're ready to consider it a complete failure. It's too soon to see alot of changes. Remember, your son has been sick for along time and his body hasn't been fighting the infection properly. Now he has all those good antibodies and his body is likely going to war with all the infection that has been floating around. His body needs some time to begin to heal. Everyday should get a little better but there will be some days were you see a total turning back of the pages. The first week it seemed like everyday was bad. The second week I think she had two bad days. The third week it was one bad day and a couple of small incidents. Week four was even better. Hang in there and be patient. It is too soon to call it a failure.

I wonder if the shirt chewing is a sensory seeking behavior. I know 2 non-pandas kids that chew on their shirts. Both were long time thumb-suckers (until age 6-7) so I wonder if they just transfered from their thumbs to their shirts! My PANDAS dd would start to suck on things during some exacerbations. These including her thumb, ice, and various objects around the house...not her shirt though! At age 7, my dd still sucks her thumb and I did notice during her flare ups that she was constantly putting other objects in her mouth but I just never thought about the shirt!

Okay, I just read a post by Keithand Elizabeth and she mentioned that her son was chewing on his shirt--my dd has done this for a couple of years! I never would have guessed that it was Pandas as well. Anyone else????

OMG! My dd has a terrible habit of chewing on her shirts--I never made the connection with Pandas. This disease is just amazing in what it can cause these kids to do!

Susan-I will definitely ask about the strep in the biopsies as long as I remember too! My brain is over 40 and doesn't always remember everything until after the fact! My dd is going to have an Endoscopy & Colonoscopy on the 21st to explore her GI issues. I'll let you know if they find Peptic Ulcers.

I'm glad to hear that other parents have experienced this same thing. It drives myself and my dh crazy but I honestly never thought it was connected to her Pandas until recently. Unfortunately for us, we have not seen an improvement in this behavior since IVIG. But, if that is the only lingering effect I can definitely learn to live with it!

My daughter was evaluated for ADHD for last year but was not given that dx--not even close.

Here is some information on subclasses from the Immune Deficiency Foundation: http://www.primaryimmune.org/publications/...pats/e_ch10.pdf Did you have your d's Pneumococcal titers tested? This test would show how her body actually responds when it has an infection and some doctors and patients believe that this number is actually more important. A person can have normal immunoglobulin levels and still have a problem fighting off infections. The opposite is true as well, a person can low immunologlobulins but have normal responses to the titers and not be considered as having a need for treatment. It is important to look at the overall picture of that person's health--not just the numbers. My daughter has normal immunolglobulins but does not mount a response to any of the titers and therefore is receiving the monthly IVIG.

Hi-I'm just wondering if your kids with Pandas have a hard time sitting still during meal time. For some reason my dd is constantly get up or stands at the table. We are constantly telling her to sit down but she seems unable to sit for more than a minute or two before she is off doing something else. Does anyone else have this problem???

whats imatrex It's migraine medicine. I wonder if Excedrin for migraines would work--the caffine wouldn't help his sleeping issues though.

I don't know the dosage for a child that size-mine weighs 41 lbs. You can alternate between motrin and tylenol. Tylenol can be given 2-3 hours after the motrin. I got an RX for Imitrex for my daughter.

The monthly iv's are they 1 day? how many hrs? Yes, monthly IVIG is for one day. The hours depends on each individual (weight, dosage, & how fast the infusion rate is). Shae's take about 4 hours. Some individuals receive what is called SubQ instead of the monthly IVIG. The Subq is given at home, I believe weekly, and is done using several needles subcutatously rather than through an IV.

My dd had a migraine for about three days afterwards. Thanks I did give him advil he seems better should I just give it to him just in case I called the md he hasnt called back yet My dd now receives IVIG monthly because of immune problems--what I've learned from those who have been receiving IVIG monthly for years is that they continue to do both the Motrin & Benadryl for up to two days afterwards to help with side effects.

I agree with dcmom. I think you should pursue the immune system testing in case there is an underlying issue that hasn't been found yet. More and more kids with Pandas seem to have something additional going on. Better to find out now during a good period then wait until she is sick again. Plus if something else is going on-having that knowledge in advance may help prevent another Pandas episode.

Is she complaining at all of joint pain anywhere? This can cause restless sleep. If so, try some Aspercreme before bed on the sore spots. This really helped my dd sleep better.

We did not experience any issues with sleeplessness after the IVIG. Is he having any other symptoms or side effects that may be contributing to his inability to fall asleep (joint pain, headaches etc)?

My dd had a migraine for about three days afterwards.

Yah, the idea has been floating around in my head especially with the H1N1 flu but I don't want to call anymore attention to her than necessary. We've been invitied to a party on Saturday night with some friends and I don't think I'm going to take her. I can't decide what is the fine line between paranoia and keeping her from getting sick. Parents today don't seem to think anything of taking their kids out when they are sick and I just don't want to take any chances.

Glad to hear school is off to a great start!