ShaesMom

Hi Pixiesmommy, My dd7 started wetting herself during the day this summer as well. She was also doing it at night time as well. She has not had a nighttime accident since she was 18 months old and never has had a daytime accident. She also would try to hide her dirty underpants. I only caught on to it because one morning I noticed she was wearing different pajama bottoms than what she had on at bedtime. I ran across the dirty daytime clothes buried in her dirty laundry basket. I immediately had her tested for a UTI but it was negative. She couldn't explain to me why she started having accidents. I never became angry with her over this because I had a feeling it was uncontrolled. She has had years of chronic constipation and has told me that her brain does not tell her when it is time to go or that she can't feel it. So, I just assumed it must be something similar with the wetting. During this time frame I noticed she would come in the kitchen and ask me for something sugary to eat. I've never been one to encourage sugary snacks for my kids (in fact she has never drank a soda pop in her life) so I was shocked to hear this request. She has always preferred crackers & chips. I have noticed lately that she no longer turns to crackers for a snack. She had severe eating issues during the height of her Pandas episode. Sorry I can't be of more help--I never did discover why she had this new habit. I don't believe she has had any accidents since she had IVIG. Sam

Not all kids have elevated titers. However if I were you, I would ask to have them redo the ASO titers and Anti Dnase tests. You can then compare them and see if there are any changes. It sounds like classic Pandas symptoms. Does your doctor believe in Pandas are do they think you are crazy? Many have had success with Azith and some with Augmentin. Can you get your doctor to try a steroid burst?

Michele, Sorry to hear you are having such a rough week. Unfortunately, I can't really answer any of your questions. I do know some people have a harder time with steriods than others. My husband becomes down right mean when he takes them for his allergies. I hope you are able to get a hold of a doctor soon. And you are right--the medical bills are overwhelming and seem to never end. Sam LOL, when I spoke with Andrea at Dr Latimers office, she told me that people are suddenly coming from all over USA, and I mentioned to her this site.

My dd also passed both 23F and 19F--failed all the rest. I have been in contact with another Mom that I "met" on the PID forum who has a son age 9 that has Pandas and a PID. He was dx'd with his PID because he failed the same pneumococcal titers. I wasn't going to post anything regarding this until next week because we are awaiting the results of another child's pneumococcal results but so far another Mom and myself have ran across a total of six children with Pandas who have failed this blood test. So, we know six who have had the test and those same six have all failed. Very interesting outcome so far. I'll keep you posted. Sam Buster, out of curiosity, which did your dd "pass"? My dd was not low on 23F and 19F and 5 was a 2.0. Susan

The Prevnar vaccine was introduced in the year 2000 so many of the younger kids have been vaccinated for the streptococcus pneumonea. My dd7 received four Prevnar shots between the ages of 2-3. So, when she failed it was not considered a baseline read but a true failure and was enough for immuno doctor to dx her with Selective Antibody Deficiency and start monthly IVIG. I know of two additional children who have also failed the pneumococcal titers test and been dx'd with SAD and started on IVIG without revaxing. I believe different doctors are handling this situation different. I can't begin to say who is right or wrong only that there seems to be a lot of inconsistancy in how it is handled. Our immuno doctor (whom I have nothing good to say about) is connected with UCLA and plays a big role with the Primary Immune Deficiency Foundation and has won awards. He supposedly is one of the best. His bed side manner leaves a lot to be desired. I have read on the PID forum that many doctors do indeed give the Pneumovax vaccine after a failed titers response and then retest. Interestingly, many of the individuals are adults who have never been vaccinated for it. I personally don't believe at this point that I would let anyone give my dd a vaccine with any form of streptococcus because while it is believed at this time that there is no connection between the different forms of strep--I don't think anyone can give us a 100% guarantee at this time. There are too many unknowns in medicine IMO.

I feel like we haven't much of a summer also. We definitely haven't had a chance to do anything just for fun. It seems like whenever I plan something for that day my dd wakes up and has a bad Pandas day which of course puts all plans on hold. My older son has been extremely bored but very tolerate of everything. Bless his heart. I'm sure the puppy thing will improve once he is potty trained and loses his puppy teeth. I also thought I wanted a dog and had to convince my hubby. I should have let him win this one.

Vickie- Thanks for the great link! K- Oh my gosh! I bet you are just sick at the possiblity that they have strep. My dd never presents with a fever when she has strep. In fact the last time, all she had was a tummy ache and headache, no sore throat. I'm really hoping it's just a tummy bug. How is she doing otherwise? Side effects gone? Sam

We bought a puppy a week and half ago because our dd loves pets and wanted one. Our family has been through the ringer this year and we thought it might bring some much needed joy to our house so we gave in. I have to tell you if I could do it over again-the puppy would stay at the pet shop! It is a lot of work and of course it all seems to fall on Mom. Plus our puppy seems to have a dominence issue with my kids-he bites and growls at them. I'm taking him outside every 20-30 minutes to go potty so relaxing is out of the question. Then there's the barking at night and in the morning so sleeping past 6:30 is also out. I am proud to say that I am a CAT person and will faithfully remain a Cat person!! LOL My suggestion is-if you get a dog make sure he/she is past the potty training stage.

Colleen, My kids won't hardly let them do a single quick swab--how do get yours to sit still and cooperate for two intense swabs???

I sent my husband in a few years ago to see if he was the strep carrier since he never seemed to get it when the rest of us did and if I remember correctly the test showed that he was not a carrier of Strep A but was positive for Beta Strep. Of course, we were told not to worry about it because it wasn't the same thing and wouldn't cause strep throat. I'm going to have to check into this and see exactly what it showed. I also think my dd may have been positive for strep in some of her frequent UTI's. HHHMMMM. Something to thing about.

We saw the promo this morning and my older son was glued to the tv and at one point turned to me and said "Mom, that sounds like something Shae has." Broke my heart. I tried to watch the special on tourettes a few months back and it was to painful. I'll tape this one and try to watch it another day.

Yes! That winter I had it from December until March and I literally got up in the morning, took my son and to school and came home and slept until it was time to pick him up. I gained 10 pounds in those four months because the only thing that sounded good to eat was shakes! Shae still remembers that year and will occasionally ask me if I still take naps when they go to school. She will also make a comment about the time that I slept all day while she watched tv. I know-bad parent-but I was literally exhausted!

[i get the test results back tomorrow. Very anxious about that! I don't understand what the strep pneumonea titers is all about, I'll have to talk to you about that again. Maybe we are on to something here with the strep B, or maybe it's just a dead end. It is interesting though that you had B infections and lot of strep A too.] For some reason I keep thinking today is Wednesday!! LOL If her results come back and show she failed the titers, I think we are on to something with the streptococcus pneumonea. To my knowledge I have never had a Strep B infection, they just assumed I was the carrier because of the vaginal birth but I always came back negative when they swabbed me (I've been tested five times). I never had a strep A infection until my son brought it home from preschool and then I had it for three months straight-couldn't get rid of it. That was also the first year my dd had strep at 18 months. The three of us have had chronic strep ever since. My husband has only gotten it maybe once or twice.

Hi Susan, My son, who is now 9, had Group B strep which turned into meningitis at two weeks of age. He spent 8 days in the hospital and another 7 on IV abx. It was VERY scary. At the time it was believed that he contracted the strep when he was born vaginally and that I was the carrier. I believe every pregnant woman is screened for this during prenatal care. I tested negative when I was pregnant with him. I also tested negative during a pregnancy that resulted in miscarriage and again was negative when I was pregnant with Shae. I was tested three times during the last pregnancy, all were negative, but I was still given abx during her delivery in case I was a carrier. Old school thought used to be that it had to come from the mother but I've read recently that it is now suspected that a newborn can get group B from anyone who is a carrier-especially after the first week of life. I've asked several times through the years if there was a connection with his Group B and all the strep infections that myself, him and his sister have had and always received the same answer--"NO, they are different strains." I've often wondered if my husband is the carrier but he always comes back negative for strep A and I don't believe he has ever been tested for strep B. It is interesting that Dr. Cunningham says that all strep is related and could be causing problems considering that Shae has failed the streptococcus pneumonea titers and doesn't make antibodies to those particular strains which are supposed to be different than Strep A. Did you find out the results from the blood work yet?? Sam

WorriedDad, So sorry to hear that your son has not improved much. I sincerely hope that you see more improvements as the weeks go by. I'll keep your family in my thoughts and prayers. Sam

thanks Shaes mom, But if she had Rheumatic Fever wouldnt we know about it? Is that not quite a full on illness? Or not? what led you to the diagnosis of PID? When our MD saw the elevated ASO titers she immediately thought RF or RA and sent us to the Ped Rheumy. I honestly do not know a lot about RF but I do think the severity of RA varies greatly. The Rheumy ruled out both, checked for heart disease caused by the strep and also checked for glomerulonephritis. We also see an Immunologist who immediately asked if we had been to see a Rheum. when we mentioned the leg/knee pain. We came upon the PID dx simpley by chance. The short version is....My dd has a severe food allergy that we retest every other year. this just happened to be the year for us to see her allergy doc at the Allergy/Immunology office. Before our visit, I sent him some info on Pandas, some recent blood results and my concerns that we were missing something (she has a long history of UTI's & contstipation in addition to strep). He told us that just because her Ig levels for normal it didn't mean that her body actually knew how to use the antibodies and we could run some more tests. The additional tests came back and showed that her immune system did not fight certain types of infection despite the fact that the antibodies were there so she was dx with the PID and will have IVIG monthly.

Keep us posted! Thinking of you today.

My dd also has had severe leg & knee pain. She had a viral infection about a month ago and was unable to walk for about six days due to the severe pain-we couldn't even touch her legs. If you haven't seen a Ped Rheumy it would be a good idea to see one and rule out Rheumatic Fever & Rheumatoid Arthritis which of course are also caused by strep. One on the main symptoms of RF is the inability to walk due to severe pain the legs. I've also recently learned that joint pain is a common symptom amoung individuals with Primary Immune Deficiencies--which we now know is a disease that our dd has in addition to the Pandas. Susan-Are you having the blood work done for the Pneumococcal titers test??

I'm so glad you didn't give up and kept pushing. Remember, pump her full of fluids! She will be fine!! I'll be thinking about you today and tomorrow. WAY TO GO GIRL!!!!!!!!

We finally received our kit yesterday and is awesome! The kids played with it all afternoon.

I sent you a PM on this with some codes.

[ My gut tells me there's a link to all these kids. We don't know what it is but there's something the same in all of them. Such thorough backgrounds would have to be done, including family trees, to figure out what it is. I don't think it's just a fluke or luck of the draw. Maybe some day, they'll figure what group of kids you need to look out for. Vickie, Myself and another Mom are working on what we think may be that possible link. Hopefully, in the next couple of weeks we will know more information and be able to share where are thoughts are leading us. I think your gut is definitely right!! Sam

Wow, it would be so interesting to know why she feels that way.

Did she say why no child should be on Zith? Does she have something against long term abx or just zith?? Sam

K- Shae had her's done at the local hosiptal in the Ped's ward. We were able to scheduled ASAP. Also, our local hospital has an Infusion Room where things like IVIG are routinely done. We live in a town of 250,000 - small compared to where you are at. Can your Ped not send you to the regular hospital?? What about an allergy, asthma & Immunology office? Call around and ask if they do IVIG in their offices. If so, ask if one them would be willing to work with your Ped to give you the IVIG. You just keep running into one obstacle after another don't you.