ShaesMom

How is your son doing??

I said the same thing last night to someone in a pm. I think we should organize a cruise or something and pull together all the experts and have a vacation and pandas conference.

Let me clarify, obviously I don't think it is great news that your son has been dx'd with something else. I'm sure you knew what I meant but I couldn't sleep last night because I kept thinking about how bad it may have sounded to say it was great news!

Elizabeth- I think that is great news! My dd7 was the first on this forum (I believe) to be dx with an immune deficiency disease. She has had monthly IVIG for three months now and IMO it is the best thing to have happened. She receives it every 4 weeks. It is AWESOME to hear an Immunologist say that Pandas is just the symptom and not the problem! I tell you what you are the third person in two days to say that your child has been dx'd with an immune deficiency disease and montly IVIG is the treatment plan. The other two were by private email to me. Did you get a dx of Selective or Specific Antibody Deficiency? Common Variable Immune Deficiency? I just say Thank God we may finally be on to something here! I have goosebumps! This may be the missing link for all of us! My daughter is scheduled for an endoscope & colonoscopy on Monday to explore the GI side of this. She has had problems since age 2 so I'm scared to find out what may be going on. I also found out today through an Ultrasound that their is a problem with her kidneys but of course they didn't tell me anything else. It's been a long day at my house but I have several posts regarding the immune deficiency diseases and where you can find more info. Here is one of those posts to get you started: http://www.latitudes.org/forums/index.php?...art=#entry36601 I have some other great information I can get to you tomorrow. This is a good thing--you wouldn't have wanted it to go undx'd because the chances of your child getting better would have decreased significantly. Many people receive IVIG monthly. Sam

Hey Susan, I know you are likely already in bed for the night but I just wanted to say cyber HUGS! I'm keeping you in my prayers and please know that even though I can't physically be there to help you that you are definitely on my mind. Sam

Pixiesmommy, It's my understanding through our Pharmacist that they no longer make the Emla cream kits. You will be able to get the emla cream itself from the Pharmacy but you will have to order the Tegaderm Film to cover it off the internet. We have not found a local source that sells it. Glad to hear your appt went so well today. Hope things settle down for you soon. Sam

Never heard of it. Let us know if you find out what exactly it is.

Most of us here use either Azith or Augmentin. I think most of us agree that a 30 day dose of one of those two is the best option for getting the strep under control. Keflex is also another good option. amoxicillin and PenVk are not able to kill the strep if it is intercellular. They are only capable of getting any strep that is surrounding the cells. If I'm not explaining that correctly-someone plese correct me. Many of our children have been on long term abx so we are not shocked at the recommendation of 2 months. My dd7 has been on abx since the beginning of May. Welcome to the forum. You will find a lot of support and great information here. Sam

Shae had an Echo & EKG done back in May. The Rheumy who initially saw her detected a heart murmur that was not there three weeks prior. Both tests came back normal and the murmur was labeled as functional. She may have had a couple of minor vocal tics during her exaceberation last spring but nothing compared to what many of you have discussed.

Thanks Colleen and thanks for getting back to me regarding the Beta Strep too.

Okay, you can add me to list of cryers!! It is soooo encouraging to hear that there might be an end to this nightmare. Thank you so much for taking the time to share.

Did you know about the food allergies before? Is baker's yeast any kind of yeast that you would use in baking or is it something else? I guess my question is can he still eat bread? IgE relates specifically to allergens so it is likely elevated because of the food allergies. How many of his pneumo titers were below 2 and how many were below 1? Anything below 1 is a "complete" (and I use that word lightly) failure. Shae only had 3 above 1 so she was a "complete" failure. Are you going to revax if they recommend it-which they likely will. Let us know what you find out. Sam

Just a warning for anyone who is trying to avoid dairy that when I checked into this the colostrum was DAIRY.

Thanks for the reassurance Vicki!

Manda- My son was on IV abx when he was two weeks old for Group B strep & bacterial meningitis. His body seems to laugh at amoxicillan and augmentin so I have learned to just ask for something stronger or I will be back at the doctor with him two weeks later. I hope things are nutty in a good way and that Pixie is doing great! Sam

I have a doctor's appt for myself tomorrow. My GP is usually pretty good about giving me an abx if someone else in the house has strep because I also have a long history of strep infections. My husband is already on Omnicef because he tested postive last week for Beta Streptococcus-Non Strep A. He didn't have any symptoms and was tested just because he has a sore in his mouth and the Doctor knew I would appreciate it. She swabbed his throat-not the sore. so, now we are pretty sure he is a carrier. I have no idea what do about that since it is non strep A and I know the doctors will say it is no big deal but Shae doesn't make antibodies to ANY of the streptococcus-that's why she is on monthly IVIG now. I called Shae's Ped and she said the dose she was on is fine. I'm not inclined to believe it though. Kayanne-She was in to see her Ped a couple of weeks ago when she was complaining of a sore throat and the Ped told us that because of the abx a throat culture would likely NOT be positive. She was tested-all negative. I told the Doctor at the urgent care place that if my son came back positive I did not want amoxicillan or augmentin. He looked me a little shocked. He gave him Keflex. Susan-I was only at Urgent Care for an hour. Call anytime you need someone to talk to! Colleen-She weighs 40 pounds. So, is that enough or do I need to up it. I'm terrible at figuring out the math when it comes to rx's. I picked up new toothbrushes and toothpaste when I went to get his abx. I went to pick up a copy of his positive results and I have to say I am a little peeved. It looks like they received his results yesterday afternoon. I called them today to ask about it (it was suppose to be back today). He played football yesterday and went to school today. I could have had him started on abx yesterday and got myself in to see the doctor today.

Hi, I took my son to the urgent care facility on Saturday because he was coughing and running a slight fever-he looked horrible. They didn't think it was the flu so they swabbed him and I just found out that the culture came back positive for strep. ARG!!! He never had a sore throat either! i on the other hand have a sore throat but I always attribute it to my Fibromyalgia. So, what are your thoughts on what I should do for Shae. She is currently on 200mg of Erthyromycin twice a day. I have an RX for PENVK on file for her at the pharmacy. Is 400 mg a day a treatment dose or should I up it? Should I get the RX for PenVK filled and give her both?? Fortunately, she had IVIG on the 4th so hopefully her immune system is in full swing and will protect her. On the other hand, she was "off" last week so her Dad I knew something was up. I'm trying not to freak out right now but this scares the daylights out of me. One-I don't want her to go backwards and two-I don't want my son to get Pandas. Sam

Just received confirmation that my older son does indeed have strep. Since I have a sore throat too I guess I'd better go to the doctor myself. Well, that definintely explains her moods last week. Sam

Shae has had the Sed rate done several times and it always comes back in the normal range. The Rheumy ordered the CRP in May and it was also normal. I was surprised that the GI doc did request a stool sample. Maybe they can see everything from the biopsy?? When Shae was born she only weighed 5 lbs 15 ounces full term with a normal, healthy pregnancy (no I didn't smoke either). We just assumed at the time that she was small because of her food allergy (she was dx'd at 3 weeks). I became very ill everytime I ate dairy when I was pregnant. So, I don't ever remember her actually being on the percentile grid-she was always below. Do you know what the name of the test is for Lupus? I am wondering if she was ever tested for it. I was dx'd with Fibromyalgia a year ago and I don't know if they ever tested me for it either. Sam

My dd also reacts when around others who are ill and it doesn't have to be strep either. I had bronchitsis in May after she had started on her prohabx and she had highly elevated Pandas symptoms for three days while I was sick but she herself never became ill. Last week my husband and I both commented that she was "off" - minor flares in anxiety & tantrums-this started on Tuesday evening and continued through the week-she was back to sleeping in our bed again. Her brother came home sick on friday. They were not together all day Saturday until after 5 pm-she was fine all day-played with the neighbor kid, in a great happy mood. She spent a couple of hours around her brother that evening and she was having tantrums again and on the path to a major raging incident that we were able to quicky derail. I am awaiting the results of his throat culture-the doctor suspected strep. ARG!!

Hi Susan, Shae goes in next Monday for an Endoscope & Colonoscopy. She has had chronic constipation for almost four years and some other issues. I finally got her GI doctor on board to look further now that she has been dx'd with the immune deficiency disease. The GI doc tried to tell us for years that it was a behavioral thing and we just needed to repotty train her. Baloney! No seven year old wants to have accidents in their pants. Also, at age 7 she still only weighs 40 pounds and has not really gained much weight in the last couple of years so the she is now concerned about her "failure to thrive". I asked her Immunologist about the ANA test and he said we would draw for it next time she comes in for a check up. So, I think that is in October. Sam

Hi Nancy Last spring when she was really sick she would not eat breakfast - I'm assuming because of the anxiety before school - or lunch. she would eat dinner but it was never a full meal. She lost 5 pounds in a matter of weeks and weighing only 40 pounds it was significant. We have had several breakdowns in restaurants where she has had a panic attack and wanted to leave immediately. She seems to think she is going to get physically sick. She has also told us she does not want to eat out anymore period. She is doing better eating breakfast so far this year. When she comes home from school she is starving! At first, I packed more options or more of the one food I noticed that she was eating in the hopes that she would eat more but that plan hasn't worked. So, I have gone to packing only a sandwich or protein source and very few of the cookies/crackers in the hope that she would at least eat some of the sandwich when the cookies were gone. It seems to be somewhat working. I also count everything that I pack so I have a good idea of how much she has actually eaten. Luckily for me she doesn't throw anything away-just brings it home. We've tried tying a monetary reward to eating everything in her lunch but that only worked for one day.