bubblegum

You have alot of insight for someone your age and your mom should be proud of you!Have you thought about a job in the medical field for the future?I hope that you are able to enjoy the rest of the summer.(My daughter is 7 and not able to do things as much as we used to and now she has the thought stuck in her head that she is weird.I know how frustrating it is!)Take Care!

Hi,my dd7 has had ivig with Dr.B x2.When you call ask for Barbara(She does the precerts for insurance)If not available then see if you can talk to Louise.(She is Dr.B's nurse that does the IVIG)Dr.B uses Gammagard but I get my daughter's thru my insurance and they deliver it to them.We use Gammunex.Dr.B is out of network but we have PHCS and it is great!Louise is wonderful!

The vet did a mouth swab and it was + for Strep B for our dog "Bolt"He was still a puppy and he would lick my daughters face.We have another dog "Sugar"so we treated both of them for 20 days of Amoxicillin.Then waited about 2 weeks and re-checked them both and negative for Strep.Ask the vet to do a throat culture and sensitivity,it will tell you if anything is growing and what medications would treat it!

Sorry I don't have much time to read thru reply's but did anyone suggest sending blood work to Dr.Cunningham in OK?Her phone # is 405-271-3128 and lab 405-271-2133.Before our daughter was on antibiotics she would make noises or would stare.In her case she also has ocd.We started off sending labs to Dr.C and our daughter did come back in the Pandas range.Also Dr.B(he is a immunologist)stated that some kids do not need all of the vaccines that they require.In Pa they can have 4 or 5 of the same thing.He said after 1 or 2 times that the titers should be checked because they could make a immune response and they don't need the 3,4,or 5 dose.(I wish we knew this because we would have gotten it checked!)Our school wanted dd to have 2nd chickenpox(was only in first grade)and I said no!You do have the right to refuse.Our daughter does not come up + for strep but our dog had strep.He would lick her face.We treated both dogs with Amoxicillin 20 days and then re-tested and they were negative.Take Care!

Several months before we did IVIG dd was on Clindamycin for 10 days and ocd s/s were decreased.The bad part is that she took the liquid and the stuff is nasty.She would only do it for the 10 days.We do mix her meds in chocolate pudding( if it doesn't taste good )so she will take it.DD had 1st IVIG in May(I don't think the dose was high enough because she had gained weight from being on Orapred and also at times her OCD would tell her to eat more even though she was full.She is not doing this anymore but I hate to write it because you never know.)After the first IVIG she was able to jump rope which she could not do before and we have 2 dogs and when they bark she will scream at them to stop barking.Well after the IVIG she did stop screaming at them.She did do stuff that she hadn't done for awhile,if I was walking upstairs and she was at the top of the steps I would have to stop walking for a min("So I can do my OCD")and then I could walk up the stairs again.Also if my husband and I were talking we would have to stop talking.Before the IVIG she was wetting the bed almost every night.Now after the 2 nd IVIG it is alot better,she is using the bathroom before going to bed and getting up in the morning and using it.Before the IVIG's she would have to do OCD(just right)and would have to do something over and over again.(Like getting into the car she would have to get in and tap her feet a certain way and would have to re-do it if she didn't do it right)When she is doing ocd behavior and trying to talk to her it just makes her angry.You have to be quiet and just give her a minute.I think that at these times she is not able to process anything because of the ocd.Also before IVIG she would have to "Zap"something instead of doing ocd.She would actually say "Zap,Zap,Zap"Well she has stopped doing this.DD is scheduled to have IVIG with Dr.B the 2 nd week of August and he is giving her a higher dose.(I think the 1.5 dose)She has never come up + for strep and labs never showed anything for strep.My husband and I have done aso and anti d nase b and ours is ok.(I did test + for strep G and was treated for it months ago)Also our dog had Strep B in his mouth and we treated our 2 dogs for 20 days with Amoxicillin and then we had them re-tested and they were negative.(People thought I was crazy )when I read that you should get your dogs tested for strep and our dog"Bolt" came up +.We didn't swab"Sugar"but we treated her anyway.It was easier to have the vet order labs and Amoxicillin for the dogs then it is for us to get tested!DD recently has had good and bad days.We did give her Advil 200 mg every day for a week but hard to tell if it made a difference.She complains of the liquid burning her throat.(Last week I tried to do her throat culture because the lab can't do it(but they gave me a swab)and she wouldn't let me.She knew she was going to have blood done so she was anxious.I could only do her tongue but it didn't show anything.A 1/2 hour to a hour before labs I put Lidocaine cream(also called emla cream)on her arm and I cover it with a band-aid.So she doesn't feel the stick.(The time before this one she was worried that we were taking alot of blood and ocd kicked in.)This time she didn't mention the blood.We also gave her Benadryl before but we still had to hold her arm for a min and once the needle was in she was ok and we could let go.A few days ago she had a really good day,she was able to get her hair cut and she has not been able to do this for months.Also she let the girl wash her hair and it has been about 2 weeks since it was last washed.(My husband had to stand in the tub and draw with bathroom crayons with her and distract her so I could wash her hair.It is ocd that it be dirty and she will not let us comb it)So when we went to get her hair cut it was so knotted and she looks like she is neglected!Her hair is now shorter and cuter, but I can't wash it.She was in the tub 2 days ago and played with toys and bathtub crayons.(She always wants someone with her most of the time)She was done and in the past she would get washed up and wash her hair after playing ,but now she can't.There have been a few times if we washed her hair that she would put soap back on her hair and leave it that way because it can't be clean.She also has some other ocd stuff that she does that is now better after the IVIG's.Yesterday was a bad ocd day.(But I look at her haircut and I know we will have better days.I hope it is the saw tooth recovery that people talk about.)DD will yell at us and tell one of us to get out of the room but then a few min later she will come to you and ask"Do you still love me?"I know that this is the OCD and not her.DD is really sweet and funny.I have not had a chance to talk to Dr.B but I wonder if dd cousin having Mono and dd being + for EBV and CMV is affecting her.DD was sick a few days before 2nd IVIG.DD has complained about her stomach hurting in the past 2 weeks off and on.We do give her probiotics and childrens gummy vitamins from gnc.Also Augmentin dose is now 900 mg 2 times a day.DD cam kinase range (done last year)was in the pandas range.Oh,she had 1st Ivig in May,2 nd in the first week of June and third scheduled for 2 nd week of August.(She is low on Pneumo titers and Br.B wanted to do IVIG to boost immune system)My insurance approved 3 IVIG's and after that I don't know!(If the question is has IVIG helped my husband and I both would say yes,but of course it would be awesome if she woke up one day and OCD was gone!Will update when we know more about lyme testing results and after our visit with Dr.Jones.)Also we are going to try advil again.Oh DD was very clear after 1 st IVIG that she remembered not having OCD one day and she did the next.She was sitting on the couch talking and she brought this up.My husband and I were never really sure exactly when it started.She had been sick in pre-school and then was out because she had surgery(Mass growing on chest that was removed bu(t benign)we couldn't get her back to preschool after that.Separation anxiety and as time went on OCD increased.(She in the past also had some tic like sounds but has not done them in awhile.Also before antibiotics she would hold fingers like a claw)Sorry this is so long!Gatito's mom

I really wanted to go to the OCD Conference in DC.(We live in Lititz pa)so it is not a far trip for us.DD7 has OCD that torments her alot of the time.We have seen Dr.N in NJ,Dr.L,Dr.T and Dr.B,also sent blood work to Dr.C last year.DD7 has been dx with Pandas/Pitand by Dr.B.Also last week sent blood to Igx in Ca.to do more testing for lyme.(her bands 41 have come up + with 2 different lab draws)We have a appointment with Dr.Charles Ray Jones in August.DD7 has had IVIG with Br.B 1st one in May and 2 nd one in June.She is scheduled to have 3 rd one the second week of August with Dr.B.We did not go to the conference because DD7 had blood drawn last week and EBV and CMV is +.My dd7's cousin went with us when dd7 had 2 nd IVIG (for moral support)and then the cousin was sick the next week and dx with mono(monospot was +)My husband and I also wanted to meet other families because we feel so alone in all of this!If anyone could post comments from Dr.C and Dr.K it would be awesome,I really wanted to hear if there were any updates or information that might help us.Also if anyone has advice regarding the EBV or CMV please let us know,should dd7 be on anti virals?Also any help with the possible lyme issue.Also dd7 has had mycoplasma pneumonia in the past.DD7 had to do homeboud last year from school,most of the year.We were hoping for her to be better over the summer so we could get her back into school in September.It breaks your heart to see your child suffer.DD7 is on Augmentin ES(Liquid)875mg po two times a day.(Has been on Prednisone in past.High dose was horrible and she tolerated a low dose ok)We tried Biaxin and Zithromax at different times but OCD increased and she could not sleep at all until 8 am and then would only sleep a few hours so we went back to Augmentin.Thank you for all of the people that post on here because without your help I don't know where we would be today!!!!Also did they mention if you can buy a tape of the conference?