kferricks

First of all, I'm sorry that I don' t answer many posts here. The truth is because I dont really know most answers or how to respond to many topics that touch my heart. (But I read them all and say a silent prayer) Second, what other kinds of doctors are you working with? I only have a Pandas doc. I have a family doc who is interested (wants to be kept up to date) but is unwilling to help. 3rd, What is C3D Immune complex and what does it mean? I tried looking it up on line? 4th, Can someone please help me understand this? M.PNEUMONIAE AB (IGG) EIA 3.09 (H)? Does this mean she has myco p.? Does this mean she should take the Western Blot test? she had the other one done. My dd did well with the prednisone, and he kept her on the same dose of omnicef. He said that if she was'nt cloe to 100% by out next visit this month that we would have to consider IVIG. But after reading many different posts on here, well I'm worried. Is it the right way to go? While she has kinda improved a little since last month, I've also discovered new OCD. Though/vision ocd. She is definately not 100% maybe 60 (barely). Can I just have some others thoughts? suggestions? I can't sleep.

I'm sorry. I'm not sure if my DD ever halucinated but she has had times that she did'nt remember. After a couple months of my DD rages, I did instill a new law in my house. She was allowed to have a rage anytime she wanted but she had better go into my room to do it. She does go into my room anytime she is upset now. She used to go back there and scream at the top of her voice for hours. It was much more bearable for her to remove herself and then I would go in and check on her. Sometimes she wanted me there and other times she would scream louder if I came in. It got to a point that she would go in and I would wait 5min, then 1 min etc. before I would go check on her. This eventually led to her being able to go in by herself and eventually come back out on her own much calmer even if she was still upset. I know this is probably not much help and I'm sorry, my DDs' rages were never abusive towards me except twice. Do you see them comming on before they actually come on? I was always able to see that. If you do, maybe you can walk her into a specific room (beds, padding) and explain that you see she is very anxious and that she needs to stay there untill she is feeling a little better? With this, it is good to know relaxing technics like visualizing. Have her write down (while she is in a good place or moment) something that is peacefull to her. Then practice with her on how to use it. Like a whitehorse, can you see it standing in the meadow? What color are the flowers? Does the horse have thick long flowing hair? Can you hear the babbling brook? Sounds corney but can have a very calming effect. But really needs to be practiced a couple times when they are receptive before it will help during a rage. (((hugs)))

My DD just turned 11 in Nov. She came home the first day of school with sudden onset. I drove her to school for about two weeks. When I realized it was just too much for her (and me) I went to the school and had a conference with the principal and social worker and told them what was going on. They suggested a 504 plan. I left and took her to a psychologist who sent the paperwork stating that she was not to attend school until further notice. So the school set us up with homebound schooling. I think the kids have enough going on without the added stress of trying to get through school and not be contaminated.

"no, I did'nt read the book {Saving Sammy } because I'm old school. Back in the day, we would have just told her to knock the crap off and deal with it" grrrr....

Prayers for you all!

Thanks for posting this. Gives one so much to think about.

Can't wait to hear back from you guys~

Yes. I have a similar problem with my DD 11yr and grandbaby 2 1/2. I feel like a referee often. My only respite is when my oldest son comes over for a couple hours and plays video games with her. She adores him and trys to hide most her symptoms infront of him. Which often leads me to pay dearly for it later that night. But, for a few hours of being able to do something on my own, I'll take it.

Is this a seperate test than the one he mails to you?

I'm so glad that things went well ! But sorry for 3boysmom being cancelled. Pizza of Boston is yummy up there. Its at the McDonalds rest area. Dr.B told us that if Haley was'nt closer to 100% by Feb 14 we would have to discuss IVIG. Well, she was off meds for 1 week between visits and she backslid on us, and now is holding steady. Would anyone be willing to explain exactly what the child goes through with that? How long each process is? I really like Dr.B.

I so understand. Just a couple days ago, my dd's ODD kicked in full gear the whole day and after walking on egg shells all day and then her starting in on my 2 1/2yr grandbaby, I ended up reaming her out (practically flipping out) which sent her into a full-blown rage. I felt bad, guilty etc. and ended up in the bedroom with her for an hour., while DH was consoling the baby. Its like you get mad, then you feel guilty cause you know they can't help how they feel; but some part of me thinks they still have to somehow be accountable for thier actions. Anyway, I had apologized to my DD for hollering and said I'm only human, her response was well then how come you never cry? I was shocked. I have cried so many tears that I don't seem to have any left. I hid them from her trying to keep her calm. Maybe I was wrong. Maybe you did a good thing. She told me that she has never seen me cry. Something I never thought about. I don't know but I'm sending you cyber hugs and if I could just reach right through this screen I'd give you the biggest hug. I can't wait for you to see Dr. B. Once you just even meet him and talk to him, he will put your heart just a bit more at ease. My DD in a couple weeks has come so far and has been showing more like herself/ after months at the ocd clinic could'nt help her. Your on the right track; have hope. Incase you did'nt know, my DD only went to less than one month of school this year and has been doing homebound schooling also. She is also way behind, but after meeting with Dr. B, I still have hope that she will pass to the next grade. I'm saying this and I know she will not be in school in the near future. Right now, just consentrate on letting her get better and heal. Push the thought of schooling way in the back of your mind. It really is not that important. You and your family come first.(((hugs)))

With the prednisone, I actually had to take the kid out and buy her a special milkshake to take them everyday. When she had the Omnicef capsuls, I took a small jelly glass and mixed the capsul with any kind of pop I could find. But the Omnicef liquid is really nasty to her. So, I like the idea above of using strawberry....you know, I wonder how she would like it if I mixed it in a shot of icecream... this thread has given me a couple ideas that I will surely try to put to use.

Yes! I did'nt see improvement till a couple days after the prednisone and then at the end of the improvement week, we had 2 days that I thought she was backsliding quickly, but then the next day she started moving forward again. It is the best feeling when you see any improvement, and I just wanted to let you know if he backslides a day or so, don't be alarmed. Give it a day or so to see if he regains his momentum.

I did just email him. *fingers crossed*. We switched her because she was giving me sooooooooo much trouble taking the pills. At one point the only way I was able to get it into her was to disolve come in pop. (which I was worried would not work as well). I also thought that maybe the liquid would work better, (but you know it is hard to get every drop in that way). After tasting the liquid, it makes her a bit nausous and she is begging to get back the pills. lol I did tell her that she better not give me any trouble taking the pills and that we are not switching again.

If your child has taken the pills and then switched to liquid (omnicef) have you noticed a difference? I mean did one seem to work better than the other for you? My DD was on the pills and then we saw the doc on the 10th and switched to liquid (which she despises). She was off ABX for a week because her prescription ran out and we had to wait till our appointment. I do'nt know if that is the reason and it just has to take awhile to be in her system or if its because she is the liquid. I know that sounds dumb, but I just have to ask. Also wondering, if I was to shoot off an email to the doc if he would be willing to send me another prescription for the pills instead.

Exactly!

.That is so great! Gives me hope, I dream of the day that I can have my own bed back (((hugs)))

I for one am glad you posted this. We need all the information that we can get; knowledge is the power that is going to help our kids. I will keep in mind your story if down the road I find things are not going as well as I think they are.

Wonderfull!

Approx 30yrs ago, I recieved the bicillan shots once a month for 5yrs, and took abx every day. I had Rhuematic Fever. I had mine on the backside of my hips. It was the only place that I could tollerate it. I believe the meds are frozen (or just feels like it). Oh and mine was just 1 shot 1,500,000mgs (at least thats what I remember them saying it was)

You guys are awesome!

Thanks! I'll check it out.

Thanks for all of your responses. I really do appreciate it. I realize ppl mean well; but sheesh, I'm sorry, I really do'nt know much about the sensory tactile. I'm hoping to learn as we get her well. All I know is that we thought her rubbing issues as far as unable to button pants etc., Wear shoes, and hopping into bed or on the couch was ocd. The difference is that if its ocd she can tell me exactly why she has to do something. With these, she complains that she ca'nt rub and has no explaination as to why. An example would be: her doing a full body rub to me. I would ask why are you doing this? Answer: Because your clean. (I'm clean and if she rubs her hand or whatever on me, it is now clean too) Now, try to get her to put shoes on. The eyes get hugh and the anxiety is way up. T hreaten her with punishment and she will cry and rather take that punishment because it is too unbearable to feel that sensation.

T hanks Kim! It is true, like an IEP meeting everytime I turn around. I may take you up on that offer about the email. I try to be patient with ppl because I understand that they do not understand. This is something that no one could ever understand unless they are living it. But when ppl start throwing random questions at me I start sounding like a bubbling idiot because I know I'm using words/theorys and descriptions that are above and beyond them. Only because I'm talking from experience of what I have already been going through and they are just either realizing that something is very wrong or wondering why we are doing all of this because they do'nt see it. LOL! See I did it again! Bubbling!

Thanks for posting this. She is well spoken and very clear.