Help... Azithromycin for PANDAS.... Dosage etc....

[TessaKrista]

Meg's Mom...thanks for your post. I will keep at it as long as is possible. Thanks for the great words of encouragement.

[TessaKrista]

EAMom, you are so right. I have learned to really really really appreciate the little things. I used to take a lot for granted. I expected A LOT. I now notice mothers more, I notice children more, I notice children who are not well...more, I notice the world around me, and I appreciate the world around me. I wish the best for all people. I now always say a prayer when I see a mother with a child with some kind of disability. My prayer asks God to heal the child; to help the child improve. I have shown my child that I am doing this, and I tell him that we should love all people.

 

I am a professor and a social worker, so I work with many many people with many many issues. I now use my heart and soul when I work with people... a lot of more than I ever have in my life. I have even more respect for all mothers. I have the deepest sorrow for mothers who feel sad because of what their children are going through. Before, I used to help people advocate for their children. Now, something has changed in me. I actually want to hug all mothers, but... I really can't. However, I believe that the transformation in me shows through when I am working with families. My heart has changed. My life has changed. I am more humble. I am more aware. I am more respectful of people. I appreciate the little things... yes that has happened to me. I appreciate the little things from my son. Before, I loved the little things, but expected more. Now, I love what he has, and I do my best not to put pressure or stress on him in any way.

 

One of my good friend's mother is a psychotherapist and a social worker. She said that her mother was always so relaxed with her, not allowing her daughter to be stressed about things. My friend said that when she wasn't feeling well, her mother would tell her to stay home for as long as she needed, and not return to school until she felt ready. Her mother constantly talked to her about feelings, and about self-care. Well, interestingly, my friend turned out to be the opposite with her children. She pushes them to succeed. I often chat with her mother, and her mother is always surprised at how many things her grandaughters are involved in, and believes that they are too stressed out. I now...now...see her point. I now... now...am at that place. I was able to help people who I worked directly with to assess how stressed their children were, and what to do. Unfortunately, I wasn't doing that in my own life before. NOW... I am.

 

I am enjoying the little things. I am enjoying playing soccer with my son in the field. I am enjoying playing tennis with him, just the two of us. I am enjoying playing hockey on the driveway with him, and calling over other kids to join in. I am doing what he likes to do, and I am doing it with him. Last year at this time into the summer holidays, my son was enrolled in brain camp the first week out of school, had tennis lessons, and swimming lessons the first week....and had was all set up for other programs for the summer. Boy, has life changed... I have changed.

[TessaKrista]

EA Mom...did you do the azithromycin pills instead of the liquid because of the dye?

[EAMom]

EA Mom...did you do the azithromycin pills instead of the liquid because of the dye?

 

NOpe...dd just learned to swallow pills at a young age (I think it was when she was in the hospital with PANDAS anorexia--7 years old).

[TessaKrista]

Thanks tired mom...

[TessaKrista]

Hey DCMom...challenging my energy into helping my son is something that I will and am definitely doing.

 

The intensity on this board is amazing. Parents are totally dedicated to finding ways to help their children. I love it.

 

Thanks DCMom. I am putting my resources together to try to find a way to help my little boy. When I first wrote this post, I felt helpless. It is very difficult to feel helpless, alone, devestated, in a nightmare, in a fog, depressed, worried, detached from the world, scared, humbled, guilty, and insignificant. I now feel hopeful that things will get better for all of our children. There HAS to be a protocol to help children who CHANGE COMPLETELY right after they get sick with sore throats. Doctors MUST respond to sore throats immediately. All parents need to be warned of the potential dangers that a sore throat can bring, because a sore throat can be strep. Lots of prayers...lots of reading...lots learning....lots of support from one another...lots of advocating for our children....and lots of action on our parts in order to invoke change in our children.

 

As you'll see in another post of mine, my son's doctor didn't believe that it was worth it to even do a strep swab two months after he had confirmed and treated strep, because it would be positive anyways. This culture that fears antibiotics is causing doctors to miss things, which in turn causes parents, like myself, to be laissez-faire about sore throats/strep in our kids, not realizing the possible implications of untreated strep. I now know. I now know that stress + untreated strep + bad news. I now have to find a way to eradicate any lingering infection from anything, including some possible walking pneumonia, in order to see results. It sounds like remaining on azithromycin is the way to go. I now have to convince his pediatrician to do that.

 

Hopefully Dr. K will do that if my son's pediatrician does not. I know that he favours IVG, but that is not the way that I would like to go right now.