Signs of Healing. Phew!

[Wilma Jenks]

well it has been a long 12 years, but i really see that we are at least on the right track now. it seems this bartonella was making my girl completely non-functioning and psychotic looking. the gains have been:

she has a friend for the first time and she is playing quite nicely.

the biggest think is that she sleeps! it is a miracle. i can't explain how torturous nights were for her. it was a living ######. pardon my french, but it the only word that really expresses what it was like!

she showers and can dress herself. she use to be too confused and psychotic. she is not aggressive with me and leaves the dog alone. her ocd is much much better. i want to thank you guys so much for helping me. it was killing me, to see my girl suffer. i was really starting to think there was no hope. i get my igenix results sept 15th. i will keep you posted. your all the best!!!!

 

ps. i do see some impulsivness creeping back in and i am a bit afraid it will interfere with this relationship she has. does the healing with the bactrim and minocycline have its ups and downs??? perhaps the pdoc. will add something in. not sure if the impulsivenss and teasing comes from the ocd or what happens. thanks again. any advice is welcome.

[Iowadawn]

Wow! This is wonderful! We have seen good improvement since going after bartonella in our ds12. Easy to say, hard to do: try not to let the hiccups or spikes in behavior get you. You are moving in the right direction. Dawn

[Suzan]

This is great news and confirmation that you are on the right treatment path. Hang in there and keep fighting!

 

Susan

[SSS]

Fantastic! You hang in there, you've worked so hard. Keep going, now you know you are on the right path!

[momcap]

Wilma, this is so exciting! It gives me hope for my DS, as we are adding in meds for bartonella next week. I am already seeing improvements on high dose amoxicillin. His OCD is disappearing in leaps and bounds. He is able to sit on a toilet for the first time in years. We go to Marineland every summer, and last week he asked if he could get a ticket to pet and feed the beluga whales. I was floored. Afterwards he spent 15 minutes washing his hands, but a few weeks ago he would never have touched them, or especially the dead fish to feed them. It's amazing! He also made a friend in the campground! OCD is decreasing, but mood lability is increasing. I don't know if it is the time of year (he always winds up in the fall), or if it's just the ups and downs of treatment. But I'm so pleased to see improvement in some areas already. I'm so happy for your little girl. I pray the improvements continue!!!

[MichaelTampa]

Glad to hear things are heading in a good direction, and you feel like things are getting a little bit more in control. As far as ups and downs, my treatment has had plenty of them, some a result of changes in treatment, and perhaps a couple that never really were understood in terms of why.

[tpotter]

Wilma, this is so exciting! It gives me hope for my DS, as we are adding in meds for bartonella next week. I am already seeing improvements on high dose amoxicillin. His OCD is disappearing in leaps and bounds. He is able to sit on a toilet for the first time in years. We go to Marineland every summer, and last week he asked if he could get a ticket to pet and feed the beluga whales. I was floored. Afterwards he spent 15 minutes washing his hands, but a few weeks ago he would never have touched them, or especially the dead fish to feed them. It's amazing! He also made a friend in the campground! OCD is decreasing, but mood lability is increasing. I don't know if it is the time of year (he always winds up in the fall), or if it's just the ups and downs of treatment. But I'm so pleased to see improvement in some areas already. I'm so happy for your little girl. I pray the improvements continue!!!

 

 

Momcap...just a thought...if he always winds up in the fall, could he have allergies to something like mold or something else? My allergies are worst in the fall, and I am very allergic to mold. Also, the ragweed here has been horrible the past few weeks. I've been feeling awful, and my DS' behavior has been ramping up along with sinus trouble and allergy looking face!

[JuliaFaith]

Wilma, sending healing thoughts your way for your daughter. So good to hear that she is finally showing some improvement! That is a really good sign that she is heading in the right direction. You are an awesome mother!

[momcap]

 

Momcap...just a thought...if he always winds up in the fall, could he have allergies to something like mold or something else? My allergies are worst in the fall, and I am very allergic to mold. Also, the ragweed here has been horrible the past few weeks. I've been feeling awful, and my DS' behavior has been ramping up along with sinus trouble and allergy looking face!

 

We did allergy testing and it was negative, but I think he does have allergies. I asked for a referral to a teaching hospital a few hours away. They did a full work-up and everything was negative again. ??? He gets red, itchy eyes a lot, and a stuffy nose that comes and goes, dry cough comes and goes. He had an anaphylactic (sp?) episode one time and we never figured out what it was. That was very very scary. That episode led into scarlet fever and the worst PANDAS flare we've ever had. Who knows?

 

Sorry for hijacking the thread Wilma! Still so happy for your daughter and hoping for more positive reports! We're in it together, through the ups and downs, and I'm so happy to have folks like you to share this journey with!!