MD NF Clinic

[Guest guest]

Welcome all new people. So glad you are here. Yeah! I've finally caught up on reading all the digests. I've been way behind. My intractable migraine has gotten so bad I've been ready to shoot myself. Just kidding. It is pretty sad, though, when all you look forward to is nap time and bed time. I even got Botox injections all over my head over two weeks ago which are supposed to get rid of chronic headache and it hasn't helped. I'm about to call my neurologist and cry to him I can't live this way.

Anyway, I finally took Nick, my eight year old, to see Dr. Slopis at the MD NF Clinic. He's been going to the Texas Children's Hospital NF Clinic. I was impressed that they noticed the bump on his forehead right away and told me it is a xanthogranuloma. I didn't even have to point it out to them unlike at Texas Children's where I asked them what it was and they were like "I don't know". They also noticed he is developing muscle wasting of his left lower leg. My husband has always said Nick runs funny, but I guess I've been in denial. Anyhow, not even Nick's neurosurgeon at Texas Children's that has him walk across the room and all has caught it before. It was good that they noticed it because Dr. Slopis told us to be careful if he gets more spine tumors later that they aren't trying to do major surgery trying fix the problem when it's the muscle wasting and not a tumor causing it. Then he noticed where he thinks he's developing a meningioma along the top of his skull which none of the radiologists or neurosurgeon had mentioned or noticed before. So, more things to watch. I liked that Dr. Slopis was good with Nick and talked with him. The head doctor over the NF Clinic at Texas Children's doesn't seem to talk to him much which they should since he is the patient. Nor does she seem to examine him as thoroughly.

I think Donna H. has mentioned the Perfinidine study before. Dr. Slopis said he should be able to get Nick into it. He said the Mayo clinic will be starting the Perfinidine study soon, I believe, but it might be a year before they have the study at MD . I've been trying to find information on Perfinidine, but haven't found much. So, now I have to decide if I want to get Nick in the study. Nick has his annual appointment at the Texas Children's NF Clinic in November will see if they catch the things Dr. Slopis did then I guess we have to decide who we want to keep seeing. We do like Nick's Texas Children's neurosurgeon. So, this is what I think of at night instead of sleeping. :-) Take care all.

[Guest guest]

Hi !!

I have been gone for 4 days, so I am just now catching up on MY email. I am really sorry about your migraine too, I KNOW how bad headaches can do a person.

Lee goes to Dr. Slopis as well, and that is where I first heard about the Perfinidine. , I was taking Lee to Children's in Dallas and they were telling me his MRI's were clear, and I took him to Dr. Slopis and HE told me that Lee had AN's. ( He also checks him very thoroughly and talks to him the way you stated. He is a good doctor and I was worried that when Lee was no longer an adoloscent, he would not be able to go to Dr. Slopis. Well, he is opening an ADULT clinic and I have started going to him as well! ) Right now, Lee and I just see him at the same time since we live so far away, so I am his OLDEST patient in the Children's Clinic! )

Dr. Slopis is a Watch and Wait type of doctor, but he has gotten ME where I am no longer in so much pain. Before going to him I went to a Neurosurgeon and all he told me was that the cluster of tumors in my lumbar area was causing my leg pain and back pain, and he would just have to remove the tumors one at a time to find out which one was doing this. Dr. Slopis put me on Celebrex and Nortriptylin and I am PAIN FREE now!! ) I was so bad before I could not stand up to cook supper or even dry my hair. (

Our next appointment with Dr. Slopis is in January, so maybe by then they will have the trials started on Perinfidine.

Oh, and I don't have an email address on Dr. Slopis either. He has several clinics in different hospitals. When I want to reach him I just call his nurse at MD and she either asks him what I need or relays the information. Her name is Evangeline.

Donna

Anyway, I finally took Nick, my eight year old, to see Dr. Slopis at the MD NF Clinic. He's been going to the Texas Children's Hospital NF Clinic. I was impressed that they noticed the bump on his forehead right away and told me it is a xanthogranuloma. I didn't even have to point it out to them unlike at Texas Children's where I asked them what it was and they were like "I don't know". They also noticed he is developing muscle wasting of his left lower leg. My husband has always said Nick runs funny, but I guess I've been in denial. Anyhow, not even Nick's neurosurgeon at Texas Children's that has him walk across the room and all has caught it before. It was good that they noticed it because Dr. Slopis told us to be careful if he gets more spine tumors later that they aren't trying to do major surgery trying fix the problem when it's the muscle wasting and not a tumor causing it. Then he noticed where he thinks he's developing a meningioma along the top of his skull which none of the radiologists or neurosurgeon had mentioned or noticed before. So, more things to watch. I liked that Dr. Slopis was good with Nick and talked with him. The head doctor over the NF Clinic at Texas Children's doesn't seem to talk to him much which they should since he is the patient. Nor does she seem to examine him as thoroughly.

I think Donna H. has mentioned the Perfinidine study before. Dr. Slopis said he should be able to get Nick into it. He said the Mayo clinic will be starting the Perfinidine study soon, I believe, but it might be a year before they have the study at MD . I've been trying to find information on Perfinidine, but haven't found much. So, now I have to decide if I want to get Nick in the study. Nick has his annual appointment at the Texas Children's NF Clinic in November will see if they catch the things Dr. Slopis did then I guess we have to decide who we want to keep seeing. We do like Nick's Texas Children's neurosurgeon. So, this is what I think of at night instead of sleeping. :-) Take care all.

[Guest guest]

,

If you note by the time of night, this is what I think of at night instead of sleeping as well as you. It is the nurturing qualityof mom's to try to find a fix for our dear ones. I'll be anxious to hear of the Perfidione outcome and the trials. There has to be an answer. Let's keep the focus, the energy, and the prayers.

Anne is 29 and I can tell you that this stuff takes its toll on us. So be well. Vicki

[Guest guest]

,

If you note by the time of night, this is what I think of at night instead of sleeping as well as you. It is the nurturing qualityof mom's to try to find a fix for our dear ones. I'll be anxious to hear of the Perfidione outcome and the trials. There has to be an answer. Let's keep the focus, the energy, and the prayers.

Anne is 29 and I can tell you that this stuff takes its toll on us. So be well. Vicki

[Guest guest]

,

If you note by the time of night, this is what I think of at night instead of sleeping as well as you. It is the nurturing qualityof mom's to try to find a fix for our dear ones. I'll be anxious to hear of the Perfidione outcome and the trials. There has to be an answer. Let's keep the focus, the energy, and the prayers.

Anne is 29 and I can tell you that this stuff takes its toll on us. So be well. Vicki