tag:blogger.com,1999:blog-57888602011-07-13T22:11:43.690-07:00Updates regarding Danilo's health and progress.Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comBlogger701100tag:blogger.com,1999:blog-5788860.post-1112478793459784652005-04-02T13:48:00.000-08:002005-04-02T13:53:13.460-08:00

Oge noticed a tremor in Danilo's hand on March 26th that has not recurred. Danilo has a rash on his shoulder. I believe Oge is meeting w/neurologist and neuropsychologist on April 20th about speech delays, etc.

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1106089793786884432005-01-18T15:09:00.000-08:002005-01-18T15:09:53.786-08:00

Danilo had his final dose of ACTH the day before yesterday. Cross your fingers.

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1100329735748417362004-11-12T23:07:00.000-08:002004-11-12T23:08:55.746-08:00

Danilo has been going to preschool for two weeks. Oge thinks he might go off ACTH by the end of the year. He turns five on November 22nd. Hurray for Danilo!

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1087444071486821372004-06-16T20:47:00.000-07:002004-06-16T20:47:51.486-07:00

Oge says they were able to remove the tumor with the thoracoscope, so they didn't have to open up Danilo's chest. Whew! Danilo doesn't even have to stay overnight at the hospital. Oge took him home about 8:30 pm. The pathologist looked at the mass already and determined it was a benign neuroblastoma. Danilo slept a long time after the surgery, but Oge says he is in good spirits and hungry.Maybe

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1086753725845441642004-06-08T21:02:00.000-07:002004-06-09T14:50:50.016-07:00

Blood Pressure Oge took Danilo to Dr. Mitchell Monday. Danilo's blood pressure medicine patch has been giving him rashes. So, Mitchell prescribed something different. ACTH In July Danilo's ACTH dose will decrease again. Mitchell and the oncologist, Dr. Anderson, will be at a neuroblastoma conference in Italy next week when Danilo has his surgery. Surgeon Went with Danilo and Oge to meet the

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1085685034370883052004-05-27T12:10:00.000-07:002004-05-27T12:10:34.370-07:00

Surgery will be June 16th at CHLA.

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1085515486317036602004-05-25T13:02:00.000-07:002004-05-25T13:04:46.316-07:00

Here are some upcoming appointments: 5/26 - bone scan, meeting with oncology Dr. Anderson 6/2 - MIBG injection 6/3 - MIBG 6/7 - appointment with Dr. Mitchell, neurology 6/8 - appointment with Dr. Shaul, surgeon The tumor surgery (tumorectomy??) will be on either 6/11 or 6/16.

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1085128297752179762004-05-21T00:35:00.000-07:002004-05-24T17:12:16.183-07:00

I tagged along with Danilo and Oge to their appointment on Tuesday at Children's hospital. We were supposed to meet with the surgeon, but he had been called into emergency surgery. So, we talked to his associate, a paediatric surgeon named Kasper Wang. We thought that Danilo would get scheduled for surgery to remove the neuroblastoma. However, Dr. Wang said Danilo needs an MIBG scan first. The

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1084816355255037002004-05-17T10:42:00.000-07:002004-05-17T10:52:35.256-07:00

Here are some excerpts I stole from some online information sites. Danilo's tumor is very tiny, by the way ... : Neuroblastoma is predominantly a tumor of early childhood, with two thirds of the cases presenting in children younger than 5 years. In rare cases, neuroblastoma can be discovered prenatally by fetal ultrasonography. Neuroblastoma originates in the adrenal medulla or the paraspinal

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1084579608956319572004-05-14T17:05:00.000-07:002004-05-14T17:06:48.956-07:00

His eyes are bloody, but the strabismus appears to be gone. We saw the ophthalmologist this morning and she checked his vision and it's pretty darn good so he should heal up fine.

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1084319296672569342004-05-11T16:41:00.000-07:002004-05-11T16:48:16.673-07:00

We had an appointment with the oncologist this morning. He said that Danilo's tumor is technically a neuroblastoma, but they are not as feared these days as they used to be. He is not expecting Danilo's tumor to be very aggressive and he's not expecting to have to fight it with chemotherapy. They are excited about removing it and doing all kinds of lab experiments on it though. The surgery is not

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1083879808981965712004-05-06T14:43:00.000-07:002004-05-06T14:46:42.140-07:00

Tuesday he had his CT scans at Children's Hospital. They found a tiny peanut sized mass. I talked to Dr. Mitchell today. She says the mass is located in the T11 area on the right, above the diaphragm. They will go in with a scope to remove it. I also talked to the pediatrician today. He contacted Dr. Kimiko at Cedars who looked at his scans last year. Kimiko claims that he looked at it again and

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1083089946328209042004-04-27T11:19:00.000-07:002004-04-27T11:22:10.546-07:00

She' starting him on a blood pressure medication. Also, by the end of May, he will be taking 1/4 of the amount of ACTH that he was taking when he started. They are very impressed with his progress. Due to the anesthesia, we may have to postpone the CT scans on Thursday because he has a slight cold. We'll see how it goes.

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1082582088921617042004-04-21T14:14:00.000-07:002004-04-21T14:17:47.280-07:00

April 21, 2004 Dear Health Net Appeals Officer: I am writing to you to appeal for the payment of the attached bills. My son, Danilo, came down with a rare illness called Opsoclonus Myoclonus Syndrome (OMS) in August of 2002. He was 2 ½ when it all started. For one and a half years, he was unable to walk due to severe ataxia and due in part to the fact that he was badly misdiagnosed. When it all

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1082581959937198012004-04-21T14:12:00.000-07:002004-04-21T14:15:38.326-07:00

Checking for neuroblastoma once again.

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1081360189748584802004-04-07T10:49:00.000-07:002004-04-07T10:52:33.653-07:00

We saw the ophthalmologist yesterday. She said Danilo is a poster child for amblyopia. The vision in his lazy eye has really improved. The surgery will be cutting a muscle or two in the eye and reattaching them so that they are more taut (or something like that). Still waiting for CT scans although the authorization went through. Potty training is going quite well. He's not as ravenous as he

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1080001296120660592004-03-22T16:21:00.000-08:002004-03-22T16:24:04.450-08:00

I just have one correction - Danilo's next appointment with Dr. M. is on 4/26. His CT scans are still up in the air, although I talked to Beverly just now and it should be straightened out in a couple of days.

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1079987729391491592004-03-22T12:00:00.000-08:002004-03-22T12:41:35.466-08:00

I went along with Oge to Danilo's doctor appointment today. Danilo has gained 5 pounds only since his last visit. Weird, 'cos it looks like more. His face is a little puffy from the steroid treatment I guess. His blood pressure was slightly high (131/77), but Mitchell doesn't think he needs blood pressure medication at this point. Danilo has been getting 1 cc of ACTH daily. For the rest of March

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1079467004893507402004-03-16T11:56:00.000-08:002004-03-16T11:59:06.560-08:00

I just heard that insurance authorized the new MRI so finally we'll get the scans done again. Maybe they will find something? Hm... As a side note, I took Jon Carlo to see Linkin Park last night. Yay!

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1079157877051525322004-03-12T22:04:00.000-08:002004-03-12T22:06:55.856-08:00

Just had dinner with Oge, JC, and Danilo. Danilo's walking is better and his intention tremors have diminished. Oge says the drooling and snoring are much less. His verbalizing continues to improve and his appetite is huge. He's already put on weight and looks better. The strabismus in the left eye has switched to the right eye.(It's done this at least once before and switched back I believe)

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1077916091658862052004-02-27T13:08:00.000-08:002004-02-27T13:10:16.030-08:00

Danilo has a cough and a cold today. He is walking steadier and steadier every day now. He's got physical therapy today so I'll be interested in what his therapist says about his progess. The microscans are in limbo still. Beverly doesn't have the request so I emailed Dr. M. She actually emails me back very quickly most of the time. It's really nice. We'll probably get our own blood pressure

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1077667912986706982004-02-24T16:11:00.000-08:002004-02-24T16:13:54.450-08:00

Yeah, I would agree he is much more easy-going emotionally. I'm not sure if it is the ACTH or if he is just so happy that he can walk around. Last night I asked him to come and sit with me for a few minutes, but he said he was busy. He's got much more important things to do than sit around with me. His appetite and his sleeping are about the same as always I think.

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1077665072874660192004-02-24T15:10:00.000-08:002004-02-24T15:26:34.216-08:00

I just visited Danilo on his 4th day on ACTH. On a scale of 1 to 10, I'd say before treatment, Danilo's ataxia had been fluctuating between 8 and 10. Today I'd say it was a 5. His ability to walk and stand unassisted is markedly improved. I didn't see a huge change in the intention tremors, but Maria seemed to think he was less shaky. She indicated that he seemed more easy-going emotionally, was

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1077565789937600492004-02-23T11:49:00.000-08:002004-02-23T11:51:49.700-08:00

He screams a bit and fights, but when the needle comes out he holds the alcohol swab himself, gives me and the nurse a stern look and then walks off to play. And he is making up for a year and half of not walking without assistance. He will not sit still. He has to get up and walk around. Still wobbly, but getting better. I have noticed that he is a bit more inquisitive too and people are able to

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1077331277376733752004-02-20T18:39:00.000-08:002004-02-20T18:54:54.983-08:00

The ACTH and syringes arrived! (Hey, Oge: I fogot to ask you - Didn't Dr. Mitchell say she was going to do microscans to look for a neuroblastoma? Is that scheduled? Or in insurance-limbo?)

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1077215322946587332004-02-19T10:28:00.000-08:002004-02-19T10:30:39.043-08:00

Actually, the nurse will probably come Saturday.

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1077149079694473012004-02-18T16:04:00.000-08:002004-02-18T16:06:35.280-08:00

The meds are coming via Fedex from Florida on Friday. I'm hoping to get the nurse to come on Monday.

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1077136231344638712004-02-18T12:30:00.000-08:002004-02-18T12:32:26.403-08:00

They just approved the medicine. I have to call this insurance lady back after her lunch and find out if they are going to deliver it or if I have to pick it up or what.

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1076630427533997402004-02-12T16:00:00.000-08:002004-02-12T16:02:17.123-08:00

Today, insurance authorized the home nurse visit, but we're still waiting for the auth for the ACTH. Hopefully tomorrow ....

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1076012228118034412004-02-05T12:17:00.000-08:002004-02-05T12:18:50.233-08:00

Dr. Mitchell saw the opsoclonus and the gears are in motion to start Danilo on ACTH asap. Depending on the insurance, it could start as soon as tomorrow or Monday. Of course there will be all kinds of weird side effects that go with that, but I am so relieved that he will start treatment. Dr. Mitchell also wants to do the whole body scan again to look for a neuroblastoma. I am elated, but I am

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1075498267961420992004-01-30T13:31:00.000-08:002004-01-30T13:32:43.936-08:00

We saw the ophthalmologist this morning. She will do surgery to fix his strabismus in a month or two. Meanwhile we have to be very diligent in using his eye drops and patch to get the vision up a little more in that eye before the surgery. The date of the surgery will depend on whether that start him on IVIG or not, but the gears are set in motion. Next Thursday we will see Dr. Mitchell.

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1075148833903510342004-01-26T12:27:00.000-08:002004-01-26T12:28:47.640-08:00

Dr. P just called me. I am disappointed only because the results still aren't conclusive. He said that the spinal tap showed "he doesn't have all of the OMS markers". He has "unconventional T-cell markers", but not "increased B-cells" which is the telltale sign of OMS. He feels that the case for mitochondrial disease is weak, but he wants to wait for that gene panel to come back which will be 6-

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1074934749096396532004-01-24T00:51:00.000-08:002004-01-24T01:09:48.640-08:00

We met with Dr. Pranzatelli on Wednesday along with Liz Tate, the nurse practitioner with whom we've been communicating, and another research assistant named Tyler. Dr. P questioned Oge thoroughly about Danilo's illness and Danilo was given a long examination that was videotaped. As scheduled, Danilo was given another spinal tap, so a special "immunophenotyping" test could be performed. I didn't

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1074317689997762702004-01-16T21:22:00.000-08:002004-01-16T21:52:51.403-08:00

Flight Information: Southwest Flight 1131 M Tuesday, January 20 - LOS ANGELES INTL(LAX) to CHICAGO-MIDWAY(MDW) Depart LOS ANGELES INTL(LAX) at 07:05AM and Arrive in CHICAGO-MIDWAY(MDW) at 12:55PM ATA Flight Number: 3323 * Flight Date: JAN-20-2004 400PM - 500PM Departs: CHICAGO (Midway) Arrives: SPRINGFIELD Seats: 12A 12B 12C ----------------------------------------

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1073855936178076992004-01-11T13:12:00.000-08:002004-01-11T13:20:13.483-08:00

Georgetown University Medical Center Institute For Molecular and Human Genetics Molecular Diagnostic Laboratory Phone: 202-444-1750 fax 202-444-1770 Specimen type: muscle Test: Mitochondrial DNA Mutation Analysis Method: Point mutations were analyzed by multiplex PCR amplification of the relevant segments of the mitochondrial genome followed by dot blot and hybridization with ASO (allele

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1073855536527571512004-01-11T13:09:00.000-08:002004-01-11T13:13:33.936-08:00

Athena Diagnostics Four Biotech Park 377 Plantation Street Worcester, Massachusetts 01605 www.athenadiagnostics.com 800-394-4493 508-756-2886 Patient: Danilo Vargas Specimen type: Muscle Test Category: Diagnostic (Symptomatic) Test requested: Mitochondrial Enzyme Deficiency Myopathy Panel Requesting Physician: Krieger, Mark Report to: Children’s Hospital/Pathology and Lab Medicine Address: 4650

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1073855373451359932004-01-11T13:04:00.000-08:002004-01-11T13:10:50.890-08:00

Surgical Pathology Report **Preliminary Report Name: Vargas, Danilo Physician: Krieger, Mark M.D. Diagnosis: A. Skeletal muscle, left thigh, biopsy: Consistent with mitochondrial myopathy See comment Ignacio Gonzalez,MD Clinical History: 3 year old male with hx of mitochondria disease, unknown spinal cord myelopathy Preoperative diagnosis: Left muscle biopsy Procedure: Left Thigh muscle

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1073369813667874012004-01-05T22:15:00.000-08:002004-01-05T22:18:05.403-08:00

Just FYI.In reviewing Danilo’s medical records, I see some inconsistencies. 1.Dr. Niparko wrote a long report on 2/28/2003 which states "Movements are mostly ataxic, but he also demonstrates a great deal of chorea, sometimes suspicious MYOCLONUS."[Capitalization mine] In my last lengthy conversation with Niparko back in October regarding the possibility of OMS, she rather strenuously asserted

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1073087978794334542004-01-02T15:59:00.000-08:002004-01-02T16:00:46.716-08:00

Upcoming Appointments: Dr. Niparko - Jan 9th Dr. Pranzatelli - Jan. 21st in Springfield, IL Jan 30 - ophthalmology appt Feb. 5th - Dr. Mitchell at CHLA Over the break, we got all the medical records. Getting them from Kaiser was not difficult, but I had to go in and talk real nice and friendly to the records people. Actually, they were very nice ... but I don't understand why it takes so long

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1071003914354207892003-12-09T13:05:00.000-08:002003-12-09T13:05:59.186-08:00

Well, it would be convenient. . . I have a bit of a dilemma which if anyone can offer any advice on, I would appreciate it. In a nutshell, should Danilo get a flu shot or not? I believe it is not a coincidence that he was a lot shakier after the TB test. Even though his pediatrician says it was a "non-event" and therefore an impossiblity. He was pretty shaky and more irritable for about a week. I

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1070008098779849132003-11-28T00:02:00.000-08:002003-11-28T00:28:51.950-08:00

So, after Danilo's biopsy a few months ago, a pathologist at Children's Hospital looked at it and said it was abnormal. Then, the tissue was sent to an out-of-state lab for more in depth testing. After inquiring as to the results, Dr. Niparko left me a message last Friday saying the "respiratory chain enzymes" were "all normal." She still maintains that Danilo has mitochondrial disease and says

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1069467439213443402003-11-21T18:17:00.000-08:002003-11-21T18:17:46.326-08:00

The mitochondrial testing came out "normal". Mun can post more detailed info because she is in charge of speaking with the neurologist these days. But this is good and is exactly the news I needed to get me hopeful about the trip to Chicago.

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1069293005264853762003-11-19T17:50:00.000-08:002003-11-19T17:50:29.890-08:00

Last night Danilo fell of the bed and split his lip. He had to get 3 stitches, but he is ok. His birthday will be Saturday and I'm planning a dinner outing. We are scheduled to meet the OMS doctors in Springfield, IL on January 21st.

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1067972641695412942003-11-04T11:04:00.000-08:002003-11-04T11:04:00.343-08:00

I just spoke with the assistant principal of Shenandoah St. School. She says I can sit in on the interviews for Danilo's TSA. I forget exactly what that stands for, but it is the person who will be taking care of him when he is at school. I think that soothes some of my nightmares about him going off to school and being left on the curb by the bus driver in front of the school.

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1067648404993728892003-10-31T17:00:00.000-08:002003-10-31T17:00:04.150-08:00

Yay! The DVD is done and ready to send.

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1067477955107188772003-10-29T17:39:00.000-08:002003-10-29T17:39:12.190-08:00

I spent hours trying to make that CD for the Chicago people today. The files are too big. We are trying exporting it in a different format and if that doesn't work, we'll try burning a DVD tomorrow. Man ... remind me to use simple technology next time....

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1067395349113804502003-10-28T18:42:00.000-08:002003-10-28T18:42:28.043-08:00

I think I misunderstood Dr. Niparko about one nuance. I thought "ragged red fibers" referred to the appearance of Danilo's mitochondria. However, after web surfing, I see that "ragged red fibers" refers to his muscle tissue, not to the mitochondria. Just thought I'd clarify that point.

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1066951793860963492003-10-23T16:29:00.000-07:002003-10-23T16:29:53.706-07:00

My brain, that is. I have a lot to tell, but there's too much going on at the moment and I'm feeling a little stressed, but that will pass. I'll try to write it out over the weekend. The IEP went fine. I learned about 20 new acronyms! Upcoming appointments: CCS PT/OT assessment on 10/28 Dr. Niparko on 10/30 PT on Halloweenie

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1066358377910461812003-10-16T19:27:00.000-07:002003-10-16T19:39:37.473-07:00

Liz Tate at the OMS center in Illinois said she's seen 100 cases of OMS this year. I had been somewhat impressed that she specifically asked if Danilo drooled and had speech problems which I guess is typical of OMS patients. I brought up this exchange with Niparko and she said some of the mitochondrial diseases have these symptoms also. Niparko wants me and Oge to follow up with Dr. Wilcox, the

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1066275467040472612003-10-15T20:37:00.000-07:002003-10-15T21:28:27.180-07:00

We're still waiting for the results of Danilo's in depth mitochondrial tests. The initial results were that he has "clumped" mitochondria with "ragged red fibers" which Dr. Niparko said indicated Mitochondrial Myopathy. However, after hearing the stories of other parents of kids with mito disease, Oge noticed that none of the stories sounded like Danilo. Margaret did a little research and

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1066247696156757782003-10-15T12:54:00.000-07:002003-10-15T12:54:55.526-07:00

Upcoming Appointments: 10/17 - ophthalmologist and physical therapy 10/23 - IEP meeting 10/28 - CCS assessment for PT and OT I talked to Hahnee, the PT at Childrens, yesterday. She will soon be ordering a walker for Danilo. The braces should be ready in a couple of weeks and she made sure they are the right kind. We still have about 7 weeks worth of appointments left before the original 24

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1065736343034875822003-10-09T14:52:00.000-07:002003-10-09T14:52:23.250-07:00

Today I visited the collaborative pre-school at Shenandoah St. School. There are two tiny classes of pre-school kids. Actually, the rooms are quite large, but the number of kids is very small. One class had seven and the other had eight. One room had carpeting so I'll ask for that one. None of the kids in them at this point are special needs kids. Barbara, the lady in charge of Danilo's case,

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1065661111440606412003-10-08T17:58:00.000-07:002003-10-08T17:58:30.753-07:00

I had another CCS meeting today. For the moment, Danilo has been assigned to the Los Angeles Medical Therapy Unit (LAMTU). I went there to sign the papers and talk with them about what they provide. They do provide "free" PT and OT. I may have to pay a yearly fee though, but I'm hoping they will waive that. Actually, they are short staffed at the moment and they might be able to get him in to

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1065638170109075782003-10-08T11:36:00.000-07:002003-10-08T11:36:09.850-07:00

Danilo was tested for urine catacholamines and it was normal. Here is what was not normal: TSH 0.14 (.5-5) Urine organic levels: elevated 5 HIAA seen in carcinoid syndrome or diet of bananas, pineapples, tomatos and avocados whatever that means ....

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1065559477690998882003-10-07T13:44:00.000-07:002003-10-07T13:44:37.410-07:00

The tooth extraction took place without a hitch this morning. On the way home, Danilo was still groggy from the anesthesia and he thought we were flying in an airplane. After only one instance of projectile vomiting, he felt well enough to eat some scrambled eggs. I left soon after that for the appointment with the CCS Financial Advisor at Childrens Hospital. The CCS lady was helpful. She

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1065210460848218672003-10-03T12:47:00.000-07:002003-10-03T12:47:40.296-07:00

Message: 4 Date: Thu, 02 Oct 2003 20:30:44 -0400 From: kerry.tobin@verizon.net Subject: Our Special Children (IDEA related email) This was sent to me from another online metabolic group, thought you might like to read it. ****************** VERB – IT’S WHAT THEY DO It’s a sad fact that many people believe the money spent on special education is wasted. They say that other kids -- “

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1065122958820964592003-10-02T12:29:00.000-07:002003-10-02T12:29:18.523-07:00

I have had contact with CCS. A doctor is looking over his case and I faxed them a couple of things that I got from the insurance, namely the helmet denial and the paper that says they only authorize 24 physical therapy sessions. I called the neurologist's office today. Nothing new to report. Upcoming appointments: Tomorrow - ankle brace measurements Monday - physical therapy Tuesday - tooth

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1064599399608204382003-09-26T11:03:00.000-07:002003-09-26T11:03:19.690-07:00

Danilo has an appointment to be measured for ankle braces on 10/3.

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1064535136781734452003-09-25T17:12:00.000-07:002003-09-25T17:12:16.740-07:00

IEP stands for Independent Education Program or something like that. Today Danilo had his LAUSD assessment and it went really well. He was in a great mood and very well behaved. First a psychologist and a speech therapist spent about an hour with him. He thought it was all play, but they got a lot out of him because he was very talkative. The psychologist determined that he has no cognitive

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1064424341726923392003-09-24T10:25:00.000-07:002003-09-25T16:55:41.346-07:00

"Believe it or not, a small percentage are not inherited, but occur spontaneously during fetal development, as if inheritance was not complicated enough. I remember reading a quote from one of the doctors researching this disease in an article. He said 'Mito disease is the most complicated disease known to mankind.' "

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1063916307597827642003-09-18T13:18:00.000-07:002003-09-18T13:18:27.510-07:00

According to some people sho wrote in to the mito yahoo group, anxiety/panic attacks is a common symptom among adults who suffer from mito. Hmmm ....

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1063915894619130822003-09-18T13:11:00.000-07:002003-09-18T19:02:52.903-07:00

Here are some of the websites Margaret found that deal with Opsoclonus Myoclonus/ Dancing Eye Syndrome. www.dancingeyes.org.uk/ www.geocities.com/opso-myoclonus/ www.omsusa.org/ www.hmc.org.qa/hmc/qmj/june2002/case/case3.htm www.pediatriconcall.com/fordoctor/DiseasesandCondition/approach_to_ataxia.asp

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1063914556552382462003-09-18T12:49:00.000-07:002003-09-18T12:49:15.980-07:00

Margaret will post some more information about this syndrome. I think we need to find the link - if there is a link - between OM and Mito. Yes, they did find the ragged red fibers in Danilo, but his symptoms just don't sound like anything any of the other kids have on the mito yahoo list. I called the neurologist today to see if they have any new information and they don't. Here is something I

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1063844579072483022003-09-17T17:22:00.000-07:002003-09-17T17:22:58.896-07:00

3 ophthalmologists looked at Danilo's eyes today and not one of them could see retinitis pigmentosa. He will see another ophthalmologist specializing in deviations (crossed eyes, for example) in two weeks....

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1063574126811101422003-09-14T13:49:00.000-07:002003-09-14T14:15:26.866-07:00

Went to the Ataxia Support Group meeting in Venice on Saturday. The fellow who runs the group, Sid Luther, lent me some video tapes of lectures from the last national conference on Ataxia. Will see if anything is relevant to Danilo's case. Most of the people at the support group meeting have Friederich's ataxia or one of the Spino-cerebellar Ataxias, so they weren't too familiar with

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1063316190481793982003-09-11T14:36:00.000-07:002003-09-11T14:36:30.446-07:00

Just thought I'd mention that Danilo has an appointment on Saturday with the oral surgeon to see about extracting his front tooth.

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1063227885570775582003-09-10T14:03:00.000-07:002003-09-10T14:04:45.550-07:00

The Muscular Dystrophy Association (MDA) Santa Monica office is going to mail a registration packet out to Oge. Spoke with Sandy 310-450-9032.

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1063220565129086872003-09-10T12:02:00.000-07:002003-09-10T12:11:27.740-07:00

Yay! LAUSD just called me to schedule Danilo's school assessment. That will be on 9/26 and there will be nurses and therapists in abundance to "assess" him. The school is in the Marina, by the way. I believe it is called Short Avenue if anyone knows anything about it...?

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1063219441225472732003-09-10T11:44:00.000-07:002003-09-10T11:46:20.540-07:00

I finally (!) made an appointment with the neuro-opthalmologist at Children's Hospital today. His appointment is Wednesday the 17th. Whew.... that took forever. . .

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1063132959611026682003-09-09T11:42:00.000-07:002003-09-09T11:43:33.490-07:00

As Oge already told you, I went with her to Danilo's appointment with his neurologist Dr. Niparko this morning. Some test results from the muscle biopsy came in which show Danilo has mitochondrial disease. Further tests on the muscle biopsy will show what kind of mitochondrial disease he has, but they may take months more to come in. Here are notes from what the doctor said: The knowledge

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.com