More answers :) To LYNN from HK list

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Tell me more about Jericho's symptoms. Asenath has stroke=like-episodes, TIA's, and strokes. I have been told by the doctors that the biggest difference between the three is how long issues remain. Real strokes have lasting damage, for instance, Asenath has permanent damage to her legs and left arm, paralysis in her face/mouth. These symptoms can resolve slowly over a year but whatever is there a year after the stroke happens is usually permanent. TIA's (Transient Ischemic Attacks) are very short and can be symptoms that last from minutes to several hours and rarely last for more than a couple days. They usually indicate that an upcoming stroke will occur within 3 years if treatment isn't sought. Stroke-like-episodes are the "in-between" ones. The symptoms last usually for a day to a couple of weeks and then resolve for the most part. It can be hard to know what is happening at the time but we have pretty good indicators to follow for Asenath's real strokes. She usually has a virus, then takes a nap, and then wakes with a horrible migraine that indicates a stroke and then we start to see the issues that are involved. TIA's can be quite strange because the child can appear quite bad at first and then suddenly be better. Memory problems- Asenath has this issue due to 2 strokes in her speech cognitive area. She has recall problems and other cognitive issues related to the strokes. We are just learning how much she actually deals with by asking her questions while reading books and seeing her really struggle to answer basic questions. We get speech/cognitive therapy twice a week for 1 hour each day. We will also be adding more therapy geared toward the cognitive issues soon after she is on the brain injury waiver (which starts in January!). Muscle biopsy- The actual procedure is pretty easy and is usually done on the upper thigh in a child. we had a skin biopsy at the same time which will help rule out the AH and other issues. The thing you have to worry about is the anesthesia. In Mito children it can sometimes be dangerous. For instance, Asenath can not use the gas anesthesia as it becomes very difficult for her to wake back up. Some children have breathing problems, seizures, or other problems with anesthesia so it is important to use surgeons who are aware of the Mito issues related to anesthesia. Asenath had her mic-key button (g-tube) placed at the same time and I thoroughly recommend that you do the same if you have a muscle biopsy and need to have a g-tube placed as well. Do it together so you can eliminate another operation! This group is very experienced with the biopsy and g-tube issues and the archives are filled with information on them as well. MRS- I can't remember quite what the initials stand for but know the M and the R and the same as in MRI and MRA (Magnetic Resonating) The S I am unsure about. All I know is that is can show something that may indicate Mito. If you type in MRS in your search the web area it will probably help you on it. Sorry... Pay for Medical Bills- Well, our insurance Blue Cross Blue Shield has really helped us. They pay between 80-90% of most visits and 100% of our hospital room payments. They cover most of our medications as well. We have a case manager who has been a gem through them. We do however have quite a bit of bills to still pay out of pocket. We built up over $8000 worth of bills these past two years for her out of pocket. Yes, we are a little tight financially but are managing. Starting January Asenath will be on the brain injury waiver and this will really help for future costs. Are you on any waivers? If not look into them. Quite a few people on this list have the ill and handicapped waiver. Hope this helped. Keep asking away! Darla: mommy to Asenath Re: To LYNN again from HK list > Stroke-like-episodes usually are temporary and the worst of it lastsfor a short time but can have lasting affects for longer periods. Thanks! This is helpful. This sounds different from what Jerichoexperiences.> They gave me a doctor fresh from the residency program and I didn'tseem to believe anything was wrong with me so he ignored everypositive test and treated me very rudely saying I was faking it.I can relate to that!!! Thankfully everyone is taking Jericho's stuffseriously now. But the turn-about was so fast and so extreme - from"this doesn't happen, therefore it isn't happening" all the way to"you should just accept never knowing and never having any treatment,and we don't want to do any tests because they would be a waste oftime for something so rare as this", and then to "it's probablyprogressive" and everyone seeming to leap to the g-tube andcommunication cards and stuff. Like they are giving up or something. It's been a wild ride. I think the truth lies somewhere between theextremes. He definitely has something, and maybe it's progressive(okay, probably is) - but I feel like there is a LOT they can still doin the meantime, to address the dysphagia and memory problems. I knowthey do more with adults, such as cognitive therapy for memory problems. > Carnitine deficiency and metabolic acidosis Yes they are done bysimple blood tests. I think Jericho had blood tests for those but they were normal Although I understand that sometimes things only show up with a biopsy.I have to ask - just how difficult is a muscle biopsy? I have beenhoping that Jericho will not have to have one. My husband is stronglyopposed, if the condition it will find isn't treatable. I worry onewill be needed to see if it's something treatable, or to differentiatebetween mito and MS (or whatever else).> MRA To make you feel better, I didn't know one even existed beforeAsenath had one! Lol! Thanks! :-)> There is also a MRS that is used to see some types of Mito also. Another new term! :-) What is an MRS?> Asenath had one in August with her MRI/MRA but it didn't revealanything. A brain biopsy is the best determiner of vasculitis butalso very dangerous and usually not warranted Asenath's specialistssaid so I was surprised to hear they did that with you MIL. I think they did an angiogram for her too, but decided that in orderto be *sure*, they needed to do the brain biopsy - but maybe I'mremembering that wrong.... I do remember it took her months to betaken seriously in the first place - she was first told that theextremely headaches were depression, if you can believe that. Oncethey started taking it seriously, it was another while before theydecided what was probably going on.> Alternating hemiplegia I can't remember too much about thiscondition except that it didn't explain Asenath's whole picture. Itdidn't explain her blood tests, and I was told, her failure tothrive/eating issues. You may be accurate on the swallowing issues. I am not sure.That is probably true, that it wouldn't explain the whole picture. And the vast majority of AH kids have normal mito results. I alsohaven't heard of failure to thrive being a problem, or g-tubes, withAH kids.> I hope you are able to find good treatment in Utah. I knowthat the doctors here in Iowa just didn't understand Asenath's issuesand totally did not consider Mito as a possibility or vasculitis. That is how Jericho's current ped neuro is - very frustrating. But Ifound a couple of other neuro's and we will see what they say abouthis case. Utah has a medical center that draws people from a large surroundingarea - but if you look, the area around Utah is sparsely populated. Even so though, the children's hospital has been ranked among the top10 in the country. The MS neuro Jericho saw is on an advisory board(or something like that) for the National MS Society, and the head ofthe MS clinic here. And the new ped neuro he will see in January is aworld authority on alternating hemiplegia and is also very involved (Ithink) in mito and other disorders. It will be very discouraging ifwe don't get any answers or directions to go in, from these two doctors.> We tried several doctors before finding our Mayo doctors and boy arethey worth traveling to see. We are only 3 hours away from themthough so it isn't that bad of a drive. Best of luck finding gooddoctors and finding the answers you seek. :)My husband, and my son's SLP, are both convinced we will eventuallyhave to travel out of state to get a diagnosis. I'm really hopingthat we don't have to. It will require flying, and staying somewhere,and trying to figure out how to pay the medical costs, since it willbe out-of-network.Speaking of which - how did you pay the medical costs for Asenath togo to the Mayo Clinic? I know we could get help with flying andaccomodations, but the medical costs are a big concern.I also worry that we will fly out and end up getting the same sort ofquick once-over we get here at times, and not learn anything. On theother hand, I worry about taking a 4yo 1,000-2,000 miles just to bepoked many times and to wait in boring waiting rooms.LynnePlease contact mito-owner with any problems or questions.

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Darla,

MRS is Magnetic Resonance Spectroscopy. This test is an MRI using different computer software whereby the chemicals are measured in the brain. Lucas had one done several years ago and it showed lactic acid in his brain that correlated with the areas of delayed myelination. The myelin being the coating on the nerves in the brain. This in turn causes his cortical visual impairment (CVI). This was described to me as like plugging in a tv set with uncoated wires. Sometimes the signals get through and sometimes they don't. CVI is described as visually being able to see but not always processing what they can see.

Darla, I also enjoyed your pictures what a great looking family.

Loriann (mother of 3: Lucas 7yrs suspected mito and and 11yr old twins)

[Guest guest]

Darla,

MRS is Magnetic Resonance Spectroscopy. This test is an MRI using different computer software whereby the chemicals are measured in the brain. Lucas had one done several years ago and it showed lactic acid in his brain that correlated with the areas of delayed myelination. The myelin being the coating on the nerves in the brain. This in turn causes his cortical visual impairment (CVI). This was described to me as like plugging in a tv set with uncoated wires. Sometimes the signals get through and sometimes they don't. CVI is described as visually being able to see but not always processing what they can see.

Darla, I also enjoyed your pictures what a great looking family.

Loriann (mother of 3: Lucas 7yrs suspected mito and and 11yr old twins)

[Guest guest]

The face wiping issue plus the other symptoms sound like stroke activity to me. Asenath did this quite a bit also after her strokes because her face would feel different. Sometimes tingling, numbness, or new facial sensations waking back up after a stroke cause a child to rub at the spot(s). The varying ways your child's symptoms appeared are also similar to Asenath. Sometimes things appear suddenly and other times it progresses over a period of time. Some things may get better quickly at the same time as other issues linger on. Sounds just like Asenath. Amazingly Asenath has the same in-turned feet issues. Her big stroke in April of 2002 affected her left leg with weakness but not turning in issues but then a month later three episodes affected Asenath's right leg. At first it was just the turning in of her foot and then as the month progressed she got worse and affected up to her knee with weakness and swinging the hip and rotating her knee, etc. She went from a small foot/ankle brace at the beginning of the month to a brace up to the knee at the end of the month. Recently Asenath began turning her left foot inward for the first time. We believe her biggest issue affecting this is actually weakness in her hips and upper thighs. We have had the weird fluxuating issues as well. We never know from day to day what Asenath will be like. One day she limps/turns in foot/feet bad and the next better and then bad again...Her therapists and doctors have had a challenge figuring her out. Boy are our kids alike or what? Asenath had the same dramatic turn around with fatigue that you mentioned! The spring and summer was very hard on Asenath She couldn't do 15-30 minutes away from home with total exhaustion and then sleeping for 4-5 hours when we returned home. Therapy was more like sit and move slightly. She grunted when she moved it seemed to be so draining. Then it just disappeared and she has tons of energy again. I have had the same issues many times myself. Part of the Mito craziness. Speech-Same again, the more tired she is the worse her speech. Involuntary movements here too. Asenath had myoclonic jerks (seizure or not-unknown) until her Topamax was upped to 150 mg. per day last winter. Especially bad as going to sleep, shortly after sleep began, and after waking up. Asenath had dystonia in her legs for 3 weeks and then left never to return again. The doctors were sure she had it as her legs cramped so badly we had to stop the car multiple times to rub her legs and loosen the muscles and relieve the pain. The loss of bladder control with other symptoms-Do you think seizures possibly? Others on the list deal with this. Recall (word retrieval) is Asenath's big problem now since the two July strokes). Definitely look into the Factor V leiden with all these symptoms and the family history! Strokes only show up on MRI's if large enough. Many strokes do not show up. Asenath's brain only shows her biggest one where it paralyzed half her body. This is what my neurologist at Mayo told me. Brain Injury Waiver-Not sure why your state does that. Only know we are getting it. Maybe they don't know enough about Mito here or are going only on the vasculitis issue. Sorry about not getting a waiver. That would really help you. Same with the therapy issue. It would be nice for you to get better services for you son. After this e-mail, I am amazed how similar Asenath and you son are. I would encourage you to definitely pursue issues further. It sounds like your son is definitely having stroke episodes/strokes/TIA's. I recommend a MRA and further testing for the conditions we have spoken about. You need to find out what is causing his issues! If you want to talk personally on the phone some time I would be open. Write to my personal e-mail address and give me your phone number and I will call you. ddk61387@... or honeybear50317@... Darla: mommy to Asenath Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com