Darla

[Guest guest]

Hi Darla,

Thanks for your post. Hope you family is doing well.

Dr. Whiteman said that JD's mito had progressed from feb to May and it seems

to me that it has progressed since May. Hopefully, can find out if there is

something else to do this month.

Take Care,

Darlene

[Guest guest]

Hi there;

Thanks for asking. The night wasn't good although his sats did improve. The urine retention was out of control though and he was in major pain. The catheter supplies arrived an hour ago and the visiting nurse is on her way to catheterize. I have yet to do it by myself so we need training.

Meanwhile, our heroic mito doc Dr. Feigenbaum is pursuing the cough assist machine that's sitting on a shelf at Sick Kids hosp. She's consulted pulmonology and is awaiting lab results from Kirk's recent hospital admission. Who knows? I'll keep you posted unless we end up in hosp. If you don't hear from me fairly consistently, you'll know either we're acute at home or en route to Toronto.

Hope the girls are still holding their own.

Take care of yourself too,

hugs from Darla Klein wrote:

How did the night go? Is he doing any better?See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.orgDarla: mommy toAsenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency...Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: Cyndi> I so appreciate your concern. I'm hangin' in.> Take care,> >> c k wrote:> > I am so sorry to hear about little Kirkland's condition. Unfortunately, > my family is in a similar situation with little Ari. MRI shows more > atrophy of his brain since August, and it's just a matter of keeping him > comfortable and hopefully, out of the hospital.>> You are so right to be concerned about your other sons. My brother and > his wife had a baby that died 11 years ago. That baby's big brother, > although only 4 at the time, remembers his baby brother, the numerous > trips to babysitters when Mom & Dad had to rush back to the hospital, and > even now, can't stand to see his baby nephew in the shape he's in

today. > No kid should have to learn about this stuff, but the way adults handle > the situation can make all the difference in the world. You are doing a > fabulous job. I wish things were better for you, and your family.> Peace & love,> Cyndy, aunt to Ari - unknown Mito & sinking fast>>>> Kilbride wrote:> Hi everyone;> I just finished one terrible evening. Darla we're keeping up with you > neck & neck. I typed out an update on Kirk's caringbridge page and have > copied it for you all. I'll check in tomorrow.> Take care,> mom to Kirkland 3.5 yrs, Complex One Def>>> Journal>> Thursday, December 9, 2004 10:23 PM CST>> Hi all,> Okay, I'll try this again and hope I don't lose the entry again.> Tonight's been a rough night for us and I'm

just sitting down for the > first time since around 4 pm. Jody and I started suspecting that something > might be brewing with Kirk this a.m. He's been experiencing urine > retention more often and he was also sneezing today and that's not a good > sign.> He's still on one of the antibiotics that he's been on since coming home > from the hospital last week but he finished the other one yesterday. We > called his paediatrician to see if she considered it time to put him on > prophalactic(sp?)antibiotics (a low dose of antibiotics on a continuous > basis from now on). I've been really scared about what would happen when > he finished his current antibiotic. She agreed and ordered Bactrim today.>> Apparently we didn't act soon enough. Things started to worsen with Kirk > this afternoon with Jody. His breathing problems worsened and it was > increasingly difficult for her to bring his O2

saturation rates up to > acceptable levels. She was pretty shaken when I arrived home from my > errands.> After she left, the same difficulties arose with me. Usually I can > stabalize his breathing but it wasn't happening tonight. His sat rate at > one point dropped to 68%.>> Fortunately, his other nurse came on duty for a night shift at > ~7P.M. and picked up his antibiotic renewal for us because Gerry had an > exam at night school. By the time got here I was quite frazzled. Of > course the boys were still up after having made their own supper of peanut > butter sandwiches and I was drilling them both for their spelling > dictation as I worked on Kirk's chest and asked them to co-operate as best > as they could so I could try to keep Kirk home and not call an ambulance.>> I started re-packing mine and Kirk's hospital bags but wasn't convinced > that we would

be going. I just couldn't see us going through the exact > thing we went through two weeks ago. Was it going to get us anywhere?> The only hospital I thought we should be considering was Sick Kids and > that's only if we wanted him to be on a bi-pap machine to help him > breathe. The problem is: no ambulance will transport us to Sick Kids or > Trillium when Kirk's in distress like this. I knew we'd have to throw him > in the van and take him ourselves yet his breathing was too unstable.>> By this time Kirk had a fever of 39 degrees C. so some virus or infection > had definitely set in. suggested we call in Dr. Zeni (our palliative > community doc.) and he came right over thank goodness.>> It was another very difficult decision to make, but we've decided to fight > this one out at home with his help. We'll just have to let Kirk try to > fight it off and hope he wins the battle for

now. It's really hard turning > the alarm down on his pulse-oximeter and allowing his spO2 levels to drop > below 89% but again, we're faced with the dilemna of whether to intervene > and go down that familiar hospital route.>> It's awful to be in this predicament but I have to consider Evan and > Carson too. I really don't know how much longer they can tolerate all of > this stress before they really start acting out and develop behavioral or > emotional problems.>> As it is, last Friday I was forced to have the 'dreaded' conversation > about Kirkland's future with them. Evan was listening in on the other > phone line and heard me mention something upsetting about Kirk's health > status. I had to immediately talk to the two of them about what is likely > going to happen to their little brother. This week, no doubt has been very > traumatic for them. I don't know what another

hospital stay right now > would do to them and as Dr. Zeni says, we wouldn't be doing much more at > town Hospital than we are here at home.>> I pray that the boys continue to cope and communicate about their thoughts > and feelings. Evan's been openly sharing tidbits about Kirkland during > health class at school and has been discussing his feelings in group share > sessions with his class so this is a relief for his teacher and I. We've > had a lot of talks about WHY??????? and I try to give them simplified yet > honest answers.>> Carson is dealing with it too but through the innocent eyes of a seven > year old.> We've talked a lot about souls and with that- the possibility of > reincarnation. He's decided that after he's been in heaven for a while and > has had a rest, he wants to come back to earth or another universe as a > dinosaur. What a case! Heavy stuff to

be dealing with but he's got the > main jist.>> Anyway, I'm going to try to rest for a bit. To our medical friends and > professionals who are checking in, here's the latest report on Kirk at > 24:15 Fri. Dec. 10, 04>> SPO2=94% on 3 litres nasal prongs/ 5 litres mask> heart rate=164 [at it's highest it was 180 (Evening)]> resp.= 40> temp.=38.5 deg. C.> He's had increased seizures, given diastat ~22:30> He's receiving tylenol q4hrs / advil q6hrs / -hasn't brought his fever > down yet.> He's still on clindamycin q6hrs / Bactrim's been adjusted by Dr. Zeni from > 7.5 ml od to 7.5 ml BID Both via G-J tube> In & Out catheterizations ordered by Dr. Morra today PRN> Gave 4 ml glycopyrollate at ~10 p.m. per Dr. Zeni (PRN)> He's trying hard to sleep.> I'll post again tomorrow with any new updates.>> until then,> luv

>> Now I lay me down to sleep> I pray the Lord my soul to keep,> If I should die before I wake,> I pray the lord my soul to take.>> God bless...all of you!> Good night.>>>>>>>>> ---------------------------------> Do you Yahoo!?> Dress up your holiday email, Hollywood style. Learn more.>> Please contact mito-owner with any problems or questions.>>>>> ---------------------------------> Do you Yahoo!?> All your favorites on one personal page - Try My Yahoo!>> Please contact mito-owner with any problems or questions.>>>

[Guest guest]

Thanks for the 'catheterization pep talk'. For the weekend anyway, they have Kirk hooked up to a bag so I don't have to do the in-outs. I haven't been trained yet. The concern is that he'll develop more UTI's though with it in there for such a long time. He's on the anti-biotics though so hopefully he'll fight infection off if it attacks.

Glad to hear the girls are still at home doing okay. Keep at it!

Darla Klein wrote:

I know cathing is pretty intimidating and you just don't want to cause the initial pain that it causes, but it actually isn't too hard once you have learned. Of course, I had to do it on a girl not a boy, but once I learned how, it wasn't that difficult. The hardest thing with a girl is to find the appropriate place. With Asenath her urethra was lower than expected, so they were constantly trying to go higher and of course we could not accomplish it as it was lower. I was fortunate to only have to do it for a couple of days as we, along with the other professionals were only able to get about 75 cc. retention released. I often wonder if she should still be cathed at times because she is once again flooding her bed once asleep because her bladder relaxes and then releases tons. I worry it is an area

they may come back to haunt us, but the urologist at Mayo didn't think it necessary to do it further and doesn't want to see her for another year at least. Go figure! We are doing ok over here and Asenath and Porrah are handling the virus well with added pedialite through their tubes.See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.orgDarla: mommy toAsenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency...Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8),

Kezia (3), & Marquis (2) (some with Mito symptoms) Re: Cyndi>>> > I so appreciate your concern. I'm hangin' in.> > Take care,> > > >> > c k wrote:> > > > I am so sorry to hear about little Kirkland's condition. Unfortunately,> > my family is in a similar situation with little Ari. MRI shows more> > atrophy of his brain since August, and it's just a matter of keeping him> > comfortable and hopefully, out of the hospital.> >> > You are so right to be concerned about your other

sons. My brother and> > his wife had a baby that died 11 years ago. That baby's big brother,> > although only 4 at the time, remembers his baby brother, the numerous> > trips to babysitters when Mom & Dad had to rush back to the hospital, > > and> > even now, can't stand to see his baby nephew in the shape he's in today.> > No kid should have to learn about this stuff, but the way adults handle> > the situation can make all the difference in the world. You are doing a> > fabulous job. I wish things were better for you, and your family.> > Peace & love,> > Cyndy, aunt to Ari - unknown Mito & sinking fast> >> >> >> > Kilbride wrote:> > Hi everyone;> > I just finished one terrible evening. Darla we're keeping up with you> > neck & neck. I

typed out an update on Kirk's caringbridge page and have> > copied it for you all. I'll check in tomorrow.> > Take care,> > mom to Kirkland 3.5 yrs, Complex One Def> >> >> > Journal> >> > Thursday, December 9, 2004 10:23 PM CST> >> > Hi all,> > Okay, I'll try this again and hope I don't lose the entry again.> > Tonight's been a rough night for us and I'm just sitting down for the> > first time since around 4 pm. Jody and I started suspecting that > > something> > might be brewing with Kirk this a.m. He's been experiencing urine> > retention more often and he was also sneezing today and that's not a > > good> > sign.> > He's still on one of the antibiotics that he's been on since coming home> > from the hospital last week but he finished the other one yesterday. We>

> called his paediatrician to see if she considered it time to put him on> > prophalactic(sp?)antibiotics (a low dose of antibiotics on a continuous> > basis from now on). I've been really scared about what would happen when> > he finished his current antibiotic. She agreed and ordered Bactrim > > today.> >> > Apparently we didn't act soon enough. Things started to worsen with Kirk> > this afternoon with Jody. His breathing problems worsened and it was> > increasingly difficult for her to bring his O2 saturation rates up to> > acceptable levels. She was pretty shaken when I arrived home from my> > errands.> > After she left, the same difficulties arose with me. Usually I can> > stabalize his breathing but it wasn't happening tonight. His sat rate at> > one point dropped to 68%.> >> > Fortunately, his other nurse came on duty

for a night shift at> > ~7P.M. and picked up his antibiotic renewal for us because Gerry had an> > exam at night school. By the time got here I was quite frazzled. > > Of> > course the boys were still up after having made their own supper of > > peanut> > butter sandwiches and I was drilling them both for their spelling> > dictation as I worked on Kirk's chest and asked them to co-operate as > > best> > as they could so I could try to keep Kirk home and not call an > > ambulance.> >> > I started re-packing mine and Kirk's hospital bags but wasn't convinced> > that we would be going. I just couldn't see us going through the exact> > thing we went through two weeks ago. Was it going to get us anywhere?> > The only hospital I thought we should be considering was Sick Kids and> > that's only if we wanted him to be on a

bi-pap machine to help him> > breathe. The problem is: no ambulance will transport us to Sick Kids or> > Trillium when Kirk's in distress like this. I knew we'd have to throw > > him> > in the van and take him ourselves yet his breathing was too unstable.> >> > By this time Kirk had a fever of 39 degrees C. so some virus or > > infection> > had definitely set in. suggested we call in Dr. Zeni (our > > palliative> > community doc.) and he came right over thank goodness.> >> > It was another very difficult decision to make, but we've decided to > > fight> > this one out at home with his help. We'll just have to let Kirk try to> > fight it off and hope he wins the battle for now. It's really hard > > turning> > the alarm down on his pulse-oximeter and allowing his spO2 levels to > > drop> >

below 89% but again, we're faced with the dilemna of whether to > > intervene> > and go down that familiar hospital route.> >> > It's awful to be in this predicament but I have to consider Evan and> > Carson too. I really don't know how much longer they can tolerate all of> > this stress before they really start acting out and develop behavioral > > or> > emotional problems.> >> > As it is, last Friday I was forced to have the 'dreaded' conversation> > about Kirkland's future with them. Evan was listening in on the other> > phone line and heard me mention something upsetting about Kirk's health> > status. I had to immediately talk to the two of them about what is > > likely> > going to happen to their little brother. This week, no doubt has been > > very> > traumatic for them. I don't know what another hospital stay

right now> > would do to them and as Dr. Zeni says, we wouldn't be doing much more at> > town Hospital than we are here at home.> >> > I pray that the boys continue to cope and communicate about their > > thoughts> > and feelings. Evan's been openly sharing tidbits about Kirkland during> > health class at school and has been discussing his feelings in group > > share> > sessions with his class so this is a relief for his teacher and I. We've> > had a lot of talks about WHY??????? and I try to give them simplified > > yet> > honest answers.> >> > Carson is dealing with it too but through the innocent eyes of a seven> > year old.> > We've talked a lot about souls and with that- the possibility of> > reincarnation. He's decided that after he's been in heaven for a while > > and> > has had a

rest, he wants to come back to earth or another universe as a> > dinosaur. What a case! Heavy stuff to be dealing with but he's got the> > main jist.> >> > Anyway, I'm going to try to rest for a bit. To our medical friends and> > professionals who are checking in, here's the latest report on Kirk at> > 24:15 Fri. Dec. 10, 04> >> > SPO2=94% on 3 litres nasal prongs/ 5 litres mask> > heart rate=164 [at it's highest it was 180 (Evening)]> > resp.= 40> > temp.=38.5 deg. C.> > He's had increased seizures, given diastat ~22:30> > He's receiving tylenol q4hrs / advil q6hrs / -hasn't brought his fever> > down yet.> > He's still on clindamycin q6hrs / Bactrim's been adjusted by Dr. Zeni > > from> > 7.5 ml od to 7.5 ml BID Both via G-J tube> > In & Out catheterizations ordered by Dr. Morra today PRN> >

Gave 4 ml glycopyrollate at ~10 p.m. per Dr. Zeni (PRN)> > He's trying hard to sleep.> > I'll post again tomorrow with any new updates.> >> > until then,> > luv > >> > Now I lay me down to sleep> > I pray the Lord my soul to keep,> > If I should die before I wake,> > I pray the lord my soul to take.> >> > God bless...all of you!> > Good night.> >> >> >> >> >> >> >> >> > ---------------------------------> > Do you Yahoo!?> > Dress up your holiday email, Hollywood style. Learn more.> >> > Please contact mito-owner with any problems or > > questions.> >> >> >> >> > ---------------------------------> > Do you Yahoo!?> > All your

favorites on one personal page - Try My Yahoo!> >> > Please contact mito-owner with any problems or > > questions.> >> >> >

[Guest guest]

That's my goal. I'm happy to see you thimk so too.

Darla Klein wrote:

Thanks for the update again. Try to get some rest when you can as I am sure you are pretty tired. I am glad your children have been able to be a part of the decision making. It makes them really feel included and also probably makes them feel like they can help in "some" way. Often one of the most frustrating things about this disease (and others) is the feeling of helplessness or not being able to do anything to help the person. Maybe them talking through the decisions will help them feel they ARE helping.See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.orgDarla: mommy toAsenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic

vomiting...Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency...Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Kirkland update - bi-pap??>> Hi Friends;>> Here's the latest on Kirkland. I thought I'd just copy his caringbridge > journal and share it with you here too.>> Notice the possibility of Bi-pap for Kirk. Does anyone have any words of > wisdom for us?>> Have a great week-end. Thanks for all the messages and

words of > encouragement. It's been very comforting for me to turn to you all at > this difficult time.>> luv mom to Kirkland Complex One Def.>> Friday, December 10, 2004 7:13 PM CST>> Hi again;> Well, we've made it through a very busy day and I'm holding my breath as > we enter nightime. This is when most of our trauma seems to happen so keep > your fingers crossed XX.>> Last night after signing off, Kirk's breathing was stabalizing but urine > retention became a big issue around 3am. He was also coughing non-stop > (dry/hacking). It seemed like the small grunts of pain that he was > experiencing were causing him to cough incessantly and he couldn't seem to > stop. Despite a good half hour of abdominal massage, Kirk still couldn't > void. We gave him an enema hoping that it might prompt him to void if he > had a BM. Well, he had the BM but

no void, however, it reduced some of the > pressure in his belly and he stopped coughing so he was able to sleep a > bit.>> I slept 4 hrs and awoke for Jody's shift at 8am. Today was full of phone > calls and they've only slowed down now. We arranged for a catheter bag to > be put on at least for the weekend to relief his retention. A visiting > nurse came to help there.>> I also had to arrange for more emergency O2 from Medigas because Kirk had > still been de-satting on 8 litres O2 last night and we had none left in > this amt. today if need be. This required new doctors orders (poor Dr. > Morra and - orders, prescription writing, and faxing has kept them > very busy these past 2 days and Dr. Morra's been unwell to boot!)> Boy, glad you're on our team!>> We now have 2 huge cylinders of liquid O2 in our front hallway for > emergency purposes if Kirkland

requires large amts at a time. I'm told > that a new O2 concentrator could be coming as early as Monday which will > give us the option of a max. of 10 litres. So these 2 big ones are only > temporary to hold us til then.>> Today, Kirk's been very quiet and his sats have been high, thankfully. > He's slept most of the day because he was up most of the night. He only > woke ~ 4pm for a couple of hours. He's still had a hard time controlling > the coughs but life's a bit more bearable than it was last night for him.>> He's on round-the-clock pain medication but continues to whinge (sp?) > while he's awake. I hope his night is more peaceful.>> Dr. Feigenbaum, our heroic Sick Kids Mito doc has been regularly keeping > in touch. Although from a Metabolics standpoint, they claim there's not a > lot more they can do for Kirk, boy does she make up for it in advocating > for

Kirkland!>> She's been calling and e-mailing around today to hook up with our other > docs and also with the pulmonologists at Sick Kids to see if there's > anything they can do down there for Kirk.> She called late this afternoon to say that we have the choice to have the > pulmonology team assess Kirkland's need for a home bi-pap machine. This is > a breathing assistive device that is much less invasive than a respirator. > Most people are on it when they sleep. Some require use when awake too. > Kirk was on one in 2003 in ICU after one of his lungs collapsed in > respiratory distress. He only needed it for 12 hrs to reinflate his lung.>> If we decide to go this route, she's requested a bed for Monday morning > and will let us know at that time if one's available. We'd need to spend > about a week having the pulmonary team assess, direct, and I guess train > me. It would

apparently take about that same length of time to get a > bi-pap ordered and in place for home use. We're supposed to think on it > this week-end.>> We had a family meeting tonight to discuss this new option. We want to > involve the boys in everything now so they feel a part of all the > decision-making and know we're not keeping anything from them. I explained > that I'd have to be in hospital all next week and we wouldn't see each > other til the week-end (and possibly even longer, but that would be the > chance we take because often our stays are longer than anticipated).>> We did tell them that Dr. F. says that some of the mito kids who can talk > say it makes them feel better. They know that it might help Kirk's > breathing but we don't know how much so then we asked them what they > thought we should do.>> Out of the mouths of babes, Carson pipes up and

asks,> "Well... what else can we do?" As if, "What a stupid question of course we > do it!" What a case he is! Gerry and I just cracked up. I did go on to > explain that many families don't want to put their loved ones through any > more medical procedures or trials and decide to let them rest until their > heart's too tired to pump anymore.> This satisfied them. Evan was simply relieved to remember that, "Thank > goodness there's no Spelling next week!">> Man, sometimes we don't give them enough credit for being able to handle > things, yet they really are coping well enough. They are pretty special > brothers. They haven't been able to stomach though, the catheter coming > out of Kirk's 'you-know-what' and say they'll feel better for him when > it's out. What brotherly compassion eh?!>> Anyway, those are today's developments. We'll see what happens over the > weekend.

Things here can change so dramatically from one minute to the > next so we won't make any decisions just yet...>> For our medical fans just checking in for report...22:30> Kirk's SPO2 rate is 97% on 3 litres & mask.> Heart rate is 125 Asleep.> resp=36 (some indrawing)> urine is clear and faint yellow> abdomen slightly distended but we're keeping an eye on it> temp 36.9 at last check>> Surprisingly, I'm feeling quite peaceful right now. The house is in order, > the laundry's under control & dishes are done, the boys are sleeping, and > I'm not as exhausted as I could be. I think I might even be able to > scrounge up a little bit of Christmas spirit if I put my mind to it.>> Hope all is well with everyone out there.> Don't let the hustle and bustle get you down!> Thanks for all the warm fuzzies lately.>> luv >

xo>>>>>>>>>>> ---------------------------------> Do you Yahoo!?> Meet the all-new My Yahoo! - Try it today! Please contact mito-owner with any problems or questions. __________________________________________________

[Guest guest]

Hey Darla-

We went through Jolly Holiday Lights on Christmas Eve and saw Asenath's

story in the brochure. I didn't see it in the paper though. It was an

awesome display of lights and the kids really enjoyed it. (My husband and I

did too.)

As far as the wishes, I think we will do a playroom in the basement for now.

We'll hold off on the second one and maybe use it towards a trip when the

girls get a little older. It would be pure chaos if we tried to take a trip

right now! is going through a phase where she doesn't want anyone to

look at her, let alone touch or try and talk to her. All she wants is

mommy, mommy, mommy. It's breaking my husband's heart, and mine too!

I hope your holiday was enjoyable and uneventful! Take care.

Kim

wishes granted

>>

>>

>> Hello all. I hope you had a very happy holiday. We received a late

>> Christmas present today when Make-A-Wish called to let us know and

>> Lindsey have been granted wishes. We are very excited for them!

>>

>> Blessings,

>> Kim - Mom to and Lindsey (3) Partial Complex I

>>

>> Please contact mito-owner with any problems or questions.

>>

[Guest guest]

I just wanted to let you know that I did not forget about you. I had told you a few weeks back that I would give your email address to a mother with a child who has hydrocephalus. I'm sorry but she has not been to our playgroup for awhile now. The teachers have tried to contact her but have been unable. We are just hoping now, that everything is O.K.

Sorry.

Find just what you're after with the new, more precise MSN Search - try it now!

[Guest guest]

That's ok. I have been pretty busy lately anyway switching therapy

times around, scheduling new therapies, visiting docs for Joey and etc. We

are starting to get settled but have lots to still deal with. Thanks for

letting me know about your friend. I hope all is well with her as well.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

Darla

> I just wanted to let you know that I did not forget about you. I had told

> you a few weeks back that I would give your email address to a mother with

> a child who has hydrocephalus. I'm sorry but she has not been to our

> playgroup for awhile now. The teachers have tried to contact her but have

> been unable. We are just hoping now, that everything is O.K.

>

> Sorry.

>

>

>

>

--------------------------------------------------------------------------------

> Find just what you're after with the new, more precise MSN Search - try it

> now!

>

> Please contact mito-owner with any problems or questions.

>

>

>

[Guest guest]

We see the same jerking during sleep in both girls, interestingly in their cases it is mostly on their right sides rather than on both sides. Zipporrah's was assumed to be restless leg syndrome and yet we have been told by other physicians that restless leg syndrome occurs in both legs NOT in one side only. Asenath's was never really diagnosed but some felt it was just the normal jerking many have just after drifting to sleep. The amazing thing we did see though was the disappearance of the jerking with an increase in her seizure med Topamax.

Darla,

I am jumping in a bit late, sorry, but this post caught my eye. Chelsea was dx'd with epilepsy via EEG at 2 1/2. For some time before that, we also had been noticing her limbs jerking in her sleep, more her left side, but occasionally all 4 would get going. This seemed to happen most with late evening naps. She did sleep during that EEG and the jerking did occur and was noted by the tech. Her neuro later told that was indeed seizure activity that was occuring mainly on the right side, causing the left sided jerking. These also disappeared with the introduction of phenobarb, and fortunately have not returned with all of her med changes, even though she does have more areas of spiking in her brain. HTH

Oh and thanks for the birthday & get well wishes! Chelsea is resting peacefully on the couch and smiles everytime she opens her eyes and sees her doll=)

e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)

[Guest guest]

Hi, I remember reading that Aseneth is on an apnea monitor, I might have

read wrong, or

just remembering wrong, just out of curiosity what type of monitor? I know

shes

older than Leighann, but Leighann is on the infant one and we need

something better. The

companies here say the infant one is the only one, but I've already heard

about the CAS

also. I need some info for her ped other than what our locals are telling

them. They'll

do everything in their power to get her what she needs, its just a blind

search for them,

and on some things I have better resourses for info than them. She is

almost 2 1/2,

shes about24-25 lbs, tiny girl, but very sensitive skin, so we have to

watch some adhesives and

tapes, some are okay, some are not.

Thank you, I would appreciate any info.

Lois

> [Original Message]

>

> To: <Mito >

> Date: 4/22/2005 2:16:04 AM

> Subject: RE: Reflux and Apnea Monitors

>

>

> Thank you, this is the info I needed. I knew they had to have something

> other than for infants. The companies

> here are saying the infant are the only ones. This gives me the info our

> ped needs.

>

> Lois

>

>

> > [Original Message]

> >

> > To: <Mito >

> > Date: 4/20/2005 3:12:51 PM

> > Subject: Reflux and Apnea Monitors

> >

> >

> >

> >

> > is correct. Most apnea monitors are only FDA approved for

> > childern under the age of 2 years. Over the age of 2, the only

> > systems approved for home use are the EdenTec and CAS. The original

> > EdenTec (a reaaly superb monitor) was obsoleced by CAS after they

> > acquired the company. The CAS unit is " ok " , not great, but not bad

> > either. I recently heard that CAS is obsolescing this system as well

> > and will soon be promoting something new.

> >

> > ALso, it is important that if you have the prove or verify that apnea

> > is occuring, the home monitor should have a memory module which can be

> > downloaded. If it doesn't any alarms are subject to question. A good

> > quality download can prove if GERD is or is not causing apnea.

> >

> > is also correct in stating that a competent GI doc would be the

> > better physician when it comes to treatign reflux. Soem

> > pulmonologists will offer treatment but they are not a in position to

> > determine if the reflux id causign other GI related problems.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > Please contact mito-owner with any problems or

questions.

> >