Re: Overwelmed with many questions

[Guest guest]

Dear Heidi: I am so sorry about Adeline’s

problems. Our Ben has been having

similar problems, but only occasionally.

And, he’s only on one seizure medication, Lamictal. Sometimes he gets a little fever and

then he’ll have a seizure and his temp will be at 105! And after the seizure is over, no

illness and the fever goes away!

We think that is autonomic activity when that happens. We’ve had several situations where the

grand mals don’t stop on their own.

Sometimes Diastat has worked and sometimes it hasn’t. Then when you have these types of seizures,

you are always waiting for them to happen. This is so hard on you and your family and especially with

the baby on the way! Oh,

Goodness. I don’t really have

advice, just wanted to offer support.

Cindy (mom

to Seth and Ben, both mito)

-----Original

Message-----

From: Dan and Heidi Payton

Sent: Friday, March 25, 2005 8:49

AM

To: Mito

Subject: Overwelmed with

many questions

·

Adeline is still having problems, I thought they had stopped, but they

haven't. She is having 1 or 2 grand mal seizures every week to 2 weeks. Her

Neurologist is upping her drugs, but still with this on going for 5 weeks, it

is still not helping her. She is on Phenobarb, Lamictal, Zonegram and Clozapam

2-3 times a day. Every time she has a Grand Mal we have to go to the ER (doctor

recommended), but Diastat doesn't even really work. She doesn't stop until she

is given IV drugs.

She also has Autonomic Nuropathy, her temperature is always fluctuating, but

the last 5 weeks it has been 100.3 or higher every day. Tylenol or Motrin isn't

even bring it down. She has had several labs ran, but they say there is no

reason for the temperature to be that high everyday. Her temperature is always

changing but it has never stayed that high for days at a time. She is more

lathargic, and isn't her normal happy self, but still isn't acting sickly

either.

Does anyone have any suggestions, I am so worried about her. I am also 6 months

pregnant and the stress from her Mito lately is putting my health and our new

baby at risk. Please any suggestions would be greatly appreciated.

Heidi Payton

mommy to (5), Adeline (3),

Mitochondrial Myopathy (non-specific), Autonomic Neuropathy, Epilepsy (Grand

Mal and Myoclonic), Asthma, Allergies, Speech and Developmentally delayed, Logan (2) and number 4 due June 17th

[Guest guest]

I am sorry to hear of the seizure issues. I don't have any suggestions,

sorry, but wanted to let you know we are thinking about you and wish things

would start improving soon for you. I am sure it has been very wearing

having to go to the ER constantly and on top of it all to be pregnant. I am

sure it is hard not worrying about Adeline and must make it hard to get good

rest to take care of yourself and the baby. Prayers being sent your way...

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

a photo look into what Mito looks like

Darla: mommy to

Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

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

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

gastric emptying issues...

Zipporrah (17 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, disautonomia,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency...

Luke (16)migraines, sensory issues, & some evidence of SLE's...

Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4),

Marquis (3) prenatal drug & alcohol exposure with likely FAS, behavioral

issues, SID...

Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum,

encephalomalacia & leukomalacia, possible arachnoid cyst,

G-tube fed, immobile, GERD, left hemiplegia (arm)...

(15 months) SID, dev. delays, some right sided hemiparesis...

Overwelmed with many questions

> Adeline is still having problems, I thought they had stopped, but they

> haven't. She is having 1 or 2 grand mal seizures every week to 2 weeks.

> Her

> Neurologist is upping her drugs, but still with this on going for 5 weeks,

> it is still not helping her. She is on Phenobarb, Lamictal, Zonegram and

> Clozapam 2-3 times a day. Every time she has a Grand Mal we have to go to

> the ER (doctor recommended), but Diastat doesn't even really work. She

> doesn't stop until she is given IV drugs.

>

> She also has Autonomic Nuropathy, her temperature is always fluctuating,

> but

> the last 5 weeks it has been 100.3 or higher every day. Tylenol or Motrin

> isn't even bring it down. She has had several labs ran, but they say there

> is no reason for the temperature to be that high everyday. Her temperature

> is always changing but it has never stayed that high for days at a time.

> She

> is more lathargic, and isn't her normal happy self, but still isn't acting

> sickly either.

>

> Does anyone have any suggestions, I am so worried about her. I am also 6

> months pregnant and the stress from her Mito lately is putting my health

> and

> our new baby at risk. Please any suggestions would be greatly appreciated.

>

> Heidi Payton

> mommy to (5), Adeline (3), Mitochondrial Myopathy (non-specific),

> Autonomic Neuropathy, Epilepsy (Grand Mal and Myoclonic), Asthma,

> Allergies,

> Speech and Developmentally delayed, Logan (2) and number 4 due June 17th

>

>

[Guest guest]

She also has Autonomic Nuropathy, her temperature is always fluctuating, but the last 5 weeks it has been 100.3 or higher every day. Tylenol or Motrin isn't even bring it down. She has had several labs ran, but they say there is no reason for the temperature to be that high everyday. Her temperature is always changing but it has never stayed that high for days at a time. She is more lathargic, and isn't her normal happy self, but still isn't acting sickly either.

Heidi,

Is Adeline cutting teeth? I always see these symptoms in Chelsea when she is getting new teeth. Most of the time, she does not run a fever when she is ill, but will run a low grade temp when cutting teeth. Her cheeks and chin will be red and hot, and also her secretions and coughing increase. She will get very lethargic and sleep a lot. This can go on for a week or so, and ibuprofin helps. She does have autonomic dysfunction.

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