Subject: Re: pacemaking-DARLA

[Guest guest]

Darla: sorry -I am on digest and don't always read the digest every day. Anyway, the reality is no one knows why Sam's heart rate dropped so suddenly. He had not done that since he was very young and all of those times, I just stimulated him and it came back up. It had truly been 5-6 years. When the alarm went off, it was not low enough that it would have alarmed anyone but I took one look at him and as a mom I knew he was in trouble. I am a nurse but it was my mom instincts. We did not do an autopsy. Maybe we should have...I just don't know. One main theory is that he had a brain bleed - he had been bleeding in his joints that week which for Sam should not have happened. He was on such a high dose of al of his blood products, including Factor 7a, and he should not have been bleeding bad enough for joint bleeds. I am told that with a brain bleed - the heart rate will suddenly drop. And I am told that the doctors always thanked God that he had not had a brain bleed ever - they felt it was a miracle he hadn't. So that is one possibility. Another possibility is that he had a stroke and that could account for his symptoms and the suddenness of it. I guess that is all we know. I do know it happened too fast to get to the children's hospital and the community hospital was not the best place for him to be. I cannot say any more than that but I would urge each and every one of you to have a plan - in writing - from your physician that specifically deals with where he/she prefers your child be transported, and that a pediatric intensivist or your own pediatrician should be called immediately. I would also find out what the policies are in your city/township as to what the paramedics can do or not do, where they generally will take your child, and what additional training they need regarding your child's specific needs. On this subject: If you live in Wisconsin, the ironic thing is that I had just started planning a 1/2 day conference about this and other emergency preparedness issues for children with special needs (natural disasters, etc.). Unfortunately, I am now speaking because I am in a position of knowing about these issues which are often fraught with local politics and funding. The red cross, another parent and a child alert representative will also be giving presentations. The conference is May 14 (Saturday) from 8:45 to noon I think. It is at a conference center 1/2 mile from Children's Hospital right off of 45 and Watertown plank road. It is $5 and I think that is refundable if you show up. You can call for more information, to request a brochure or to register. If anyone not living in WI is interested, let me know and as I develop my talk which will include Sam's encounter with the paramedics and community hospital and create a "to do" list for parents in order to be prepared, I will send that to you by email. However, to answer your question Darla -we don't know the specific cause of the bradycardia. It did seem that in the last 12 months he was getting more and more tired and sometimes his little body seemed to need more and more help to compensate. I refer to mito as a disease that literally starves our children for energy. Anne

[Guest guest]

Anne,

If possible I would really like to be able to get a copy of your presentation if possible. Thanks.

Meagan

Mom to Sophie 11 months Complex I, III, & IV deficiency

www.caringbridge.org/ky/sophiesong__________________________________________________

[Guest guest]

Hi Anne;

I would also appreciate a copy of your presentation. This has been a concern of ours as our children's hospital is 1.75 hours away. The local hospital does not have the ability to deal with pediatric cardiac patients, although Jonah has been inpatient there when his cardiac status is stable. It is quite scary to think of him being transported there in a crisis situation.

We have sent all of Jonah's emergency information to our local paramedics...but I am sure that your checklist has many things that have not even cossed our minds.

Thanks so much for all you do.

Take care.

Diane

Mom to Jonah and Kiah

If you live in Wisconsin, the ironic thing is that I had just started planning a 1/2 day conference about this and other emergency preparedness issues for children with special needs (natural disasters, etc.). Unfortunately, I am now speaking because I am in a position of knowing about these issues which are often fraught with local politics and funding. The red cross, another parent and a child alert representative will also be giving presentations.

The conference is May 14 (Saturday) from 8:45 to noon I think. It is at a conference center 1/2 mile from Children's Hospital right off of 45 and Watertown plank road. It is $5 and I think that is refundable if you show up. You can call for more information, to request a brochure or to register.

If anyone not living in WI is interested, let me know and as I develop my talk which will include Sam's encounter with the paramedics and community hospital and create a "to do" list for parents in order to be prepared, I will send that to you by email.

However, to answer your question Darla -we don't know the specific cause of the bradycardia. It did seem that in the last 12 months he was getting more and more tired and sometimes his little body seemed to need more and more help to compensate. I refer to mito as a disease that literally starves our children for energy.

Anne

Please contact mito-owner with any problems or questions.

[Guest guest]

Maybe you could just post a copy to the group if you can so all of us could

view it.

Hope it goes well for you.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a

photo look into Mito)

Darla: mommy to

Asenath (5) Possible Mito, CNS Vasculitis, strokes, migraines, seizures,

G-tube, hypotonicity, disautonomia, SID, global delays, cyclic vomiting,

bladder issues, some wheelchair use, eye issues, gastric emptying issues...

Zipporrah (18 months) Possible Mito, strokes, neuro-motor planning, SID,

GERD, dysphasia, G-tube fed, speech delays, extreme fatigue, 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)

Joey (16 months) with hydrocephalus, dysgenesis of the corpus callosum,

encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays,

left hemiplegia (arm)...

(16 months) SID, dev. delays, right hemiparesis issues...

If you live in Wisconsin, the ironic thing is that I had

just started planning a 1/2 day conference about this and other emergency

preparedness issues for children with special needs (natural disasters,

etc.). Unfortunately, I am now speaking because I am in a position of

knowing about these issues which are often fraught with local politics and

funding. The red cross, another parent and a child alert representative

will also be giving presentations.

The conference is May 14 (Saturday) from 8:45 to noon I think. It is at a

conference center 1/2 mile from Children's Hospital right off of 45 and

Watertown plank road. It is $5 and I think that is refundable if you show

up. You can call for more information, to request a brochure

or to register.

If anyone not living in WI is interested, let me know and as I develop my

talk which will include Sam's encounter with the paramedics and community

hospital and create a " to do " list for parents in order to be prepared, I

will send that to you by email.

However, to answer your question Darla -we don't know the specific cause

of the bradycardia. It did seem that in the last 12 months he was getting

more and more tired and sometimes his little body seemed to need more and

more help to compensate. I refer to mito as a disease that literally

starves our children for energy.

Anne

Please contact mito-owner with any problems or questions.

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