Anyone deal with hydrocephalus?

[Guest guest]

We just started caring for a 13 month old who has hydrocephalus (foster

child) and wondered if anyone has ever dealt with the issue. If so maybe we

could communicate off the group. (My E-mail is honeybear50317@...)

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)

[Guest guest]

We just started caring for a 13 month old who has hydrocephalus (foster

child) and wondered if anyone has ever dealt with the issue. If so maybe we

could communicate off the group. (My E-mail is honeybear50317@...)

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)

[Guest guest]

Darla,

I personally have no experience with hydrocephalus, but Gracies "playgroup buddy" has it. He is 2 years old now and really has no major setbacks from it at all. His mother stated that his only restrictions are to try to avoid head trauma (taking into account that they will bang there head as part of a toddler ritual) until he is kindergarten age, then after that his only lifetime restriction would be to never scuba dive. This little boy is active healthy and totally boy!

Next time Grace has speech I will get a website for you. It is a book to explain chunts and hydrocephalus to children. This maybe really helpfull to you in explaining his condition to the other kiddos. I noticed it once before as it caught my eye when my neice was thought to have hydocephalus. (Thankfully she just has a big head!!)

Best wishes, and good luck........Is it 4 in diapers now??? Wow

Do you know all the things you can do with a Hotmail account? Click here!

[Guest guest]

Darla,

I personally have no experience with hydrocephalus, but Gracies "playgroup buddy" has it. He is 2 years old now and really has no major setbacks from it at all. His mother stated that his only restrictions are to try to avoid head trauma (taking into account that they will bang there head as part of a toddler ritual) until he is kindergarten age, then after that his only lifetime restriction would be to never scuba dive. This little boy is active healthy and totally boy!

Next time Grace has speech I will get a website for you. It is a book to explain chunts and hydrocephalus to children. This maybe really helpfull to you in explaining his condition to the other kiddos. I noticed it once before as it caught my eye when my neice was thought to have hydocephalus. (Thankfully she just has a big head!!)

Best wishes, and good luck........Is it 4 in diapers now??? Wow

Do you know all the things you can do with a Hotmail account? Click here!