Developmental disorders/learning disabilities/genetic syndromes & more support group

[essie0828]

So I've been reading some about ginkgo biloba (sp?) and it seems that there is reason to believe that the increase in blood flow caused by it has been used to treat Alzheimer's and multiple ischemic event dementia. It's also been used to treat Raynauds disease. I'm thinking that the damage to DDs brain would have to be somewhat similar to someone who has dementia caused by stroke, maybe just a different area. I'm wondering if there would be any benefit/ risks????

 

[sequeena]

Hope you are feeling better soon bumpin yay for getting through to someone! T will most likely need tubes too so that's 3 kids including Hayley.

essie it's a condition that runs in my family, mostly on the male side. The tips of his fingers go red, then white, his lips turn blue and he shivers uncontrollably. The first time he did it we thought he was having a fit and rushed him in. I did not realise anything could help (bar making sure he was always wrapped up) so I'd be interested to know about that ginkgo stuff.

Now the weather is turning kids are wearing coats but T is in his winter hat, gloves, winter coat and heavy blanket (if he's in the pram as I cannot find the bloody footmuff). Even in the summer I carry a light blanket. If I do all this he has no problems but back in may we went to folly farm with my family. He had lots of fun all day then suddenly started shivering and his lips went blue so he had to have his coat, a hat and 3 blankets on him - in may!! I do worry about him in the winter (he's sleeping more in our bed at the moment so he has our body heat too) but I just have to remember to keep everything with me.

Sorry for the essay

 

[essie0828]

No apologies needed, I was curious. That would have scared me to death if Hayley did that! Poor lil guy So he has a vascular reaction to the cold that causes the shivering, white fingers, and blue lips? That's my understanding from skimming Dr. Google anyway Supposedly ginkgo (an herbal supplement here in the States) has some properties that cause dilatation of blood vessels, particularly the tiny ones in the brain, fingers, toes ect...... but who knows really if it helps? In theory it seems it would.

Goodness you will have to get creative with keeping him warm in the winter. Our winters are pretty mild, we haven't seen a good snow in ages! We do get ice storms/ freezing rain quite a bit. Those are useless, destructive, and miserable. Ugh! Hate em. I miss a proper snow DD has never seen a snow man

 

[sequeena]

Sorry I've not updated for a while, how are we all?

Thomas had the nasal flu spray on Tuesday. He was great. He was eating as they did it

I've finally been able to sort his speech therapy. He starts group sessions on november 7th and will go weekly until december 12th.

His sleep actually wasn't too bad last night. I took him for a walk in the pram around 8pm. He fell asleep at 9pm woke an hour later then slept until about 2:30am. Sean brought him to our bed and he slept until 8am I think the fresh air helped.

 

[sun]

Sequeena - Wow that sounds like a great night! When he wakes is it for a long time? My daughter goes through phases of waking for an hour or 2 in the middle of the night zzzzz She normally sleeps from 10-7am waking twice - but usually it isn't for too long so it's fine. The occasional phase of waking for hours definitely isn't though.

 

[sequeena]

These wakings were only for a few minutes usually it lasts 3-4 hours

 

[sun]

These wakings were only for a few minutes usually it lasts 3-4 hours

Wow that's great! I really really hope it continues. Hours-long night wakings are awful and make it so hard to function. With my daughter they are usually a phase so I really hope this is the start of better sleep patterns for T!

 

[essie0828]

Hi Ladies

Sequeena I hope T is changing his sleep patterns for the better and I saw a little boy that looks so much like T at the rehabilitation hospital today. He was Ts' American doppelganger for sure!

I think that every female that works at this place is pregnant! Honestly there are 6 ladies including Hayleys therapist that are pregnant. Today she told me she was having a boy and he's due on the same day Hayley was. Girls I got babies on the brain or something

 

[bumpin2012]

I officially have a drunk walker! he's falling every 10 steps, but getting back up and continuing on his way... holy crap, I have a toddler!

 

[bumpin2012]

hopefully this is the start of better nights for everyone in your house sequeena!

 

[sequeena]

He's back to normal now

Ah how cute another T

So glad he's walking bumpin x

 

[sun]

He's back to normal now

Ah how cute another T

So glad he's walking bumpin x

I might have missed it, but has anything happened with the melatonin? I know some kiddos it has worked really well for xoxo

 

[essie0828]

Go Gabe Go!

Sorry sequeena I was really hoping the aromatherapy was working for you guys. I'm curious about melatonin to. Has his pediatrician prescribed it or are they wanting to wait to give it to him?

 

[sequeena]

We won't see hispaed until sometime in November which sucks

 

[RachA]

We finally got a letter through today for Esther's next lot if speech therapy it starts next week for 6 weeks. Unfortunately we are away for the second one so I've called to tell the this-they've said they'll add another session on to the end but they've said that every time and it never happened. So hope it does this time.


It was Esther's birthday today. It's days like this that I realise how different she can be. She's 4 but still had no real idea of what was going on other than getting birthday cake. Most of her presents are clothes because there is no point in getting toys for her!

 

[sequeena]

Happy birthday Esther I hope she's had a lovely day

 

[RachA]

Thanks-I think she had a good day. She's celebrating over 3 days as OH hasnt been around today. So she is having our presents tomorrow along with my in-laws things. Then she'll have my parents on Sunday as they aren't available tomorrow. It also means she gets two cakes (1 big cake that I've cut in half and decorated seperatly)

 

[bumpin2012]

happy birthday Esther!

 

[essie0828]

Happy Birthday Esther!

 

[sun]

Happy Birthday Esther!!
B turns 4 in November and we're trying to plan a party but it's tough as he still doesn't really get them either. When we go to one, he just does his own thing and doesn't really do group activities or play with the other kids. He does like presents though!