Comunidad Hemiplejía Alternante (HAI)

Conozca, debata & respalde a otros pacientes o familias conviviendo con Hemiplejía Alternante (HAI). Participe en debates de grupo. Aporte a los temas, o tan sólo comparta su punto de vista.

Comenzar un debate ahora Debes estar conectado para usar esta función.
martacampabadal
moderador

AHCF schedules quarterly webinars for families

Parents are always eager to have an opportunity to ask medical questions important to their children's care. To help answer your questions, the Foundation has decided to host quarterly webinars on various topics for the families. The first will be held this summer.

Do you have a topic suggestion? Send requests to: sharon@ahckids.org.

Utilisation de l'huile

Bonjour , mon fils Noé est âgé de 11 ans et est atteint d'un hémiplégie alternante , le médecin qui le suis , m'a parlé de l'utilisation d'une huile ! Qu'elle est cette huile et est ce que quelqu'un l'a déjà utilisé ??

Mia figlia con l'emiplegia alternante

Con mia figlia di 46 anni ( MONICA) per 10 anni (oltre al flunagen-rivotrl) abbiamo usato idrato di cloralio che le bloccava le pares diurnei e da 3 anni abbiamo aggiunto sirdalud per annullare i crampi notturni .Da 1 anno le paresi diurne sono quasi scomparse e sostituite da crampi cervicali che riusciamo a bloccare con sirdalud che riesce quasi sempre a bloccare le rare paresi parziali mentre per le totali usiamo le ultime compresse d'idrato di cloralio .Spero che ci saranno ulteriori cambiamenti in mia figlia oppure aumenterò la dose del sirdalud anche per l'emiparesi totali,avete altri suggerimenti per sostituire l'idrato di cloralio?

paresi totale e parziale nell' emiplegia alternante.

Quale farmaco può sostituire l'idrato di cloralio non più prescrivibile? E" possibile che il Sirdalud abbia fatto quasi scomparire le paresi diurne e le abbia sostituite con crampi cervicali?Anche altri hanno crampi cervicali diurni?

marcus
moderador

18 January - International AHC Day

Hi everyone,

today we celebrate the International AHC Day.
5 years ago the genetic cause of our disease was discovered.
At 18.00 UTC a new website
http://www.humantimebombs.com/
will be launched. You can watch the film HUMAN TIMEBOMBS in 10 languages there.
Have a beautiful AHC Day!

marcus
01.18.2017

Living with AHC in New Zealand

Hi my name is Margaret. My foster son, Xavier is 9 years old now and has AHC. We live south of Dunedin, New Zealand near Lake Waihola. He started going to hospital for treatment of what was diagnosed as partial seizures when he was 6 months old. He had his first hemiplegic episode at about 8 months, but was only diagnosed with AHC when he was nearly 7 years old.

By that time he was on the ketogenic diet, which reduced his trips to hospital for treatment of his eye-flicking and head-turning to zero within two months of starting the diet. However, his hemiplegic episodes remained and continue to remain to this day. His right sided losses lead to him not being able to walk or crawl, but often when he loses his left side it is mainly his arm affected and he still walks but drags his left leg.

Right sided losses happen every week or so (3 days to 13 days apart, and 1-2.5 days long), and his left sided losses happen most days in between and can be anything from 10 minutes to several hours long. Xavier has multiple allergies and is sensitive to lots of chemicals (eg. cleaners containing sodium benzoate, chlorine, cold wash soap powder topical anaesthetic, and Remove the product used to removed EEG cement to name a few).

We noticed a relation between exposure to Allergens and these chemicals and his hemiplegic episodes. I am very interested in making contact with other families in New Zealand and also families who have members with AHC who have allergies and sensitivities.

Hi Margaret, that is an interesting trigger. I'm glad that you have found the ketogenic diet helpful! We are on keto and it helps Claire when she decides to stick to it too. We live in Auckland, Claire and her parents are an hour further north in Mangawhai. It would be great to keep in touch! Claire knows a few of the other people in New Zealand with AHC and could possibly help connect you there as well.

I will pass on your email address if you'd like?

Please pass on our address, that would be great. It is" asmjgillanders@gmail.com. We have family in Northland so were up there for a wedding in January and stayed in Auckland on the way up. We would certainly make time to meet next time we venture up that way if it fits in with your family. Thanks for your post which enabled me to get in touch.
Best wishes, Margaret

Tihana
moderador

PRIMEROS SIGNOS DE LA ENFERMEDAD

¿Cuál fue el primer signo que notaste sobre tu hijo que te hizo sospechar que su desarrollo no era el normal?

Aviso: El contenido de este texto ha sido traducido automáticamente por un servicio a terceros.

At about 3 months old Xavier was staring into the corner of the room in a fixed manner that looked odd to me. Also when the developmental nurse (Plunket nurse in NZ) pulled him up by his arms his head lagged badly, at 5 months. But the thing that sent us to hospital when he was 6 months old was when he had an episode with his head turned hard to the left and his eyes turned in that direction too. That went on for about 70 minutes until he went to sleep. That was the beginning of our journey until his eventual diagnosis of AHC when he was 7 years old.

Bonjour,
à 2 jours de vie, ,mon enfant a convulsé, sans fièvre, avec des mouvements anormaux au niveau des bras et des jambes.