My precious son

[~*Dorothy*~ 2]

Henia,

Your son and your family are in my thoughts. I've been thinking of you and glad to see your posts again. I am hoping that you will find adequate help for your little one and please don't hesitate to let me know if you need anything.

Take care,

D.

[Meriem_DZ 37]

Salam sister Henia,

You and your family are in my prayers! I hope your little fellow is feeling better soon.

Take care,

Meriem

Edited December 17, 2008 by Meriem_setif

[Beauty for Ashes 257]

Hello everyone!

Thank you ALL again for all the great info, links and prayers! I was really feeling lost not even knowing what to google, to have even a point from where to start ... but as always VJers to the resuce ... getting some answers from the sites. Taking Kat's advice husband and I are going after weekend to embassy to see what they have to offer as help ... maybe some doctor out there. I am not relaying on any locals as their options are bogus.

Wishing everyone a happy holiday ... and thank you from the bottom of my heart.

I am sorry I didnt call you back.. my skype ran out but I was going to tell you that I personally think the US EMBASSY can make some phone calls to the teaching hospital for the University of Algiers and they can at least tell you what they can do. There may be nothing except observation although I know later they can give them steroids . It may just be the onset of early epilepsy like what you said you have and you are just more in tune with things because you are looking closely..

Here are the phone numbers and emails of the top epilepsy experts in Algeria . They are actually members of the teaching hospital at the University of Algiers

Here you go.. I AM SURE THEY WOULD LOVEEEEEEEEEEEEEE to hear from an American. Maybe you can offer to help them build web pages for free advice and advocacy. You can start out just by calling them asking them for advice and where is the best place to go.

Algerian League Against Epilepsy

Prof Mahmoud Ait-Kaci-Ahmed

President

Alger, 1600

Algeria

Phone: +213 21 96 33 28

Fax: +213 21 96 38 25

E-mail: maitkaci@hotmail.com

--------------------------------------------------------------------------------

Dr. Amar Lebiod

Secretary

Hopital Parnet

Chief Pediatrics Department

Hussein Dey

Alger, 16000

Algeria

Phone: +213 21 49 56 21

E-mail: maitkaci@hotmail.com

--------------------------------------------------------------------------------

Dr. Saadi Ibrahim

Treasurer

2 Rue Said Guendouz

Immeubel Casoral

Alger, 16000

Algeria

Phone: +312 21 23 56 26

Edited December 17, 2008 by Hanging in there

[Caladan 19]

I hope the doctor comes through for you soon; there's plenty of things that can cause seizures that aren't epilepsy, and while the Internet is a good resource, it can sometimes make you worry more (like when you look up "headache" and get "brain tumor" as a possible cause.)

I think you're doing the right thing in enlisting the embassy's help; I wish you all the best and I hope he gets good treatment quickly.

[Henia 11]

I figured that Kat. But your call meant alot ... thanks. I snapped out of it for a bit. Thanks for those docs. I will be checking into them after the weekend.

Caladan: You are right ... Net does have alot of info ... of all which is making me nervous ... yet I am thankful I am having something to go on. Buuuut still scared out of my head. Everything I read is noooo good.

[brnidokiegurl 0]

Girl you have gone thru to much lately, with the family not helping or believing now you can not wait on health issues, pls bring that baby home where he can get some help dont take chances any longer with his health, now he is your first priority make it happen!!! it is so not safe to be a computer style doctor

[Malarie 0]

Henia,

I am posting only what I have experienced myself with my son. As a newborn my son had the same type of actions as you wrote about above and long story short what my son was having were seizures. I can only explain the seizure as that he was all of a sudden in complete shock/fear - arms out (as you said above) it was like he was reaching for help and always ending in a terrible crying fit. He was diagnosed with epilespy and is medicated for it. I would have never thought that what he had was a seizure as it is not "typical" of what a seizure looks like (to me at least).

I am not a doctor so I cant say this is your sons case as well, and I pray to God it is not, but I wanted to let you know my experience.

You may want to consider taking him to a neurologist because if what he is having are seizures and he is having them regularly it is not a good thing. Every seizure that occurs damages the brain.

I will pray for you and your family.

Malarie

[Henia 11]

Thank you again everyone for the support, info and love. =)

[Carolyn 1]

Henia,

My son also was tongue-tied. I was also having recurring problems with breast-feeding (clogged ducts and milk blisters--ouch! Felt like I was being stabbed in the #######). Our Pediatrician recommended going to an Ear, Nose, Throat specialist. The specialist guy took one look at our son and got out a scissors. No painkillers, no anesthesia--he just had me hold my son on my lap while the nurse held his tongue and the doctor snipped.

He had the procedure done at 7 weeks, and I am happy to say that it appears to have completely healed. He can use his tongue much more effectively, and I have had no real breastfeeding issues since then! The doctors said it is unlikely that he will have any problems with speech.

Best of luck finding a good doctor in Algeria.

[ksa2usa 0]

Esalaam/Hello!

It pains to write this thread concerning my son ... but maybe I pray someone can help ... Since he was born I have had difficulty after difficulty with him feeding. I tried everything suggested, read and even things I dreamed up myself. Some worked for a while and others not at all.

I had noticed that my son had a slight difference with his tongue then let's mine or my daughters ... but not being able to remember what my daughter's mouth looked like as a newborn ... and also thinking every child is different I wrote it off.

Months went by ... even more difficulties with his eating. Not gaining weight as I "thought" he should ... crying and obviously suffering.

I sat online daily reading, looking for some way to help this ... thinking the problem stemmed from me. My milk low, not flowing as fast as it should, etc etc. Even supplementing him with formula ... he could barely down it ... choke mostly and cry cry cry some more. I know this was not normal but didn't know how to help him.

But elhamdullah last week, by the mercy of God ... I stumbled upon a short, very short article that mentioned a condition called Ankyloglossia (aka tongue tie) ... from what I read ... it seemed like they are were describing my son ... EXACTLY!

So I went from there googling it ... reading all the websites ... my husband thinking I was insane sitting up all night reading! But elhamdullah, after a few days of my research I was ready to make the announce to my husband ... I knew what was gone! My husband seeing the evidence ... also saw that this was what probably our son has ... we went to the doctor, who affirmed my thinking.

So anyway, long story short ... we went to 2 doctors ... Youcef's ped and also an oral surgeon in Alger ... he got his first "cut" yesterday ... I went to the app but did not dare go into the op room ... I'm too chicken when it comes to my children in pain. I cried all day (ye I know) LOL!

But elhamdullah ... this first intervention of sorry to say many ... I have already seen much progress in him. He within 24 hours starting "wanting" the breast without being a manaic as he had been before. He sucked alittle not really knowing how I think ... I was thinking to forbid the pacifer so he could ge back to breast quickly but my heart couldn't take seeing him in pain. So just gave it ... and gave it to him!

He is still on meds ... but as I said I see progress. He still isn't eating as he should ... but he is doing better elhamdullah. He is able to move his tongue now ... up and down and cry normally ... unlike before when his tongue was completely attached to the bottom of his mouth. And also the tongue is now uncurled since a part of the frenum had been removed. He is beginning to understand how to suck.

We go back to the surgeon at 6m to revise, probably cut some more ... then later when he is talking ... speech therapy and others they said. We will see how it goes ...

Also since his birth he has been having these "seizure" like eposides where he sticks out his arms (like when someone trys to scare you saying Booo), his eyes get very big and he is very rigid, wanting to shake but seems to be frozen. Like if he is scared or shocked ... how else to exam it. If we hold his hands, literally holding his arms down he instantly gets out of this "trance" but starting whaling scream ... as if he is hurt. But if we donnot hold him down, this will go on for about 1 or so. Really no way to comfort him after these eposides end.

Before, this only happened sometimes when I took off his clothes for bathing or during diaper changes ... I simply thought he was cold. Unfortunately, I heat the room as much as I can buuut is still cold. So I didn't think it was something to worry over. And also this only happened a few times ... but in the last 2 weeks it seems to be happening daily ... several times a day. And not only when he is unclothed. But also when I was feeding him, once while we were talking to him and several times when he put down after he fell asleep in my arms.

It only happens when he is on his back (not when he is laying on stomach or side), his body as I said gets very rigid and want to shake but he is frozen(his little hands garb for something to hold on it, as he were falling), his hands and feet are icy cold even though he is dressed warm. After his hands and feet are sweaty.

I would like to know if anyone out there knows what this is ... why or really anything to help me. I have not even the slightly idea what to google to find out what this is. Ped said maybe he is scared. I am not sure ... from everything that has happened here I really don't trust a d#m# word they tell me here ... but why would he be scared really?

There is no history in m family or my husband's of mental illness, seizures or any head related conditions that I can think of that would make a person do this. I have really idea about seizures either ... I read what I could online ... but still I am not sure as he is a baby. But doctor did tell me when I was pregnant with my son I had epiplepsy but it was really preclampsia and low iron that made me faint. Doctors here are bascially idiots ... so I have to self-dignose what this is. I just ask everyone please spare a minute when you are praying to pray for my son ... that he at least can eat. He is very thin(more then 2 kg less then he should B) pale and very moody (I am sure since he is suffering) .... And also if anyone knows anything about this condition please reply to this thread or PM me. It is much appreciated!

Thanks and God bless!

Hello, I'm not sure what the other ladies have mentioned because I didn't read the other replys...im on my way out the door. I'm happy first of all that you figured out your son's condition and let your mother's instinct take over and that you had the courage to bring it up to the doctors...i can't believe they missed it, honestly! That is something they should be checking for.

Also, the arms out, wide eyed behaviour seems nothing more than the infant startle reflex. if they are scared, startled, or feel unsafe (maybe you put him down too fast, or removed his clothes too fast) then it is a normal reflex to flail out the arms. every infant is born with this reflex and it is something regularly chekced at infant checkups with your doctor. Of course, get it checked out if you are scared about it. your ped should be able to refer you to a neruologist and have simple tests done. Also, if you think your son is experiencing a siezure..you should never ever try to hold him down or make it stop. simply put him down in a place where he cannot fall, cannot hurt himself and wait until it is done.

best of luck to you.

[kenneme 2]

Hope things are going better for you and your son. It's been a while since there was activity on this post, but I thought I'd mention the possibility of comin to France if you can't find a good doctor you trust in Algiers. Flights are short and cheap and if you come here to Paris there is even the American hospital, and most healthcare is affordable even for serious issues... Just an idea - might be more realistic then rushing all the way back to the US. Praying for your health and your son's.

[Sandrila 1]

how are things going for you and your boy Henia?