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Henia

My precious son

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Filed: Citizen (pnd) Country: Algeria
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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!

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Filed: AOS (apr) Country: Egypt
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I'm praying for you Henia. I don't have any answers about the issues that are going on with your son. It sounds somewhat neurological but I am not expert nor do I even want to try and attempt to guess. It's wonderful that he is now sucking like he should. Lots of prayers your way sister!

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Henia, how hard for you this must be.

My son used to do that when he was really small but he didn't get sweaty palms and feet afterwards. His was more of a feeling of scaredness (like he was falling) kind of thing so I tried my best to always move him slowly to avoid scaring him.

If he stays in the "frozen" state longer than 1 or 2 seconds, it may be something neurological. It could even be mini-seizures of some sort. Maybe you could check out neurological disorders in infants or something to that effect? I hope he is ok and will pray for him.

amal


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Filed: AOS (apr) Country: Egypt
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I'll be brutally honest because when it comes to kids that's just how I am. If it were my son I would hitail it to the US, leave my husband for a while...he'll survive, and get that kid to the best Children's Hospital there is. End of story.

I'm very sorry for what you're going through with him but seriously he's had problems since day 1 and I think he needs to be in the states getting the excellent care that is available here. If it's an insurance problem there are many other options such as freecare and free health insurance for children that could be looked into but seriously I wouldn't even worry about that I'd be on the next plane to the states. Sorry if that's harsh but it just got me going reading this.


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I'll be brutally honest because when it comes to kids that's just how I am. If it were my son I would hitail it to the US, leave my husband for a while...he'll survive, and get that kid to the best Children's Hospital there is. End of story.

I'm very sorry for what you're going through with him but seriously he's had problems since day 1 and I think he needs to be in the states getting the excellent care that is available here. If it's an insurance problem there are many other options such as freecare and free health insurance for children that could be looked into but seriously I wouldn't even worry about that I'd be on the next plane to the states. Sorry if that's harsh but it just got me going reading this.

I'm glad you said that. I didn't even think of that route but I have to admit that having read what you said...I fully agree! The Children's Hospitals in USA are far superior imho and you should get that baby here and to one asap! My son was saved by the Children's Hospital in St. Louis, MO and theres another one in Houston that is ranked in the top 5 of the world. If you come to Houston, You'll have an open door with an open room at my place (providing that we actually get the house) but you are more than welcome to stay with us if need be.

amal


Visited Jordan-December 2004

Interview-December 2005

Visa approved-December 2005, 1 week later after supplying "more information"

Arrived U.S.A.-December 2005

Removed Conditions-September 2008

Divorced in December 2013

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Henia

You are a great mom! so observant and resourceful.

I will pray for you and your son. You have had alot on your plate and I hope God's strength will be with you

your dear son and husband through this time.

(F)

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Filed: AOS (apr) Country: Jordan
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henia,

im at work so i cant go searching, but i found this..it might be a little helpful (F)

http://www.babycenter.com/400_11-week-old-...164964789891.bc

I'll pray for him and your family. Good for you for studying and researching about his issue and Im glad the docs are now intervening

Lisa


"you fondle my trigger then you blame my gun"

Timeline: 13 month long journey from filing to visa in hand

If you were lucky and got an approval and reunion with your loved one rather quickly; Please refrain from telling people who waited 6+ months just to get out of a service center to "chill out" or to "stop whining" It's insensitive,and unecessary. Once you walk a mile in their shoes you will understand and be heard.

Thanks!

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Filed: Citizen (pnd) Country: Algeria
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Thank you everyone for your info/help/prayers. I feel more concerned about my son, but am trying to remain calm so I think rationally.

I have started thinking about returning ... but many things are in my way ... like first stamping of my residence here, getting my husband on board (amoung many reasons that he needs to give offical paper that I can take my son out of Algeria), how to get the money to get to the US and where to go when we get there ... I donnow what will happen but I am looking into my options.

Thank you for the siteY ... enchallah gets me one slight look into what this could be!

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Filed: Citizen (pnd) Country: Algeria
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I read the article ... basically sounds like what my son does - arms out, freezing ... seizure like eposide ... like he is scared ... I don't think he is holding his breather as the article suggests but I am not doctor, so I cannot say for sure. What the hell ... going to find someone who can tell me what this is .... Thanks again Y for the article. Least, now I know it happens to others ... not just my son and that I am overreacting like what my in-laws say I am. BUt from reading it is clear that this is either neurological or that he isn't liking something we are doing. Enchallah I pray it is the latter.

Edited by Henia

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Filed: Citizen (pnd) Country: Morocco
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Henia,

I am SO sorry that you are having to go through so much. I have often thought of you and hope that the package I sent reached you...especially now after all that you are going through.

I can't imagine how you are feeling watching your poor child go through all of this. I will keep you lifted up in prayer and thought.

I just looked up a couple of things...don't know if maybe you have seen this or not. Hoping anything might help.

Inshallah, your precious son will be healed.

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Filed: AOS (apr) Country: Jordan
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I read the article ... basically sounds like what my son does - arms out, freezing ... seizure like eposide ... like he is scared ... I don't think he is holding his breather as the article suggests but I am not doctor, so I cannot say for sure. What the hell ... going to find someone who can tell me what this is .... Thanks again Y for the article. Least, now I know it happens to others ... not just my son and that I am overreacting like what my in-laws say I am. BUt from reading it is clear that this is either neurological or that he isn't liking something we are doing. Enchallah I pray it is the latter.

Thats why i added it, Sometimes it helps just to know you arent over reacting like you said. I think momma's know when something isnt right and you should always trust that. :)

Prayers for you

(L)

Lisa


"you fondle my trigger then you blame my gun"

Timeline: 13 month long journey from filing to visa in hand

If you were lucky and got an approval and reunion with your loved one rather quickly; Please refrain from telling people who waited 6+ months just to get out of a service center to "chill out" or to "stop whining" It's insensitive,and unecessary. Once you walk a mile in their shoes you will understand and be heard.

Thanks!

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Filed: AOS (apr) Country: Romania
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Henia,

I am praying for you and your son. I know obsticles with our kids are hard, im dealing with my 3 yr old sons autism, and it gets harder everyday. The only thing we can do as mothers is pray and research. Google has become my BFF, as im sure it will become yours. I wish you the best!

hugs,

Tara

Edited by Sinergy

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Filed: IR-1/CR-1 Visa Country: Egypt
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Sounds like infantile seizures.....usually infants grow out of them but, in order to get proper treatment, he'll need a proper diagnosis. I hope the little one gets the care he needs.


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Filed: Citizen (pnd) Country: Algeria
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Thanks for the word above m and n ... looked up infantile siezures ... saw the videos ... exactly like my son ... elhamdullah I posted today ... VJers always seem to come to the resuce! Thanks everyone .. now have something to show the doctors!

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