My precious son

[Beauty for Ashes 257]

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!

They say that when babies have seizures like this to increase his fat intake to 4 times the carbohydrates because what it causes the babys body to do is burn fat. Make sure you are feeding him formula that is high in fat. This diet is called a ketogenic diet. You need to find someone in algiers that works with neurology for his seizures..

Henia, contact the american embassy and tell them that you need a pediatric specialist that deals with children with neurological problems. They will most likely make the phone call for you and someone getting a call from a us diplomat will be more motivated to see you

Do you think your husband would be willing for you to go on a medical vacation somewhere with your son for him to get treatment?

[Muh and me 18]

My dear Henia, my prayers are there for you sister. I hope you find all the answers to your problems with your precious son. But I agree about getting back here to a children's hospital. They will be your best luck. Good Luck!

[sweet_peach 0]

Sounds like he could be having seizures. I would take him to a physician and have him checked out to see if he may have epilepsy. My little brother has it and there are several different types of seizures. Most people think there is only one type of seizure where the person falls to the ground and begins to shake uncontrollable, but this isn't the only type. A seizure can be as mild and see like someone is "day dreaming" where in fact they're really having a seizure so get him checked out. Like I said seizures can come in several different forms.

[prince+angel 3]

Hello!

I've read about the difficulties you've had with your precious little one and we're happy to hear you finally have some answers/solutions for him.

Bless you both & we hope he continues to improve.

[faryan 4]

Salam Henia,

Hope that your little son gets better and you and your family stay strong..

[HLM 1]

Im so sorry about ur son! Its hard when u dont have much choice there but do the best u can and insha Allah all will turn out fine. keep us updated and he will definitly be in my prayers.

[myheartwillgoon 0]

My little sister had seizures too but it was caused from asperating, or choking on milk and spit up that would seem to bring it on.

[Y's_habibitk 2]

Henia, contact the american embassy and tell them that you need a pediatric specialist that deals with children with neurological problems. They will most likely make the phone call for you and someone getting a call from a us diplomat will be more motivated to see you

this is an AWESOME idea!

[SaadBell 0]

[Sofiyya 1,687]

I'll make dua for your sweet baby, Henia. It's good that you are getting so much valuable input.

[maggieNomar 0]

Praying for your baby Henia. ((((HUGS))))

[sereia 0]

You're family is in my thoughts, Henia! I wish I had more to offer but I've never been through anything like this or know of anyone that I can think of. I wish you the best in this time!

[RIDION 0]

Hello! Hope this link helps. Please read on tonic seizures.

http://www.webmd.com/epilepsy/guide/types-of-seizures-their-symptoms

Or you can actually put in your son's symptoms here to check what he could be suffering from...

http://symptoms.webmd.com/default.htm

I pray that the little one will get well soon.

Edited December 17, 2008 by RIDION

[Henia 11]

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.

[Staashi 371]

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.

Henia, sister, I'm so sorry to read about your son. He will be in all my prayers - I pray that he will gain many kilos soon and become a chubby little baby boy. I also pray that in the future he will have perfect speech and diction. Bless you and your little family.