Microcephaly. anyone else dealing with this?? - Mothering Forums

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Old 08-29-2009, 10:04 PM - Thread Starter
 
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My son is 3 months old. was borna t 42 weeks, with no pregnancy complications, except he wouldnt get out and never dropped. I went from a planned homebirth, to induced hospital birth, after i hit 42 weeks. However, all the OB did was break my water, and my son was born 5 hours later.
he was born 8 lbs 4 oz, 14 inch head, 21 inch length. Good size
He gained weight well for the first 6 weeks.
After 6 weeks, he started with severe GERD, Apnea, and poor feeding. My ped suspected as well, that his soft spots were closed or closing, so she sent us to a neurosurgeon. My son's head has only grown 3 cm in 3 months, and he was diagnosed with relative microcephaly. He is still struggling to gain wt, and if we dont see a good gain this week, we will be going in to the hosptial, for the 3rd time, for a feeding tube. Developmentally, he smiles, coos, and makes eye contact. He rolled over lots, between 6 and 7 weeks, but has not rolled over at all for 5 weeks.

Anyway, i am searching and searching, and not finding much info, or support. I am filled with questions, and am having a hard time processing all of this right now.

I was wondering if anyone else has a diagnosis like this.

Melissa- homeschooling mom to Samantha ( 9) Gabby ( 8) Emma (6) and Diesel (12 months) and Rachel Rebecca Brock Erik Joe Noah 6-25-10 5 early miscarriages
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Old 08-29-2009, 10:13 PM
 
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There are several genetic syndromes that have microcephaly in the list of symptoms. The one my daughter has does not have microcephaly but we do have cranistenosis, which it sounds like you are dealing with with the soft spots closing too early. My daughter is being watched for a premature closure of the metopic suture. (forehead) If she develops it we will have to do surgery to release the suture. From what I hear the procedure is a lot less scary than it sounds. Is this what they are considering with your son to release the sutures? The good news is, if they do it young it does not effect brain development and he may even start to get a normal head circumference. I sure hope you can keep out of the hospital for the feeding issues. That must be so hard on both of you.
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Old 08-29-2009, 10:21 PM - Thread Starter
 
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They thought he had craniostenosis, but a CT scan showed his fontanels and growth plates WIDE open. you just cant feel his soft spots. It is weird. The doc thinks his brain is not growing, and he is looking into doing an MRI next month to see wht is going on, if his head remains small for this month. He is suspecting his brain is just not growing.
I also had 3 boys, that died inutero, for no apparant reason. Just went to my midwife, and didnt find a heartbeat. All of them had heads that were smaller than they should have been for gestational age. ( we were actively TTC and new when they were concieved.) Now his pulmonologist, his GI doc, and his neuro, are wanting to run a bunch of tests to see if he has a rare disorder or something. Maybe the 3 boys that just died, had something wrong that would not have been caught on autopsy, and Diesel has the same thing, but we were blessed to have him survive the womb.

MY head is spinning. Waiting is the worst part. I know it might be months before we know anything. Until then, we are just treating the symptoms.

Melissa- homeschooling mom to Samantha ( 9) Gabby ( 8) Emma (6) and Diesel (12 months) and Rachel Rebecca Brock Erik Joe Noah 6-25-10 5 early miscarriages
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Old 08-30-2009, 12:13 AM
 
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Our 8 month old just had her neuro visit this week. She is hypertonic, has tremors, is a difficult feeder and has microcephaly. She may be diagnosed with Cerebral Palsy - we have to wait and see what she does over the next 6 or so months. She has an MRI and EEG scheduled. We also will go see a geneticist. Her birth parents are both mentally challenged. Their medical history is not available but it is likely birth mom has an undocumented syndrome. DD is just 15 lbs at 8 month old.

Christine. Unschooling mom to Hollis, Zobey, Zeda, Anna, and Wednesday. We have a lot invested in this whole family thing with marriage kids and a mortgage. You don't just give up on the whole deal when it gets difficult.
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Old 08-30-2009, 03:36 PM
 
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My friends daughter is officially diagnosed has having microcephaly though they do not think that is the full diagnosis. She developed along schedule until 6 months old and then stopped progressing for a while. She is very tiny all around - maybe the size of a 2.5 year old though she has not been diagnosed with any dwarfism. She recently started walking at 4 (which is an amazing blessing because they just weren't sure what to expect).

I know that doesn't help at all - just another story.
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