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8 yr old with increasing memory loss

I have an 8 yr old daughter whom we adopted.  We have had her since birth (came as a foster child). She was born at approx. 28 weeks via c-section due to her mother having a staff infection from a uti, high blood pressure, diabetes, and morbidly obese. Her birth mother was also using drugs/alcohol with no prenatal care.  
My daughter was intubated at birth and again about 1 week later.  She weighed 4# 3 oz at birth.  She came home at 1 month of age along with oxygen and an apnea monitor. She had choanal atresia (surgically corrected at 11 months,  two tethered cord surgeries (one at 3 yrs and one at 4 1/2 yrs), tonsils and adnoids removed at age 4 yrs and 5 yrs.  She did not use her right side for 6 months after birth. Did not sit unassisted until about 14 months of age and was still sitting 'offset from her legs' when she did.  She has been slow developmentally, but with an extremely happy disposition.  She has always had some short term memory.  She has no real diagnosis as far as memory.  My daughter always had more 'bad days' than good days when she was little, meaning she would be extremely shaky (almost parkinson's disease like) choked on her food extremely easily until about age 5 yrs. She wears AFO's on her lower legs due to stumbling and falling. She is also severely far sighted, corrected with glasses.  Age age 4 yrs we started seeing her smile on one side of her face only.  She would sometimes drool from the side of her mouth and slur her words at this time also.  She had a 24 hr video EEG done which was negative. She saw a neurologist who stated she was suffering from 'silent migraines' and needed medication to take daily.  He stated if it didn't help that he would increase the medication.  I feel that this is a simple 'fix' and didn't agree to it.  She has had MRI's for her tethered cord which also checked for chiari (no chiari).  When she was born her neonatologist stated she had calcification on her brain (noticed from ultrasound).  Over the past 1 1/2 years my daughter has had more good days than bad days.  She also has chronic uti's due to an anterior set anus.  For the past 1 1/2 months my daughter has had increasing short term memory loss.  I'm very concerned for her at this point because I've also noticed two days ago that she can no longer spell words.  Her handwriting (which was never good to begin with) has deteriorated along with any spelling she has ever had.  She has always loved school and given it 100% and is mainstreamed into a regular classroom.  She is seeing the difference in herself and becoming upset about it.  
Please help!  I don't know where to turn at this point.  Suggestions?
Thanks.
4 Responses
1226884 tn?1272085204
Hi mummyincharge...

I am a little concerned about all of this due to the fact that their is a very prominent aspect in her medical history that would cause the degradation as you are seeing.  The fact that she has had a history of chronic UTIs has me the most concerned...and she needs to be seen as soon as possible...do not wait...because it sounds like a very serious bacterial infection...not silent migraines as you have been told.  The reason I am stressing so much concern on this is simply because I have recently just completed research in this area.  There is a possibility that this condition could lead to STSS...even though this condition primarily focuses on the Streptococcal bacteria...I can tell you that once this bacteria has entered her blood stream that it breaks down a crucial molecule utilized by white blood cells...making them defenseless against bacteria strains...not just the strep bacteria but other bacteria strains as well...such as those that cause UTIs.  What I am telling you is to get her in...please.  Print this up to take it into your doctor if you need to.  I will gladly assist you in providing some very crucial information once we have established that she indeed has an infection.
1226884 tn?1272085204
I do want to add that if your daughter has a catheter...this could be a Staph bacteria strain with potential to leading to Toxic Shock Syndrome...it is the Staph version of STSS.
Avatar universal
My daughter has an anterior placed anus.  Thus, when she has an episode of diarrhea, it causes a UTI.  She is on a nightly dose of macrodantin on a nightly basis.  She has regular urine cultures done on almost a weekly basis, this includes the sensitivity testing.

I just spoke to someone in the genetic clinic in the children's hospital as she has been seen there in the past, but the last time was about 3 yrs ago.  They made a comment of prader willi syndrome and maybe other things and are making an appointment for her in the neuro metablic clinic for next week.


1226884 tn?1272085204
I just wanted to cover the most important factor first...many times bacterium is overlooked...and I just did not want that to happen in your case.

Has your daughter ever been tested for Fahr’s Disease?  Much you have explained sounds very similar to that...including the calcification.  Just might be something you want to have checked as well.
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