Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 Sorry Im so late on the introduction thing, its been a bit hectic around here lately! Im Keely, in 23 years old, my husband Dave and I have 2 boys, whos 28 months, and Tyler who is 9 weeks. I have had a bizarre medical history that was never explained, including scoliosis, Paroxysmal Atrial Tachycardia, Heart Conduction Issues, Pericarditis, cough varient asthma, kidney 'issues' (they bleed, ALOT... somehow my doctors didnt see this as a major problem...), after B was born i developed SEVERE orthostatic Hypotension, the worst my cardiologist had ever seen... during a tilt table test, they stood me up for 4 and a half minutes before my blood pressure was 0, and my heart rate was over 160. I take beta blockers and a steroid to keep my blood pressure up. In '03 i was seen at Mayo and told that my problems were autoimmune, and i didnt have to worry about progression. I stabalised that fall thankfully. Chapter 2. lol! was very healthy for the first year of his life... he got one cold, and that was it... he was a happy normal infant. at 12 months he got his MMR shot, and that began a very long difficult road for us. He had the normal reaction, slight rash, low fever, nothing major. but it never went away. by January he was running VERY high temps (104-106) and the rash was everywhere... I took him to the ER, they told us to keep treating with motrin and tylenol. I took him to the doc, they said it was a virus, and i was being paranoid. On January 15th (off and on fevers all along) he started falling (he had been walking at 8 months, and was very stable by 1), within 4 days he could no longer stand. I thought maybe he had hurt his leg, so i took him to the doc, who sent us to the hospital when she heard a heart murmer and noticed his feet were scrunched up and turned in. In hospital he had some blood tests and xrays, as they were pretty sure it was just an injury. His CK enzymes were high, so we wound up admitted and told he may have Muscular Dystrophy. All I knew about MD was that kids died of it, and I was terrified. over 4 days he had a bone scan, CT scan, MRI, EEG, nerve conduction studies, x rays, and a spinal tap. All were normal (the MRI was only of his spine). we were sent home and told it was viral and should pass, but to follow up with our neurologist. In May I realised he was way behind other kids his age in walking and balance, and he got sick constantly, and still wasnt saying any words. I took him to the neurologist and told her something was wrong. She said he seemed healthy and she didnt think anythign would show up, but she would order a brain MRI just to cover our bases. She said at worst it was a bit of damage from the virus he had in January, but that it was unlikely we were dealing with anything really serious. This was the same week I found out I was expecting again. the MRI wasnt normal. he had 'patchy signal prolongation' in the deep white matter, and the basal ganglia. this was the first time we ever heard the word mito. she ordered more blood work. his lactic acid was elevated, and we got referred to genetics. In October '04 he got his muscle biopsy, results were in Jan '05 as a Complex 1 Deficiency. Hes been off and on the cocktail since, we are trying to very slowly introduce it now,a s when we started it all at once, he didnt tolerate it well. so far so good though! Tyler was born Feb 18th '05, and is very healthy so far! his initial CK enzymes were elevated, so that gave us a scare, but his repeat came back normal! We see the genetics doc in May when we will have more bloodwork on both boys to see where were at... were hoping Tyler dodged the bullet! So far is very mildly affected... he has Apraxia of speech, meanign he doesnt talk but actually understands far more than most 2 year olds. he has a very wide Sign Language vocabulary, and is very 'talkative' with anyone who can understand! He has tremors in his upper body that have actually been getting worse over the past month, but are not yet bad enough to interfere with too much. He wears AFO's as his ankles get quite weak and he falls alot, especially if hes tiered or sick. his Blood sugar drops if he doesnt eat constantly, but recovers well with apple juice. so far its all been stuff we can control, and were praying hard it stays that way! Keely Quote Link to comment Share on other sites More sharing options...
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