Needing advice for my son and daughter

by Amy
(Valdosta, GA)

I just found this page tonight and feel so much better knowing I am not alone in all of this madness. Both my son, 5 and my daughter, 4 have been receiving therapy for 2 years now. They have many symptoms which have been unexplained to us, the first of which was effort with urination since birth. They both developed normally it seemed within the first year of life, hitting developmental milestones on time, other than this constant effort with urination. They also both have had GERD since birth and are still on medication for this as they throw up at least 1-2 times/week without it. Since they were both around 2 1/2, they have received PT,OT,and Speech therapy for a multitude of symptoms they started developing at that time (or maybe that's just when we started noticing them in each child).

Since around 2 years of age, they both have shown a regression in physical activities, my son being much worse. They regressed in ability to climb and master some of their other gross motor skills. Their PT says they are definitely weak in their trunk area (they have always had problems rising up from lying flat on their back). They both exhibit almost every item on the sensory processing disorder checklist and my son especially has many fine motor skill problems.

A year and a half ago, a urologist finally diagnosed them both with an enlarged bladder but because they are voiding ok and not getting infections (which I don't give them junk like soda, etc), they were not too concerned about it. We had been seeing a geneticist for awhile and he had ran 2 different sets of tests on my son and everything came back ok. He wanted us to see a neurologist again (we've seen a few who always say they look normal, what does that have to do with it?). The geneticist definitely felt like it is very neurological in nature. Basically, for 5 years, we have been passed from specialist to specialist.

We've recently relocated, my husband is with the AF, and we've gone without therapy for over 2 months now (nothing is quick with the military) and it has been ROUGH around our house. Someone is always getting hurt, it is just really stressful at times. Our new pediatrician has made the referrals for therapy and wants us to see a developmental pediatrician which I am happy with because we have wanted this for awhile. We are also getting a referral for another urologist and possibly neurologist here. My question is, could all of these symptoms just be the sensory processing disorder? Even the enlarged bladder and constant backaches and headaches my son complains of? We have known of SPD for some time from our previous OT and always worked on things but our children just seem to be extreme in all of these problems, all of their senses are affected. Now that my son is 5, school is becoming imminent, and I just don't know that honestly he could handle a day at school. He gets so exhausted. At 5, he never fights me for a nap, and I know from friends that it is unusual with their children.

We just keep thinking there has to be more to this with the tiredness and muscle weakness. Within the past 2 weeks, my son is complaining of his bones hurting. We really feel like he is just uncomfortable all of the time. I just wondered if anyone out there has any advice or experience with the muscle problems coexisting with the other symptoms? We are willing to try anything and go anywhere. Well sorry to write a novel! Thanks so much for listening!